Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

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Link to Independence Seekers Project

Link to ADAPT

Link to Kentucky ADAPT Facebook

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

Read transcript

To reach KATSNET by phone, call 859-218-7979 or find them on the web at Katsnet.org

For the Assistive Technology Locator

For The Buck Starts Here Funding Guide

Other helpful links:

Commonwealth Council on Developmental Disabilities

National Organization for Rare Diseases

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

Read transcript

To speak to someone at Independence Place, call (859) 266-2807.

Register for the “My Silence Roars” book launch event

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

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Sign up to Dr. Rabchevsky’s newsletter

Visit the KCSCI Facebook page

Visit the “Three Men and a Spinal Cord Injury” podcast

Here’s the article written by Kara Ayers that was referenced in the interview

Visit the "My Silence Roars" Book Page on the Advocado Press website.

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

Read transcript

Helpful links:

International Social Role Valorization Association (ISRVA)

Marc Gold & Associates (MG&A)

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

Read transcript

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

Read transcript

Spontaneity Is a Stranger I Know By Grace W. Dow

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

Read transcript

Birdability.org

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

This podcast is powered by Pinecast.

Read transcript

Archinect News - With no wheelchair ramp, Tony Award winner Ali Stroker couldn't join her cast and crew on stage to celebrate their win - By Justine Testado

Episode 51: Who gets to decide what is reasonable?

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

Email demandanddisrupt@gmail.com to request a higher quality transcript.

You can find the transcript in the show notes below when they become available.

Transcript

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Welcome to Demand and Disrupt, a disability podcast.

I'm your host, Kimberly Parsley.

And I'm your cohost, Sam Moore.

Now don't tell anybody, Kimberly, but I am as we speak on my, not second, but third cup of coffee.

Wow, listeners, you're, you're, you're in for a, in for quite a show here.

Let me tell you, we're bringing some different energy to the show today.

Yeah.

So y'all will just find out.

You'll just find out.

You're just along for the ride.

Whatever happens.

My interview today is a fascinating interview I had.

It's a Cal conversation that I had with Keith Hosey, roving reporter, Keith Hosey and Carissa Johnson, who we have newly designated to be our disrupter in chief.

Disrupter in chief.

Yes, yes, yes, yes.

She's got an official title now and somebody's got to be, there you go.

It's her, it's her.

And we are going to talk about disability identity and representation.

And you know, Sam, you and I are going to talk about that some here in a minute too.

But you know, I think next time that we do a Cal conversation, I'm going to kind of rope you into getting on there with us.

What do you think that sounds good to me?

You know, we could have a little, a little four way pow wow.

And you know, I have had the last few times you've talked to Keith and Carissa.

I have sort of had the FOMO thing going on.

You know, poor Sam, poor Sam, you know, it's, it's four people too many.

It, it, that's not too confusing.

Is it for like, so I mean, you know, like I was telling you off the air, you know, we wouldn't want like 20 or 30 people on the zoom that would create chaos.

But I think, I think we can pull off four.

I think we can, I think we can pull off four.

I think we'll, we'll have you join us next time and we will have some, some super fascinating topic that you can contribute to in some way.

It'll make me feel real official being on a quote unquote panel.

There you go.

Yes, yes.

The, the demand to disrupt panel.

We'll have an important conversational topic, like have you had any skittles yet for Halloween and if we were doing that conversation today, Kimberly, that would be an answer would be no, no skittles yet.

I'm craving them.

And I'm definitely, but the closer we get to Halloween, the more skittles I will intake or inhale, I guess is a better word.

We, I had just decided that we were going to not buy, cause in our neighborhood, many of the kids have grown up, so we don't have that many trick or treaters.

So a small, you know, bag of, of candy would suffice and yet I still buy the, you know, big three pound bags of, of candy for just in case.

And it never goes to waste.

I'm sure.

No, it's not just in case it's just for Kimberly.

So yeah, and Michael is diabetic.

And so I thought, you know, we're just not going to get any candy this year.

We're just not, we're, we're not going to get any, it'll be fun.

It healthy or all the things.

And then this was yesterday and the very day Sayer comes in from school and she says, mama, we're selling candy bars for the band.

I got to sell 30 candy bars.

You hate not to help your daughter, but you really, you know, Michael being a diabetic, he's trying to steer clear of the whole chocolate thing.

So there are 30 candy bars in this house.

Oh, you just went ahead and bought 30.

No, they're just here.

She's just got to sell them.

Oh, but they're here.

She's got to sell them.

You're going to buy at least a few of them though.

I'm sure they're, Michael said, can we just buy them all?

So we don't have to fool with trying to sell these things and we just buy them all.

And she said, well, they're $2 a piece.

Oh, that's a $60 investment, but I, which I would feel compelled to eat.

If you pay $60 for it, you got to eat it.

And then I don't know that seems wrong.

Last time we talked about it being, and it's still October, uh, national disability employment awareness month.

I've been thinking, same, if you weren't disabled, would that have changed your sort of career trajectory?

Well, you know, I can see myself having a similar interest in, um, of course, podcasts weren't a thing when I was growing up, they hadn't even been fathomed yet, but the whole radio communication, running my mouth type of thing.

I, um, I think I still would have, uh, had an interest in that as I, as I did being somebody who, uh, was, was blind since seven months old, but, but I will say this when I was, when I was four years old, I was at, uh, a, uh, I was at an arts and crafts festival for people with disabilities over in Evansville across the river and it was at Angel Mounds.

And I remember, uh, channel 14, one of the local news stations was there doing a feature on it and they interviewed me and my mom and some of the other kiddos and parents that, that were there.

And, uh, at the end, they asked me what I, what I wanted to be when I grew up.

And you know what I told them, Kimberly?

What I told them that I wanted to be an astronaut.

Oh, okay.

Well, yeah, that sounds good.

So I guess, you know, I, I just had the, uh, I just had the crave of adventure at the time and wanted to get as high up in the air as possible.

But, uh, now that's, that's a fairly common, you know, thing for a kid to want, so do you think that would have, did that stay with you at all?

Um, no, when I was in middle school, high school, I don't remember, uh, the desire to go into space as much, but, um, at least, or maybe I, maybe I just heard one of my fellow preschool peeps say astronaut and that just sort of.

Inspired me to say it, but looking back, I still laugh at that because, you know, there for a while, we even, we had a DVR of it because we taped it that night that mom and I were on the news and me saying that we don't have the video anymore because, uh, pretty sure when we upgraded to the DVD player, that was one of those we got rid of.

But, uh, of course we could have converted it to a DVD.

I guess if we were just dead set on keeping it, but we, mom and I still laugh about that to be saying that I wanted to be an astronaut when I was four.

Wow.

Uh-huh.

Uh-huh.

I don't know where, I don't remember.

I mean, I've always wanted to write.

I've always liked writing, so I think I probably would have done that.

You know what I would do now?

Is I really would, I would have liked to have been a barista.

A barista.

Yeah, I would have liked to add no one.

I mean, I, there may be people who are blind who do that.

Yeah, I'd have to look that up.

You know, I bet there, I bet there are, and I bet they do it well.

I do not think I would do it well, especially not with, you know, uh, the other, you know, the balance issue and, and thing like things like that.

Well, and I always feel sorry for the, the, uh, the Starbucks folks because they have to, you know, they have to listen to so many specific instructions on the drinks, like, you know, sweet cream, four pumps of sugar-free vanilla and.

You know, soy milk and low fat milk.

Yeah, they have all those specifics to remember for people.

And I can see where that would get real confusing real quick.

Um, now I'm pickier about coffee at home, actually.

I'm pickier about when I make coffee at home.

I'm pretty picky about how that gets done, but that's probably just because it's me or Michael making it more control over the house.

I feel free to, to, you know, fuss at my husband about, you know, I believe what I said the other day, did you use coffee that was out of date?

He was like, no, I didn't use coffee.

And I was like, I'm pretty sure you did.

I have a refined sense of taste.

Okay.

I don't think this is a blind thing.

I think it's just a Kimberly thing.

And I was like, a little stout, like it was old.

Yeah, it just tasted stale.

It just tasted stale and he was like, you know, he wasn't going to admit it at all.

He was a good, of course, how would he know?

He's like, you know what?

I opened a bag of beans, I put the beans in the grinder.

That's how I make the coffee.

I, yeah, he probably didn't even bother to check the expiration date.

You know, because why would you?

Why would you?

And yeah, he just trusts that if it's in the cabinet, it's still acceptable.

Yeah.

Yeah.

And honestly, I think that we bought this coffee cause we, you know, have our groceries delivered, I think it was just bought and it was out of date and no shade on the person who, I mean, who thinks to look at that, you know, who, if you're the shopper for us, you know, who thinks to look at that, but yeah, he looked on the bottom of it and the expiration date was August, 2025.

Oh, so two months ago.

Yeah.

No, which is two months too long.

Let me tell you, you were reminded of that the other day.

It was bad.

And he was got, he was not going to admit it.

You know, Michael was not going to admit.

Yes.

He was just like, you're so picky.

Uh, now he didn't say you're so picky.

I was just getting the, you're so picky vibe.

You know, I could just feel it coming off.

If you could, uh, if you could see, you would probably notice that.

Yeah.

You'd probably be able to read that on his lips.

Yeah, I could just hear it.

I we've been married a long time.

I could just tell it.

And, but then we're like, get to the end and he was like making the coffee.

Or we're like, can you wait for another cup?

Yep.

Another cup of coffee.

And I hear him in there and I hear the bean grinder again.

And I'm like, I'm like, you couldn't stand it, could you?

He said, Nope.

Also, he just got it.

He just made a new, uh, a new bag.

Yep.

We had another bag and so he checked the date on it and made a new badge.

So he wasn't going to admit it, but yeah, it was horrible.

Even he could taste it was horrible.

So, yeah, you, you, uh, you caught him and then he tasted it and he was like, oh yeah, you're right.

Yeah.

I mean, he probably would have been fine if I hadn't have said something, but you know, you draw somebody's attention to it.

They're like, yep, that's really bad.

You know, they're going to pay more attention to it.

Yep.

Yeah.

You know, words that tend to be buzzwords, uh, in our sectors, Kimberly, our identity and disability and, uh, you know, we tend to hear those a lot in our circles and, uh, you are correct about that.

We, uh, yeah.

And people have some feelings, people have thoughts, don't they?

People do have strong feelings.

You were asking me a little bit ago if I would prefer, you know, to say that I'm a disabled person or that I'm a person with a disability and, um, some might beg to differ with me, but I prefer to be known as a person with a disability.

I just don't think that sounds as limiting as disabled person, you know, disabled, even though it basically means the same thing, you know, you say disabled person, they think, well, he must not be able to do much, but person with a disability, you know, there's all kinds of disabilities out there.

So if you just have one that may, you know, that, that doesn't affect every part of your body or all of your, your capabilities.

So me personally, I prefer to be known as a, as a person with disabilities.

Does the same, does the same apply to you there, Kimberly?

You know, that's, uh, they refer to that now as person first language, you know, your person first, your before your person first, before your disability.

And that's fine.

I don't, I don't think I have strong feelings about it either way.

I will tell you that the writer, like the, the, the writer in me, the younger Kimberly, who had newspaper editing class at Western Kentucky University.

Oh, yes.

Yes.

Fringes at person with a disability, because, you know, when you're doing back then, when you're doing newspaper, you always wanted to, I mean, cut it down as tight and as brief as you could.

Oh, I can see that.

Yeah.

Cause you had, you know, it had to be, uh, uh, under X number of words.

Right.

Limited space, right?

Limited space on the page.

So, yeah, in that case, you know, whenever you could get by with using disabled person, it was in your best interest, you know, and I don't, I don't hate it, I don't, you know, if you say disabled, that's saying more as a disabled person, I'm not going to scold you or anything like, you're not going to, uh, start, start punching people.

No, no, no, no, not going to get violent.

I just prefer person with disabilities, but I can, I can sympathize with all you journalism people that have to condense your, your wording and things like that.

Yeah, it's, but then again, I don't, I mean, I don't really care person with a disability or a disabled person doesn't really, I mean, it doesn't, doesn't bother me.

Now, what does make me kind of cringe a little bit is when someone says the blind or the disabled, like, uh, in talking to the blind, I'm like, okay.

Blind is in the noun.

It's an adjective again.

It's apparently I have grammar, grammar issues, not really language issues.

I prefer those with visual impairments.

Right.

Yeah.

Or, or people who are blind, not just blind or the disabled, you know, like conversations with the blind that's, you know, that normally doesn't sound real good.

It normally doesn't fly with me either.

Yeah.

Yeah.

But, and, you know, these things get talked about a lot about the language and, and words are important.

Language has meaning.

It is important.

It, I do think that, and I don't want to dismiss that, that, but I also think as people with disabilities or disabled people, see what I did there.

As people, I think we have to extend grace to people and just say, okay.

They do not know.

They cannot know in my head that I find that word, you know?

Yeah.

And if, um, you know, they probably didn't even consider that as being possible, but we, uh, take offense to, uh, to that wording.

So yeah, we do have to, we do have to give those people benefit of it out sometimes.

We do.

And we, and you know, when you said take offense, I bet you don't take offense.

I don't know that like, yeah, like I said, you know, disabled person, I'm not going to have a cow and be like, no, I, I'm never going to talk to you again.

It depends on how much coffee you've had, honestly.

This is true.

I guess, I guess my fists do tend to, uh, yeah, you know, they do tend to clutch more quickly if I've had four or five cups, but there you go.

Yeah.

But yeah, I don't think anybody takes offense at it and, you know, taking offense as a choice.

And I just don't know.

Most of the people with disabilities who I know, they, you know, we got too much other stuff to be offended by without, you know, the language, you know, used and stuff now, I think there are, I think lines can be drawn, you know, I think, I, I think I told you, I don't know if it was, uh, on Mike or not that, uh, someone told me, well, I don't believe in that disabled stuff.

I prefer to think of people as handy capable, handy cake.

And I'm like, lady, did you come up with that all on your own?

Because that is ridiculous.

And that's insulting.

It's like, no, you don't get to decide what you call someone else.

You don't get to decide that and go ask any with a person with a disability.

I bet you will, they will say, no, I'd prefer you not call me handy capable.

Yeah.

That's like, you know, the whole discussion about calling people with disabilities differently able differently able, that sounds a little, that sounds a little strange too, at least to me, it just doesn't flow.

No.

And I think it comes from a, I think it comes from a good place.

Yeah.

Yeah.

Whoever came up with that and coined that and me, you know, they meant well.

They meant well.

Um, and yeah, exactly.

They meant well, but it doesn't sound quite right.

It doesn't sound quite right.

And would you know, these things change over time too, don't they?

Yeah.

I mean, two or three years from now, Kimberly, you and I might be having a discussion about some other terms and phrases that people have coined.

Right.

And, and that's okay because people change language changes.

That's okay.

But you know, people should be kind and that goes both ways.

People should be kind.

And then people should have grace when someone messes up because we will mess up.

I will, I will mess up.

I bet you could go find something I have written where I have said the blind.

You know, I messed up Kimberly one time back in 1994.

Yeah, I'm lucky.

I still remember it.

Yeah.

Just the, just the once, right?

That's the once I'm, you know, I'm due for one or two more screw ups, but so you learned, you learned your lesson back.

I learned my lesson so well that it hadn't happened again.

Yes.

Yeah.

It ain't bragging if it's a fact.

Yeah.

Yeah.

Well, I don't even know.

I'm speechless now, Sam.

I have that effect on people.

You do.

And we've ended this discussion about, about words and language with me being speechless.

How ironic is that?

But I bet, I bet Keith and Carissa won't be speechless.

They are not.

They have much to say.

We had a great conversation about media represent representation and identity, and we will listen to them now.

Next time I'll drag you onto one of these calls with us.

Yes.

I look forward to joining you three next time.

Next time.

But now here's another Cal conversation.

Welcome to Demand and Disrupt, a disability podcast.

I am your host, Kimberly Parsley, and I am here today with our Cal Conversation guests, roving reporter, Keith Hosey.

Hello disruptors.

And of course, Carissa, we need a title for you for the podcast.

What was I just thinking about?

Keith gets a title.

Why didn't I get a title?

I know.

What do you, we're talking to, of course, Carissa Johnson.

What do you want your title to be?

I'm fine with.

I don't know.

I think you should be like, like, I don't know, something glamorous or, or, um, specialist extraordinaire or something.

You, you know, all the things.

So we'll, we'll think about it.

We're thinking about that.

We're going to come up with you.

I, you're a chief disruptor.

How about that?

You could be disruptor in chief.

I like disruptor in chief.

I like that.

That's what you will be.

So we, we are going to talk today about as part of our Cal conversations, we're going to talk about disability identity and representation and, uh, sort of what that means to us and banter the topic around a bit.

So disability identity, all three of us, of course, have a disability.

So the two of you, if you were going to, if you were just, when you do have to describe yourself to others, tell me how you do it and what, what that includes.

I'd never go, I'd never lead with the disability if I'm describing myself.

I always talk about crafting and motherhood first, but I do put disability advocate in there sometimes, or, you know, I work for a disability organization or that kind of thing, but it's never been, hey, I had everybody.

I'm a wheelchair user now.

Right.

And that's, of course, if you're, I mean, if you, you're coming into a room, it's obvious you don't have to, you know, you would think.

Keith, what about you?

Um, I generally also do not lead with my disability.

Uh, I certainly don't not mention it, but, um, unless I'm doing something specifically like on a panel related to disability or something like that, um, then I may lead with, with my various disabilities.

Um, but I, you know, generally it is of course, a part of me, a part of my upbringing and my identity.

I, um, I just don't go out of my way.

Uh, you know, I don't have like t-shirts that say club foot awareness.

Um, I do have a couple of mental health awareness t-shirts.

So I guess, you know, that's my, my invisible disabilities, my anxiety and my depression.

So I guess my visible disability, I don't feel like I need to mention maybe, uh, unless, you know, kind of describing, uh, myself a little more in depth, um, but I do.

And even on like my Facebook page, I think my, about me, uh, I allude to my mental health as melancholy, but making it, um, I like that.

Uh-huh.

You know, funny enough, Keith, I worked with you for a couple of years.

Uh, I guess for the good six, eight months, I didn't realize you.

Yeah, I don't, I mean, I don't have a very apparent disability, you know, unless I'm wearing shorts and you can see my leg brace, um, you know, or a high pain day, uh, and I'm limping a little more than usual, um, but I do.

Oftentimes, you know, it's funny, I will run into someone at the grocery store that I may know from somewhere else and I'm dressed casually with shorts on.

And, um, they seem like they may have known me for two, three years.

They see my leg brace and say, Oh, did you hurt yourself?

What happened?

Like, Nope, I was born this way, baby.

Do you say that?

Is that, is that what you say?

Uh, different things.

I sometimes depends on my, you know, acquaintance with the person.

Sometimes I'm a little more, uh, dry and clinical.

Um, but if it's, if it's someone I know and uncomfortable with, yeah, sometimes that'll be my response.

Mine, like Carissa, I sort of lead with, you know, uh, I'm a mother because that's really all consuming, you know, all the time.

Um, so mother writer, you know, wife, that kind of thing.

But then I usually find myself at the end saying something like, Oh, and I'm blind because when you are blind, you know, it will come up in the weirdest of places, like someone will want to send me a picture, you know, like.

Forward me a picture or something.

So I have to, I feel like I have to put that in there.

I have, I have to add the, I'm blind to the end of it just to clear up confusion.

You know?

Yeah.

Yeah.

And, and, and is that almost more of a function of your access need than, than, you know, a need to identify?

No, no, it's really more like you said, it's, it's more an access thing.

If I'm walking into a room and I used to, I would have, you know, when I had a guide dog, that was obvious.

When I had a cane, that's obvious.

But now with my balance issues, I'm almost always going sighted guide with Michael.

And so I think for the most part, if it's someone I don't know, I don't think that they really, I don't think that they really know that I am blind or that I, I, I don't think that they know, they must think I'm just a really clingy wife, I guess.

You just love him.

I'm not sure what, what people really think, but, um, yeah.

So, I mean, I, I never hide it.

I'm more open about it than I used to be open that when I was younger, I was not as open about it.

Do you all find that to be true?

Absolutely.

The same.

Absolutely.

There for probably about the first 19 years, I tried to do whatever I can to assimilate, including trying to walk, which was stupid.

Well, I mean, I'm embarrassed to my younger self, honestly.

Aren't we all though?

Yeah, I was going to say for one reason or another, whether it was fashion or something else.

Yeah.

Yeah, exactly.

And, and so I wonder if now we say, you know, we don't, that we're more comfortable with it now.

I wonder, is that a function of us getting older or is that a function of the times changing, do you think?

A little of both.

I don't care what people think anymore to an extent.

So it's not as necessary for me to try to be typical than it was.

Um, you know, I'm going to really embarrass myself at this point.

I was a poster child at the age of four for Easterseals.

Yuck.

But anyway, and you know, by the time I got in high school, my big goal was to walk across the stage or walk down the aisle when I got married, because I was that ashamed of my disability.

And did you do those things?

Yeah, I did them.

Did you?

And I was proud of them at the time.

And now it's just like, I'm comfortable with who I am and I don't care.

And I'm happy that I'm not happy that it took so long to get there, but I'm happy I'm here now.

Yeah.

I think for me, it's, it's more of that, you know, not necessarily that society has changed, um, I think for it's just, I've accepted my disabilities more as I've gotten older, um, and I think that's correlated just a little bit with my, um, access needs.

Uh, I started to care less about what people thought when I needed places to sit down, you know, I'll get on public transit when I'm traveling with my wife and get all of the dirty looks, because when public transit gets full, my wife gets up so I can sit down at a younger age.

I cared about those dirty looks, uh, not so much anymore because I need that access.

Yeah.

Yeah.

I think, I think with me, it's, you get older and you realize people really aren't looking at you, you know, they're, they're paying attention to their own, you know, what's going on in their head, what's going on on their phone, you know, they're looking at younger people, you know, they're just not looking at me anymore, so, which is kind of a blessing and a curse, I guess, at the same time.

Yeah.

You know, it's, it's funny you bring that up, Kimberly, because I remember, oh, now I'm going to blank on the name of it.

When I was, uh, young and impressionable, maybe middle school or school went to see a Tennessee Williams play, um, something about glass.

What is it called?

Oh, the glass menagerie?

Yeah.

Thank you so much.

The glass menagerie, um, and of course the, the protagonist in that story, uh, is, is, um, the young gentleman, but his sister has a, uh, physical disability.

Um, and at one point in the, in the play, she describes walking late into class.

Uh, there, there is a, um, the brother brought a gentleman call her over.

I don't know if you're familiar with the play, but anyway, she's, uh, she went to school with the gentleman and she was talking about how she felt like every step she took, her leg braces clanked and clanked and clanked.

Um, and, and he said, you know, in the play, he said, you know, I didn't even ever notice them.

Um, and I, and I thought about that a lot over my life of, of kind of, you know, we blow things ourselves out of proportion so much that it may not even, it may be a non-issue for other people.

Mm hmm.

Yeah, I think, I think so.

I also, I think the younger generation, like my kids have friends over, um, and none of their friends has ever asked me anything about being blind.

Never.

I mean, when the kids are here, when the house is full of kids and there's no telling what's where I will use a cane in the house.

I normally don't, but when they're here, I do.

Um, and none of the kids have ever asked me anything about it, but I can be like, if I'm, if I'm doing obvious blind person things out somewhere, like at the grocery store or something, someone will, some stranger will come up and ask me, Oh, do you mind if I ask, uh, what caused your blindness?

And I'm like, I want to get up the courage one these days to say, yeah, I mind actually.

And no, it's not really any of your business and I'm busy, but you know, we've talked about how we are kind of the ambassadors, whether we want to be or not.

So you feel like you.

For all the other disabled people, I have to be nice about it.

So you're on show 24 seven or on, on at work 24 seven, but I think there's a big difference between that type of question, which is so invasive, uh, and personal.

Um, you know, I think previously, if not on the podcast, uh, in general conversation, we've had conversations about, um, policing bodies that a lot of able-bodied people think that, that they're the police of disabled bodies.

You know, uh, when I hop out of my car at a parking space, I may not look disabled immediately.

Um, and it, and it's not a lot of able-bodied people think, uh, it's their job to police us, um, you know, out of the goodness of their hearts.

And so I think there's something different between that question, which is super invasive between that and maybe a kid being curious, like you had said before, even though your kids' friends aren't that curious, um, I'm always happy.

You know, if a kid's looking and I, and, you know, I picked this up from, of course, Carly Finlay, uh, the, um, disability activists from Australia, you know, her first book she wrote is called say hello.

Um, and the premise is so often, um, non-disabled people, when their children look over at us disabled, they say, don't stare, um, and what does that teach?

It teaches negative stereotypes, right?

So don't look, don't look at them.

They're different.

Um, instead you can say hello.

And I don't ever mind a kid asking me, uh, about, about my leg brace or anything.

And now I might tell them I'm Ironman or something silly like that.

How old they are.

Um, but that's different.

Uh, yeah, kids are, kids are different, but I mean, like my, my kids' friends are just more like, Oh, she's blind.

Okay.

That's fine.

They just, yeah, maybe I'm just not that interesting.

Do they ask, do they ask your kids?

Like do their friends have you had that conversation?

Like, do they between each other?

Not, you know, that's interesting.

Cause my, my daughter had some friends over this weekend because, uh, it was her birthday yesterday.

And so she had friends over this weekend and one of them, I had never been here before and I said, did, did he know I was, I was blind and she said, yeah, he knew.

And I said, Oh, did, did you tell him?

No, I don't know.

And so it's like, so not a big deal to her.

She, she doesn't even remember how she doesn't know how he knows.

She doesn't, if she told him, it didn't register with her.

She doesn't know.

I think they, I think as they get older, it just, it's just, they got their own stuff going on, don't they?

I think it's just what it is.

They're not interested.

They don't, they don't care about us anyway.

No, no, they really don't.

I think too, to your point earlier that society has changed a little bit.

You know, we're mainstreaming kids in school much more than we were, you know, when I was a kid in school, you know, you're seeing disability representation, uh, you know, whether it's actual disabled actors or not.

That's a different story.

I know we might talk about that today, but like, you're seeing at least more representation on TV and movies.

So I do, I do think it's partly, um, kind of the sign of the times.

I think so.

Um, you know, and I was just reading, I get a lot of disability news, you know, uh, stuff, and I was just reading that, I believe it's Georgetown University in, in DC just got a disability studies major and I know, I think out in California, I don't know which one, it might've been Berkeley.

I know they've had a minor for a while, but I, so I wonder if some of these we're seeing more majors in disability studies and I wonder what, if you all think that will kind of have an effect.

Because I know when I had a women's studies class or feminist studies, whatever, I don't remember what they called it in college.

That was, I mean, that was really kind of foundational to my understanding of, uh, society as an adult.

So I wonder if you all think that might happen as well.

That would help.

I would definitely like to see more of it because when I was in college, you had like the black experience, you had human diversity, which we got a chapter.

And I was proud of that chapter.

You had, like you said, women's studies and you know, all these things.

And, but we're a minority yet.

We don't have a class, so yeah, I think it would definitely open some eyes for some things.

So Keith, if that, uh, if that was, had been an option, would you've taken a course like that or a major even or something?

Um, yeah, I probably, I would have definitely taken a course or two, maybe even thought about minoring in it.

I mean, nothing's more useless than a philosophy bachelor's, which is what I have, so I don't think I could have gone downhill on any, no, I think it's, I think it's good and I, and I love that it's, it's happening in more places because, um, not just for the non-disabled population to understand us better, but, um, like you said, Kimberly, when you were in school, you went to a women's studies class and it opened your eyes as a woman, um, so I'm hoping that it'll do the same for disabled individuals who may, you know, still be trying to understand their disability or their place in the world.

Um, and I think like the history and all of that is helpful.

Because internalized ableism is a thing.

Absolutely.

And, uh, do you all still struggle with that?

Or did you, do you, I mean, I don't know when I stopped struggling with it.

Honestly, I think doing this podcast and having this job at center for accessible living is kind of when I stopped having this internalized ableism, but I feel like I even came into this still carrying some of that.

What about you guys?

Absolutely.

Um, yeah, I talked earlier about the before and I call it the before and after, I definitely think the job and meeting other people with disabilities.

Really opened my eyes.

Part of it was because I was the only representation in my small town for a while, so didn't have anybody else to relate to.

And that totally changed when I came to Cal.

Yeah.

Yeah, I, I as well, um, some, somewhere along the journey of when I worked at Cal, um, it really diminished a lot.

Chris, I think just like you, I came in, um, you know, I started at the center when I was 24, pretty fresh out of college, um, with my super useful philosophy degree.

And, um, you know, I had that internal stigma and I had that external stigma and it took really just, just working, you know, the great thing about Cal is 51% of your coworkers, um, are people with disabilities.

So you're seeing people with various types of disabilities go through their day in this agency, serving other people with disabilities.

And it's hard to hold on to those personal prejudices.

Um, and so I think, you know, that helped a lot for me as well.

And I just want to say here, uh, Keith is to our listeners.

Keith is the head of the Cal board, right?

We have a consumer, a board, um, yeah.

So I, yes, I am currently the chair of the Cal board, um, which also requires us to have 51% representation of people with disabilities.

So, right.

And, and of course, Chris and I work for Cal, which, you know, stands for center for accessible living.

So if you're a listener out there and you have a disability and you're thinking about this whole identity and internalized ableism thing, you know, reach out to reach out to Cal.

You can find it on the internet, do a search, find us and call.

I mean, one of the things that we do is we do peer support.

We talk to people, you know, we, we talk to people about that sort of thing.

So we would love to connect and, uh, talk about your journey and, uh, what you're going through.

How can we can help?

So that's why we call this Cal conversations is so we can talk about what we do and get more people involved because no one needs to go, no one needs to go through the disability experience alone.

And I was like Carissa, I was, I was the only, I mean, I think there were other blind people or low vision people in my hometown, but they were older people.

You know, they were, um, blind or low vision as a product of age, you know, I think, um, but I remember when I first got my guide dog going, coming home from New York where I got her and coming home and going downtown to keep her, you know, walk the streets, cross roads, do things like that to keep her, to keep her sharp, you know, before we went to Western in, in the fall, uh, to college.

And literally people would stop in the road to say, Hey, hon, you're doing great to the streets right up ahead.

Okay.

Be careful.

You know, so, um, yeah, it can be a little lonely and, uh, you don't have other people around.

So reach out to us and we'll do what we can to help out.

And, um, that leads us into what Keith was talking about, which was, is disability representation in media and where you see disability and when they get it right and when they get it wrong.

And I don't know, you all tell me, but every time I am what I honestly don't consume much media, except books, because of this very reason, it's like, if a movie or a TV show has a blind person in it, I feel like, I feel like the odds are good, they're going to get it wrong.

What do you all think about that?

Yeah, a lot of it is poor people for me.

They have to be healed or they want it.

Yes.

For lack of a better word, they don't want to live anymore.

Right.

Yes.

It's awful.

It is terrible.

You know, it's, it's, I read a book recently and someone said, well, at least I'm whole, you know, they come out of experiences, at least I'm, I'm whole, which meant at least I'm not disabled.

Yeah.

And I, I had some expletives to say about that.

Did you say them?

I did, of course.

Yeah, I did.

And I would have, if I'd have been reading a print, if it was print or braille or something like that, I would have thrown it, but I read books, listen to books, audio books on my iPhone.

So I wasn't going to throw my iPhone, but it was a near thing.

Let me tell you.

Yeah.

I think, you know, we're so full of, historically, you know, TV and movies have been so, and even, you know, the news have been so full of these tropes, these, uh, disability tropes.

And I just, they don't, you're right.

They generally don't get it because I don't think they take the time to get the perspective of an individual with a disability.

I mean, not only are they not hiring actors and actresses with disabilities.

I guess the gender neutral plural of that is actors, but they're not even getting consultants to tell them, you know, what the right things to do is.

So, um, I love when I see things, um, that, that really do it right.

I'm trying to think of an example, um, CODA, you know, obviously that it was heavy with, um, deaf, uh, actors and influence.

Um, and they did a great job.

You know, I, I was thinking about, I don't know if either of you watched that show Glee, it was years ago now.

Um, but they had Artie the wheelchair user.

He was not, uh, he was a, he was a typical, um, abled individual, uh, and there was a little heat over that.

Um, but I, you know, I, I think still the vast majority of disability reference dissentation is, um, what some people call crip face, uh, abled individuals playing disabled individuals on, on screen.

Oh, is that what they call it?

I've never heard that term before.

Yeah.

Crip face.

Is it any other situation the world would be in an uproar?

It w you know, they would, they would.

And so are we uproaring enough about this?

It's going in the right direction.

It's still in its infancy though.

It is.

We are starting to, yeah.

I, and I know actors will say, well, it's part of the acting experience to be able to play, you know, a disabled character, it challenges me as an actor or whatever.

And I love that crip face.

I love that.

I'd never heard of that Keith, but yes, that, that encapsulates my feeling about that is that's, that's not cool.

It's just, uh, not cool, but yet it's done all the time.

And yeah, we need to be in kind of an uproar.

If you're going to take the experiences of disabled people and put them out there for entertainment value, because that's what this is, this is for entertainment and commercial value, then you at least need to pay the people whose experiences you are taking.

You know, they, those people need to be paid in, in terms of being the actors who are involved in that.

Yeah.

Go ahead, Keith.

I'm sorry.

I was just going to say it's, it's different now too.

Like, you know, like I don't think they can get away with saying, well, we can't find an actor with that disability because there's certainly plenty of people out there with disabilities who are in the acting field, uh, you had, uh, Oh, um, what was that show?

Uh, Micah Fowler was in, um, speechless, they did such a great job in that show because guess what, they had an actual disabled person playing to disabled character, um, and, and we're able to get input from him and probably writers too.

Yeah.

I mean, and I know they have consultants, I know that's moving in the right direction, but we have to be able, I mean, I think we as a community have to say that's not enough, it's not enough to have consultants, it's not enough.

And I mean, Keith, you said that they'll say, I can't find an actor.

Well, how many times have they just stumbled upon the right actor for a role?

I mean, go looking for disabled people to play that.

Yeah.

If you just sit in your office and, and, and wait for a disabled person just to show up there.

No, go put in the work, go do the work like you would for any other actor, any other role, you know?

Also, I wonder, I would, do you think that the, they think accommodations would be too expensive?

Wasn't there enough for about that at one point, cause Ali Stoker needed to get on stage and what was it, the Tony's or something and to put up a ramp, they, they just basically threw a fit.

I can't exactly remember the, what went on.

It was a couple of years ago, but it was this older building and to put a ramp on the stage would have been a, you know, really bad idea and blah, blah, blah.

It was terrible.

So she had to stay on the stage after she accepted her award.

Like she didn't go off and then she had to perform like 30 minutes later or something like that.

Cause once they got her up there, they didn't want her to go back down.

Isn't that just the perfect metaphor for media representation of people with disabilities?

Yeah.

And you know, things get accommodated all the time.

That is something that pisses me off all the time.

I hate the word accommodations because I, like I talked about with one of our guests, I think it, I think it was, I can't remember who it was now, but I said, don't you, do you hate the phrase reasonable accommodations?

And she said, she hated the word reasonable.

Like who gets to decide, you know, what's reasonable.

And it was Dr. Scorsby, a deaf professor at UK is who it was.

Dr. Crystal Scorsby.

And so I jumped on that and never got around to the whole talking about accommodations.

And I hate that word because it sounds like it's something they're doing for us.

And you know, anytime anyone goes anywhere, accommodations are made.

It is called having a society, you know?

I mean, we eat around a table with chairs.

So restaurants has have table and chairs because that is how our society consumes food, you know, other countries, it could be different and Japan, they do it differently.

You know, we accommodate lots of different things for lots of different people for lots of different reasons and saying, we can't do this for this disabled person.

I mean, yeah, no, I agree with you, Kimberly, Kimberly.

You know, it's this idea and I think, you know, the idea behind it was accommodation in the term that you're using is we all need accommodations.

It's like when you talk about the phrase that I hate special needs.

We all when you look at no matter who you look at, we all have our own particular needs.

They're not special.

They're not not special.

You know, it's one of those things.

I think the same with accommodations.

We all are accommodated differently.

Sometimes it's because of a disability.

Sometimes it's just part of doing business.

But what has happened to that word, I think, is it has been co-opted to mean unfortunately by the non-disabled community co-opted to mean special privileges or, you know, extra treatment or something.

But what it really means is just equal access.

I wish we had to use the word equal access instead of accommodations.

Yes, and me too.

Just, you know, equal access arrangements or something like that to instead of start the trend.

Do what?

Let's start the trend.

Let's do an equal access.

Yeah, we'll we'll we'll make it happen right here.

Our disruptor in chief, Carissa, you get on that.

So I but I think that's one reason that is used that it's going to cost money.

Right.

Everything is, you know, we live in a capitalist society, so everything's about money, but yet, you know, for the longest time, a lot of things didn't happen on Sundays because that was our society, right?

That we didn't stores.

Didn't certain things were closed on Sunday because of church and religion and culture or whatever.

We have holidays that I mean, there are a lot of things that we do that accommodate and our American culture.

Well, if our our American culture needs to do better about equal access for everyone, and I think I'm done.

I think I handled it.

What do y'all think?

Oh, Kimberly, you know, Keith was talking about special needs.

And I think I freaked out some parents the other day because I did a disability etiquette training for some theater kids.

And I use special needs as derogatory.

And they all looked at me like I was crazy.

Like, what are you saying?

Like everybody has needs.

Oh, they're not special.

So when he talked about that thing, I kind of jogged my memory for that.

But the looks I was given for saying special needs wasn't wasn't appropriate.

Oh, I can imagine.

I wish I was a fly on the wall.

Yeah, yeah.

And that's the hardest thing, though.

Having this platform and talking to an audience is one thing.

But when you're in a room with people staring back at you, it's hard.

Isn't it to stand up for what you're what you believe, what you're thinking?

It is even even with people, you know, sometimes like you go out and the bathroom is not accessible or something like that.

You're sitting at the meal with your friends like, God, I have to do this again.

Let me go give the speech.

You know, yeah, yeah, I just want to do things like everybody else.

Yeah, and not have to think about it, not not have to prepare, not have to do the the front, the front work of all that.

But that is back to our disability identity, right?

I mean, I think to go through the world, the way we go through the world, we are educators, whether we want to be or not.

Maybe when we introduce ourselves, we should say that I'm an educator of.

I'm an educator.

My mom always said I was a teacher.

Oh, really?

There you go.

I don't want to teach anymore.

No, no, I get it.

So any last thoughts you all have before we go on disability identity and representation?

You know, I'll tell one more story that I wanted to get into.

My sister-in-law listened to one of the podcasts a few weeks ago.

It was with the rabbi, the female rabbi.

I can't remember her name.

Julia Watts Belser.

We were sitting there in a family event.

She's like, I want to talk to you about this podcast.

And she says, I don't see your disability.

That's crazy when she says that's part of your identity.

No, it's not.

And we just sat there and argued for about five minutes because for a while there, society taught, you know, you see the person first.

She's a special education teacher, by the way.

And the disability shouldn't be a big deal.

But yet it is.

No matter of wishing that it would go away, makes it go away necessarily, even if society was perfect.

I would still have chronic pain, you know, you would still be blind, you know.

And so that is a part of my identity, because if I wasn't disabled, I don't think I would have gone down the path I've gone down.

So it is so ingrained, even though it's not the first thing I identify with.

And I'm finally proud of it.

So I just hope whoever's listening gets there, too.

I'll get off my high horse now.

No, that was that was perfectly encapsulated, because you're right.

There used to be a way of talking about disability, which was we just we it just doesn't exist, you know, like it's like how Stephen Colbert on the Colbert report used to say, I don't see color, you know.

And of course, that was satire.

He was, you know, it's like, of course, you know, racism is everywhere and, you know, race and those things.

It cannot be it cannot not it cannot be.

Something that is ignored and disability is the same way.

So I'm glad you mentioned that, Keith, go ahead.

Carissa did such a good job.

I don't know if I want to follow that, but it does that, doesn't she?

That's that's that's why she's the chief.

I disrupt her and she disrupt her in chief.

That's right.

Yeah, I think, you know, it me, too.

It took me a long journey to get to where I am now, where I don't have much internalized stigma, where I do have pride of being within this community of wonderfully talented and diverse individuals who much of the earth passes over.

You know, I've talked to friends who are parents that have said, you know, my child has never met, you know, some of their aunts and uncles, because we basically got written off when I had a child with a disability.

And, you know, my initial response was how horrible for you all.

And then before I could even say that, this one friend who I was talking about it not too long ago said, and I feel so horrible for those family members that they don't get to meet the wonderful person that my child has become.

And so I think we need to to.

Take that kind of focus on that.

Mm hmm.

And it definitely doesn't mean the disability doesn't suck.

I'm not going to say that either.

We're not glorifying every little thing.

My chronic pain sucks.

Yeah, I mean, I had a migraine yesterday.

I had to leave work early and go home and crawl in the bed.

You know, that was not ideal.

But it's related to my diagnosed anxiety.

It does.

My chronic pain sucks, too.

You know, I think it's a difference between, you know, disability pride doesn't necessarily and Kimberly, you had a great conversation about this a couple of episodes ago.

But, you know, my disability pride doesn't necessarily mean I'm happy with my disabilities, just that I can find beauty and community within that.

And I wish we had more representation on TV to bring that back around.

Absolutely.

Yeah, yeah, absolutely.

Because what we want to show to the world is that it doesn't have to be about shame.

We can be proud of who we are as disabled people.

And show that not not necessarily we're only happy if we're cured or healed or whatever.

We're happy as we are.

We're proud of the people we have become.

And we're not ashamed.

That's it right there.

That's the sound bite.

Well, thank you, as always, for joining me, Keith Hosey and Carissa Johnson.

I love these conversations.

I learn a lot.

I hope our listeners did, too.

So thank you all for joining me and we will do it again.

Thank you.

Demand and Disrupt is a production of the Advocato Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song Change.

Don't forget to follow or subscribe so you never miss an episode.

And please consider leaving a review.

You can find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks, everyone.

Visit the Kentucky Talking Book Library at their Frankfurt location, 300 Coffee Tree Rd., for an open house from 1-4 PM EST on Sunday, October 10th.

Call KTLA at 1-800-372-2968.

Visit their website at Kdla.ky.gov

Thanks to Chris Ankin for use of his song, “Change.”

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You can find the transcript in the show notes below when they become available.

Transcript

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Welcome to Demand and Disrupt, a disability podcast.

I'm your host, Kimberly Parsley.

And I'm your cohost, Sam Moore, sitting here with a cup of black coffee.

So I'm all caffeinated.

And last time, Kimberly Parsley over here in Bowling Green, she had to settle for a black tea, but she's actually got cream in it today.

So she's clicking on all cylinders and so am I. We know you want two hosts that are both equally clicking indeed for sure.

But anyhow, Kimberly since you're clicking on all cylinders.

Why don't you go ahead and tell us who our special guest is this time around.

Yes, indeed, Sam.

I have Earl Grey tea with cream in it and all is right with the world.

And, and my special guest today is Jenny Smith.

And Jenny is the branch manager at the Kentucky Talking Book Library in Frankfurt, and we talk about the Talking Book Library, its history, what they do, who they serve, all sorts of fascinating things.

And as our listeners know, books are one of my most favorite things in the wide, wide world.

So you've even written a few.

I have written a few.

I am extremely happy to talk with Jenny and, you know, aside from that, Sam, do you know what one of my other favorite things is?

Uh, well, Bruce Springsteen.

We talked about that a few weeks ago.

That is true.

The boss is definitely one of my favorites, but October and Halloween.

They are synonymous.

Yes, all month long.

It's Halloween.

I'm so excited.

October is finally here.

Yeah.

And I feel like at some point it's going to cool down.

I, you just got to keep the faith here in Southern Kentucky.

Right.

Yeah.

It's one of those, it'll, it'll cool off with, with very short notice.

And, you know, a lot of times the, the high temperatures will drop from like mid seventies to mid fifties within like a couple of days.

So you don't have much time to prepare.

There's, you know, it's, there's no graduality.

Is that a word?

It is now.

Not, we made it a word.

But, uh, yeah, I'm ready.

I'm ready for that drop in temperature.

Yeah.

And, and pumpkin spice is all the craze now too.

I know you've noticed that Kimberly.

I have, I've had my, my pumpkin spice latte.

We are getting all the Halloween decorations out.

I have done the extremely annoying thing of waking up my children to Halloween music.

So what do you think is the number one, the first Halloween song I had to play?

The first Halloween song you played.

I'm going to guess it has to be Ghostbusters.

You know what?

You're wrong, but you're close.

Ghostbusters was the second.

Ghostbusters was the second.

It was not the first.

Yes.

Yes.

But the first one was number one thriller.

It was good job, Sam.

Yep.

Yeah.

I was going to say, if it's not Ghostbusters, it has to be Michael Jackson's very popular thriller.

It was thriller.

Yep.

I wake them up.

They, they think it's amusing.

They don't want this to happen all the time.

So, but, uh, yep.

Play it on the smart speaker all through the house.

Wakes them up.

Something you do five days a week or just like certain days.

Well, um, just whenever I feel like it, honestly.

There you go.

Yeah.

Whenever you just want to, and I'm sure they just love it.

Whenever, whenever.

Thriller is blaring on the smart speaker.

I do like to kick off October.

You know, I do that and on their birthdays, this is a tradition.

I always play birthday by the Beatles to wake them up.

Right.

So that, uh, plays blaring all through the house on everybody's birthday.

They, so it's.

Yeah, it's a thing we do.

And we've got, uh, we're going to, we've had candy corn, pumpkin spice latte.

Oh gosh.

I've not had a pumpkin spice latte yet, but I will once the weather cools off, I'll be more in the spirit.

And, um, you know, I'll, I'll definitely have them.

I know, but Starbucks has had theirs for like at least three weeks already.

Yeah.

And, um, candy corn I can do in small doses, although I'm not.

Hooked on it, but I don't know how you're not hooked.

Cause I'm fairly certain it's made with cocaine.

It is addictive.

That may be part of the reason behind your addiction.

I feel like it's addictive.

I have this, well, it's sort of a guilty pleasure, but it's not Skittles.

I love some Skittles.

Really?

Huh?

That that's one of those things that I never outgrew.

And so, um, you know, whatever, we always help out with a trunk or tree that at my church, so we hand out candy and I always try to make sure that, um, Skittles are a, uh, a decent part of our, uh, candy assortment that we hang out that way, you know, whatever's left over.

Oh, I see.

I see.

Hopefully a lot of it'll be Skittles and I can get my share.

Evil genius right there.

Yeah.

But, uh, anyhow, I do, uh, I do enjoy tasting the rainbow still.

Do you enjoy tasting the rainbow at all?

You know, I tend toward more chocolate desserts as opposed to the, this, the, the sour and fruity, you know, yes.

Yes, exactly.

More M&Ms than Skittles.

Um, and of course we know you go through your share of candy corn.

I do love candy corn.

Our neighbor just got one of those great big, like 12 foot skeletons.

Oh, I know I'm excited.

I think I can't steal it.

Number one, that'd be wrong.

So I, I'm not advocating theft of Halloween decoration.

No, number two, no telling how heavy that 12 foot skeleton would be.

Well, and if I put it in my yard suddenly, then they know who stole it.

But you know, I wonder if they just let us go over and like decorate it every now and then.

Like if we could just go over and, Oh yeah, because you're all decked out with all your Halloween stuff.

We could just put, we could just, I don't know.

I don't know what we do, but it would be fun.

You know, it would be fun to decorate their skeleton.

You know, you should, your neighborhood should have like a Halloween decoration contest and, you know, you know, make it sort of a friendly competition.

You know, my kids always want it.

When you turn on our road, we live on a country road.

Off like, I know what that is, but I won't say it.

Just, just, just so you know, we don't, we don't want people knocking the door for autographs or anything.

There you go.

And you know, it would happen.

It would happen.

Uh, so right.

It, when you turn on our road, it's, uh, well, my daughter used to call it the scoop, the spooky forest, because it's like, it's lots of tall trees and stuff, right?

When you turn on and we always thought, wouldn't it be awesome to like decorate that area right there with like, you know, like, uh, spider webs and just hanging rubber bats and stuff.

Oh my gosh.

We never, we, we never, never did that far.

No, to, to decorate the whole neighborhood.

We didn't know how everyone would feel about that.

Some of these people, they guess, you know, I'll be, I'll be riding with mom and should we describe them to me, the decorations in some of these yards?

And some of these people just go so far and, and it's like, I hope they know that after Halloween, they've got to take all this stuff down and it's going to be a royal pain in the rear end.

Some people go in hard for that kind of thing, which I think is awesome.

It's like, they're doing it for their neighborhood, you know, for other people.

And I just think it's generous.

I really think it's awesome.

You know, and a lot of people obviously think it's, it's worth the, it's worth the agony of de-decorating for the time you have during the, you know, month or so leading up to Halloween.

I think, I think, I think they must be the people who really enjoy decorating.

You know, they enjoy the creativity of that kind of thing.

And then a lot of those same people here in a few months for Christmas, they'll be rolling out the red carpet.

Yeah, yeah, every, you know, every nook and cranny of their house with some sort of Christmas decoration.

Yeah.

And I appreciate that.

I appreciate the people who put decorations up for their community, you know, their neighbors and things.

I think it's nice.

They're just trying to add to the, the fun and, and, and the appeal.

And, and, you know, of course we'll have plenty of time to talk about Christmas and its decorations as it gets closer, but yes, exactly.

And honestly, the tackier, the better is my opinion.

That's the tackier, the better people would agree with you on that.

I'm sure there's a house that we pass here in town in Bowling Green.

Hi, if it's your house, they have a, a bush and they do like topiary and they.

Like they, what do you call it?

Shape the, the, the bush, like during Wimbledon one year, they did the shape of the bush in the shape of like, uh, John McEnroe and had like the sweat band around the head.

Oh my gosh.

So they, so they transformed that bush into different designs.

Yes.

Yes.

Whatever that's called.

And it's my kids always love to drive by there.

That then they would always like tell me and describe it.

And it's, it's so awesome.

You know, they'd make a special point to see that bush just so they would, you know, so they could see what specially designed shape it was in at any given point.

Exactly.

Exactly.

And I thought, well, how cool to do, you know, so.

Yeah.

So you make sure wonder if the bushes in the shape of like a horse during Derby week or something like that.

It might be stuff like that.

Yeah.

It would be, it would be things like that, but I don't, I don't remember what it did for Derby.

I just, the John McEnroe one was, uh, and then it would do like a snowman sometimes.

You know, I don't know that is, is very artistic.

They are very artistic and they've got, they must have some serious miracle grow on that bush, you know?

Yeah, maybe some serious time on their hands.

Yeah.

Maybe they're transplanted and a whole nother bush.

I don't know who knows.

That's, that's an interesting food for thought right there.

It is.

It is.

I never thought about that till now, but it was, it was, it was very nice.

Very nice that they did that.

So, yes, but we hope you enjoy your Halloween.

We could even continue this discussion a little bit more in two weeks, Kimberly.

Oh, could we?

Yeah, we could, you know, cause that'd be middle of October.

Halloween still won't have happened yet.

Yes.

Everybody could, could, uh, email us with the tackiest Halloween decorations.

They've seen how might they go about that?

Sam demand and disrupt at gmail.com.

Send us your plans and your, your decorative, uh, movements.

And, you know, you just might get the big shout out on the air.

Ooh.

And Halloween costumes.

If you've got an awesome Halloween costume idea.

Yes, I love that.

But the last time I dreamt, well, actually I dressed up for Halloween trivia because I host trivia locally through two or three times a month at a local pizza place.

So when my partner, the restaurant owner and I, whenever we did Halloween trivia, we dressed up and, um, let's see, uh, one time we dressed up as a league of their own, you know, I was the coach.

Oh, awesome.

There's no crying in baseball.

There is no crying in baseball.

So I, I dressed up as the coach and, um, and then, um, Christie, my partner slash scorekeeper cohost, all the other roles she feels she dressed up as, um, Dottie, you know, the star player.

Oh yes.

Uh huh.

The team.

Oh, that was fun.

The last time I dressed up for myself, you know, before I started hosting trivia, I was a Stevie wonder.

Oh, well that is cool.

That is cool.

Wow.

I had the glasses and, um, you know, a friend of the family lent me his, um, hats.

It was a, it was a Troy Palamolo hat for those of you that know football, know that he played for the Pittsburgh Steelers forever and he had such long hair.

So this hat had, you know, long hair, wig type of thing spinning down.

So I had the, you know, I had the glasses and the long hair.

It went over pretty well.

Well, cool.

That's awesome.

I don't dress up usually.

I'm just usually trying to, uh, you know, uh, organize my kids costumes.

Yeah.

I try to get them, cause I tell them on Labor Day, if you're dressing up for Halloween, you got to tell me about it now.

Let me know now.

Let me know now.

Cause I got to buy stuff.

Cause I don't, I don't make no homemade costumes, but I got to buy stuff.

So yeah, by October, you're too busy eating candy corn.

You know me too well.

No shame, no shame.

And you know what else October is?

October is, let me get this right.

Okay.

Oh, yeah, I know.

Right.

National disability employment awareness month.

There you go.

You nailed it.

It was, yeah, and it's, uh, by, um, the department of labor and this year is the 80th year, and I believe the theme is celebrating.

Oh, what was it?

Value and talent celebrating value and talent, which I got to tell you is just the biggest nothing burger of a word salad celebrating value and talent.

What does that even mean?

It's like, you could interpret that a number of different ways.

The opposite is like celebrating mediocrity, value and talent.

Really?

But I mean, you know, I feel valuable.

I feel talented.

So fine.

I'd like to think I'm valuable and at least somewhat talented.

I mean, it's just, it's, you know, I don't know.

These themes are weird.

Aren't they all the things for stuff.

And I can say, I know they, you know, they try to be original and come up with new ones every year.

And after 80 years, maybe it's getting harder, maybe it's starting to show.

They're really digging.

You know, if you've never, if you're an employer and you don't have much experience with, um, uh, individuals with disabilities, you may not, you know, you may think those disabilities are more limiting than they are, you know?

Oh, 100%, that, that is absolutely true.

And I mean, uh, celebrating, there's things to like celebrating different lived experiences, you know, uh, that because disabled people are. 100% the most creative problem solvers.

Oh yeah.

They, they are better at finding ways to do what they got to do.

Then absolutely finding ways of what they got to do, what you got to do, what anybody's got to do.

They will figure it out because our whole life is figuring stuff out.

Right.

Exactly.

So bigger stuff out, even when we don't realize it, right.

Maybe that should be the thing, you know, disabled employees, they figure shout, you know, I mean, yeah, exactly.

To put it bluntly, they figure shout.

That would be a theme right there.

That would, that would, as my kids would say, that would go hard.

That's what they say.

That would go hard.

Is that what they're saying now?

That's what they say now.

It means all of the, uh, modern, even that being 37 years old, I apparently don't know all of the modern lingo.

Oh, well, you don't have to worry.

Cause there'll be something different next week.

Yeah.

So it's, it's fine next week.

It'll be different.

So you're never really behind.

Yeah.

True.

There'll always be new lingo to learn.

Yes.

Yes, there will.

But we do want to always advocate for people with disabilities to be hired, to get jobs, uh, all the things.

And if you need help advocating for yourself, reach out to the center for accessible living.

That's one of the things we do.

We help out with that.

And, uh, you know, October 2nd was disabled authors day.

Ah, that was, as we record this, it was yesterday.

I know.

And I wish I had known I would have celebrated myself because I am a disabled author.

So yes, with the books you have written in the past.

Yeah, exactly.

And, uh, one thing, uh, we won't have without authors would be books and for books, we have librarians and that's who we're going to talk to in a minute.

So yes, uh, yeah.

Miss Jenny Smith is a proud librarian.

So yes.

Yes.

See, see how I did that.

Look, that was a neat tie.

You just sort of brought that all full circle.

I did.

My ability to segue is unmatched.

Yeah.

Don't get the big head though.

No, no, no, it ain't bragging if it's a fact.

There you go.

That's what you said.

Yep.

Here's my interview with Jenny Smith.

Interview

I'm here today with Jenny Smith and she is the branch manager at the Kentucky Talking Book Library.

Hello, Jenny.

Thanks for joining me.

Hi, thank you so much for having me.

I'm excited to be here.

I am talking with a librarian.

This is my dream come true.

Well, I, you know, we love to talk.

I know sometimes librarians have a reputation for being quiet, but if you spend any time in a library, you will, you will quickly fly in.

We love to talk and certainly, I really enjoy talking about the Talking Book Library.

Books are my favorite things in the world, aside from my listeners, of course.

They're my favorites and then it's books.

So tell me about the Kentucky Talking Book Library.

So we like to say we are the Commonwealth's accessible library.

We provide free audio books and Braille books to over 3,800 Kentuckians.

Who are low vision blind, have a physical or print-based reading disability.

We send out, we lend over 244,000 titles a year in audio and Braille formats.

And so that can be books that are downloaded from the BARD website.

That could be digital Braille that's downloaded.

That can be print Braille.

And it could be our audio books on cartridge.

So we have lots of ways to access our materials.

We do have a annual survey that we put out and 87% of our patrons say they would not have access to Braille and audio materials if it wasn't for KTBL.

So we really do think of ourselves as being a window to the world for people and opening up that space.

Of reading for them in a way that they would not have access to without us.

We also do include an onsite recording studio that allows us to record works by local Kentucky authors.

So we love to feature books and record books that have the people, places and history of Kentucky.

That is something that is really unique.

Oftentimes we get our materials from the people, places, and history of Kentucky.

From the National Library Service and they are recording for popularity at the national level.

So I think it's really special that we have a studio here that can do sort of those hyper local materials that our Kentuckians are going to be interested in.

I have read some of those and they are amazing.

The studio work that you all do.

I've read works by Bobbi Ann Mason, Kentucky author and Crystal Wilkerson.

She's the poet laureate or was of Kentucky and just amazing work in listening and knowing that the person reading that is a Kentuckian and has the accent down and knows what these things are.

Oh, it's really special to do that, to read a book like that.

It really is to, well, I say read.

I'm not getting into the is audio book.

It absolutely is.

Absolutely.

I will make a stand on that Hill.

I will die with you there, 100%.

I'm not even entertaining the notion that that's not reading.

Really not.

But I think, you know, whether you're reading print, Braille, audio, it's all reading and you know, one thing that we've been really trying to do is bring in authors to read their own works.

It's, you know, we, there's just something about listening to an author.

Read the words that they've written.

Nobody is ever going to read it better.

I think nobody's ever going to narrate it better than an author will.

So we just actually this week recorded a book by Kathleen Driscoll, our current state poet laureate.

She came in and recorded her next door to the dead book of poetry.

And then earlier this year, we had Brian Collier, who is an author and an illustrator, he recorded for us, one of the books he illustrated about Stephen Bishop and mammoth caves called lift your light a little higher.

So I think that's just kind of a fun little, little thing that we're really trying to do a bit more of that is awesome.

And I just want to, you, you said BARD earlier and all of, all of your, your patrons who are listening probably know what that is, but for people who don't, can you tell us what BARD is?

Sure.

It is the Braille and audio reading download website.

So it is basically, if you are familiar with public libraries and they might oftentimes have Libby or overdrive who plus something along that line, it's our version of that.

So it is where you can go and you can use either a computer or you can use your personal device, you know, a smartphone like that to download either an audio book or digital Braille.

Right.

And that is how I read.

That's how I personally read my books.

And I love BARD.

I get on the BARD website every single day.

I, it is the app I use most on my phone.

I love it.

It's a fantastic resource.

You know, and I love that they offer content, both in audio format, you know, that you can, you can download to your cell phone or your computer and in the Braille format that you can download to one of the e-braille readers that we can send you for free.

Right.

Right.

So, so amazing.

We're, we're so fortunate because not every, not everywhere in the world has that we are, we are ahead of most places in doing that.

So wonderful.

And I think Kentucky has always been on the cutting edge of stuff, of beta testing programs and things.

So we're really blessed here in Kentucky to have those options.

So Jenny, tell me about yourself and what you do there at KTBL.

Sure.

So I am the branch manager here at KTBL.

I came on in January after Barbara Penegor, my predecessor retired.

So my kind of like little fun fact that I love to tell people is this is actually my second go-around with Talking Books.

My first time was about 2006 and I was a librarian with the Talking Book Library here in Kentucky, and it was my very first library job when I graduated and got my master's in library science.

And I was here for about four or five years.

And then I moved to a different division within the state library for a few years.

And then I had been working in a large public library system here in Kentucky for, oh gosh, like the last 12-ish years or so.

And then this position opened up in Talking Books and I was so excited to see it.

And coming back has felt like this just really wonderful full circle moment to me.

As I left Talking Books the first time, we were just starting to get the digital cartridges and the digital players and BARD was in the beta testing and all of that.

So to see all of that happen and come back has been just really rewarding and fun for me.

And, you know, as to what I do here, I kind of do a little bit of everything.

So you might hear me answer the phone.

I do, you know, my shared customer service, do the strategic planning, budgeting, work with the National Library Service, those kinds of things, you know, day to day.

But I think what I really like to think that I do is I really like and hope that what I do every day makes life better for Kentuckians.

I think that what we do here is we build a community of readers and we connect our readers with the world.

And so I try, try to take that home every day.

And I feel so lucky that I have an amazing job that lets me do that.

Well, obviously I'm kind of a KTBL fangirl.

So I think you 100 percent do that.

You go way above and beyond.

Oh, thank you.

I appreciate that.

I think, you know, we're so lucky we get to work with youth and, you know, students at the School for the Blind.

We provide the School for the Blind with a print Braille copy of every youth title we get.

We serve veterans and seniors.

You know, we help people with education, entertainment.

We have programming.

It's just it's such a fun variety of people that we get to interact with and tasks that we get to do.

Wonderful.

So can you tell me a little about the history of the Kentucky Talking Book Library?

Sure.

So the Talking Book Libraries as a whole actually are part of the National Library Service and the National Library Service sits within the Library of Congress.

So we are what they call a network library.

So they offer us a lot of support.

We get the large majority of our recorded materials for them.

They provide us with the players.

They support BARD, that sort of thing.

And then we're a network library.

And we are at the same time a branch in the Kentucky Department of Libraries and Archives.

So the roots of NLS goes back to really World War I. So they had soldiers coming home from World War I and a lot of them had been blinded.

They had a lot of gas weapons and things like that that caused a lot of terrible injuries.

And they needed a way for these veterans coming back to be able to read.

And so they in 1931 passed the Pratt Smoot Act, which sort of founded the National Library Service as it exists today.

And then the Kentucky Talking Book Library was founded in 1969 with about 4,000 books on records.

And then in 1977, we added our two recording booths so that we're able to record that local content.

And then in 1982, we moved to the building that we're currently in, the Department for Libraries and Archives building.

And then you may remember in 2009 is when we moved from sort of the cassette player and cassette to our new digital format.

Yep.

I remember I got to 2009 is when I got a Victor Reader stream that where you download books and put them on there.

Lots of our listeners still use the Victor Reader stream.

I think it's on a is there a stream three now?

Something like that.

They use that to listen to books.

And of course, the audio players will we'll talk about.

So, yeah, 2009, big year, big year.

My reading went from about 50 books a year to over 100 books a year then.

Love it.

A heavy reader.

That's great.

Definitely, definitely.

So tell me, where is the library located and how many people work there?

All righty.

So like I said, we are located in the Kentucky Department for Libraries and Archives in Frankfurt.

In Frankfurt.

So, yeah, we are we are in Frankfurt and we have, including me, seven people working here.

So you've got me and I'm the branch manager.

And then we have an assistant branch manager and she is also a librarian.

And then we have two readers, advisor librarians, and they're probably the people you're most likely to talk to if you give us a call.

So they're going to pick up and they're going to help you either set up your account or, you know, if you want to change the types of books you're getting or how many books you're getting, all that kind of stuff they can help you with.

We have an outreach specialist.

He helps out in our recording studio, works with our volunteers and travels across the state, talking to different groups and, you know, being at different events to tell people about our service.

And we have an audio technician.

He's the one that makes sure the players are all in good repair.

He replaces batteries if needed.

And then he also the locally recorded books goes through and puts what we call the markup in those books so that you can navigate the chapters and the sections and things like that.

And then we also have a circulation specialist.

And so that's the person who is responsible for checking out every day all of the Braille books and cartridges that are going out by mail.

Wow, wow.

So very busy.

Seven people, I imagine.

Yes, yes, indeed.

And so this is the most important question that I'm going to ask you, because I think that it's broader than people think.

So tell me who is eligible for services from the Kentucky Talking Book Library?

I'm so glad you asked this, because this is definitely something that I think that we run into.

So we used to be called the Kentucky Talking Book Library for the blind and physically disabled, which I think people saw that and thought, oh, well, I'm not blind.

It's not for me.

But it is.

So we are able to serve any patron that has low vision, and that could include somebody who is blind, but can also just include somebody that has difficulty reading regular print for an extended period of time comfortably.

So things like macular degeneration, cataracts, those sorts of things.

We also serve folks who have physical disabilities.

So something we talk about a lot in that realm would be maybe somebody who has had a stroke or another condition and can't hold the book or can't hold the book open and turn the pages.

But that could also be somebody that, say, has an allergy to ink or paper.

And then, of course, we also can serve folks who have a print based reading disability.

So if you have dyslexia, dysgraphia, aphasia, things like that, you are eligible for service.

So we, I think, cover a lot broader of a range than people might think.

And I would encourage anybody, if you have a question as to whether you might qualify or not, go to our website.

You can look at what would qualify you there or give us a call.

And we can talk to you and kind of say, yeah, that would definitely qualify you for service.

This is how you can get signed up.

OK. Do you know that number off the top of your head to tell people?

Sure.

You can give us a call at 800-372-2968.

You know, it's weird how as you get older, you can't remember things, but you remember things from when you're young.

I remember that phone number because I called it so many times to order books.

I could have told you that number.

I was like, maybe I have it wrong.

But no, it's in there.

It's lodged in my brain forever.

And then the website, of course, I'll link to in the show notes.

Do you want to tell what that is?

Sure.

So probably the best way to get to it is to just go to the website.

Kdla.ky.gov.

And we are a tab right up at the top.

And that's going to take you to our main page where you can do everything from read our newsletter, listen to our newsletter, get an application, you know, get marketing materials.

If you're a library who wants to market our service to some of your patrons that might qualify to use us as well, anything like that will be right there.

OK, great.

And it is more people are eligible than I think realize.

Absolutely, absolutely.

You know, and it's you.

Our application process does require a certification.

But again, I think it's a broader scope of folks who can certify an application than maybe people think it can't be a relative, but it could really be just about anybody else.

So it can be a doctor.

It can be a caseworker.

It can be a librarian, an educator.

All of those folks are able to certify the application and say, hey, yes, this person has a condition that prevents them from comfortably reading standard print for an extended period of time.

They qualify for service.

Awesome.

So if you're working with someone at folk rehab that your counselor might absolutely they they send people our way all of the time.

But, you know, if you're not, it could be as simple as going to your local public library and having one of the librarians there certify it.

You know, oftentimes we will get people kind of set our direction from a public library that, you know, they're they're having difficulty reading even large print or they've reached the point where the audiobooks that the public library has to offer just don't work for them anymore because they're difficult for them to use with whatever disability they may have.

Or, you know, they just they aren't able to access it on their cell phone.

They would prefer to have something physical like our cartridge, whatever that may be.

So they're a great place to go as well to get certified.

If you are not with folk rehab or, you know, you aren't able to get it from your doctor or somebody like that.

And I would I would just encourage anyone who thinks, hey, this service might help me, but I don't know.

Go ahead, give it a try.

Give it a try.

Reach out.

The people are nice.

No, it's not a weeding out process.

It's just trying to serve people in the best way.

So I absolutely encourage everyone to give give the service a try.

And you are our best advocates.

I think our patrons are just some of our best advocates to to send people our way.

You all know what a wonderful service it is.

And I'm always telling people, too, we're sort of unique from the public library in that we can serve folks in so many different ways.

We've talked about we can do it for free through the mail and it is free to return cartridges to us as well through the mail.

So the whole service is free like your public library, you're not going to pay for anything.

But we have such a variety where we have available on your phone through the app or you can download to your computer or you can get the cartridges through the mail.

There's a wide way to get our materials.

And then we are also able to do a lot of things that a public library may not be able to do.

And that's sort of tailor what you're getting.

So you can choose all of your books yourself, which is totally fine.

And we've got lots of folks who do that.

Or we can pick books for you and automatically send them to you almost like a subscription service, except it's free, which is even better.

So, you know, you can tell us, I love these authors and these subjects and these genres.

And we can say, OK, you know what?

We can send you two cartridges at a time with three books a piece.

So you'll have six books at a time and we'll pick them for you.

And that way, you know, if you don't want to or have the time to sit and select all your own books, we can do that on your behalf and send you things that we pick.

And, you know, just based on what you like and don't like.

And if you change your mind or you want to add in specific titles, anything like that, you can give us a call, talk to one of our wonderful readers, advisor librarians, and they will pick all of those books for you.

So tell me, how does someone enroll and what documentation might they need?

So to enroll, what you will need to do is fill out an application.

And again, you can get that application online or we're happy to mail it to you.

It might be something that your doctor or your public library or, you know, if you're working with a rehab specialist may already have.

So you fill that out, you get it certified by one of those certifying authorities that we talked about.

If you are under the age of 18, you'll need a parent or guardian just to fill out the little form that goes with the application that says they're aware that you're getting service and you send that in to us.

You can fax it, email it, snail mail it, however you want to get it to us.

And then at that point, we're going to reach back out to you and say, hey, we got your application, give us a call so we can talk.

We will talk to you, find out exactly what kind of service you might want.

If it's a service through the mail, if it's download service, both audio books, braille books, you know, what sorts of things you like to read.

If you want to pick your books or have us pick all of that stuff.

And then we get you set up and we can, if you would like us to, we can send you the equipment, we can send you the specialized player to listen to the audio books, or we can send you that braille e-reader.

And those are both free, right?

Those are free.

Again, everything is free.

It's one of the things that I think is so awesome about this service and the braille e-reader is especially cool because that you can actually also use in conjunction with your cell phone.

You can hook it to a cell phone or a computer and use it to do things like read websites and things like that.

So that's even kind of an extra special tool that we have to offer.

And those could be quite expensive if you're looking to buy one on your own.

So I think it's really a nice service that we have those available for free.

Yeah.

So let's go ahead and talk about the e-reader.

Since you mentioned that it is based on the HumanWare Chameleon device.

If any of our blind readers are familiar with that, it doesn't have all the functionality of the Chameleon, but it is a 20 cell braille display, refreshable braille display.

I have it.

I love it.

I use it.

You can read your Kindle books on it as well as books that you get from BARD.

And so tell me about the anything else about the e-reader.

And then I want to know also, aren't we getting an updated audio player as well?

Yeah.

So I think you covered the braille e-reader really well.

One little fun fact is that space wise, the braille files take up such little space that you can actually download all of our braille onto one device, which is pretty cool.

Not that you would do that.

That would be a lot to go through.

But I just think it's kind of a little little fun fact.

Oh, no, I might totally do that.

I really might.

I love it.

They also do have a Perkins style braille keyboard so that you can connect it with Bluetooth to like an iOS device and things like that.

So if that is something that interests you, if you're listening and you're interested in that, do give us a call.

We are more than happy to send one out to you.

And I'll just say, because I do use the one handed mode, it does have a one handed mode, which is very handy for people like me who can only use one hand.

So it's amazing.

Now, the part I'm excited about also is tell me about the new audio readers that are they out?

Are they coming out?

I can't.

I don't know.

Sure.

So we have we have a lot of new things on the horizon here at KTBL and nationally with the Talking Books National Service.

So one of those things is the the new machine, the new player.

It is called the DA2.

So if you currently use our DA1, the advanced player, it is based off of that model.

And we also have a standard player.

I do like to tell people, I think for most of our listeners who are using our audiobooks, they get the standard player at least to start till they kind of get familiar with it.

It's a little more straightforward.

And then the advanced player has some additional features where you can change tone and speed and things like like that.

And so they have used that DA1 model.

And we will be hopefully within the next couple of weeks getting our new DA2 players.

And the cool thing about the DA2 player is that it does everything that the regular advanced player does.

But if you want to, it also is able to connect to your Wi-Fi and access BARD.

So if you prefer to listen to your BARD books on your player and you don't want to download them to your computer and put them on your flash drive and then put the flash drive in the player, you can actually automatically download a number of books at a time to your player from your BARD wishlist, which is pretty cool.

That is very cool.

Awesome.

That is amazing.

And so does someone need to, internet slang, asking for a friend, does someone need to call and request the new player or will they be coming out automatically?

Is that yet to be determined?

Right now we don't have them.

We're waiting to get our shipment.

So they have ordered our shipment to be sent.

We're waiting for it to actually be shipped.

Now we are getting a limited number of players, so we are asking folks that are interested to give us a call and be put on the list and we're going to ask you a few questions when we put you on the list.

And so one of those questions is going to be, are you a veteran?

We do prioritize veterans and we are going to ask you if you have Wi-Fi.

And so we are prioritizing first people who are both veterans and have Wi-Fi.

And then after that would be veterans who don't have Wi-Fi, patrons who do have Wi-Fi and regular patrons who are not veterans and don't have Wi-Fi.

And the reason that we're doing it that way is NLS always does prioritize veterans in these things since that really is the reason the service was started so long ago and now has expanded to serving other patrons.

But also because the DA2 to take advantage of the new features, you really do need Wi-Fi if you're going to use it without access to Wi-Fi.

It is essentially a DA1 player.

So we want to make sure that it's going first to those folks who will be able to access all those new features.

But right now we don't have a particularly long waiting list.

So if you are interested, give us a call and we are happy to add you to it.

And we'll be working our way through that as more players get distributed.

And the same if someone, a Braille user hasn't yet gotten the e-reader, doesn't know about that program, do they go about getting the e-reader the same way?

So if you're interested in the e-reader, just give us a call.

We currently have those in stock, so that is easy for us to go ahead and send right on out to you.

Okay.

Wonderful.

And one thing you mentioned that you worked at a public library before, I'm wondering how is working at Kentucky Talking Book Library different from working at another like public library system?

So I think we have the best patrons.

So I say that every library that I say that.

I, you know, library is just, it's so much fun and we have such wonderful people.

But I do think that at the Talking Book Library, we just have such, such supportive and kind and wonderful patrons, which is really just makes it a pleasure to work here.

I think one of the biggest differences between here and a public library is that the largest group of users we serve is folks who have low vision or are blind.

So it's a very kind of niche patron group.

And in that regard, whereas a public library, you know, you may have some folks who have a visual disability, but you've got a little wider of a range.

I really enjoy that.

I think it gives us a chance to really build community and be part of growing and supporting that community, which is a neat thing to be able to do at the end of the day.

A big difference that I do find here is, you know, we are, we're located in Frankfurt.

Transportation can be a challenge for a lot of folks that we serve.

So we do most of our business through the phone and email and mail, not face to face in person, and so I think that's kind of a big difference with a public library who you're more likely to have people, you know, physically coming in through your, through your front door.

So those are a couple of differences I think that I have found, but I really enjoy it.

I love my job and I feel so lucky to get to be here and working with the folks that I get to work with every day.

And when people send books or cartridges, which are basically, when you say cartridge, you're talking about basically like a drive, right?

Yes, it's a USB flash drive that's in a casing that is, you know, about the size of a cassette tape that you, you know, insert into our player to play from home if you choose to get service that way.

A little bit kind of about how we are funded.

So we are a network library of the National Library Service.

We receive support from them through NLS consultants.

We receive audio and braille books from them.

We get our specialized players and accessories, access to the digital download barred platform, all of those things.

We do not receive operational funding from National Library Service.

Really?

I did not know that.

We do not get funding.

We get lots of in-kind from them.

You know, they give us lots of support and materials and that kind of thing, but we do not get funding from them.

So our funding is a mix of, you know, IMLS, LSTA grant, the Institute for Museum and Library Services, and they have something called LSTA Grants, Library Service and Technology Act grants.

We are a little more than 20% funded by that grant, and then we also receive funding from the state and then we also receive donations.

So our IMLS funding that we receive supports things like our in-house recording studio, our programming, outreach, our on-demand braille items.

If somebody calls and says, hey, can you braille me a soccer game schedule?

Something like that.

Those are things that it supports.

And you do that for people, right?

Like, and we absolutely, yeah.

You know, braille, we can braille many things here if somebody needs it.

And then we also do have ways to like request books to be brailled if there's a title that somebody wants that's not available in braille through an LS.

So we definitely can do those things.

Just as we're wrapping up, can you tell me, are there any new things on the horizon?

So if you are already a patron of the Kentucky Talkie Book Library, you may have recently received an email and we'll probably receive a few more talking about the BARD2 update.

So to make BARD2 and BARD Express compatible with the new DA2 players, they've done a little update.

It shouldn't be any major changes in functionality, but there will be some new features like your ability to search your BARD wishlist and things like that.

We are doing the training for that over the next couple of weeks.

So I'm going to learn more and we'll be able to share more at that point.

But right now, it seems like the app, the BARD app, like on your phone, your Kindle, things like that, is not going to really change.

There might be some back end changes that the user won't see, but the interface will be the same.

If you use BARD Express on your computer, there will be some changes that has recently been updated, and then if you use BARD2 on your computer, it might look a little bit different than you are used to.

It will still be extremely screen reader friendly, just have some updated functionality features that I think our users will appreciate.

Okay.

And for anyone who's thinking about reaching out and enrolling in the program, and you hear all of us talking about BARD and BARD Express and apps, and it seems daunting.

I promise it's not.

It is simple.

It's just like anything.

It's just learning stuff.

And if you have a problem, the librarians will help you.

We are here.

We are happy to talk you through things.

And, you know, something that I always try to tell people, and we've talked about it a little bit here today, we are a highly customizable service.

So if you are comfortable with technology and you love using your cell phone and you just want to get the app for BARD and download your books to that, that's great.

You can do that.

If you would rather do the digital braille, the e-braille, and get one of our braille readers and download your books, you can do that.

If that's something you are not comfortable with, then you know what?

We can send you one of our players.

It comes on, the book will come to you, the audio book on a cartridge about the size of a cassette, you literally just push it into a slot on the player and press play.

So we can make it as simple as you would like, or you can do it yourself and, you know, make it as complicated as you like.

Some people really love to organize all of their wish lists and suggested books and all that kind of thing.

So it's, you can sort of make the experience what you want it to be.

And we can make it super simple or, you know, as detailed as you would like.

There are over 200 books in my wishlist.

I admit I have a problem.

I have a problem.

Well, you'll be happy to be able to search your wishlist.

I will.

I really will.

I'm looking forward to that.

I really am, but I just don't want, I don't want there to be a knowledge barrier to entry.

Trust me, everyone will figure it out.

It will be great.

I want everyone to have access to the service.

I love it so much.

And books are wonderful.

Books are great.

And I would, I should say as well, but while we're kind of on that topic, if you are not yet a patron, and you're interested in learning a little more and discovering talking books, we are hosting an open house.

We would love for you and all of your listeners, whether you currently use talking books or not to come visit us.

So we are doing an open house at our Frankfurt location, 300 Coffee Tree Road in Frankfurt, October 10th, from one o'clock to four o'clock.

It's just going to be a drop-in program.

And we are going to have library tours, so you can come tour the branch.

You can meet your librarian.

Some of our volunteer narrators and monitors are going to be here.

So if you enjoy our Kentucky books, you can come meet somebody who has narrated one of your favorite Kentucky books.

We will be able to sign you up for service.

We will be able to help you access BARD.

If you don't do that currently and you would like to, we can make changes to your account.

We are going to have some accessible board games and things like that.

We are going to have some partners that are going to have some tables here.

So I would just love for anybody who is able to make it here to Frankfurt on October 10th, one to four, come and see us, come and meet us, learn about the service, and just be welcomed.

We are excited to have everybody come and join us.

That sounds like so much fun.

And that's on October 10th?

Yes.

Wonderful.

Wonderful.

That is exciting.

Well, Jenny Smith, thank you so much for joining me today and telling us all about the Kentucky Talking Book Library.

Well, thank you, Kimberly.

We are so happy that you reached out to us and thank you for giving me the opportunity to talk about Talking Book.

Demand and Disrupt is a production of the Advocato Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley, and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song, Change.

Don't forget to follow or subscribe so you never miss an episode and please consider leaving your review.

You can find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks everyone.

You say you've seen a change in me, just for once I think I would agree, we both know there's a difference, we've had our curtain call, this time the writing's on the wall.

This wall of words we can't defend, two damaged hearts refuse to mend.

Change, this situation's pointless with each and every day, it's not a game we need to play.

Change, we try to make things better, repair and rearrange things, but each and every letter spells out defeat for us to open up our bonds and hearts to change.

To change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change, to change.

To change, to change, to change, to change, to change. you

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Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Welcome to Demand and Disrupt, a disability podcast.

I'm your host, Kimberly Parsley.

And I'm your host, Sam Moore sitting here.

I've got a hot cup of black coffee to my direct left.

And you've got a a cup of black tea.

I know, Kimberly, but you're not real.

You're not super happy about it being black tea, are you?

I am not, I cannot find.

I like tea with cream in it and I cannot find the cream in the refrigerator.

And so now it actually, Michael hates tea and he calls it, uh, there's an episode of Ted lasso where they refer to tea as tree juice, as a tree juice.

Yep.

And, uh, also pigeon sweat.

They call it that.

So I can maybe go with the tree juice.

So for any of y'all, if any of y'all have some cream that you don't need, you know where to send it.

Oh, the thing is it's in that refrigerator somewhere, Sam.

It's just, I can't find it.

And it's cold in there looking around for cream.

I just, I know it's in there.

I just can't find it.

Don't you have to, while your hands get cold and you just need to warm up.

It's, it's just, it's just a blind problem.

You know, it's, uh, I've been there, done that today on the show.

I have Amanda Mobley.

She is the director of the center for accessible living.

And she is going to tell us all about the upcoming, the second annual advocacy summit sponsored by Cal, and it is going to be in Louisville on October 16th and 17th, and I am going, and I am super excited.

Uh, I'm going to go, I'm going to go.

I'm going to go learn how to advocate and do it better and be awesome at it.

That's what I'm going to do.

I'm going to learn.

You know what?

I may take my, uh, my recorder and you never know what's going to happen.

I may interview some people for the show.

You just never do know.

It's good to go.

And then we can play highlights here on the, on demand and disrupt.

We just might.

So y'all all should, uh, all should, should go to that.

So I'm gonna talk to her about that.

And you know, I don't, I don't go to Louisville much, Sam.

I, here in Bowling Green, we're closer to Nashville.

I don't go to Louisville much at all, except for work stuff.

And you know, I think I know why.

You think you know why?

I think I do.

When I was young and they found the disease that I have, which of course started in my retina, they sent me to Louisville.

So he was like all the time, every two, three months, every Easter break, every Christmas break, summer vacation.

I was always going to Louisville for surgery.

And I think when I became an adult, I just decided I was done with Louisville.

You were, you were burned out on it.

I just was.

It had, it had some bad, bad experiences there, but I think I haven't been fair.

Do you, so I'm excited to go back to Louisville.

Tell me, do you know much about Louisville?

You know, I actually, I would like to think that I do Louisville, Louisville has really grown on me over the years.

In fact, if I, you know, if I had to move outside of my current locale of Henderson, you know, my, a lot of times I'll say it would almost be a, a three-way tie among my top choices, Louisville, Lexington and Bowling Green, because I, I have a, a soft spot in my heart for all of those places, Bowling Green, because I went to college there, Lexington, because mom and dad went to college there and we made quite a few trips there growing up and then Louisville, because I have quite a few second, third, fourth cousins there.

My, my ocularist who used to polish my prosthesis used to be in Louisville.

So we had to go there twice a year to see him.

And of course, you know, I did the short courses at Kentucky School for the Blind there a few times a year when I was in school.

And so, so yeah, it's a, it's a, it's a great place.

Of course I could plug restaurants there all day long, but then people would be like, Sam, do you do anything else but eat?

You know what, there are people who make their whole online presence about restaurants.

Everybody loves to talk about food.

It's like the weather.

You can't go wrong talking about food.

You know, yeah, I'm telling you that's, that, that brings people together even when they're like total opposites on other things.

But anyway, we'll give a few free plugs here.

Um, for those of you that love burgers and who doesn't love burgers, right?

Kimberly, I mean, who doesn't love, WW Cousins is a Louisville institution.

Is it?

I've even had them on my podcast before talking about their burgers.

And you know, they've got, you know, any kind of topping known to man.

And, um, you know, you can dress it however you want to.

They've got, uh, bacon, of course, uh, chili.

You can pair with it, which is above average chili.

And if that weren't enough, Kimberly, they even have a bakery inside.

Oh, so you can get your cookies and you can get your brownies.

Oh, that's awesome.

Now, what's this place called again?

It's a WW Cousins.

Oh, and it's a, just a single location there in Louisville.

Yeah, they used to have more than one, but I think it's just, uh, the original location is, is the only one that's open now, but, uh, but it's been there for decades and you just, you just can't go wrong with, uh, with cousins.

And then, uh, my ocularis told me about, um, a place called beer nose, beer nose pizza, you know, that could be, that name could easily be misinterpreted.

It could.

It's so many ways.

Yeah.

But anyway, uh, beer nose has, uh, you know, won awards for best pizza in Louisville several times and, and we can understand why, because, uh, after having gone there a number of the times we've, uh, been in Louisville over the years, it is definitely, uh, uh, a good pizza and it's top heavy, you know, you can get a sausage pepperoni and even though that sounds pretty basic and it is, they load you up with sausage and pepperoni.

There's, there were times when me and mom and dad struggled to finish a large, even with three of us working on it.

So, uh, you know, those are two places, cousins and beer nose, Kimberly, that you need to hit up while you're in Louisville for that advocacy.

I, I'm, you know, and I do love a Kentucky hot Brown.

Oh, hot Brown.

Yes.

Yeah.

I do.

Yeah.

The, uh, the Brown hotel, I'm pretty sure it's where that originated.

That's where it originated.

Now you can get it more places, but I don't know if, if it's, uh, I guess authentically and it has to be in Louisville.

I don't, I don't know.

Um, they probably tell you they have the best ones.

They might, and, and, uh, you know, um, people say like a Derby pie.

I've often, what is a Derby pie?

Just a pecan pie with chocolate chips, or is it something different?

You know, that's a, that's a good question.

I think that, I think there's a, a little difference, you know, the, I know Kern's kitchen in Louisville, they, uh, popularize the, the Derby pie.

They could, they could tell me more about it.

What I've, what little experience I have had with them, you know, they've got, uh, you know, peanut butter in them and extra nuts.

So really, so I think it is, um, it does have a distinction from the pecan pie, even though pecans have a strong presence in the Derby pie.

Clearly I need to do more eating in Louisville.

Clearly.

Yeah.

Well, I guess we could all do a little more probably, but, uh, not to mention they have the, uh, the slugger museum and, um, you know, the Louisville slugger field where I enjoy going to Louisville bats games with, uh, my buddy, Brian from school who lives there.

So whenever I go to Louisville and see Brian, we usually go to, uh, a bats game.

And for those of you that don't know, that is the triple A baseball team in the, in the Reds organization.

I was about to say, still affiliated with the Reds, right?

Yeah, still affiliated with the Reds.

You know, I have never even, I'd be ashamed, I guess, as a Kentucky and I have never been to Churchill downs.

You never have.

Well, never.

I'm going to make a confession.

I haven't either.

Really?

Oh, okay.

So there you go.

Yeah.

Keep that to yourself.

Pete, exactly.

Podcast land.

That's a, but I have not, I've been all around it.

Uh, I've been to plan, I've been to some Derby parties, but, um, and I've been to Kingland and Lexington.

Yeah.

Yeah.

You know, that's another historic place, right?

Um, right there.

Uh, not quite as famous as, as Churchill downs, but close, but, uh, but anyhow, yes, I did want to attend at least one Derby in my lifetime, even though some people say they go once and they don't want to fool with traffic and stuff again.

I hear it's, I hear it's kind of a, a whole ordeal, you know?

Uh, you know, it's kind of misleading.

I was like, you mean people come for the fastest two minutes in sports and they make that much effort to get there.

And then soon enough, then soon enough, I learned that there were other races throughout the day that, you know, weren't televised and so I actually go and.

Make a day of, and then, you know, uh, a decade or so ago, I learned about the Oaks and all the, and of course the Oaks is the day before.

And, and, um, Derby, it's a big, I think the Derby, of course, is Derby Thursday.

That's what the locals call it there in Louisville.

So I think they, I think they found a way to stretch it out over a full week now.

Yeah.

Yeah.

Tourism tends to do that.

You know, uh, back to the, the Derby pie, if any of our listeners know more about what makes the Derby pie, a Derby pie, they can send us an email.

How might they do that?

Sam?

Yes, please email us the, uh, the email address.

Are you ready?

I believe it's demand and disrupt at gmail.com.

I'm not sure how we established that address.

Oh, but it's all one word, all lower case.

And, um, we love hearing from our disruptors.

Don't we do.

We love hearing from disruptors.

So y'all, y'all, uh, tell us about Derby pie and Kentucky hot Browns and all, you know, about Louisville and the fun stuff to do.

I do have some trivia, uh, from an article that was written way back in 2002 when the NFB had their convention in Louisville.

And so did apparently you told me the ACB that same year.

And I'm not sure if it was the same year or in the next year or the year before, but yeah, they were, it was the hotspot for the blind people conventions.

It was, yeah, I was blind central, but, uh, but anyhow, yes.

NFB, somebody from the NFB wrote an article on the history of Louisville.

And, and, you know, it has a definite importance in the disability community with, uh, you know, uh, Kentucky school for the blind and the American printing house.

But anyway, we'll start Kimberly with, uh, with the golf house because that's where the NFB convention was held.

I don't know about the ACB that year, but the NFB national convention was, uh, at the golf house.

Do you know when the, uh, golf house opened Kimberly originally?

You could have at least given me some hints beforehand.

Well, we got to make sure you lose.

You could have given me some hints beforehand.

Uh, do I get a multiple choice?

Uh, no, I can't be that generous.

Oh, wow.

I will tell you that the, uh, there are three, uh, the current, uh, iteration of the golf house is the third one.

There were two others previously on the same location.

No, not quite.

Oh, okay.

Okay.

Gotcha.

The current one is at the fourth street and river road.

Um, the original was at the corner at the Northeast corner of seconds and main streets in Louisville.

And, uh, it was established.

Okay.

Okay.

Do I have to guess, or are you just going to go ahead and tell us?

Well, I'll give you one wild guess.

Okay.

Oh, you're making me guess.

Um, I'm going to go with 1900 just cause I don't have any idea.

You know, you're, you're not overly far off, but, uh, it was actually established in 1834.

That was real far off.

It was only 64 years in the grand scheme of things.

Wow.

That is old.

I did not realize that 1834.

Wow.

That's old.

And then the, and then that, uh, the original golf house, uh, uh, caught on fire, I think in the 1860s and then they, uh, they built a new one.

And then that had to close in the early 1900s because of financial struggles.

But, uh, anyway, that the golf house, as we know it, the current iteration has been around since 1973.

So, you know, it's not exactly new.

Uh, we will now switch gears to, um, Kentucky school for the blind, which, uh, came about in 1842.

I won't make a guess that year.

Oh, thank you.

I thought you were going to make me do years again.

Yeah.

I'll save you some, uh, some misery there, but, uh, anyhow, yeah, 1842.

That was, uh, that was it.

But anyhow, uh, it's full of history as well.

Did you know, Kimberly, that, um, Kentucky school for the blind was the sixth school for the blind to emerge in the United States?

I did not know it was the sixth, but I knew it was one of the early ones.

Does that count for something?

Yeah.

We'll give you props on that one.

It was one of the earliest.

It has a, it has a rich history and a devoted, uh, devoted alumni.

It does KCB or, uh, KSB, KSB.

So it is a devoted alumni.

I have, I have noticed that now, uh, we're going to fast forward about a hundred years to 1945 that in that year, Kimberly, uh, KSB became the first school in Kentucky to establish a team in which sports.

Would you happen to know that Kimberly?

1945 was the year KSB became the first team in Kentucky to establish which sport, the first school to establish which sport.

Uh, wheels are spinning.

I can just, they are, they are.

Um, you know, through the magic of editing, I could just get this wrong, but, but just do it, do an edit and put it in as right.

So, uh, yeah.

Nobody else has to know that you even thought about, you know, I have an idea of what I think it is, but if it's wrong, it's going to sound so stupid.

No, well, well, if it does, we'll just laugh and you'll just laugh at me.

I should be fine with that by now.

Is it fencing?

No, but that's not a bad guess.

It was wrestling, wrestling.

You know what, that was going to be my second choice was wrestling, but I had heard something.

Oh, I know what it is.

We have someone that I'm trying to get on the show who is a wheelchair fencer.

And that's why I was thinking of fence.

Oh, that's right.

We've talked about, yeah, but, um, yeah. 1945, uh, KSB has a strong wrestling history.

In fact, uh, they actually won the state wrestling title in 1966.

Oh, wow.

Uh-huh.

Oh, wow.

That was cool.

Uh-huh.

Now, uh, they don't wrestle from what I understand.

They don't wrestle at the KHSAA state level anymore.

I mean, they're still member of the KHSAA, but, uh, they have, um, they have a conference that they're in.

And I think they mainly stick to, uh, you know, their conference, uh, tournaments and things like that.

Now they do have individuals that, that wrestle, uh, in, in the state tournament, I guess, if they're a good fit and, and, uh, they can, they can hack it, so to speak, but, uh, but as a group, KSB from what I've read does not wrestle the KHSAA, uh, state tournament anymore, but that does not take away from their rich wrestling tradition that they have for sure.

And, um, so anyhow, um, and then a few, you know, APH is right there next door to it, they actually started in, uh, 1858, I guess that's 16 years after KSB began.

But anyhow, uh, did you know that in the beginning, Kimberly, APH was actually housed in rooms on KSB's campus?

I did not know that.

That is interesting.

They were housed in rooms on KSB's campus.

Although here's a little true false for you, Kimberly.

Oh good, he's going to throw me a bone.

Look at that, give me a 50% shot.

Yeah.

Good thing about this is, uh, you got a 50% chance of being right, but anyway, so, uh, true or false, uh, KSB actually served as, uh, a union hospital during the civil war.

Oh, I bet that's true.

That is in fact true.

I bet that's true.

So you did not go.

Yay, me.

I got one, you're not going to be shut out in this game, Kimberly.

So anyhow, thanks to your generosity.

That was, uh, but yes, Kentucky school for the blind.

Wasn't that the union hospital during the war.

And so, uh, private funds had to keep, uh, APH afloat, uh, during those years, but they did so lots of history in Louisville.

Oh yes, absolutely.

It's a, uh, a definite historic city.

And so you can get a feel for that.

Where do you go for, um, that advocacy conference or it is for pleasure.

It is at, yeah, the, the conference is being held at the Henry clay and it's going to be on October 16th and 17th.

And I am excited about it.

They're going to have lots of fascinating speakers, lots of chances to, well, you know what, how about we just go to my interview with Amanda Mobley and let her tell us that sounds good, but before we do Kimberly, you will be there signing autographs during that conference, right?

I'll be there doing something.

Will I be signing autographs?

I don't know if anybody wants me signing anything.

And not only anyway, but yes, we know you'll enjoy this chat with Amanda though, for sure.

Absolutely.

So listen to my chat with Amanda Mobley about the upcoming advocacy summit.

Today, I'm joined by Amanda Mobley.

She is the executive director of the center for accessible living.

Hey, Amanda, how are things going up in Louisville?

Good.

They're going good, Kimberly.

I appreciate you having me on.

It's been very busy, very busy up here, but things are good.

It is very busy at a center for accessible living or Cal as we, um, talk about it.

And I'm going to get a update from you at the beginning, at the end of the interview about all the new things coming up at Cal, but the main thing I want to talk about, which is so exciting, is the upcoming advocacy summit.

So can you tell me some about that?

Yeah.

So it's a, this will be our second annual advocacy summit in the, in the last little bit.

Um, last year was our first one and it honestly, it went better than we even expected.

And so this year, it's going to be our second annual advocacy summit.

It's going to be better than we even expected.

And so this year we're, we've learned from what mistakes we made last year.

And I think this year is going to be even better.

So the advocacy summit is, you know, it started out, I think, as just, we need a statewide advocacy network.

Kentucky needs that.

We don't, you know, what I think people have tried in the past.

We never really have a good one, a good, strong one.

And this is a way that we're able to do that and also become better advocates ourselves.

People together across the state, we all work on common causes, you know, common problems.

We can kind of work together on that.

And then we have trainings that help us become better advocates in the end.

So.

Wonderful.

Because that is so important in an advocate more today than ever, I think becoming advocates for ourselves, learning to advocate for our community.

Oh yeah.

Yeah, definitely.

Now more than ever, there's so much, so many things going on out there than so much that we need to be aware of it and be able to address as quick as we can.

So, yeah.

Who's this summit for?

Who's coming?

Honestly, it's for anyone.

It can be for people with disabilities.

It can be for families of people with disabilities.

It can be for people who just want to be a part of the cause.

It can be for other organizations that are working.

It's just, honestly, it's for anyone that wants equality for people with disabilities.

And I think that's something, you know, we're striving for every day.

So it's for anyone that wants to be involved in that.

Wow.

So that's a quite an audience there.

But a lot of people, so what will people learn who do come?

What will they learn?

So we do, the first day is more, I always call it like a pep rally.

I don't know the people that are also helping me plan that are probably like that.

It's not what it is, Amanda, but it feels like that.

Like, you know, we just kind of, we have keynote speaker.

We have, you know, a lot of different presentations of other organizations and what they offer and things like that.

And then, you know, we have a lot of good times that day, some question and answer sessions, things like that.

And then the second day we do workshops where, hey, it's kind of like, we have a couple going at once, so you kind of just get to pick which one you want to go to.

So that second day is like targeted groups to meet specific needs or things like that, like a breakout session sort of?

Yes, ma'am.

Yes, ma'am.

Yeah.

And it's smaller groups.

So it's more one-on-one kind of stuff.

Yeah.

Oh, wonderful.

Okay.

I should have said at the top that the summit is coming up on October 16th and 17th, and that is a Thursday and Friday.

And where is the summit going to be this year?

It will be at the Henry Clay here in downtown Louisville.

It's the address is 604 South Third Street.

And we will be on the third floor.

We have the entire third floor.

So there's accessible parking there.

There's accessible bathrooms.

We have all kinds of things, neat things.

We have, we're offering lunch, breakfast the first day, lunch, snacks.

We have snack opportunities, all kinds of things.

So, and it's a free event.

So, you know, you come out, you get at least free food, which is always a plus to me.

I'll go anywhere with free food.

So true.

Me too.

And I will be there.

I will be there.

I may, I'm not sure what I'll be doing.

I may be recording some things we never know what I'll do.

I know you just never do know.

And you know, another thing, I think you mentioned like accessible bathrooms and parking and things.

Sometimes I think it's important for us to go places where we know we're welcome.

Oh yeah.

Oh yeah.

That's a huge, that's a huge, huge deal.

And I, and I feel, I feel it and I make sure that's a priority where we, where we do things.

So yeah, definitely.

Yeah.

And, and I love that you call it a pep rally because I mean, you know, advocacy is work, but when you get together with other people doing it, it is fun and it's re re energizing.

Yeah.

And we get it, we get to celebrate each other that day, which is really fun.

Cause you know, all of us, whether you're, you know, no matter what area you're in and the people, you know, that come, I think everyone's doing their part and everyone needs to be celebrated in what they're doing.

So yeah, definitely.

Yes.

Well, 100%.

And so I'm, I'm excited.

I can't wait.

And so, do you know some of the speakers who are going to be there?

Yes, ma'am.

So we have a couple things.

So our keynote speaker on the first day will be Jessica from nickel is the national council on independent living.

She is well in the advocacy world and she'll be, I'm certain what she has to say.

It will be very well received and exciting for us and really get us pumped up on that first day.

Some of the, a couple of the workshops, it's going to be Kentucky fair housing is going to be doing a workshop on housing rights for people with disabilities.

And also I think they're going to be talking about violence against people with disabilities and in, you know, kind of how that plays into housing and things.

So that'll be a good one.

Protective protection and advocacy will be giving a workshop on alternatives to guardianship.

So, you know, sometimes I think people think that's the only option.

And that will be a really great, I think that'd be a really good workshop to sit in on just, you know, to learn that, Hey, that's not the only thing that we can do.

There's other things.

Way better.

True.

Way better things.

Yeah.

Yeah.

And then we also have, this is pretty exciting thing.

So the, this isn't really a speaker, but it's exciting.

The first day we have secured, someone has volunteered their time to do professional headshots.

So between eight and nine a.m., it's, it is limited.

I mean, you know, it's during that hour, but if you get there early enough, you can get a free headshot.

So, well, that's cool.

That, that is awesome.

Cause so many of us are doing work and have websites and things and we need, you know, we need that sort of stuff.

Right?

Yeah, definitely.

Wonderful.

And, you know, I'm, I hate that we have to have a discussion about violence against people with disabilities, but we do more now than ever.

It seems, you know, Amanda, for the first time I had heard that this happened, like that people would deny that someone has a disability, you know, let's say, well, no, you're not really disabled.

I guess maybe with my disability, it's so obvious that I don't, I've never had that happen, but I was actually working with someone recently.

Who, and it was in a court situation where they denied her reasonable accommodations because they said she actually could see because she was on her phone.

Yeah, you know, it's wild.

And I think with, I really think with mental health right now, too, that's just a whole nother thing.

Like, so my disabilities are mental health related.

And I think that a lot of times, if it's not visible, people, you know, don't want to really say, Hey, that's a disability.

So I run into that personally, just on that level all the time where I have to be like, Hey, I actually do have a disability that I do deal with every single day.

But you know, yeah, I get that.

Disabilities.

It's, it's funny how that works.

I feel like we're all dealing with that on some level, I think for sure.

I, and I truly don't know why it's worse now.

I truly just, it was baffling to me.

It really, really was.

And I'm sorry that you, you have to deal with that because gosh, you have to already, I mean, I personally have to fight for reasonable accommodations.

I can't imagine if people are like, no, you don't, you don't really even qualify.

That is absurd.

Well, you don't look like you have a disability.

So we don't think, you know, and that's the thing.

Like if you're high functioning and whatever it is, that doesn't mean that it's any easier, you know, you still need that.

You still need those accommodations and, and you still have to go.

Yeah, absolutely.

And what opportunities will there be for people to get together and share their experiences?

Okay.

So we do, like I said, and throughout it, we do do question and answer.

So like, you know, like sometimes people will have a comment to say whatever we do have, like, you know, we'll have microphones in the audience and things.

But the main thing will be the happy hour, which will be Thursday.

It starts at five 30 and it will be attached to the Henry Clay is the Hilton.

And so you'll, the Hilton, I think it's the Hilton Garden Inn.

He'll go there on the top floor.

We will have the happy hour.

That's a really great networking opportunity for everyone.

I think that there will be organizations, there will be people with disabilities.

There'll be families, everybody will be there.

I think it's going to be a really fun thing.

So that'd be a good time.

We'll have appetizers and things there then too.

How many people involved in planning this event?

It sounds huge.

It, well, it is, it is honestly.

So last year we did a hundred people coming and, and you know, we pretty well capped out there.

So this year we upped it to 150 because we were comfortable.

I think you learned from the year before.

So, you know, we were more comfortable upping it a little bit more this year.

And this year we're doing 150 guests.

So the planning committee consists five or six people, but I know that there's so many more involved in it than that.

Like there's so many people behind the scenes that are just, it's, it's constant, honestly, and Hannah, our marketing person here at Cal is really just, she's heading it up and doing a great job with it.

So I can't take any really of the credit at all.

It's all her.

She's doing awesome.

So you can, we'll let you take the credit.

Go ahead.

Who's going to say, I guess that's what I get to do in my role, huh?

I get to take the credit.

You absolutely do.

And you know, you said you learned from the last summit.

I think if you don't learn from the things you've done before, you're doing it wrong, don't you?

Oh, I agree.

Yeah.

And we'll, we'll learn this year.

There's no doubt about it.

We'll do things wrong.

So if you're, if you're coming to the summit and we do something wrong, we do actually send out a survey afterward.

Um, you know, just suggestions and things like that.

How could we do better?

Cause we do want to improve every year.

So that's a great idea.

That is a great idea.

So, I mean, I know last year was the first year for the summit.

So tell me, how did the idea for having the summit in Kentucky come about?

And I know you said that there was a real need, but so was there one, uh, sparring event or so how did it come about?

Okay.

So, um, it's funny, actually Cal used to host something very similar in the late nineties where other, it wasn't necessarily the exact way that we're doing it now, but, and I don't even know that it was called an advocacy summit, but it was very similar to this.

And then we just kind of, you know, it got away from us, I think.

And a couple of years ago, Dave Mathis, who you know well, I did a great job to me and said, Hey, Amanda, we used to do something like this at Cal.

I think it would be a great time to do that again and, and start an advocacy summit, you know, within, and then I thought on it and I talked with a couple of people, David Allgood was like, we really need a statewide advocacy network, like we need to do that.

And then I was like, you know, I want to be a part of it, but I want to be a better, I want to be a better advocate than I am because I think there's always room for improvement and I know that I can improve on that all the time.

So that's just kind of where it came.

And then I, you know, we, we rolled that idea around a little bit amongst leadership and then we just, I was like, let's do it.

Like, why not?

If you're, you know, everyone was like, well, we've, you know, we don't really have experience.

I was like, well, let's figure it out.

So that's what we did last year.

And it ended up, honestly, it went over so well and everybody really enjoyed themselves and I think took a lot away from it.

So now we're on the hook.

We're going to have to do it every year, Kimberly.

We're not, we're going to have to do it all the time.

So, and, and you're going to blame it all on Dave because that's what I do.

He's a, of course, executive producer.

He's listed as an executive producer of the podcast.

And so that's what I do when things don't go well, I just blame Dave.

Yeah, easy.

He's an easy scapegoat.

He is.

So we, we really do love you, Dave.

I know you're listening.

So tell me if someone's sitting there and they're thinking, huh, do I really want to do, do I want to go do it?

Do I not?

So tell me about some of the highlights from last year that might people who might be on the fence about the route, do I really want to drive to Louisville, you know, tell me about some of the things that happened last year that might, might turn, turn the tide.

So they decided to go.

Yeah.

So it was honestly, it was so good.

And like I said, we learned so much from that, but the commissioner came last year, commissioner Elridge came and announced our, that was the first announcement of our expansion project here in Kentucky, where we're covering every County in Kentucky, all the centers for independent living will be covering every County we've started that now.

It's, you know, it's a slow process, but we're working on it and be able to provide, you know, independent living services throughout the state.

We also presented two awards last year, which we will be presenting again this year.

Last year we presented all good advocacy award.

Obviously that was presented to David all good because that's who his namesake of that award.

I bet he was so surprised he had no idea.

Actually we did surprise him.

It was pretty amazing.

Um, this year I'm excited about the person that will be getting that.

I think that is, it's going to, I mean, I'm always excited.

I think awards are few and far between, especially in our line of work.

And I think that recognizing people for the hard work they do that often goes unnoticed is, is so important and so exciting to do.

And then last year we also did the community champion award that went to forever.

Yes.

Last year with, um, I actually, I actually personally presented that to Donna Fox, the late Donna Fox.

So that was really special moment for me.

And I think a special moment for everyone.

So Donna Fox, of course, beloved in the Kentucky disability community and passed away, uh, this year or so.

Yeah, definitely.

So we, I think that, you know, there's a lot of different things.

I do know that the awards are pretty special for me.

I enjoy those.

And like I said, just being able to celebrate everyone is really important to me.

So wonderful.

So how do people register for the summit if they want to go?

So a couple of ways.

One, if you are tech savvy and you're on social media, which I know not all of us are.

I, if you're listening to a podcast, I feel like you're somewhat tech savvy though.

So probably a little more tech savvy than me.

Um, then you can go to our social media, uh, we have links on all social media on all platforms, pretty much.

If you look up center for accessible living, I think we're on the majority of them.

And you can click on the link to register on there.

You can go to our website under the events tab.

There is a link for the advocacy summit.

It's really simple.

It's just a simple form you fill out and that way you can give any accommodation through accommodations.

You may need any other accommodations.

You can submit those on there.

Or if you, if you don't want to do any of that, you're, you're not on any of those things and you just really just want to talk to someone you can call the center here in Louisville, our number is 502-589-6620, extension 121, and her name is Hannah Richards and she'll get you signed up and ready to go.

And are you still taking registrations?

Are there still spots available?

Oh yeah.

So we, I think I, the latest number I heard we were at 60 something.

I think I'm certain we're higher than that now because that's been a couple of weeks ago.

So yeah, up until the day of, as long as we have space available, we'll, we'll get you in there where we just want everybody that can come.

It's a free event.

Like I think I said that already, but it, you know, last year we, we did kind of like pay as you can or pay what you can this year.

We strive to make it completely free and we were able to do that.

And we're really with the help of sponsors and all that.

We're really excited about, about being able to do that.

So.

Wonderful.

Wonderful.

And I know if people are like me, I don't plan anything.

Okay.

Nothing.

I last minute is, is how I roll.

So I'm sure you may be at 60 now.

I'm sure the day of it'll be maxed out.

Oh yeah.

Oh yeah.

That's how last year's went.

So I'm sure this year will be the same.

Yep.

I never plan anything.

This is why we don't take vacations because I decided I want to go somewhere tomorrow and of course everywhere's booked and has been for a year, but.

Yeah, I get that.

Tell me now what else is going on at Cal because like you said, there's, there's been a lot of, a lot of excitement over the last year since the last summit.

So tell me what new things we're doing.

Yeah.

So here in Louisville at the Louisville office, we've had the Caltech, which is the assistive technology resource center here in Louisville used to be housed at Spalding it's, it's housed here in house now.

So that's really exciting.

We're working on that.

I think that's growing a lot.

So any kind of durable medical equipment you need, anything like that, come talk to Rob, you can call the front desk, call that number I mentioned earlier, talk to the front desk, they can, they can help you out.

It's exciting.

So it's like free rentals of any of that kind of stuff.

We do demos for some things.

So, Hey, if you're thinking about you want, you're wanting to try out a ring doorbell, we can give you a demo on that and how that works and that's one-on-one.

We can sit down and talk to you about that.

Also right now with, you know, we've had a little leadership changes, which I say recently, and it's not recent anymore.

I got to get together on that because it feels very recent, but you know, our last strategic plan ran through 2025.

So we're currently working on our next five year plan for Cal and where we want to go and what we want to do.

We sent out a, a survey, we posted it on social media.

We sent it out to staff and we sent it out to our board and other organizations in the community.

And we're working on that and what we want to do with Cal.

And I think some of the things that we're working on are really fun.

Like I'm pretty excited about being able to, like we want to go out into the community more, I think, and we've really worked on that hard in the last five years.

But now we want to work on doing etiquette trainings.

We want to do work on accessibility surveys in the community, making sure people know the accessible businesses out there and how accessible the city that you're in is.

And so we're starting with Louisville specifically on that.

We're going to start doing accessibility surveys around Louisville and just, you know, Hey, this restaurant's accessible.

They've went through an etiquette training.

You know what I mean?

Like, Hey, you're visiting.

You want to go here.

So we'll have a webpage up on the website eventually of all those shortly.

That's exciting.

But we got a lot of new grants in the works, so that's fun too.

Hope you mentioned, you mentioned expansion to the, um, I didn't know if that was, I know it will be a slow rollout because there's a lot involved, but do you want to talk about that?

Or is that still?

Yeah, no, yeah, yeah.

Great.

Let's talk about it.

Yeah.

So we've started the expansion process.

I know it's been, it has been slow going even up until now, but we are going to be expanding Cal specifically.

We will be expanding into 49 more counties than we are now.

I think we're at 30, we were at 30 something now we've added 49 on.

So that's fun.

Now the, the start of that is not going to be all five core services in every single county.

That's not practical.

Right.

Because we would have to really get a lot of income for that.

Yeah.

Yeah.

Cause you have to double staff to do that.

Yeah.

But we are working on placing some remote workers throughout the state.

And right now we're really just kind of doing some data collection just to see what services are needed where, and specifically, you know, what areas are lacking the most, which I know that's a lot of Kentucky.

I'm not oblivious to that, but we are working on the, we want to place people in the most strategic places.

So we want to, we want to, we're making sure that's going to happen.

So if you are in an area and you think, Hey, I, you know, we don't have the services and this could be a really helpful thing here, please reach out.

To us, you can call here and you can reach out to me specifically.

I'm happy if you want to do my extension, let me look it up.

Cause I don't know what I should know it, but I don't call myself one nine.

So I call that, five Oh two, eight, five, five, eight, nine, six, six, two zero and extension one one nine.

And I can write that down because we do, we're, we're working on collecting that.

I can get that to Renee, she's working on it specifically, but right now we're showing the works of how that collection process is going to work for her.

But yeah, that's something exciting.

We are upgrading most of our social media is going to be more, you know, user friendly.

We're working on making all of that in our website, all user friendly.

So, I mean, we've done pretty good upgrading that in the past, but we're really working on that now.

So, well, wonderful.

Amanda Mobley, thanks for joining me.

And I think, I think October's a great time to visit Louisville.

It is, it definitely has come up here and we'll have some fun in October.

Sounds good.

So October 16th and 17th, the advocacy summit from the center for accessible living and tell me again, where that's going to be located.

It'll be at the Henry Clay here on third street in Louisville on the third floor.

Okay.

Everything's accessible.

Everything's accessible.

And we have also, I forgot to add, there is a parking lot that we've rented out across the street from the Henry Clay that you can park at and it's super easy.

It's right across the street, easy to cross there.

So yeah.

Okay.

Wonderful.

And I know on the registration, if you have particular needs, there's a place there to list that, list your accessibility needs.

If you need something additional or extra, maybe something you think we haven't thought of, go ahead and list that there.

And I'm sure that someone, not me, but someone will make it happen.

Perfect.

Sounds perfect.

All right.

Thanks, Amanda, for joining me.

Thank you.

I appreciate you.

Demand and Disrupt is a production of the Advocato Press with generous support from the center for accessible living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song, Change.

Don't forget to follow or subscribe so you never miss an episode.

And please consider leaving a review.

You could find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks everyone.

You say you've seen a change in me, just for once, I think I would agree.

We both know there's a difference, we've had our curtain call, this time the right thing's on the wall.

This wall of words we can't defend.

Two damaged hearts refuse to mend.

Change, this situation's pointless with each and every day.

It's not a game we need to play.

Change, we tried to make things better.

Prepare and rearrange things, but each and every letter spells out this need for us to open up our minds and hearts to change.

Slowly, words ice than what will be, will be, disregard for good to set us free.

Change, there's just no way of knowing, if love lives anymore, we'll turn out the light and close the door.

Change, we tried to make things better.

Prepare and rearrange things, but each and every letter spells out this need for us to open up our minds and hearts to change.

Change, church.

Church. you you

To find out more about the North American One-Armed Golfer Association, visit www.naoaga.org

To learn about adaptive golf tournaments in other areas, along with a set of adaptive golf standards co-authored by Al Gentry, visit the United States Adaptive Golf Alliance web page www.usaga.org

Visit the Kentucky Secretary of State at vrsws.sos.ky.gov

Register to vote at vrsws.sos.ky.gov/ovrweb

As a disabled person, if you have trouble registering to vote or casting your ballot, call the Kentucky Protection And Advocacy Hotline 1(800)372-2988

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

He developed a passion for golf at a very young age and despite losing his right arm in a workplace accident come about 1993, he continues to golf regularly and also helping inspire others in his shoes to golf regularly as well through his creation of the Kentucky Amputee Tournament which we'll talk about here shortly along with the North American One-Armed Golfer Association which he co-founded along with a few others, also the Fightmaster Cup which is also known as the Rider Cup of One-Armed Golf commonly, a lot of people refer to it as that and he also published a book of golf standards for individuals with disabilities maybe limited to one arm like Al is and so that's actually unique because it was the first of his kind to ever be published in the United States so all of these and even a little more that we can dabble in as we go along here with a man who's actually a state representative as well representing the 46th district which includes part of the city of Louisville and then somebody's coming to us today from the state capitol so please welcome via zoom in Frankfurt none other than Mr. Al Gentry.

Al it is a pleasure to have you aboard here thanks for taking time out of your busy schedule there in Frankfurt to join us.

Have you seen Andy lately?

Have you seen the governor floating around?

Yeah I run across Andy every now and then so we're not in session at the time when we are in session we meet pretty regularly but we're in what we call the interim session so we actually work on committee meetings on the committees that we work on but yeah from from time to time I bump into the governor.

Yeah I figured you did and I know he spreads his business across the state so no telling where he is today but at any rate we're sure glad you're here now how long have you been a state representative Al?

Well Sam I was elected in 2016 so my first legislative session was in January of 17 and in my if I can count right in my fifth term right now.

Yeah I was gonna say you've served continuously ever since so you know it's obviously still still going strong and momentum is certainly in your favor now you're a lifelong Louisvillian I know and you've held a steady passion for the game of golf most if not all of your life sir so first off why don't you tell us sort of when and how you developed an attachment to the sport?

Okay well it goes back to I guess I was probably 11 or 12 years old and and when I was a kid growing up I loved playing every sport I could I was very active and in my grade school years St.

Lawrence Catholic school I played about every sport a man could play or a boy could play I should say so it was rare that you sat down yeah when I got into high school I was exceptionally talented in the game of golf so I played golf now I had two arms back then I was very I was so good at golf I really had to quit the other sports and focus on the one sport because you know how that works when you're good and you play at a certain level you got to do it all the time just to stay at that level and continue to improve yeah I really didn't like that a whole lot because I liked playing so many other sports so as the story goes by the time I made it to my senior year in high school I was being heavily recruited in division one college offers and and quite frankly Sam the last thing I wanted to do was play golf when I went to college so I declined them all and quit and went to school for geology uh-huh so you so by the time you got done with high school you decided you were about burnout on golf yeah and I I mean I went to the University of Louisville and did graduate work at the University of Kentucky and I became a geologist and eventually a hydrogeologist and and that's how I started the first part of my professional career and ten years later I was involved in a drilling rig accident that took my right arm and and um I was immediately introduced to the world of amputee golf and amputee game that I loved as a kid yes and you so by then you were probably itching to play again and you satisfied that itch thanks to to amputee golf but anyhow that's neat so um so geology was um your your bs at uh at UofL and I'm guessing um at UK your graduate work was um basically an extension of that or maybe some sort of branch of geology yeah I uh when I received my bachelor's degree at Louisville uh I immediately went to work and went to work for a mineral exploration company and was working primarily in the western US um but I had a kind of job I had one of those fun jobs where you I had a partner in a chocolate lab and a four-wheel drive truck and our only client was a diamond corporation in Belgium so we we worked the United States and and had kind of our own schedule we used one of them things called a fax machine to fax monthly reports and uh and and then I got flown home a week every month so we kind of when I was on the road we kind of worked every day um I think we got one day off for laundry and that sort of thing and and um and and then I had most of my days what would be equivalent to weekend days I had them all in a row at the end of the month and at my home in my hometown so that was the life of of uh being a traveling geologist on the road and it doesn't fare real well with family so that's what I did when I was single and and when you're you're young and experienced in that in that type of work you get laid off in the wintertime when it snows heavily and you cannot work in the mountains anymore so so during my layoff period first layoff period I went to graduate school UK for hydrogeology which was more in the environmental field and you know we're talking late 80s early 90s that's where most of the geology jobs were back then so that was kind of the thing to go into and so I transitioned when I was at UK I ended up getting a a job with an environmental consulting firm in Louisville so I never got to go back to the to west to work again after that first year so that even though that job was very fun it was pretty short-lived and and um and did most of my geology work in the environmental consulting field well at least you'll always have the memory so how uh how long did it take you to get your masters uh well I was going part-time right and the way that worked was I was working full-time in Louisville for this consulting firm and they were working with me to get my masters and so I was going to get my masters and right before I finished I had my accident oh okay so that's that's where our accident factor is in here in 94 yep yep and that happened in 1993 I was 28 years old and um I think I had one semester left with just one or two classes that I was getting ready to start in January of 1993 and on the 5th of January right before classes started is when I had my accident and then of course when I had my accident everything changed and it was all about um learning how to live in the new world that I christened into right with a disability so uh yeah so I never really obtained my master's degree even though I did 99% of the work right by the time and a few years later when I wanted to go back to finish um they no longer had a graduate geology program that had ended all the program had been discontinued huh yeah so it's kind of kind of unfortunate but uh that was the story of my college uh challenges even even after I lost my arm so well you know at least you know you did most of the graduate work with the help of uh of your employer and I know learned a great deal in the process so um let's let's talk a little more about your accident here in 1993 you said it was a um a drilling accident uh tell us more about uh you know the type of work you were doing and um the the nature of the accident more so specifically sure again we work for a private consulting firm and basically what we did sam is we we represented industry for the most part um as they were going through the regulatory process of uh sometimes they they've had a release or spill into the subsurface and so they would hire us to come in as their consultants to a assess um what had happened b to remediate or clean up what had happened and and in some instances c uh prepare a risk assessment uh to move on and kind of kind of take the industry but uh the company by the hand and walk them through the whole regulatory process and and work with the state regular regulatory agency to to to get to closure now that's kind of what we did and at at the time of my accident we were working for a major um automobile manufacturing company there in louisville they were in the process of removing all of their underground storage tanks and going to an above storage system and that that would include like uh fuels and paints uh for manufacturing uh process of of automobiles trucks that sort of thing um and what we did of course a couple of them leaked and had some releases so when that happened we came in and would drill and do subsurface soil sampling or groundwater sampling around a particular area to define the extent of contamination um on a particular day of the accident we were done drilling we were using a real small handheld drill because we were drilling under power lines and when you drill under power lines you can't bring a truck mounted rig in because it's too dangerous um so that didn't have a whole lot to do with the accident other than we were drilling in an area that had been dug up before and we call as geologists we call it fill material because you're liable to run into anything and fill material because humans dig holes and when they fill them back up sometimes they throw a lot of human things back into that hole so if you can imagine a wire coat hanger unraveled um the auger came connected with something like that underground so when we were pulling the augers back out of the ground um as the auger was spinning around this uh piece of copper wire was attached to a peg and swung around and snagged my jacket sleeve i happened to be standing right next to the oh goodness and so it was probably a million to one kind of thing that just happened when it grabbed me it wrapped my arm around the machine backwards so it disconnected elbow right away and pretty severe injury it was fighting for my life um so the emergency team had to come in and peel me off of it put me in a helicopter and send me down to the hospital emergency room so that's kind of how the accident happened and um we'll get into this because this is a great story but when i was a junior golfer uh there used to be a pro celebrity golf tournament a little that was born country club in fact that particular golf course just uh hosted a pga tour event this weekend but if if if you can go way back to an old famous actor called foster brooks he used to to play a drunk that name sounds familiar yeah and he he was from louisville and and he would have this tournament annually and raise a bunch of money and give to um a crippled crippled kid crippled kid was there um shrineers organization and there was a gentleman so so us junior golfers would go out and follow the pros and and the movie stars but we'd always end up following one guy and that one guy his name was don fight master oh yeah famous one-armed golfer and so we watched this guy with one arm play golf and we're blown away by it as kids so now fast forward 10 12 years later after i had walked away from the game of golf i had never met mr fight master but i remembered watching him at that pro celebrity event so as they were willing me into the emergency room i looked at all the trauma staff and i said look out don fight master i'm coming after you so uh the one of the gals there she was a nurse and she knew exactly who he was because her uncle i think was very good friends with don so she she called her uncle and talked her uncle and he called don and don came to my hospital bed so before i left the hospital i was introduced to the world of amputee golf which i had no idea even existed don don didn't happen to remember you from 10 12 years back did he no he he had never we had never met now the uncle guy that contacted don uh he was a local club pro at one of the golf courses and he remembered me from 10 years before he remembered me as a golfer being very good and then kind of disappeared from the game so he was like yeah i know that guy yeah how that all works so don came into my room and he basically told me all the magnificent things he had accomplished 30 years um being one-armored and he told me son your life's not over your new life is just beginning to move forward so and you were like if you know if he's done all this and you know why why can't i do at least a portion of that so uh about uh about how long was it uh from the time don came and visited you that first time in the hospital until the time you were uh able to play in your uh in your next first tournament shall we say well like i said my accident happened in january of course around here you know it gets pretty cold in the winter winter months so oh yeah i was out getting golf balls in spring and in uh september of that same year i traveled to tennessee to play in my first amputee golf tournament see so good later that year yeah yeah and i was planning to go down there and kicked all of them's rear and and i was blown away by how good these guys were which at that moment i couldn't even begin to carry a candle how good they were you know and i was uh not only uh tremendously humbled but i was tremendously inspired because i saw what i could become if i put the work and the effort into it i knew i knew i knew the game of golf i just had to figure out how to play one-armed golf yeah and um so that was my dream that you know i had a dream now i had something to work forward to and and uh as i went on that journey and that path and started experiencing some success it it totally changed my life because it uh the self-confidence and self-esteem that i started generating from a sport that i was familiar with carried on to everyday life and helped me every day uh battling the challenge of living life as with a disability oh yes i i can imagine so yes uh you know you knew you knew your potential was there when you saw those other guys in tennessee plus it gave you uh something to to work towards and you uh you know you were eventually able to to gain ground and still maintain your passion to this day now not long after the loss of your right arm sir you founded the kentucky amputee tournament and this has allowed many with disabilities uh to enjoy competitive golf with the benefit of a level playing field so talk a little bit about the the steps that needed to be taken in order to make this annual event a reality al well like i said at my first tournament i went to the tournament in tennessee right and when we were down there so blown away so inspired all that i looked at my father who had went with me down there and i and i said we can we can do a kentucky tournament we need to start a kentucky tournament and and he said well yeah we can do it at south park which was south park country club is where it started in 1994 and he was a member there so that's kind of where we kicked it all off at and um the tournament now is held at shelbyville country club in shelbyville kentucky um had a couple of guys take it over after i got it rolling for several years and as you probably know the kentucky amputee celebrate its 30th anniversary earlier this year and we had a year or two there we had to take a break from from covid but sure even though it's been 32 years or 31 years i guess since it started uh we've had 30 events now so yeah and of course um yes i did enjoy the uh the ket special on that and that's uh quite a quite an achievement to celebrate um 30 years uh you know it would be like you said 32 but minus those uh couple years that um it was forced to take hiatus due to covid you uh you know celebrated the 30th anniversary and uh always better late than never now um anyone who wants a glimpse of of diversity al they owe it to themselves to uh watch amputee tournament participants in action so why don't you discuss the wide range of disabilities that are commonly uh represented among these golfers okay i'll do that and i'll give a little bit of background as well in the 1990s amputee golf was very rampant and it was was everywhere we were uh that that was kind of the disability type that was widely recognized in golf although we had a blind organization back then um and in early two or in 2000 we started the north american one-armed golfer association so in one-armed golf you not only have amputees with you know an amputee golf you have uh individuals with arm and leg arms and legs off or either one uh in one-armed golf you have upper extremity disabilities that might call somebody to play one-handed even though they have two arms a good example that would be a stroke or what we call a brachial plexus injury which is a nerve injury that where you you know you lose uh use of one arm or you might have uh uh some sort of birth defect or abnormality in in an upper extremity that that would would call some level of disability or impairment um and then what we did in 2014 is we brought all the organizations together um that was under an organization called the united states adaptive golf alliance by the time we had reached 2012 something like that the the whole disability world in golf was much like the disney much like the disability world um with non-profits it's very siloed where organizations were focused on a specific type of disability and so what we did under the golf umbrellas we brought everybody together and did so that in such a way that all the existing organizations could still operate and operate autonomously but they would also operate as uh part of a larger group an alliance is what we called it and um so all the members were not the people it were the organizations that either taught the game of golf or held events for people with disabilities in the game of golf and then once we did that and had all of these member organizations together um we wrote the standards for what we call adaptive golf so uh we used the word adaptive instead of disabled because it's a more positive word right able to suggest that you're something less you know is the way we looked at it and now we all have strengths and weaknesses whether we have a disability or not so what we do every day is is something quite remarkable we adapt despite our challenges so we called our sport adaptive golf um to put a little more of a positive spin on it and what golf does for these individuals is it really provides medicine it's it's an environment where you can come and compete and be successful doing something on your own playing against someone who is somewhat equally impaired and so when we wrote the standards of golf we created 15 different sport classes and what i mean by that is if you have a lower leg disability uh like an amputation then you play against others with the same type of impairment if you are a one-armed golfer or there's you know when you look at the vision impairs of the of the blind guys yeah yeah we have people that play golf they can't see it all they're totally blind yeah i heard about one guy that did that this year yeah it's amazing athletes and um but there's also three different levels of of vision impaired and and basically the way that works is uh uh one level is you can't see anything at all and one level is you have vision impairment but you can see just um just uh you know you might be lacking peripheral vision sure and then a level two would be something in between where it's a little more extensive of an impairment but not to the extent where your total loss of sight so there's three different sport classes within vision impaired alone so you go up and down the line with with with arms and legs and more neurological type challenges or like intellectual sport class or what we have a neurological sports sport class which might include cerebral palsy spinal type injuries and you know various type things so in those sport classes you'll find somebody just like you that you can compete against yeah and so ever since the alliance was was formed that you know people with all of these disabilities have been competing in the same amputee tournament as you mentioned it was um 2000 when you and your aforementioned mentor Don Fightmaster and a couple other Kentuckians teamed up and uh created the the North American One-Arm Golfer Association so um why don't you um shed a little more light on the the uh purpose that serves and uh some of the other means uh in addition to uh you know the tournaments and so forth that um that we've touched on to this point by which it has enabled golfers to remain active yeah yeah back if you go back again to the 1990s I was attending uh off and on clinics that were uh called the first swing clinic that the national amputee golf association was running okay so we would have these learned to golf clinics and they would bring some of the players out uh amputee players to help teach these individuals that that are just learning how to play golf and I kept running into guys that were well like a stroke patient where they didn't have limb loss but they definitely had a disability and they were falling in love with learning how to play golf and one-handed golf but then they didn't really have anywhere to go so we just created another organization where these kinds of individuals that had upper extremity non-amputee um impairments had somewhere to go and compete and play and we mimicked this off of an organization in the United Kingdom called the Society of One-armed Golfers um which by the way is probably the oldest not only um disabled golf organization in the world but maybe even the oldest sports disability organization in the world they were founded in 1932 a division by uh world war one airport uh airplane pilots there were a group a small group of them that they had these upper extremity disabilities I don't really know how that was created or started but yeah so that was 93 years ago yeah so that's yeah we right around the corner we'll have a hundred year anniversary coming up on that organization but yeah so that's the organization in in Europe and um they they've been around forever Mr. Fightmaster had went over there and won two world championships that's where he gained his celebrity status I guess as a one-armed golfer and he had told me all about it so in 1997 four years after I lost my arm um I went over there for the first time and played in their championship and was able to take my wife and mother and father and so we enjoyed a trip to Scotland and that was fabulous and um but anyway the one-armed association and it was kind of like the the first amputee term when I went to Tennessee and said well we can do this in Kentucky so when I went to Scotland I said well we can do this in the United States and Don said well let's do it but since it's a North American one-armed golfer association I'm you know I'm guessing it includes you know members nationwide yeah and this uh and not only nationwide but uh Canada and Mexico as well now in Mexico we're still working on trying to get adaptive golf down there uh but we do have a couple of players from Mexico and we have several from uh Canada we've had our championship in Canada a couple of different times and I think we're going to be there next year in Alberta so um it's definitely a North American organization and um and I will say this that um eight years later we started the Fightmaster Cup which we named after Mr. Fightmaster and that was the Ryder Cup competition where the Americans play against the Europeans against the society of one-armed golfers and both of us have qualifying point systems uh based on events in our country and and um our countries I should say and and uh so we qualify teams and it's a competition of the best of the best and happens every two years and and uh switches back and forth to from Europe to to the United States so um we haven't had one in Canada yet we might have to consider that here shortly but gotta you know gotta have something to to work towards there but yes this is uh the best of the best between um North America and um and Europe and like you said it happens biannually I think I read this year it was uh over in Europe was it not uh this year we we did not play we played uh last time it happens every two years also this was this was an off year then okay yeah this is no no no no no it hasn't happened yet oh it's on the way okay it will be in September uh mid-September in Ireland oh so it's in Ireland later this year yes yes and I'm honored to say that I am the captain of Team America so I get to take my team to Ireland and uh we I was the captain in 23 for the first time and and we won the the Americans won the cup for the first time in several years and and when we did that they asked me to do it again so I said well I've got to do it again so yeah you can't we have never traveled overseas and won the cup so this is going to be the first time we do that well I like that attitude way to go Mr. Team Captain now how many um how many will you have on your team do you know just yet yes yes we have 12 members um both sides it's 12 against 12 and the format is exactly the same as the Ryder Cup and the way that works it's a three-day event and there there will be four team matches of two against two in uh morning on day one and morning of day two also four matches team matches on the afternoon of day one and the afternoon of day two um and each one of those matches there each team plays eight players in a session so there will be four players sitting out that particular session of course there's two sessions per day and then on day three there's just one session and it's singles matches in uh every player from both team plays so it'll be 12 against 12 yeah well that's that'll be exciting for you come September you'll get a a weekend overseas and and uh you know like you said you'll be you'll be bringing back that trophy we know you will so it's uh it's really turned out to be just an extremely special event it's a tremendous honor to make a team um and really quite quite frankly Sam when we go to our national championships there's almost more focus on how many Fightmaster Cup points people are earning than winning a championship because they want to be on this team yeah there's there's bragging rights for people that you know earn more points it's kind of like the Ryder Cup and on the PGA tour you know it's yeah there's nothing like uh teeing it up and playing for your country and when you talk to most of the players they will tell you that they get more nervous in the Ryder Cup competition than they did in any individual event they ever played in that's something that tells you that you know they they take it quite seriously so I'm guessing Fightmaster Cup qualifying events sort of happened throughout the spring and and the summer then leading up to this yeah it happens over a two-year period since it's every two years and on the it's only the one-arm event so we have an annual meeting in championship every year which moves around the country at a different location um we also have what we call a winter regional competition which is in Florida in January every year over the weekend so it's nice for us to break away from our jobs especially we haven't touched a club in a couple of months and and we all get together and in Florida and have a little winter competition um and then based on your performance in those two events you acquire points and and you know whoever acquires the most points uh or get to get on the team and and we have uh 10 automatic qualifier spots and then whoever the captain is gets to select two captain's picks to complete the team okay so two of them are your picks and and the other 10 are are automatic now as you alluded to we talked about uh a few minutes earlier you were instrumental in the establishment of the uh United States adaptive golf alliance in 2014 this made it possible I know for um you know people with all sorts of disabilities to sort of come together and and uh play in the adaptive golf Kentucky tournaments every year when when that happens and uh to talk about some of the other events that have been made possible through the alliance and the sort of the other pursuits that the alliance partakes in every yeah yeah the games pretty much exploded over the last 10 or 11 years and since the incorporation of the alliance and by the way we now have 57 member organizations involved with the United States adaptive golf alliance so it's a massive deal we we have generated over 50 000 free lessons to people with disabilities each year that's that's what our that's what our organizations are doing collectively we also run over I think uh this year 44 different golf tournaments across the United States including the United States adaptive open which is hosted and ran by the United States golf association is the governing body of golf in the United States just like we have a a U.S. open a U.S. women's open a U.S. amateur we now have a U.S. adaptive open so we were able to to get the powers to be at golf to step up and embrace our sport which has given us some tremendous amount of exposure which has allowed us to really increase our outreach to people that acquire disabilities in life and introduce them to us so yes the U.S. is currently taking the lead right now on worldwide trying to get our sport into the Paralympics Paralympics if we can get the sport in the Paralympics then we can tap into funding that we can't tap into right now there would just be tons of funding coming in and more and more funding we can produce and more and more services we can provide to people with disabilities because these uh these tournaments and events are phenomenal and they they change lives and and the biggest barrier for our players participating in tournaments is cost you know there's travel costs associated time would be number two because many of our many of our athletes do work and do have family obligations and so on and so forth and you know if you only get two weeks off a year for for your job it's uh it's difficult to play it more than one or two times absolutely yes it might only be a couple of days long but you know you got to go do a trip with your family too or even if you can afford a couple of trips a year so we would like to get this where our sponsors take care of a lot of the base costs for and travel stipends for a lot of players so that they can participate more in these events that really help these individuals get through life and incidentally i should tell your audience that if you go on to usaga.org uh-huh usaga.org you can see pictures of all this and you can access locations and times on the calendar of every tournament across the united states oh even the adaptive tournaments yeah yeah that's great yeah we're around kentucky we not only have the kentucky tournament in june but uh we have tournaments in uh indianapolis and in missouri and ohio and um you know so a lot of the neighboring states have events in different times of the year as well so yeah anybody listening that knows somebody with a disability would be interested in playing golf or maybe is already a golfer with a disability but doesn't know of the organization they can go on there and and see where these tournaments are being held and how to reach out to usaga and and get involved and we'd love to have you yeah absolutely i'll link uh folks to that webpage and in the show notes as as well now speaking of usaga.org uh we can also go there to access the very first set of standards for competitive adaptive golf we talked on talked about it a little briefly earlier this was the first set of standards to ever surface here in our nation and uh also you uh established a ranking system for like you said 15 sport classes so give us some more insight into the the steps taken to establish the standards and ranking system and the guidance that you use to assist you in this undertaking okay i'll do that first of all i guess the biggest guidance was just 30 years of experience oh yeah doing it personally and uh we talked about it for a few years before we ever actually put this organization together and then once we put the organization together we started having conversations with the groups with different disabilities and and um let's see i guess um it was 2014 15 i guess 15 before usaga was really operating and it was 2019 before we published our standards so there was a good solid three or four years of just conversation and figuring out what we were going to put in the standards how are we going to do this what was important all those things and there were just numerous numerous uh conversations this this was sam this was not something that we just sat down one day put on papers yeah i can imagine it was definitely time consuming something that yeah we we we took very seriously and spent a lot of time with it and at the end of the day the end product we tried to accomplish four things in the standards of number one was to create an eligibility criteria now luckily we had somebody else who already led the way on that and that is the paralympics they govern a variety of different sports for people with disabilities so we adopted strictly from an eligibility standpoint and what that means is are you disabled enough or have enough of impairment where you're considered having a disability right they qualify the paralympics had done extensive work on that instead of trying to recreate the wheel we just adopted their criteria from an eligibility standpoint so the second thing we did once we had the eligibility now we got all this diverse variety of of impairment groups so how do we classify so that was the second thing we did is we classified each impairment group and we classified based on how we play the game of golf to try to make it fair in each sport class and we came up with 15 different sport classes so that was the second thing with you the third thing we did it was we provided what we referred to as distance allowances which is the same thing golf does so if you go on to a golf course and play golf you'll see different tee boxes there'll be what's referred to as a men's tee regular tee you'll you'll see a maybe a men's senior tee so if you're you're a senior level age then you get to move up some and then women tees will move up as well and then sometimes you might have what a pro tee or something like that or for the young studs where they kick them back even a little bit farther so so the object being that there are distance allowances provided for gender for age in some cases even ability like the pros might play farther back but so we did that in the world of of disability as well so if you're you're totally blind or you're playing out of a wheelchair you know you're you're gonna if you're a seated player you're gonna be moving up quite a bit because you have stronger challenges than somebody with maybe just a you know a foot off that has a top of the line prosthetic and if you didn't have shorts on you might not even realize that they had an amputation oh yeah totally different animal in the wheelchair yeah and still i don't want to uh i don't want to dismiss their disability everybody has some of them are a little more challenging the others as it goes into playing golf so certain sport classes we provided distance allowances so that was the number three thing we did and then the last thing we did in the standards uh publication is we created a ranking system so when you go play in one of these 44 tournaments around the country based on your performance and based on the difficulty of the course that the tournament is played on you receive a rating for that particular event a constant uh rating that that the organization uses for every athlete to participate and and that is a rolling 18 month schedule so after 18 months your scores from 19 months ago fall off basically also they're right not how long did it take you all together to uh to create this you remember uh i would say you know most of the time were discussions and then once um once we kind of knew what we wanted to do it was probably just a matter of months putting it all together so most of by far most of the time was just having discussions trying to educate ourselves on you know disability types that maybe we weren't real up on you know yeah you know we had to we had to do a lot with um vision impaired because we didn't really understand it because not only does the united states have certain criteria we found out that the criteria internationally might be slightly different and we wanted to make sure we did something that was inclusive so if um if one of if a different impairment group had two different classification systems and one tended to be a little more exclusive then we tried to lean toward the more inclusive one because we didn't want to turn people away that right yeah yeah most definitely yeah it took a while and actually we're still working on even today because once we implemented and got rolling with it uh we created a what was called a competitions committee which leaders of the different organizations sit on the bigger ones sit on the committee or they appoint somebody to sit on the committee and their primary role is to make any amendments as we go along to our standards as needed because no plan is ever perfect in the beginning as we know and as things change with uh with whatever with life then sometimes with experience and time small change here and there and whenever we make changes to the standards we want to make sure everybody's represented to make those changes yeah so those those standards might always be adjusted like so for instance i know for like blind and visually impaired golfers they're allowed to golf with um sort of like a a coach behind them correct to sort of tell them like where the hole is yes yes yes challenges of uh you know challenges of that that hole presents and you know how hard so you don't ever want to upset your your coach because he might direct you in the wrong direction this is true yeah he could aim you away from the hole on purpose so yeah always advice to blind golfers out there make sure you always maintain a good rapport with with your coaches for sure now uh lastly al looking ahead to the future of adaptive golf you said you know obviously you'd love to see it in the paralympics so we'll cross our fingers and and toes for that um what um uh what other uh aspects personally would you like to see adaptive golf continue to thrive and evolve in the years to come yeah the um i'm glad you asked me that sam because we have a major challenge right now that we're going through and it involves the paralympics um the paralympics has their own kind of set of let's say uh how they look at classification okay and without getting too technical here i'll try to explain this the best we can you know the paralympics is is something that's over several sports now those sports may have uh different um different things that require you to be good in that particular sport what i mean by that is is golf um you know if you only have one arm it's going to be a lot more difficult to be good at golf than it is running a track event yeah so as i had stated briefly earlier when we did classifications for our sport we classified based on how we all play the game of golf now they don't necessarily do that paralympics they classify based on um what what they would call is a functional challenge to a body in other words um if you have an arm impairment or if you have a leg impairment and whatever aids we might use to play our sport doesn't really matter to them it's more they look at equality as uh based on the physical uh ailment so to speak we're going to classify you that way and then you have a sport that you only have so many medals and you have tv and you have all these other things that kind of creep into the picture and what ends up happening is you have a classification structure that is much um less they have a lot less sport classes when you have a lot less sport classes what happens is now you have a lot of individuals within your sport that are competing against somebody that uh they can't really compete against very well because they're a little bit more impaired than those individuals does this make sense yeah you want people to be you know competing against so although although we want paralympics because there's a lot of positives to paralympics obviously what we have to be careful on what other sports have have done and made mistakes with is they've allowed their entire sport to be governed and classified by the paralympic standards so in golf this is even more of an importance because we have to kind of thread the needle and pushing forward with with paralympic inclusion but at the same time when that happens we cannot allow those um only you know four six or eight sport classes to define the entire sport of golf because paralympics really you're only going to be dealing with the top five percent or less in your sport anyway and we have to make sure that that our standards and classifications govern everybody that plays so that people don't quit and run away from it because they don't feel like that they can compete under those rules does that make sense yeah it does most definitely so yes we we you know we definitely need some adjustment in the uh paralympic classifications but uh yeah once that happens it'll definitely make for a you know a better uh more more enjoyable experience for the uh adaptive golf sports yeah so what we have to do is make sure that there's a great working relationship between usga who's taken the lead on who's over all of golf uh who's taken the lead on paralympic uh inclusion and usa ga who's over just adaptive golf because there's a lot of things that usga may not be aware of and we have to make sure that that the line of communication is very strong between the two organizations yeah so usga and usa ga they need to maintain a collaborative effort because like you said you see usa ga is the one running 40 something tournaments across the country for adaptive golfers where usga runs one which is the u.s open which is a huge one but and uh so we have to make sure that uh that that they continue to use their clout to get us into the paralympics but at the same time allow all the different state organizations who are helping grow our sport to use the classification system that we use well yes more solution absolutely because like i said you know if you only have uh one arm that you know that's not going to necessarily limit you as much in track because you're mainly using your two legs right right but uh but with one arm you know if you're golfing there's definitely going to be uh more limitations posed that need to be uh taken into account for sure so like we said folks that go to usga.org which i'll link you to and then you can access uh the publication of golf standards there among other you know useful information about tournaments and so forth uh if you've got any questions about any of the ground that we covered today you can also uh email al it's al.gentree at kylegislature.gov and uh let's see there's also another website i'll link you to it's nagoaga for north american one arm golfer association dot or so you can find out more about them and uh any other means al that you would suggest people uh find out more about um maybe specifically the kentucky tournament and other things happening in our parts yeah if you if you go on to the usa ga website could the link to the kentucky tournament will be on there as one of the tournaments so that instead of giving you 30 different email address our website addresses yeah that's the main one to remember and of course if you're a an upper extremity guy i'd like to have fun with the one arm guys we are the best group out there by the way we have it ain't bragging if it's a fact so you can definitely go out there and and have your fun make lots of friends with the with the al of the game so just go to usaga.org and click on kentucky you can find out all you need to know about uh it's him i'll also say too i didn't mean to interrupt you there no you're fine naoa ga has a junior organization so if you know of a kid that has an arm uh impairment oh okay we can introduce them to the game of golf and we raise money and uh we will fly the the kid and the parent to our annual championship which they'll go through a clinic and they will see the the pros at it and um and know what what they can grow up to be like so that's awesome so they can get a feel for what they can do and i'll tell you how successful this has been this year on our fight master cup team for the first time ever there are two juniors that have qualified for the best 12 players in america so out of the 12 two of them are juniors and they were graduates of our of our junior program at a very young age and now they're 16 17 years old and and uh they're playing on their high school teams and and uh they're playing great golf and they're doing it one arm so junior alum shall we say and now they're you know in their mid teens and playing with the with the big boys that's awesome so you know it goes to show that the possibilities are uh you know almost endless even for those with uh with just one arm trying to uh make a name for themselves in the world of golf well uh al thank you so much for joining us we've learned way more of than we could have ever uh possibly imagined i hope you've enjoyed it sir oh yeah you know i can't thank you enough anytime i can get on any kind of outlet or show or whatever and and share the wonderful world of adaptive golf i will always do everything i can to fit that in so thank you samuel for for you know the the platform you've provided me with today you take care and uh keep them all straight up there in frankfort for us all right well i know that's almost an impossible task that's all we have all right same

Visit Bridgehaven Mental Health Services

Read more about the study on loneliness among people with disabilities

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

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Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly: Welcome to Demand and Disrupt, a disability podcast.

I'm your host, Kimberly Parsley.

Sam: And I'm your co-host, Sam Moore.

I am in Henderson, Kentucky and Kimberly is in Bowling Green.

How's life in the Corvette city, Kimberly?

Kimberly: Well, it's just going great.

Just staying busy as can be.

How about you up there in Henderson?

Sam: Oh, I'm doing quite well.

Staying pretty busy myself.

I've got to, as we record this, it is the eve of the play day.

And so, you know, we've been busy ourselves with that, me and the crew.

And so in two weeks, when we reconvene here, Kimberly, I will have a nice reflection ready for you.

Kimberly: Okay.

And what's your lines memorized percentage now, Sam?

Sam: I'd say it's, well, I know a bunch of people were probably sweating when I said I was about 50 last time.

I'd say it's about 99 this time.

You know, I'm to the point that at this point I can at least mess up without people knowing that I messed up, you know?

Kimberly: Well, there you go.

There you go.

Now, so what about you?

Are you nervous?

Sam: You know, I'm more excited.

I really enjoy these plays and, you know, there'll be a few nerves tomorrow, I'm sure.

But like our playwright, Bob Park says, you know, a few nerves aren't necessarily a bad thing because it keeps you focused and, you know, brings out the best in you as a performer.

Kimberly: So it's a motivator, I guess it is a motivator.

Well, good to know.

Well, you get to report back next time and let us know how it all went.

This is not exactly your debut though, cause you've done this before.

Sam: So we've done it before, but it's the finale.

This guy says it's his last one.

So it could be our, you know, it could be our climax.

Kimberly: Yeah.

Your swan song.

So, yeah.

So, well, today on the show, our interview guest is Reese Williams.

And Reese is someone who lives with a mental health disability, and he's going to talk to us all about that and how he lives with that and how he finds help and a great conversation.

Wonderful conversation.

Found out lots of things that I didn't know.

So, y'all stay tuned for that.

And you know, I was, I looked through lots of disability articles.

I'm constantly, I get newsletters and things all the time, so I can stay on top of, all the latest news.

And there was a study recently talking about a much higher, incidence of loneliness among people with disabilities.

And I thought two things.

First, my thinking was, well, duh.

And my second thing was, well, are there some reasons that I haven't thought about?

I mean, I'm blind, so transportation is obviously it for me.

So I started thinking about other reasons, and things.

So Sam, what, what do you think that is? That, well, I guess the first question, are you lonely Sam?

Sam: No, not at this particular point.

Kimberly: That's because you're busy.

You're just an active person.

Sam: I try to stay active as much as possible, but, I could see that being an issue.

Yeah, well, like you said, transportation and as we get older and, sort of cut back on our schedule and, you know, we become more relaxed.

And our schedule becomes more open.

Maybe that can be attributed to loneliness that in combination with transportation, plus, you know, as we get, like you were pointing out before we went on the air here, as we, get older, health tends to become an issue.

And so when we go out, we have to take our, you know, ventilators and equipment and things like that.

And, and that can be a pain too.

And so we're like, you know, is it worth the trouble to tote all this stuff to our destination?

Kimberly: Right.

Right.

Yeah.

If, for so many of us, you know, it does require extra equipment that has to be carried around.

And for me personally, there's some anxiety.

I mean, I'm home so much and it's kind of like a snowball that the more I'm home, the more anxious I am about getting out, the more anxious I am about getting out, the more I stay home, you know?

Sam: Yeah.

And sometimes the, more you stay home and I like my home nights.

I'll, I won't lie, but you know, sometimes the longer I stay home, the more I find things to worry about, which is why I think we should all try to get out at least a few nights a week

Kimberly: and how many times have you dreaded a thing dreaded dreaded, getting ready for the thing, doing the thing.

And then after you get there and you get home, you are really glad you put forth the effort.

Sam: Yeah.

And you get home and you're like, man, I am in a lot better mood than I would be had I stayed home.

Kimberly: Yes.

Yes, exactly.

New experiences are important for body and mind.

Sam: Yeah.

And you surprise yourself, like you said, with how enjoyable they are a lot of times.

Kimberly: Yeah, it's true.

And now all of that is true and yet I do find myself, I never used to watch TV because there just wasn't very much audio description at all.

And now there's audio description, which is where you know, there's a track that explains things that aren't obvious, certain graphics that are for people who are blind and visually impaired, it's kind of like for blind people, audio description is what, captioning is for somebody who's hard of hearing exactly.

Exactly.

So there's so much more audio description content now that I found myself enjoying television so much more.

And we've been watching Wednesday on Netflix.

When you stay, yes.

Are you an Adams family fan at all?

Sam: Yeah, I like the Adams family.

Yeah, I like, I especially like the theme song.

They're creepy and they're, you know, that, that always, especially around Halloween that always, you know, takes precedence in my memory.

Sam: Right.

And well, Wednesday they did a season, I don't know, a couple of years ago about Wednesday Adams, and she goes to something called Nevermore Academy.

Sam: Nevermore Academy.

Kimberly: Nevermore Academy founded by of course, Edgar Allan Poe.

Sam: And, oh yeah, absolutely.

Kimberly: And the second season just started a couple of weeks ago.

So we have been watching Wednesday and I love it.

Sam: And it sounds like an interesting Adams family spin-off.

Kimberly: Oh, it is.

I love it.

It's so good.

We make the kids, Michael and I make the kids watch it with us and, and they actually do like it.

Sam: So I was going to say, I'm sure it's probably grown on them.

Kimberly: No, they do like it.

Yeah, they, it's one of, yeah, they, they like it.

Sam: And you're on season two, you said?

Kimberly: Yes.

Yes.

Season two is they, just released season two a couple of weeks ago.

So yeah, there's four episodes out.

You know what?

They release them on, well, obviously Wednesdays.

Sam: So, Oh yeah.

For Wednesday, for Wednesday Adams.

Kimberly: Right.

Right.

So by the time our listeners are hearing this, there's probably at least one or two more episodes out, maybe more.

So, Right.

Sam: Yeah.

Yeah.

So, yeah.

And you said there's four out and you've probably, I guess you've watched what a couple of the season two.

Kimberly: Oh, I've watched all four of the episodes of season two so far.

Yeah.

Sam: So, Oh, okay.

So you watch, I guess like once a week.

Kimberly: Yes.

They you know how all the streaming services do it differently.

Well, now they came out with like two episodes the first week and then two episodes the second week.

And I don't know if that's what they'll continue or they'll cut down to one.

Who knows it's all to make you keep paying.

Sam: Yeah.

And you watch these shortly after they come out.

I'm sure like within a few days.

Kimberly: Yep.

Yep.

Yep.

Exactly.

Exactly.

On Netflix.

Yep.

I do.

And so there's lots of new media and you know, speaking of media that's not new, old media.

Did you know that this month is the 50th anniversary?

Drum roll 50th anniversary of Bruce Springsteen's born to run album.

Sam: Ah, the boss himself,

Kimberly: the boss himself.

I know, I'm a huge fan of the boss.

Sam: His music spans generations, doesn't it though?

Kimberly: It just does.

My son even loves, loves the boss.

Sam: So you don't have to have been born during that time span to appreciate his music.

Kimberly: No, no, he's full of talent, full of talent.

So are you a fan of the boss?

Sam: Yes, most definitely.

I love the boss and that album born to run, let's see 50th anniversary.

So that would have been 70, which by the way, Kimberly, didn't mention this, but I will mention it for her.

That album came out the same year that she was born.

Kimberly: It did.

It did indeed.

And, yet the boss is still touring, still on stage, you know?

Sam: So, and still at least fairly active.

Kimberly: Yeah, I think we talked about, he's on stage.

He may need a stool to sit on when he's up there.

Sam: So whatever it takes.

Kimberly: Yep.

So what's your favorite Bruce Springsteen song?

Sam: Well, it's hard to pick one single favorite, but, you know, if I had to narrow it down between two and three or, you know, two or three, I would definitely, I would definitely say, born in the USA, that always makes me feel patriotic and, glory days, glory days.

That's a good, especially me being a baseball fan.

It talks about a baseball player in the song.

And that's true.

And of course, the secret garden song, you remember that one?

Kimberly: i, do, uh-huh.

Sam: From the Jerry Maguire movie.

Yeah.

Yeah, that's a good one.

And, of course, born to run for the title track from the aforementioned album.

Kimberly: Well, I think you and I have to pick, you know, dancing in the dark, right?

Sam: Oh, yes, that's one.

That's one we can relate to.

We have to have dancing in the dark there.

Yeah, we have to throw that into the mix.

Kimberly: But, I think my favorite, I think it's probably thunder road.

I think that's my favorite.

Sam: Thunder road.

Yeah.

Yeah.

Yep.

It sounds familiar.

I'm, I'm sure I'd know it if I heard it.

Kimberly: It's the first, song on the born to run album.

And I think it's my favorite one to run on that album.

Born to run was not Bruce Springsteen's first album, as some people think it was not his first, but it was the one that really rocketed him into popularity.

Sam: It's the one that if you had to, if you had to pick a signature album from Springsteen, that would probably be,

Kimberly: I think it would be, I think so.

Yeah.

Yeah.

Absolutely.

That was a good one.

Sam: And, you probably had a, uh, you probably had a cassette tape.

Kimberly: I believe, you know what?

I had a cassette tape of born in the USA, which was my mom's cause my mom was actually, she was a Bruce Springsteen fan.

So I'm one of the, I believe born, I believe born in the USA might have been the first cassette tape we had.

And I remember she had a little, what were the little records called?

Not, the big album size, but the single.

Do you know what I'm talking about?

What were they?

Yeah.

Sam: Wasn't an eight track, was it?

Kimberly: No, it wasn't an eight track.

It wasn't tape.

It was a record, but they were the small records.

They were like singles.

They had anyway.

Yeah.

Sam: I don't remember exactly.

I know what I know the term if I heard it.

Kimberly: Yeah.

It was a number.

It's like 45, it wasn't 45s were 45 the album.

I don't know.

So see, I'm old, but I'm not that old.

Sam: Yeah.

You, weren't around when dinosaurs are on the world or anything.

Kimberly: No, not, not even close.

No.

So, and my mom had the Bruce Springsteen hungry heart.

You know, that was like one of his early hungry heart.

Yeah.

There you go.

Yeah.

Yeah.

That yeah, she had that on a single, so I actually had that.

So yeah, Bruce Springsteen long time.

Sam: Yeah.

Yeah.

You know, there's multiple generations of Kimberly's family.

I'm sorry, John.

And you said even your kiddos are fans.

Yeah.

Yup.

Ian is, Ian is especially Ian.

Yeah.

So, yeah, his legacy lives on and his music.

Kimberly: True that.

Absolutely.

Sam: And his actual stage presence at times.

Kimberly: Right now.

You know, another thing that is in the news right now is that is concerning to artists and creators is AI, artificial intelligence.

So, tell me Sam pontificate, if you will, on your thoughts on AI.

Yes.

Sam: I've never heard, you might've just added a word to my vocabulary there.

Kimberly pontificate, but, anyhow, well, you know, it's amazing how quickly it is becoming more and more part of our lives and in some cases that's good and in some that's bad.

But I've noticed that, you know, whenever I type a question or whatever into a Google search engine, I always get an AI overview, you know, what I'm talking about,

Kimberly: What even is that thing?

I don't even know what that is.

What am I supposed to do with that?

Sam: Well, you can't trust it completely.

You know, it'll give you, are you saying it lies?

It'll give you what it thinks it reads, but, then I always have to you know, always want to verify that via trustworthy sources.

So you can't always go by the answer that AI gives you to a question.

Kimberly: We're entering some interesting times.

Murky waters

Sam: Sort of uncharted ground, but, it's sort of like credit cards, Kimberly.

You just have to know the pros and cons.

Kimberly: I guess so.

I guess so.

Isn't that true with all new technology though?

We're always scared.

Yeah.

Yeah.

I think that's always true.

We're always scared until we learn exactly what the parameters of the thing are,

Sam: You know, they have what they call the innovators.

They were like the first person, the first people to try these new things and use them.

And I'm not what they call an innovator.

I want to have proof that it works for a few people before I make the investment.

Kimberly: Yeah, yeah, I understand that.

I think that that's probably, prudent way to be.

So, yeah, exactly.

So a lot's going on.

It's a busy time.

AI is of course going to be even more in the news because at the time when we're recording in late August, mid to late August, I believe Google just had a big event and of course Apple has a big event in where they introduce their new stuff in September.

So I have feeling we're going to hear a lot more about AI.

Sam: And keeping up with the new Apple innovations is almost impossible because there's, you know, new stuff popping up every time the wind changes direction.

Kimberly: True, true.

And I'm never sure.

Is it actually that much different?

I mean, Yeah, yeah.

Sam: Is it worth me forking out the big bucks to buy something that's not that much different than what I've got already?

Kimberly: Right.

I am not one of those who tends to pre-order the latest iPhone.

Sure.

Yeah.

I mean, me either.

No, I don't update.

I don't buy new.

I don't until other people have already vetted it for me.

I mean, same here, but I'm always excited to see what's coming out or what they tell us is coming out, whether it actually comes out or not, who knows,

Sam: but it's always good to at least keep an open mind to it.

And that's something that I could probably even do a better job of myself.

But, you know, we should at least appreciate it and be receptive.

Shall we say, yeah, yeah, exactly.

I've so yeah, lots, lots going on.

Lots of, you know, I think August ushers in September.

And then before you know it, it seems like you're in the holidays.

Sam: So busy time, you got your Christmas shopping done.

Kimberly,

Kimberly: You're funny, Sam.

No, it's just the year at this point, once you hit this time of year, it's just pedal to the metal

Sam: There's never a dull moment between August and December.

Kimberly: That is true, it is so true.

Yeah.

Nope.

Not at all.

Sam: So we'll have plenty of discussion points, folks over the next four.

And you can add to those by the way.

Kimberly: Oh, here we go.

Tell us how Sam. tell us how.

Sam: You can email us.

Well, we always love hearing from our, we call them disruptors.

Don't we?

Kimberly,

Kimberly: We do.

We do.

They are our disruptors.

Yes.

Sam: We always love hearing from our disruptors and the email address.

It's real hard demandanddisrupt@gmail.com

Kimberly: That is how you get us.

Sam: That is how you find us with your questions and comments and show ideas.

And you might even get a shout out on the show.

Kimberly: You might even exactly.

So do that, do that definitely.

But before you do that, stay tuned and listen to my interview with Reese Williams.

(Music playing)

Kimberly: Welcome to demand and disrupt a disability podcast.

I am Kimberly Parsley and I am here today with Reese Williams.

Hello Reese.

How are you doing?

Reese: Well

Kimberly: Wonderful.

And Reese and I are going to have a discussion about mental health.

And that's not something we have covered enough here on demand and disrupt, but we are going to rectify that today and talk about mental health and mental health services and maybe ways other people can find information if they're in need of mental health services.

So Reese, why don't we start by having you tell us about your journey with mental health.

Reese: Well, that journey started

Probably when I was extremely young, I was born into a family that there was a lot of trauma and so I don't remember anything before trauma.

And so by the time I was maybe three, I had dissociative identity disorder.

Well, and by the time I was three, a new personality had appeared.

Kimberly: So tell me about what is that dissociative identity disorder?

What is that?

Reese: Associative identity disorder is something that happens under extreme and prolonged trauma.

It's when the mind just is, it's that you can't take it.

And the brain is actually, it works amazingly and it separates you from whatever's happening by creating another part who will experience it instead of me.

I don't know if that makes sense.

Kimberly: So it's like a self protective.

Reese: Yes, it's sort of protective.

Yes.

Kimberly: Okay.

Okay.

I, not knowing anything about that.

I would assume three is extremely young for that to happen.

Reese: Yes.

Kimberly: Okay.

And, so then tell me how you continued on dealing with that.

Reese: Well, because my abuse lasted until I was 18 years old, I had several personalities cause there, you know, it was just one trauma after another.

And so my mind split into more than nine personalities.

Now they're only eight active.

And what that means is there's eight of us that will come out and be present.

There are other ones that I don't need anymore that, and some of them, I don't even remember, you know, I'll go back and read something and know that none of us wrote that.

And so, you know, there are some that I just don't remember anymore, but they never go away.

They have a job to do and they come out when they're needed.

Kimberly: I, guess I don't even know where to begin asking about that.

How, I guess, how do you function with that?

Reese: It's taken years and years to be able to communicate with each other.

And really I started being able to do that a couple of years ago, when I finally found a decent therapist and I'm 63 years old, way back when it was considered not real and they called it, I can't remember what they called it other things.

Kimberly: Is that what they used to refer to as like split personality disorder or something?

Reese: It was multiple personality.

Oh, right.

Right.

Kimberly: And you're right.

I remember people saying, well, that's not real.

Reese: And most people, they watch the movie Sybil or some of these new ones about, you know, having multiple personalities and people actually think that's what it's like, and it's not, it's not like that.

It's not like so bizarre.

At least to me.

Kimberly: Yeah.

And it's hard to know when you're getting your information about something from something that is a work of fiction, it's hard for people to know what's creative license and what is based in reality, right?

Reese: Exactly.

Kimberly: So how long, how long did it take you?

You said to find a therapist who could help you work with that?

Reese: The first therapist I found, I was in my late twenties and she's the first one that diagnosed me at that time.

I wasn't ready and I didn't want to talk about it.

And so I left that therapist and it wasn't until about two and a half, three years ago that I finally found a therapist that was willing to accept the diagnosis, agree with the diagnosis, and then allow other parts to come out for therapy because every one of us has been through trauma and, you know, every one of us needs help in some way or another.

There's like separate people.

We all have different interests in our mind.

We all look differently, write differently, act differently.

The last two therapists that I've had, have been able after a time to recognize who is out at the time, which is so nice.

Kimberly: Yeah.

And now do each of the personalities have a different name?

Reese: They do.

They do.

Different age and different names.

Kimberly: Okay.

So like if I'm talking to Reese right now, will Reese know if another personality sort of what, what happens then?

Tell me what happens then.

Like takes over.

I don't, I apologize for no, that's okay.

Reese: That's okay.

This is about education.

Kimberly: So it is.

Yes.

Uh-huh.

Yeah.

Reese: I want to be honest and say there really is no Reese.

Reese was a name chosen just out of necessity.

The person that was born in this body since the abuse happened so young has been, I don't know how to explain this, where you would understand has been put aside and protected and not allowed to come out.

And so that part is still very, very young and it had been the decision to let that part stay protected and not come out.

And so you are talking to Devon.

I'm the one who handles the business, you know, anything that daily talking to doctors or, you know, like this interview.

Kimberly: Uh-huh.

Okay.

Okay.

So is this the personality that you'd say you're, most comfortable with?

Reese: Actually, I'm comfortable with all of them.

Kimberly: Okay.

Reese: Now some of them, there's one named Alex and he is 16 and he acts like a 16 year old.

Kimberly: Oh my goodness.

Reese: Yeah.

Yeah.

I mean, I had been in therapy in a group not long ago and he came out and he told the therapist, this is just all stupid.

You know, we're in a group of people and he just says, this is just stupid.

I don't see what the point is.

Kimberly: That sounds like a 16 year old.

Reese: Yeah, it does.

Yeah.

Yep.

It does.

So the age differences are three, five, nine, 12, 16, 18.

I'm somewhere in my thirties.

I don't know exactly how old.

And then Wendy is the artist and she is in her twenties.

Kimberly: And do the personality shifts happen in an effort to protect you or to me or to meet a need?

Reese: Yes, both.

Both.

Kimberly: Okay.

Okay.

Reese: And most of the time they will only come out if there's a trigger except for, you know, me, Devin and Jack.

We're out most of the time.

Kimberly: Okay.

Okay.

And so tell me about, I mean, that sounds like a lot to deal with.

Reese: Yeah.

Trauma and all those things.

Tell me what impact that had on your ability to function and live a life in society.

Reese: Well, it's still difficult to do that.

It has affected relationships.

You know, to be honest, my sons and I are estranged and I don't remember much of their childhood.

So I don't know if there were things said, you know, I wish I could remember, but I don't, and that evidently means there was another part or parts raising them.

So that's been, a consequence.

I'm disconnected quite often, you know, especially from emotions.

Sometimes I just don't even know what I'm feeling.

And then there's the whole thing about trust that nobody can be trusted unless they earn it.

I'm always guarded.

There's always a wall up.

And I really separate myself from other people.

Kimberly: Do you think that's common among people who have mental health difficulties?

Reese: I think so.

I think that people with mental health difficulties, oftentimes they don't talk about it.

You know, I know many people with mental health disabilities who've lost families, can't make friends.

Just, it's a very lonely world to have a mental illness because unless a person has one, they have no idea what it's like to deal with that out in the world.

Kimberly: And it is a disability, I mean, it is a disability, correct?

You would consider yourself disabled.

Reese: Yes.

I've been disabled for a while.

Yeah.

Right.

Kimberly: Because I think it's important that we say that it's considered a disability.

Yeah.

I think it's important to say that.

And also, tell me about maybe what it's like to have a disability that's hidden.

Reese: Well, the disability that's hidden, people don't understand that a lot of times, not even family members because they can't see it.

And when it has to do with trauma, I get, you know, I used to get family members.

I don't see my family anymore, but I used to get them saying, what, you know, why don't you just get over it?

I even had, I even was married and the person told me, aren't you finished with that yet?

You don't ever get finished with it.

It's there.

Kimberly: Right, right.

Reese: It's not something, mental illness, you do not get over.

Kimberly: I think people sometimes equate mental health and mental illness with like a mood.

Reese: Yes.

Kimberly: You know, and it's not that, no easier for you to get over your mental illness than for me to get over blindness, you know, it's just not a thing that will happen so now you have found a community in Bridgehaven.

Reese: Yes.

Kimberly: Can you tell me about Bridgehaven?

Reese: Yeah.

Bridgehaven is a mental health center here in Louisville and it's a big place.

It's over on second street and they, sorry, they are art based and there are, you don't, you get a therapist, but you also have therapists that you can interact with all day long.

Everything is run by therapist or peer support specialists.

So if, if my therapist is unavailable to me then I can always go speak to one of the other ones without having to make an appointment.

They're very generous with their time.

And for the first time in my life, back when we had snow and I wasn't able to go, I mean, Bridgehaven is my lifeline.

I actually had three of the therapists call me to see how I was doing.

Kimberly: Oh, that's nice.

Reese: Yeah.

To me that that's just about unheard of.

Kimberly: And you said it's art based.

Tell me about that.

Reese: They have a lot of programs with art, they have a lot of art therapists and I had never done art therapy until starting to go there.

And it's something that I can't even describe, how they can, I don't know how they can tell what's going on or give insight to me through art and, you know, they'll ask certain questions about whatever it is I've created and they pull things out of it that I would not have thought possible.

They do fun things.

It's not always just therapy in about, let me see three or four times a year.

They have an opportunity for artists to sell things.

There is a St.

James, they have a table that we're allowed to sell things.

They just had their spring art show.

There's a Christmas Bazaar.

I mean, they give you a lot of opportunities to actually be able to make some money from your art.

Kimberly: Oh, wow.

And what kind of art mediums are available and what kind do you do?

Reese: I do sculptures.

Kimberly: Oh, that sounds fun.

Reese: And actually in the art studio, they have ceramics, they have a pottery wheel, they have a kiln.

And they have just about every kind of art supply you can think of.

You know, all kinds of paint and drawing materials and they have fabric and people learn to sew.

So it's really, it's helpful things.

I mean, you know, learning to sew is a good skill for some people to have.

Kimberly: True, true.

Reese: I don't know where else they could learn that.

Kimberly: Now, can you tell me about maybe a piece you've recently created and kind of, if there's any insight, a therapist was able to glean from that piece.

Reese: They will ask questions.

Like I did a piece where the prompt was to, we do a visual journal.

And what that is, people are writing in a journal.

Sometimes they're afraid that somebody will read it.

A visual journal is something that you do collages in, you can draw in.

And one of the prompts was to make something in your visual journal to describe how you feel today.

And so I go through and just pick out pictures in magazines and then they'll, they'll talk about it.

Like what makes you feel this way?

Why did you choose this picture?

Tell me about the process that you went through and, you know, how did you feel before?

How do you feel after?

It's just really, interesting.

Kimberly: That sounds like that would be very soothing for the mind to be focused on.

It does sound like it would be very soothing.

I can see how, that would be beneficial.

So are, do you go to bridge Haven every day?

Reese: I do.

Kimberly: How important is it for people with mental health disorders to find a place like bridge Haven?

Reese: I think it's very important before bridge Haven, I didn't go anywhere.

And so I spend too much time, too much time thinking.

Bridge Haven is structured.

It's just, it gives me time to get out of myself.

And when we do the art, therapist liked to call it the flow state.

They wanted to get into the flow state where you said it was just very soothing, the type of mindfulness.

Kimberly: And that's not, that's, that's very difficult to achieve on your own.

Isn't it?

Reese: Correct.

And also just being in a place where everybody else has a mental illness and nothing, you don't feel weird, um, other people's mental illnesses.

Don't bother me.

You know, we're all in the same boat and we're all there for the same reason.

Wouldn't it be nice if that was spread to the greater society

Reese That would be wonderful.

Kimberly: Where we were accepting of people's mental illnesses.

So on that note, over the last, I don't know, I guess 20 years or so have things changed in society.

Reese: And so well in society, somewhat, I still believe it has a long way to go.

There's still stigma.

There's still like with my diagnosis, there's still people who say that's not real.

It's just like on television and you don't act that way.

I actually had someone tell me that.

I disclosed to a person that I was engaged to about my diagnosis and she said, you don't have that because if you had that you would act a lot different.

And, you know, people still believe, and even some professionals still believe that dissociative identities disorder is not a valid diagnosis.

Kimberly: Uh-huh.

Iseathere improvement?

Reese: I do believe there's improvement in places like bridge Haven, you know, there used to not be places like bridge Haven and people are on their own.

You see a lot of homeless people who have mental illnesses because they either don't have anyone to help get them going in the right direction, you know, family.

I can't stress enough how mental illness affects the relationship with your family.

It's like, there's one that's got something wrong with it.

You know, one child that's got something wrong and they don't know how to handle that.

A lot of times, well, I'm going to say my family didn't know how to handle that because I know that some families are very good with, their kids who have mental illnesses and very proactive.

Kimberly: And I think that's an improvement, don't you?

Reese: I do think that's an improvement

Kimberly: That any families at all now are willing to advocate and get help for their children.

Reese: Right.

And you don't automatically get thrown into an institution anymore.

Kimberly: Right, right.

Does that still happen?

Reese: I don't think so, at least in my world, I haven't seen it happen.

The only time that I've seen people, um, are short hospital stays, but I guess if a person was unable to even function in society, then that would probably, they would probably be institutionalized, but on the whole, I don't think that, that everyone needs to be institutionalized.

And I'm assuming that some of the people who are, don't really need to be.

Kimberly: You mentioned people who are homeless, um, just navigating the systems to get help is overwhelming.

Reese: Yes, it is.

Kimberly: And I think, I think that is the root of a lot of homelessness is just that the systems I suspect by design are so difficult to navigate that it's not, it's not a choice to be able to do that.

Um, and there are places like centers for independent living, uh, like, uh, and I guess, Bridgehaven who can help people to navigate those systems, how common is a place like Bridgehaven?

Reese: Not very common.

I believe it's the only place.

Well, it's not the only place in Louisville, but it's the only, it's the only place of their type in Louisville.

It's just, I can't even describe what it is, what it's like there.

It's a, it's a community.

You don't feel like you're going into a place to have your head shrunk.

Yeah.

Kimberly: Yeah.

Reese: It's a community of people.

Kimberly: So it's kind of like finding a home.

Reese:X is definitely.

Kimberly: That's, that's great.

So tell me what, what, what would you tell someone?

What, what, what would you tell someone who's struggling with mental illness?

They're there.

I think shame is sometimes something people feel, um, because we're told, of course, you know, like I think you and I spoke earlier about, you just pull yourself up by your bootstraps and it's all on you and you know, this individualism, which we know is all a fallacy.

The people don't, people don't really live that way.

So what would you tell someone who is struggling with mental illness?

Reese: Well, I would tell them first not to give up and that there are places and.

There are phone numbers.

I have written a book and in that book, I have, I put in the numbers of, of mental health agencies that people could call if they, you know, needed to do that.

What I would tell somebody though, is that there is help out there.

They just need to be able to get plugged into it and how that's a good question.

That's a really good question because like we were talking about the homeless people don't have access to much of anything.

So that's one part I think that needs to be worked on in our society is having things readily available for people with mental illnesses that anybody can access.

Kimberly: Right.

To make, to make it easier.

Reese: Yeah.

Kimberly: The barrier to entry is so high to even get basic services.

Yeah.

So it is definitely hard to do, but I like what you said about, don't give up.

Anyone who hears this, here's our podcast, don't give up.

And so what, what, what can you say to someone who maybe knows a family member or a friend who's struggling?

What can they do to help?

Reese: Well, what they can do is first, just listen and not give advice as to what they should do or how they should be.

Cause families sometimes tend to do that.

I would say just let them be who they are.

And not try to put them in some kind of a box.

People are different anyway.

Um, and definitely if it's a family member, I would say help them get help.

Hook them up to something that will help them.

And in the end, it will help because the person who has the mental illness is getting helped or feeling better about themselves.

And I think that would just have an overall effect on the family itself.

Kimberly: I agree.

I agree.

But you know, uh, judging others, that's kind of like the favorite American pastime.

That's just what we do.

Reese: Yes, we do.

Kimberly: We love to do that.

So, uh, maybe we should put that aside and just accept people as they are.

And if, if there's, if there are struggles, let's believe that they're struggling and do what we can to try to find help because sometimes it's just calling a number.

Reese: Right.

And I like what you said about believe, um, people need to, to believe in what somebody else is telling them and not negate it.

Belief is a big thing.

Um, like we talked about when people don't believe there's such a thing as my diagnosis.

You know, that, that doesn't feel good.

Kimberly: No, no.

Yeah.

It's, it's important.

Uh, we've come a long way, like you said, but still so far to go.

So far to go, um, anyone listening can of course call the center for accessible living and they can reach out to bridge Haven if you're in Louisville.

And if not, then reach out to your, uh, local, wherever you are, your local or area center for independent living, because that's what we're, that's what we do.

We, we, we will find, we don't know the number to tell you.

We don't know who you to call, but we'll find it for you.

Reese: Well, I would even think that if somebody has a primary care physician and would even talk about it with their physician, I imagine that they could hook them up.

Kimberly: That's a great idea as well.

That's a wonderful idea.

Reese, this has been a fascinating conversation and I have learned a lot.

And I think it's important to continue to talk about mental health and mental illness.

So thank you so much for joining us today and for educating me and our listeners on so many aspects of mental health.

I appreciate it.

Reese: Well, thank you.

No problem.

Kimberly: Best of luck to you.

Demand and Disrupt is a production of the Advocato Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song, Change.

Don't forget to follow or subscribe so you never miss an episode.

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Thanks everyone.

You say you've seen a change in me just for once, I think I would agree.

We both know there's a difference we've had our curtain call.

And this time the right thing's on the wall.

This wall of words we can't defend.

Two damaged hearts refuse to mend.

Change, this situation's pointless with each and every day.

It's not a game we need to play.

Can we try to make things better?

Prepare and rearrange things, but each and every letter spells out the need for us to open up our minds and hearts to change.

Change, robotize than what we'll be will be.

Disregard for good to set us free.

There's just no way of knowing if love lives anymore.

We turn out the light then close the door.

We try to make things better, prepare and rearrange things, but each and every letter spells out the need for us to open up our minds and hearts to change.

Change, change, change, change, change, change. you

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Transcript

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Welcome to Demand and Disrupt, a disability podcast.

I'm your host, Kimberly Parsley.

And I'm your co-host, Sam Moore.

Kimberly, million dollar question.

Are you staying cool?

No, as long as I stay inside and still, you know how that goes.

That's the best way to stay cool, although, you know, air conditioners are getting quite the workout across the state and beyond.

Really are.

It is miserable.

Y'all stay safe out there.

Stay hydrated.

Stay hydrated.

If you have medical equipment.

I know a lot of places here where I live have cooling centers open.

So you might want to look into if you have medical equipment that you, you need, be aware of where those cooling centers are in case you lose power.

And if you want to share the water and you're in the Bowling Green area, you know, Kimberly's daughter, Sarah is going to have outdoor band camp next week.

And they're going to need plenty of water.

Yes.

Yep.

Yep.

Yep.

Bandcamp school, school starts, uh, less than three weeks.

Yeah.

I get two weeks from, uh, today in Henderson and in Bowling Green, Bowling Green, I guess is probably about the same.

Yeah.

Uh, the three, I think it starts on the 13th.

Yeah.

Oh, okay.

Yeah, okay.

So yours is the week after us then.

Yeah.

So, um, it's creeping up on everybody.

It really is busy, busy time, busy time today.

Speaking of busy, my interview guest is Mary Jo Lord.

She is the coordinating editor of Magnets and Ladders magazine, which is a, uh, online publication for people with disabilities, um, it's about people with disabilities, but, or, and, or by people with disabilities.

So for both about, and by yes.

Yeah.

So if you've ever thought about, uh, publishing or writing or just how that whole thing gets done, give it a listen, my interview later on.

So Sam, have you ever thought about pinning your biography or writing or any of that kind of thing?

I've been told I should write a book, but I'm like, I feel like I still got some more chapters I better add to it before I do, but, um, you know, maybe if I feel real inspired, I, you know, I did write the, I've done writing in its most basic form.

Uh, I've written, um, I wrote the theme song to my other podcast, Blavin' in the Bluegrass, which by the way, I need to write one for.

You've got a great, we've got a great theme song for the man, but if we ever need another one, I'm going to challenge myself and come up with some more lyrics.

And the theme song, you, you wrote the theme song.

It's very poetic.

I mean, it's just a great theme song for Blavin' in the Bluegrass that you did.

Oh, I'm glad to get you.

As long as Kimberly approves, I think it's great.

And then you performed it also.

You sang it.

Yeah.

With my friend, E.J.

Simmons did the background instrumentals and stuff, but wow.

So very, lots of creative pursuits.

When are you going to sing for us, Kimberly?

Um, let's see about half past, never.

I know better.

So, uh, speaking of creative pursuits, how is the play going?

Yes, I am involved in a play for those of you that maybe missed the last episode.

I am, uh, uh, acting in a play that one of our local playwrights, uh, just got through writing not long ago.

And we started rehearsal about a month back.

Uh, I am, uh, I am running a radio station in this play, Kimberly.

And it is called, like, let me, let me give me a minute.

They don't have a call letters or anything like that.

But yeah, but the play is taffy shenanigans.

You got it.

There you go.

There I go.

I got it.

Pulled it out of your ear in there.

I knew it had shenanigans in it, but I was, I was like tabby tacky.

No, that's not right.

And you finally figured, oh, there's two F's in there.

Yeah.

I got there in the end.

Taffy, by the way, is a real life place or, well, it used to be that it used to be a real life place in Ohio County.

How can a place be used to be?

How can it used to be?

Does it not?

I think it's considered, I think Bob Park, the guy that wrote this play.

I think he told me that's like considered part of Beaverdam now.

Oh, okay.

Okay.

So it like swallowed it up or is Taffy just part of Beaverdam?

Yeah, I guess Taffy used to be, you know, sort of like a neighborhood and then Beaverdam just sort of claimed it.

And I guess it just sort of, you know, became part of it.

But, but that all happened after Bob left though, you know, Bob's been here in Henderson since the late fifties.

So, you know, I don't, I don't think, I don't think he fully has grasped how that happened, but, but he has lots of fond memories of Taffy and the people there, and that's who the characters in the play are, are sort of based on, people he grew up around.

Right, right.

Now, what did, was your character, did he write that specifically for you?

Yeah, cause we never, well, he had me being a news reporter in a play, I guess a few years back, but, but yeah, I guess since he knows I, you know, was a broadcasting major and, and I do podcasts and things, I guess he thought, you know, he thought that'd be right up my alley and it is, but you know, it's something that, that I really enjoy.

But, but yeah, up until now he's, and, you know, like I said, he had me reporting news once, but other than that, he's not had any radio people in his place.

Oh, so you memorizing your lines yet?

Yeah, I'm working on committing them to, to memory.

I'm probably about, oh, 20% there.

Well, hey, I mean, that's not bad.

That's early days.

Yeah, we still got about a month or so before we put the thing on stage.

So there's time.

Right, right.

Well, so yeah, so creative pursuits, very, very important.

Absolutely.

We should all challenge ourselves in some form or fashion.

Yeah.

Yeah, I do some, I do some writing, haven't submitted to magnets and ladders, but I, you know, I may try, I may give it a try.

Hey, I'm not putting it past you, especially since you're, you know, you're, you're diving into poetry somewhat these days.

I am, I am doing poetry now instead of novels and stuff.

I do some more shorter form stuff like essays and poetry.

So I'm enjoying it.

And shortly after you master poetry, you're going to dive into singing.

Um, not probably, probably Sam's orders.

Hey, you know what?

I have been trying, I have been learning to play the harmonica.

Harmonica.

Okay.

See, that's a start.

That's, that's a musical endeavor.

Uh, well, I mean, I used to be musical.

I played in the band and stuff.

Oh yes.

Yeah.

You used to play yourself and of course your daughter does now.

And my daughter does.

My son's in the orchestra.

He plays cello.

So yeah.

And, uh, harmonica, of course my son is like, he just, he got, I, I got them harmonicas for Christmas.

And so he sits down and I was like, Hey, you know, there's a cool harmonica piece at the beginning of, uh, piano man by Billy Joel and the child looks at it and in like, um, a matter of minutes, like four or five minutes.

Yeah.

He plays it.

That is, that is off.

But yeah, you folks need a harmonica and a perfect example of a, of a harmonica, uh, stand out.

I wouldn't say solo, but stand out.

Just listen to, uh, piano man by Billy Joel, especially at the beginning.

The beginning.

Yeah.

Yeah.

That's a great example.

You know, there's lots of Bob Dylan.

I believe Bruce Springsteen even does some harmonica and his stuff.

There's a Tom Petty.

So, you know, lots of harmonica and the heartbreakers.

Yeah.

Yeah.

For sure.

So absolutely.

But, uh, yeah.

So that, what is, what does Michael play or has he ever played any kind of instrument that you know of my poor husband?

He's a hopeless.

He's got to hear that.

I guarantee I know he edits this.

So he's going to, I mean, I love him dearly.

I bought him a guitar for his birthday so he could try to learn.

And it's, it's the guitar is doing very well over here in the corner of the dining room.

Just hanging out, watching collecting dust, collecting dust.

Yeah.

Um, Oh God, you let me know the, you let me know the outcome when he hears that.

When he hears this, what he says.

Yeah.

But you know what?

He's willing to try.

He's willing to try.

So there's that.

Yeah.

He's got an open mind.

He's going to, you know, he's going to get there at some point.

Well, by his birthday, he's supposed to play, Sayer challenged him to play a song by Weezer.

So.

Oh, a rock band.

Yeah.

Yep.

So it's a song called Buddy Holly by Weezer and she loves it.

And she has challenged him to play it.

And I shiver to think what will happen if he doesn't.

So.

Now remind me, when is his birthday?

It's in December.

Oh, so he's got like four months.

Yeah.

Yeah.

He's got a while.

He's going to need it.

He'll probably need every bit of it really will.

He'll be sitting, you know, after Thanksgiving dinner, he'll be practicing.

Yep.

Yep.

He'll need to need to do that.

Well, he's trying to digest his mashed potatoes and gravy and pumpkin pie and all that fun stuff.

Although to be fair.

Okay.

To be fair.

He works.

We have two teenagers that have to be carted around everywhere.

So it's a busy life.

He's got a few things going on.

He does.

It's not like he's got like a gob of free time to.

And then he's got to sleep for a few hours.

Yeah.

Well, you know, I let him sleep every now and then.

Once in a while.

Yeah.

Once in a while.

So it's not like he's slacking off.

He's, it's, it's hard to find the time for hobbies in it.

It's it is.

Yeah.

There's only 24 hours in a day and you got to spend them wisely.

But Hey, the best way to get something done is a deadline, right?

That's yeah.

Yeah.

Self-imposed deadlines.

They're, they're sometimes necessary.

They are absolutely.

So, um, and deadlines and opposite of that is an anniversary.

And we have got one coming up the weekend of this pot that this podcast will come out.

It is the 35th anniversary of the passage of the Americans with Disabilities Act. So that'll be Saturday at Saturday.

Okay.

Great.

So I guess this will probably be up either the day of or day before, but yeah, Saturday the 26th is the official anniversary, George HW Bush, Mr. Read My Lips.

He signed that into law.

Signed that into law in 1990.

And, uh, well, I was only two years old.

Well, I was substantially older than two.

Not substantially, but you were older.

I was older, but it made a huge difference in my life.

I, uh, I think I said on a couple of podcasts ago that I lost my sight just a couple of months before the ADA was passed.

And thank goodness that I've basically my entire disability, my entire life as a disabled person, I have had the protections of the ADA.

Yeah, it's always, you know, it's always been a nice little reminder for everybody that, uh, you know, protection of, uh, of those with disabilities and inclusion of those with disabilities is, uh, is essential.

And, you know, Kimberly, I was telling y'all there, there's a really cool website, uh, that everybody should check out to celebrate this anniversary.

It's ADAanniversary.org and you go on there and I guess it was created specifically for, for, uh, this little celebration and you can find, you know, more information on the act and you can even find this really cool video with testimonials on, uh, on people and how their lives have been touched by it.

One of them, uh, speaking was the, uh, director of research for the American association on health and disability.

And, uh, yeah, it was, uh, it was Dr. Pratt or, um, yeah, yeah, she was a doctor.

I'm pretty sure, but yeah, Dr. Pratt, director of research.

And she said she had a disability when she was about four months old, but, uh, left her paralyzed from the, from the waist down.

And, um, you know, she thought for a while in her childhood that everybody had a disability.

And then she realized that, you know, not everybody did.

And as she got older, she thought, well, if I'm going to be a productive member of society, I guess I'm just going to have to learn to walk.

Well, then she was six years old and she went to the Boston marathon.

She lived close by there.

She's from the Boston area and everybody up there, I guess it goes.

And even if they don't partake, they, you know, go cheer people on, support the event and, uh, there she noticed all these people, not only walking on foot or running on foot, but whizzing by in their wheelchairs, 25, 30 miles an hour.

That let her know that, that let her know that, uh, just cause you have a disability doesn't have to stop you from athletic pursuits or being productive.

And speaking of, uh, wheelchairs and the Boston marathon, of course, uh, I know on a previous show you featured Matt Davis, right?

Lisa interviewed Matt, uh-huh.

Oh yeah.

Lisa interviewed Matt.

Uh, and of course he's a coordinator of student disability services at, um, at Western Kentucky university and he has been in, uh, at least one Boston marathon that I'm not really, uh-huh.

Wow.

Yeah.

And he's done other wheelchair races too.

Oh yeah.

I knew he was big into wheelchair racing for a while.

Uh-huh.

So yeah.

Yeah.

If you, uh, if you have any questions about wheelchair races, I'm sure he'd love to hear from you.

Yeah.

Uh, matt.davis of WKU.edu.

I'm sure he'll appreciate that.

Um, you know, those testimonials and things, those are, those are so important.

Share in our stories.

That's one of the things we want to do here on demand and disrupt is share those stories.

That's why we're here.

We, we want to share the stories so that people don't feel alone.

They can, you know, break down our own barriers, barriers of internalized ableism and work to make change for ourselves as there's power in numbers.

There's power in numbers and we are starting to refer to the people, our listeners as here we go disruptors disruptors.

Yes.

Yes.

It makes sense.

Cause we're in demand and this right.

Right.

I, I came up with that all on my own, if you like it, but if you don't, then Keith Hosey came up with that and blame him.

I only came up with it.

If you approve.

That's all right.

That's all right.

Uh, uh, well, Keith said, you know, identity is important.

So let's, let's try to bring our listeners together under one banner.

And, uh, he suggested disruptors and I thought that sounded perfect.

So that, yeah.

So in heretofore, uh, we shall be referring to our listeners as disruptors.

So we love hearing from our disruptors via email.

Don't we do, we do.

We, uh, love to hear any of your comments and stuff to demand and disrupt at gmail.com.

Yeah.

You can email us with your questions, comments, thoughts, uh, guest ideas.

We do love those.

We love those always for sure.

We do love those and we don't bite.

So don't be afraid.

We do.

No, we, we, we love to hear from our disruptors.

Absolutely.

Yeah.

Go ahead and disrupt us with an email, please.

Disrupt us with an email.

We don't mind at all.

All right, gang.

Well, here we go.

Stick around for my interview with Mary Jo Lord.

I am joined today by Mary Jo Lord.

She is the coordinating editor for Magnets and Letters.

And she's going to tell us all about that publication and about herself.

Welcome Mary Jo to demand a disrupt.

Thank you very much for having me.

So tell me about yourself and about the publication.

Well, I live in Rochester, Michigan with my husband.

We're both retired and, um, we're expecting our first granddaughter sometime this month.

Oh, congratulations.

That's exciting.

Thank you.

Thank you.

And, um, I've been blind since birth as the coordinating editor of Magnets and Ladders, I, the first thing that I do is I received the submissions and make sure that they meet the requirements for the submission guidelines, um, right back with the authors, if there's anything that immediately needs to be taken care of.

If there's a question about the submission, whether it's fiction or nonfiction is usually the big question.

If, if a story reads like one or the other, and then, um, I get the pieces put together in files for our committees.

And I'll talk more about that when I talk about Magnets and Ladders in general.

And then when the committee members give me their responses, then it helps me to determine what actually gets put into the magazine.

Once I have all that, I, I'm able to determine what's going to be published.

And then I put the home stories and articles in the magazine in an order and into sections so that the pieces relate to each other and so that they're in sections, so that like pieces are together so that the whole magazine flows.

That sounds like a lot of work.

It is, but I enjoy it.

Wonderful.

Wonderful.

Do you have a background in publishing in any way or, or, um, writing?

I write, I write poetry and some nonfiction.

A long time ago, I wrote fiction before my son was born.

So I write and I've been published, but I don't have any sort of publishing, publishing background.

Uh huh.

Okay.

Except with Magnets and Ladders.

Except with Magnets and Ladders, right?

So, so tell me about the Magnets and Ladders.

It's an online magazine for writers with disabilities.

The first issue was published in spring, summer of 2011.

And at that time, Marilyn Brand-Smith was the coordinating editor and she edited the magazine through 2013 and beginning with 2014, I was the coordinating editor, uh, from that point forward, we publish poetry up to 50 lines, although we prefer shorter, um, but we will publish some longer poems, you know, like I said, up to 50 lines, um, fiction and nonfiction up to 2,500 words.

We will feature a book excerpt if somebody has published a book and their book is available in an accessible format, meaning it's in an ebook or an audio format, then, um, we will often feature a book excerpt.

So tell me about the name of the publication Magnets and Ladders.

What does that mean?

Okay.

When they were looking for a name for Magnets and Ladders, there were all sorts of ideas thrown out.

I'm not sure what all of them were, but Lisa Bush came up with the idea of Magnet, like a magazine on the net.

And then, and then they added the S on the end.

So Magnets and then Ladders is, um, climbing the letter, the ladder of success to publication.

Oh, okay.

Oh, wonderful.

Great.

That is, I never got that before.

Magnet.

That's awesome.

Uh-huh.

So the, the magazine was always online, right?

There's, it was always online and we publish around 60 pieces each edition between 60 and 65, you know, of all sorts of length.

Okay.

And the contributors have all, all varieties of disabilities.

We're seeing a lot more variety and disability recently, which is good.

Um, for a long time, probably 95 or more percent were blind, but we're seeing a diversity in disability within the past couple of years.

We're seeing, um, more physical disabilities, um, the mental health disabilities, um, health related issues.

Okay.

And so just to clarify, you are open to all different kinds of disabilities, right?

Yes.

Oh, and we've had some, and we've had some deaf people that publish their work with us.

So do people need to, but the, the work itself that's submitted doesn't have to necessarily be about disability.

Is that correct?

That's correct.

Um, we publish some pieces that are about disability, but our focus is also on anything that somebody chooses to write.

The idea is that people are people.

They aren't just their disability and people with disabilities still travel.

They're still concerned about world issues.

They're still concerned about family.

They have memories and they've taken vacations.

They've, they enjoy going to restaurants.

They enjoy music and hobbies and all those same things that everybody else does, and they write about those things.

I believe when I was researching, it said you like for someone, if the article itself that they submit isn't about disability, then they just need to disclose what their disability is in the bio.

Is that correct?

Yes, that's correct.

Okay.

Wonderful.

And can you tell me about some of the interesting people or, uh, submissions that you've received over the years?

Uh, yeah.

Um, sort of like I'm, I feel like I'm being asked to pick out my favorite children, but, um, there's been so many, we, we receive a lot of, sometimes nonfiction, but a lot of fiction related to the environment.

Um, some of our writers write some really interesting environmental fiction in particular, science fiction or stories that kind of involve the supernatural, we receive historical fiction, uh, mysteries, we receive poetry about all sorts of subjects.

Sometimes it's disability related.

Sometimes we have someone that writes a lot of pieces about music and about medieval kind of work, um, those sorts of things.

Oh, uh-huh.

That sounds like Celtic, Celtic type homes.

You know, I love the, I love the nature pieces, lots of the poets and things.

I like to read nature and travel because we get a lot of travel.

Yeah.

Well, and it's interesting because I do not like to travel, but I like to read other people's experiences traveling.

And I don't like, I mean, seriously, the porch is as far outside as I want to get, but I love to read other people's experiences, you know, with nature and things, so we have someone that retired and he and his wife do a lot of travel and we get a lot of his travel pieces.

We get a lot of family memoirs.

Um, we're, we have somebody that writes about her own family, um, you know, relatives and her own memories.

And we get some fiction that are really strongly based in dialogue, which is good.

Creativity is just, I'm always amazed by it.

Aren't you just, uh, I'm always, I love to open up a new submission and see what it's about.

Exactly.

So tell me about behind our eyes, what that is and how it's, uh, how it's sort of affiliated with magnets and ladders.

Well, behind our eyes is a nonprofit writers organization for writers with disabilities, and it was founded in 2006.

And in 2007, they published their first anthology and it was called behind our eyes and that was kind of what started the interest in having a magazine.

And then in 2013, they published their second anthology and that was behind our eyes, the second look.

And then in 2003, we had our third anthology and that was behind our eyes.

Three, a literary sunburst.

So we've published three anthologies.

We sponsor magnets and ladders.

In addition to publishing the fiction, nonfiction and poetry, we provide prizes for first and second place and the prize money for that comes out of the behind our eyes budget and the behind our eyes members are on the committees for magnets and ladders in that the funding for the prizes that are given out for fiction, nonfiction and poetry each time comes out of magnets and comes out of the behind our eyes budget, we offer a first and second place prize in all three areas for each issue of my issue.

Right.

So, so there's a first, second, and then there are two honorable mentions that those don't receive any monetary prizes.

Okay.

How much is the monetary prize?

Or does that just depend each month?

No, it's, um, $30 for first place and $20 for second.

Oh, okay.

And in what are the categories again?

Poetry, fiction and nonfiction.

Okay.

And so those funds come out of the behind our eyes budget and we have committees for all three genres and there are five people on each committee and those people are all behind our eyes members.

And they are all there, they do the behind our eyes work on a volunteer basis.

Yes.

And Jay Smith, who's affiliated with behind our eyes, he's the webmaster for behind our eyes.

He's also the webmaster for magnets and ladders.

Oh, okay.

Now, is there a membership cost for behind our eyes?

No, we do ask for donations, but there isn't a dues or anything like that.

Okay.

Wow.

So I will put a link to behind our eyes in the show notes.

Magnets and ladders, it comes out twice a year.

Is that right?

It comes out twice a year.

Uh, the, it comes out usually the end of October and the end of April.

Okay.

So there's a spring summer and a fall winter.

And lots of people who have a disability might know that they have an interesting story to tell, but not, not know how to go about doing that.

Do you have any advice for like aspiring writers?

Well, the first piece of advice would be to just try sitting down and writing, but I would also strongly encourage people to join a writing group.

If they're wanting to seriously sit down and write their story behind our eyes, welcomes people at all writing levels.

We have critique groups, people can post their work on, on the message list and people will give feedback.

We do critique sessions on zoom and in, and on the phone line.

And other writing groups will do the same thing.

You know, that would be the first thing to do.

Find a writing group that works for you.

Because the other part about it is writing.

It sounds like it's easy.

You just sit down and write, but there's a lot more to it.

Writing is enjoyable as it is.

It's also work.

I tell you, I have written some amazing stuff in my head and then sit down to actually produce it.

And my goodness, it was so beautiful in my head.

But then something about committing it to the page or the screen.

It just doesn't work.

Does it?

No, no, it doesn't.

It sounds good in your head.

And then you try to sit down and put it into words.

And what was that that I wanted to say?

It's gone.

Yup.

Exactly.

And also when you work with a writing group, then there's, there's that commitment to having a time schedule.

Other people are counting on you to produce something behind our eyes also has a write-in on Friday afternoons where people just get together on Zoom and you talk for a few minutes and then there's an hour or more of silence.

Everybody mutes themselves and you write.

And then at the end, you come back and you say, you know, did you accomplish anything or not?

What did you get done?

Wow.

That's awesome.

To set setting aside that time for writing is so important, isn't it?

It is.

Yeah.

That, that dedicated time.

Also reading.

I encourage people to read Magnets and Letters and I'll have a link to the most recent episode in the, in the show notes as well, because you know, you can be inspired by what other people have written and that can, that can be quite a motivator.

Right.

You read, you read something and you think, Oh, I had a similar experience to that.

I could write this or this made me think of this.

Yeah.

Yeah.

And, um, you know, sometimes even just writing a book for your family.

Just writing something for your family is, uh, very, very meaningful.

You know, that's something that people can pass down their generations and get to know you and your experiences.

That can be important too.

Yes.

Because, you know, once, once you're not there to tell the story, then it's lost.

Yeah.

So, so Mary Jo, how important is creativity in your own life?

I know you're very busy with the, the practical side of, of Magnets and Ladders, but tell me about creativity in your own life.

Obviously it's important, or I wouldn't be working on something like Magnets and Ladders.

Um, and voluntarily, right.

And that itself is creative because it's, um, you know, I look at the, the work that I'm going to publish and think, okay, what would fit well together and what would be a good title for this section?

And that's creative in and of itself.

Um, and as much as writing is work, like I said, it's also, there's a sense of satisfaction when I've written something, you know, even if it's a five line poem, if it all comes together the way I like it, there's a real sense of satisfaction and it just feels good to have something accomplished.

Yeah, exactly.

How important do you think it is for people with disabilities to have this kind of space where they recreate work by other people with disabilities?

I think it's important because it gives them the opportunity to see, you know, these people have disabilities and look what they've written and it's out there in the world for people to read.

I think anything that helps us know that we are not alone and that there is community out there is so very valuable.

I agree.

And so how can people read the latest issue of Magnets and Ladders?

They can read it online at www.magnetsandladders.org and Magnets and Ladders is all one word.

If you are a subscriber to, you know, if you're a member of BARD, you can contact your library and ask if you can get a copy of Magnets and Ladders from the Perkins library on cartridge.

They're usually an edition behind, but they do record it, but it's only available on a cartridge that has to be sent to you.

Not, not download, not download.

No, not a download, unfortunately, but they do, they do a nice job of recording it.

It also gets put up on Bookshare.

And so if you're a member of Bookshare, if you prefer that way of reading, if you remember, but it's always online.

So there's three possible ways of reading it.

Wonderful.

Making sure everyone has the, the preferred medium and has an option to read it.

Wonderful.

And when is the submission deadline for the next issue?

Submission deadline for the spring summer.

Oh, excuse me.

For the fall winter edition is August 15th, August 15th.

Okay.

August 15th, right around the corner.

And then the deadline for the spring summer edition is February 15th.

Okay.

Wow.

So people got to be thinking ahead, don't they?

They do.

And the important thing to remember is when you're submitting for, for fall winter, don't please don't send summer pieces.

All right.

Yeah.

And, and the same thing for, for spring summer, um, you know, your, your lovely piece about Christmas and snow, you know, save it for the other edition.

Uh-huh.

So if someone does that, do you hold on to it or you all just, you, you just don't have the capacity to be able to hold on that they have?

Um, sometimes I do.

Sometimes you do, but there's one that I did that with this time that I'm hanging, that I purposely hung onto.

I specifically asked the person to please submit this to magnets and ladders, you know, cause I really liked the piece, not thinking that it would be submitted for spring summer, um, and I hung onto it, but I can't make a promise about that.

No, no.

Because we get so many submissions, but that particular piece was, was really something special and I did hang onto it.

And it's going to be in the fall winter edition.

Okay.

And so if someone does submit, how long, uh, after they submit, do they hear if they've been accepted for publication?

That kind of depends.

Some people find out in, let's say for the fall winter, they'll find out in September if they've won one of the contest positions, they may also find out if other pieces have been, are going to be published because if they've won a contest, I usually try to tell them if any of their other pieces are going to be published, they may also find out before then, because if I'm working on pieces, either for the contest or other pieces, if I start writing you and asking specific questions about your piece or wondering what you would think about moving this line here, or did you mean this, if I'm working on your piece in September, it means it's going in the magazine, not a big mystery there.

Right.

It's not a big mystery.

And the same thing, you know, if I'm working on your piece in March, your piece is going to be in the magazine or, or in March is when they get notified about the contest.

About, right.

About the, so if they're notified in March, that would be for the spring summer issue, right?

The spring summer contest.

And then the rest of people find out in April or October.

Okay.

Okay.

Gotcha.

And if their piece is not going to be published, I also let them know that.

Oh, that's nice.

So a lot of places don't do that.

That's very good.

That's, that's nice.

So where can people who might be interested, where can they find the submission guidelines?

It's always near the beginning of the magazine at the www dot magnets and ladders dot org address.

Okay.

And then it'll just be a link to submission guidelines, correct?

It, you know, there's, should know this off the top of my head, but there at the beginning, it gives all of the staff associated with the magazine.

And then I think it goes right into submission guidelines.

Okay.

Don't quote me, but everything is searchable by heading.

Right.

Okay.

Wonderful.

I will, I will look that up.

I will try to find the guidelines and put them out there in a link in the show notes for people to look at.

I feel certain we have some brilliant listeners who are writers as well.

And they will want to reach out and submit Mary Jo Lord.

It has been wonderful talking with you about writing and creativity and magnets and ladders.

Thank you so much for joining me today.

Okay.

Well, thank you very much.

Demand and disrupt is a production of the Advocato Press with generous support from the center for accessible living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song change.

Don't forget to follow or subscribe.

So you never miss an episode and please consider leaving a review.

You can find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks everyone.

You say you've seen a change in me.

Just for once, I think I would agree.

We both know there's a difference.

We've had our curtain call.

This time the writing's on the wall.

This wall of words we can't defend.

Two damaged hearts refuse to mend.

This situation's pointless with each and every day.

It's not a game we need to play.

We've tried to make things better.

Prepare and rearrange things.

But each and every letter spells out the need for us to open up our minds and hearts to change.

Oh, we're jaded and gray There's just no way of knowing If love lives any more we'll Turn out the light then close the door We tried to make things better Repair and rearrange things But each and every letter Spells out the key for us to Open up our minds and hearts to change Change.

Change.

Change. you you

thearc.org/blog/why-and-how-to-celebrate-disability-pride-month/

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript:

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly: Welcome to Demand and Disrupt, a disability podcast.

I am your host, Kimberly Parsley.

Sam: And I'm your co-host, Sam Moore.

Kimberly, we are officially in the dog days of summer.

Kimberly: It is so hot here, isn't it?

Sam: It's so hot in Kentucky, anywhere around Kentucky.

Doesn't really matter where you are.

There's no relief at this point.

Kimberly: None at all except air conditioning.

Sam: Yeah, exactly.

Which luckily you and I are in some knock on wood there.

Kimberly: I tell you, I tell you, we've been without air conditioning a couple of times, and it is miserable.

You and I were talking people in Kentucky.

We live here for the spring and the fall, right?

Because it is just beautiful in spring and fall.

Sam: No better place to be those two seasons.

Kimberly: Nowhere.

I mean, it is absolutely gorgeous.

But, man, it is hot in the summer and it's summers are so long.

And then lately, the winters have been cold and either.

Sam: Yeah, you definitely get both extremes here.

Kimberly: You really do anymore.

I mean, even even in the winter, it's even if it's warm, it's rainy, you know.

Sam: And so you kind of got to take the good with the bad.

But we definitely get four seasons, unlike Florida, where I think they get like two.

Kimberly: They get like I think they get like one and then a week or something else.

Sam: Yeah, a week or something else.

That's probably about right.

Anybody from Florida, if you're listening, correct us if we're wrong.

Kimberly: Do tell us if we're wrong.

Sam: Email demandanddisrupt@gmail.com

You know, we've been we've done the vacation thing there.

Kimberly and I both have, but just not spent long durations of time there.

Kimberly: No, only been there during tourist season.

And, you know.

Sam: Yeah, well, we started going on fall break before fall break.

You know, really caught on.

And now everybody goes on fall break.

If you have kids, you know.

Kimberly: Yeah, you go on fall break.

But now you get hurricanes during fall break.

Sam: Well, this is true.

Yeah.

And we used to go to get away from people from Henderson.

But now, you know, 70 percent of Henderson go south.

Kimberly: Yeah, exactly.

Sam: We we we'd we'd be diving right into most of them if we went down to the coast.

Kimberly: Exactly.

Exactly.

But we are in July and it is miserable here.

But it is Disability Pride Month.

Sam: That it is.

Yes, indeed.

Kimberly: So I thought, well, today, my guest is for the interview segment is Carissa Johnson and Keith Hosey.

And we are going to talk about navigating the health care system as a person with a disability.

So real, real fun stuff there coming.

Sam: You know, really informative.

It's it's, you know, a useful topic.

Kimberly: Oh, it's a great conversation.

I mean, we had a great conversation.

But yeah, but before that, I thought that you and I might just dive into the controversial topic.

Sam: I think you'll say dive into the pool.

Kimberly: No.

Well, that would be better.

But that'd be great.

The controversial topic of Disability Pride Month and how it's celebrated.

Now, Disability Pride Month is celebrated in July because in July, I believe, July 26th of 1990 is when the Americans with Disabilities Act was signed into law.

And that really changed the landscape of disability.

And sort of since then, people have kind of made disability pride.

We celebrate disability pride the whole month.

Sam: But hard to believe that was 35 years ago.

It's almost to the day.

Kimberly: Yeah, it does.

But, you know, people have their their feelings about disability pride.

So, Sam, what I mean, my feelings are well known on this topic.

What and on most topics, to be fair.

But so where do you where do you stand on the whole is disability?

You should be something you should be proud of sort of.

Sam: OK, I have definitely accepted my disability at this point.

And I'm not trying to to hide it from anybody.

And I really can't, because, you know, you go around with a cane.

It's pretty obvious that you have a disability or that I do.

Yeah, it tends to be obvious that I've got a vision loss of some sort.

In my case, I'm totally blind.

But, you know, I'm not one to to go around touting it, per se, as far as those being quote unquote proud, like, you know, waving their banner, as you put it, before we went on the air here and like, hey, I have a disability or hey, I'm totally blind or or, you know, I'm in a wheelchair, whatever the case may be.

You know, there's nothing wrong with any of those being totally blind or being in a wheelchair, what have you, nothing wrong with those at all.

But it's not something, at least me personally, that I'm going to go around going out of my way to talk about.

If you know what I mean, you know, I've accepted it.

And I'm cool with living with it.

I've definitely had plenty of practice living with it at this point because I've been blind since I was since I was a baby.

But, you know, it's just not something I'm going to venture too far out of my way to talk about, you know, I'm not going to bring it to other people's attention unless it flows and natural conversation or what have you.

So I'm not ashamed of it, but I'm not going to go out of my way to like brag on having a disability or anything like that.

Kimberly: I do.

I do get what you're saying.

And I think the reason I get it is because I I mean, I was sort of there, too, for a long time, because the idea of being proud of a disability is it just seems so weird to me because I was like, it always seemed like, OK, if you could choose not to be blind, would you?

And, you know, most people who have a disability, if you ask them, if you could choose to be not disabled, would you?

Most people would be like, yeah, yeah, I would choose not to be, you know.

Sam: Yeah, because like nobody asks to be in the predicament there and with a disability, you know.

Kimberly: Right.

No one volunteered for them.

Right.

Yes, exactly.

Sam: Well put.

Kimberly: And that is true.

And yet, I guess what I think about it is we have taken we've taken this thing that none of us volunteered for, because basically, if you look at all the minority groups, no one really volunteered to be in any part of those.

And I I sort of think if you take any any of those minority groups, and you're you're proud of what you have of the community, basically, that's to me, that's when I say disability pride, that's what I'm talking about.

I'm talking about the community, not not my particular disability, my particular way of walking with a cane, you know, anything like that.

Sam: The community as a whole.

Kimberly: It is it is the community as a whole.

Sam: It is the people who, you know, the bond.

Bond together, you know, they have.

Kimberly: Yeah, yeah.

The commonalities.

Sam: They sort of help each other through and maybe.

Advocate together in times of need.

Right.

Kimberly: The people who crawl up the capital steps.

Sam: Right.

Kimberly: Yeah, the people who fight for each other and fight for themselves and make change, even though, you know, so many times just getting through the day is hard.

But they're advocates and they're doing that.

And I'm really proud to be part of that community.

As much as I'm a proud to be a part of, you know, my family or Kentucky, whatever any of those things.

That does make me proud.

So in that light, yes, I do have a great deal of disability pride.

Sam: Well, that makes sense.

You know, you're proud to be a part of a group, especially those that those around you that supports you, maybe provides you with advice and assistance in times of need.

Like like you said, you know, advocate with you whenever that's necessary.

So there is a there is a sense of belonging there.

And so, you know, that definitely is understandable.

Kimberly: It is true.

But I don't think it has to be an either or do you?

I think so many times we look at things that are controversial and say, you must pick one side, and I don't really think it's like that.

I think.

Well, today I'm talking with you.

We're talking about disability stuff.

You're also disabled.

I'm proud to be disabled today.

But tomorrow, when I trip over the dog and, you know, wipe out on the floor and fall on, you know, something that makes sure you flex me and fill me in on all these shenanigans.

Sam: Yeah, I mean, you know, make sure you text and send me in the correct order, too.

Kimberly: Yes.

With expletives, you know, deleted, because there will be lots of those when some days disability just plain sucks.

It just does.

Sam: It has its days.

Kimberly: It does.

And I think I think that's OK. And it's not a you must choose a camp and stay in that camp.

I think it's it's OK to say that that, you know, you see how both things can be true at the same time.

Sam: You can have pride in one sense.

And, you know, the sort of happy medium like me in another sense.

You know, I think we we all kind of got that right.

Kimberly: I think so.

I do.

I'm going to link in the show notes to an article by that was posted on the website of the Ark of the United States.

And it talks about disability pride and how how what we're really doing with disability pride is pushing back on the shame and the stigma that disabled people need to conform, that we need to conform in order to be considered full participants in society.

Sam: So if you're not sure where you stand on the whole disability pride thing, maybe after reading this article, it'll it'll help you to sort of establish a stance.

Kimberly: Maybe.

Sure.

Give it give it a read and then let us know what you think, because wouldn't that be fun if people even differing comments, all kinds of things.

Let us know what you think.

demanddisrupt@gmail.com and or follow that link on the face on the in the show notes that links to our Facebook page.

And we'll have a conversation about Sam: We'll give you a shout out and maybe even read what you have to say right here on the air.

Kimberly: Absolutely.

We would love to do that.

We would love it.

So, Sam, anything else fun and interesting happening for you in the month of July?

Sam: Well, you know, one way I'm beating the heat.

Luckily, these are inside.

We just started rehearsals for a play that I'm in.

Kimberly: You're in a play.

I didn't know.

Tell me about this.

Sam: Believe this.

They're actually well, I'm I'm lucky that I know the playwright quite well.

And I've known him for a lot of years.

His name is Bob Park and anybody that lives in the Henderson area knows this man.

He used to work.

He used to be a dean out of the community college.

And so he used to have a radio show called On the Front Porch, where he would, you know, tell tales about folks from back home, which was Taffy, Kentucky.

He's from Taffy, Kentucky.

So, you know, he told stories and he later sort of transformed these stories into plays.

And so he's written these plays for quite a few years now.

And when he first started doing them, I was so young.

I wasn't in his first few plays.

But but I've been in about the last three or four.

Like I said, I know him quite well because he goes to my church.

And so this, he says, is going to be the last one he writes.

But he said that before.

So we'll see if that's actually true.

But I actually didn't have since I know the playwright and that helps.

I actually didn't have to audition, which really made life a lot easier for me.

Kimberly: So is this like local theater?

Sam: It is.

Yeah, these are, yeah.

These are all local people that that are in the play, which which does really make it unique.

We're not we're not quote unquote professionals.

But I've had a lot of people say that for, you know, a place like Henderson, it's it's pretty darn good.

So we're glad to get their approval and and we just we'll be expecting their butts in seats come next.

Kimberly: You know, what's the name of the play?

Sam: It's called Taffy Shenanigans on the air.

And so what?

So me, I'm actually they're starting a new radio station in the sleepy little town of of Taffy, Kentucky, and I am running it.

Kimberly: You're running it, huh?

Sam: Well, that's my that that's my particular role.

And we'll you know, we'll talk more about this for those of you that, you know, want to come up here and join us for it, be our guest.

But we'll we've got plenty more time to talk about it, because August 23rd and 24th are the are the big dates.

And so, you know, we'll be rehearsing between now and then and and fine tuning everything.

But it's a it's a good group.

We have a whole lot of fun together off stage, almost more than we do on stage.

Kimberly: Did you ever have aspirations to be in theater in any way?

I know you also do some some vocals, some singing.

And then you say you played piano.

So you sound kind of artsy, Sam.

Sam: Yeah, I used to play piano back in the day.

I still do sing some.

But, you know, as far as going into theater, I don't know that I took some theater classes back in high school and enjoyed them.

But I never had strong desires to pursue it for a career, I don't guess.

My aspirations were always along the lines of radio and broadcasting.

I always knew I wanted to run my mouth, which is, you know, one of the reasons I host Blavin in the Bluegrass and the Man in Disrupt along with you.

But but no, I guess I guess the thought of pursuing theater for a career, I guess, was just never real, real high on my priority list.

Kimberly: Well, I have a technical question, and that is, how do you how do you learn your lines?

What do you do during rehearsal?

Do you use Braille?

Do you memorize?

What do you do?

Sam: Well, I'm glad you asked.

Actually, I do use Braille in the early going like right now when they're still reading from script.

And so I, you know, they send they send us all the script.

And I actually I'm not high tech enough at this point to have a Braille printer.

I should probably invest in one.

But right now I have the old fashioned Perkins Braille writer, Kimberly.

Kimberly: Oh, wow.

That thing is a workhorse, though.

I mean, you can't tear those things up.

Sam: You can't.

They are tough and durable.

And I do like that about them.

So I Braille out my lines.

And usually, you know, I'll Braille out the whole script, but I might Braille out maybe the last one or two words that somebody else is saying before I go, before I start talking to sort of clue me in on when to go.

And then I'll Braille out my lines.

And then, you know, as we go along in the play, they encourage us all to try to memorize our lines.

And so I'm going to separate myself from the script slowly, but surely here.

But for right now, I'm still using it.

Kimberly: Well, there you go.

Yeah.

Well, I wonder Braille.

There's just nothing else like Braille for doing that kind of thing, is there?

Sam: No, no, there's not.

And, you know, teach my Braille skills for it.

Although I basically, you know, I'll admit I still use mainly the Braille system that I learned in school.

You know, the new code is slightly different.

Not a complete, not a complete overhaul, but there are differences that I would need to learn if I were to, you know, want to.

Kimberly: No, I'm like you.

We use what's called a grade two or American Braille.

I don't know.

English, I don't know what it stands for, but now they use UEB or English, Unified English Braille.

And you're right.

It is a little different and it does take some, what in the world?

You know, when I'm reading them.

Sam: Yeah, if you're reading UEB, you'll come across, I'm sure, some contractions and things that you're not familiar with.

Kimberly: Right.

But and scary, scary thing is, Kimberly, 10, 20 years from now, they may come out with another system.

Kimberly: They may.

And then I'm just throwing in the towel at that point.

And you know what?

I switched to UEB, but that's all I'm doing.

No more.

Sam: You're like uncle.

I give up.

Exactly.

Kimberly: Exactly.

But I think a lot of people go back to, you know, what they, what they learn because so many of us like you, we Braille our own stuff.

Sam: So if nobody else is using it, then, you know, you don't worry about it.

Yeah.

Kimberly: You don't, you don't so much worry about it.

Sam: Sure.

So, yeah.

Kimberly: Well, fascinating.

So, so Sam will be performing in Taffy Shenanigans.

Sam: I'm glad you remember.

Look at it.

Kimberly: Oh, it's, it's memorable.

My goodness.

What a wonderful title for something.

That's true.

Sam: Stay tuned folks for more details.

Kimberly: Exactly.

And until then you can stay tuned to my conversation, part of our Cal conversations about navigating the healthcare system as a person with a disability with Carissa and Keith.

(Music playing)

Kimberly: Welcome to Demand and Disrupt, a disability podcast.

I'm your host, Kimberly Parsley.

And I am here today for another one of our Cal conversations.

And I am with Carissa Johnson and Keith Hosey.

Carissa, say hello to the fine people.

Carissa: Hello, everybody.

Kimberly: Keith, how are you doing today?

Keith: I am wonderful.

Hello, everybody.

Kimberly: Well, thank you both for joining me.

I know it's a busy time of year, lots going on, but these Cal conversations that Carissa and I had last time was very popular.

We got a lot of good response.

So I thought we would do another one and we're hoping to make this a monthly segment.

So this month, our topic is navigating the healthcare system with a disability.

And when I brought it up to both Carissa and Keith, they were like, oh, yeah, we can do that.

We got stories.

So I think we all have all have stories, not all of them great.

So Carissa, you mentioned you had been a little under the weather recently.

Why don't you tell us about how things are going and what things you encountered?

Carissa: Well, yeah, last week I was pretty down and out with upper respiratory stuff and the UTI.

Yay me.

But that's always fun trying to get what they need to get so I can get my medication and get out because I'm in a wheelchair and need assistance.

So I have to take everything home and then bring it back within a timely manner.

And I have to explain that every time.

It's so annoying.

Kimberly: I bet.

Well, the important thing, are you feeling better?

Carissa: I am.

I don't feel like the dead this week, so we're good.

Kimberly: Well, that's good.

Now, I know a couple of time is so weird, but I think it was back maybe this time last year, there was a rule passed that was going to make it so that medical equipment had to be accessible for people with a disability.

In particular, one of the things that I found really disturbing was that so many people who were in wheelchairs weren't even getting basic things like being able to have access to a scale.

So one person said that she hadn't been weighed in like 20 years.

Carissa: I haven't been weighed in about five.

Kimberly: Really?

Do you have to go to a special place that has a scale that is accessible for you?

Or how does that get done?

Carissa: The last couple of times they did it because my doctor's office is in a hospital.

They would send me up to a floor with an empty bed and somebody would help me transfer to the bed and they would get my weight that way.

Kimberly: Yes, I'm hoping that that rule gets, I'm hoping that that gets followed through with, we all have concerns about whether things that were promised are going to be actualized.

So Keith, what about you?

What kind of things do you have to deal with in terms of medical care?

Keith: Well, so funny you should talk about scales.

It doesn't affect me personally, but I did happen to have a checkup yesterday with my primary care doctor and I always just tend to notice things.

And the scale there, which is the major university here, is not accessible.

So I wonder about that.

I will say just one more thing about accessible scales.

My day job, as many know, is working for the VA.

The VA gets an A plus for accessibility.

All of our clinics here in Louisville have accessible scales for our veterans to roll onto, which is really neat.

Kimberly: But as far as I'm sure that's partially owing to you, right?

Keith pushing.

Keith: No, no, no, no, no, they've had it.

That's the federal government.

Sometimes when they're following rules are pretty good with accessibility, actually.

But as far as I go, I see different specialists and there's a lot of jumping through hoops, oftentimes earlier this year, February.

And it took about a month and a half for me to get a new leg brace because I have to see an orthopedic surgeon before I go to get my ankle foot orthotics measured.

And then they have to send that all off and then they have to fix it and it comes back.

And it's a dance with the insurance company.

And I guess that's the best way to say it is my biggest struggle is a dance with the insurance company.

Carissa: Isn't everything in health care and is the insurance company?

Keith: Here in America, it is.

Kimberly: Right.

Yeah, it is awful.

Everyone can relate to that.

Whether you have a disability or not, it's awful.

Carissa, you and I talked about that last time on the cost of being disabled.

Health care is right up there.

I have to get regular MRIs of my brain and spinal cord.

And I did that last weekend.

They take about three and a half hours.

So they try to schedule me on weekends at Vanderbilt.

And so, I mean, the techs are really good.

Most of the techs are really good and they try really hard.

So, you know, you go in and they're like, OK, here's the table.

And I've done this a lot.

And I'm like, OK, which end do you want me facing?

Which end is the head?

You know, so they put me down.

And then I tell you, so like they know I'm blind because they've had to guide me into this room.

And then they put, you know, it's an MRI.

So they put the ear earplugs in and then start talking to me.

And I'm like, dude, you got to get those out because I can't see you.

And now I'm uncomfortable because I also can't hear you.

And I'm really getting disoriented.

So take those out.

Well, you need those for the MRI.

Yes, I do.

But we're going to do some stuff before we do the MRI, right?

I mean, they're going to put in an IV and things like that.

So that's frustrating a lot.

And then I think when you have multiple disabilities, it just complicates things all over the place, because I also don't have the use of my left arm.

And I mean, it's not even going to stay on the table.

Like it has to be strapped to me for the MRI.

And it's like, I honestly just want to wear a badge that they can scan.

This is my body 101.

OK, these are the things you need to know.

And it gets frustrating.

Carissa: Yeah, I can definitely relate to that.

Back in January, I had to have an x-ray of my hip and lower back.

And so I actually brought my husband because it's easier that way most of the time.

But there was the techs there.

Oh, we can handle it.

So Ben steps back because he's like, great, I get a break.

So they asked me, you know, are you ambulatory?

Can you stand and transfer?

Yes, but this is how I do it.

Next thing I know, two of them aren't listening to me.

And I almost hit the floor.

Can you come over here?

Because you just have to explain your whole self to new people all the time.

Kimberly: Yes, yes.

And tell me if you two find this too.

But a doctor's office or any kind of health care facility is the most inaccessible place that you could possibly be.

Like I walk up to check in and now there's no person there.

It's like a kiosk, like a touchscreen kiosk.

I'm like, what am I even supposed to do with this?

I mean, I had Michael with me, I had my husband.

So he had to do this.

But like, what about people who don't have someone with them and can't see?

Because those things don't talk.

Keith: I think too, kind of Kimberly, what you're starting to get to there is the medical community expects disabled people to have a companion with them a lot of times.

You know, I think they don't think the blind lady is going to be checking herself in at the doctor's office, right?

She must have someone with her.

Kimberly: Right.

Because we can't like dress ourselves and feed ourselves and those kinds of things.

So of course we have, you know, we have people with us all the time, right?

I mean, I need a handler.

Yeah, Keith, I think you're onto something.

I think you're right.

They just, they don't, there's no universal design in health care is there at all.

Keith: Which is where it should be more than most places, I think.

Kimberly: Yeah, I have said this before, but I never feel as disabled as I feel in a doctor's office.

Keith: I, you know, Carissa, you mentioned earlier, or maybe Kimberly said it'd be easier if I just had a barcode and this is my Captain Kimberly, you said it a minute ago.

This is my barcode.

But I, you know, I feel like I do when I go see a new doctor, I have to explain so many things, you know, I've never, I've never had a primary care doctor that knew much of anything about my club feet, you know, and, and even specialists because I've had so many surgeries on my feet, even specialists have been baffled by my feet, you know, I, there are many, many occasions where, and I call it the come see this, but I'll go see a specialist.

They'll start looking at my feet and, you know, because of the surgeries, bones have been moved and tendons have been switched.

And so just as a, for example, if you put a tens unit on my right foot, it goes in the opposite direction that it's supposed to.

And so I call it, I call it the, hey, come look at this.

Of course, the doctors are much more professional.

I need to get a professional consult from my colleague in the other room.

And I know he runs over there or she runs over there and says, Hey, you got to check this guy out.

His foot's weird.

And so I was some, a lot of times I feel like a, a, a zoo, you know, a zoo animal, an exhibition.

Kimberly: Yeah.

Carissa: It's one of those oddities, like the old circus kind of thing, like the bearded lady or whatever.

Kimberly: Yeah, exactly.

I have, I have had that happen also.

And it is, it is uncomfortable because I mean, sometimes they'll ask like, is it okay if I bring in a colleague to, but then it's also like, well, can you say no?

Keith: Well, you can.

Carissa: Yeah.

Kimberly: And, but then you feel like, you know, your doctor's not the person you want to piss off.

Right.

Keith: So, uh, well, and I've always felt like, am I gonna, you know, maybe these people learn something from, from bringing a colleague in, maybe they'll both learn something.

So I always say yes, but, but it is that odd feeling of, you know, he saw, he or she saw something they never saw before and want to know their colleague will never, uh, you know, believe them if they don't come show it.

Um, and so, yeah, I, I've, I experienced that a whole lot when, especially when dealing with my feet.

Kimberly: Yeah.

And it's, I mean, I've mostly my care I get mostly from teaching hospitals.

So, you know, to some degree you expect that you expect that that's how things are going to be, but then it does get tiring when it, you know, cause I'll often scan many appointments or have many appointments in one day.

And if it's the third time that gets old, when does medical care, like if you ever haven't had a situation where you felt like, okay, this is, this is really working.

Which has been very productive,, but which has been a positive medical experience or experience with the medical establishment.

I know, right?

Carissa: I really can't answer that question Keith: And all you get are crickets.

Carissa: That was all the answer we need.

Keith: Uh, I will say, um, I will say, uh, I had a really, really pleasant, good experience as a teenager, um, getting my ankle foot, foot orthotics, uh, kind of, I had them throughout the years, but as a teenager, I had a surgery, um, that did not correct my foot to the way, uh, that they expected.

And so, and so I, so I needed a new type of AF ankle foot orthotic.

I used to, I've had different things throughout the years.

Um, but I will tell you that the orthotics doctor that I went to, that I was referred to, um, and I stayed with him till he retired was absolutely wonderful.

He listened to me.

Um, he didn't just come in and, and, and decide what was best for me.

Um, and I, and I'm still wearing 20 years, 20 plus years later, almost 30 years later, we won't say how old I am now.

Um, but I'm still wearing the same design.

Now it's been rebuilt and transferred to different shoes and pieces of broken.

Um, it's Theseus's ship, right?

But, um, but it's the same design that this guy gave me 30 years ago, cause it's worked so well and he listened so well.

And I've been to other orthotists, I guess is what you call them, who, who have not listened so well, um, which I think is a lot of times our experience with the disability going to see medical professionals is that they don't want to, they, they're the educated person, um, and they don't want to hear our experience.

Um, and I feel like that's my biggest barrier to medical care.

Kimberly: I think, I think you're right.

Cause I, I think as we've often talked about the medical model of disability is if, if we aren't something that can be cured, then there's no way that a doctor can look at us and say, that's a success.

So I wonder if that's in their mind.

Keith: Yeah.

You know, I have specifically run up against that, um, you know, talk about a really bad experience before the pandemic.

I went to see, um, uh, I don't, I can't think of the specialist is a different type of foot specialist.

Um, you know, and I showed them what I have, you know, the lead brace.

I'm always looking for something that works better, even though this works well.

Um, you know, technology changes.

So we went through this whole process.

He's like, I got it.

I got the best idea.

Here's this thing.

We're going to get it.

He got it.

And it absolutely didn't work.

And he was, I'm so sorry.

I'm not, you know, they're always apologetic when there's something wrong with it, but you know, it's also like, man, if you, if you would have listened to me the first time you'd have heard this.

And I, and I think I learned my most important lesson for myself so far with, with medical care is he was working from a position of wanting to correct my gait and my walk.

I wanted comfort and the ability to walk farther or stand longer.

I didn't want to look like I walked like everyone else, which was his goal.

And since I've realized that when I, whenever I see anyone about my feet, I make sure they understand my goal is not to be quote unquote normal, like the rest of the walking world.

My goal is to not be in pain because I live with chronic pain and to be able to have more endurance and stamina when I do walk.

Um, I don't care if I look funny when I walk, I want to get to where I'm going.

Kimberly: And that's dependent on your medical devices, right?

Keith: That's right.

Kimberly: Yeah.

I had, for the first, I had my, after my scans, I met with the doctor and I've never been asked this question before, but for the first time he asked me, okay, what, what is it that you want from your care?

And I'm like, dang, that's the first time that anyone has ever asked me that, you know, Carissa: that's major.

Keith: I mean, what a transformative question to ask as, as a medical professional.

Kimberly: And also that we're just gobsmacked that it was asked says a lot too, doesn't it?

I mean, shouldn't that be the first question they all ask?

Yeah.

But I guess so many people are saying, I want a cure.

Whereas if you're disabled, you, you know, you're not, you're not getting a cure.

So my answer was, I don't want to have surgery again.

That's, and he was like, okay, that's, we're going from there, you know?

So Carissa, what about you?

Carissa: Well, I'm still over here amazed that anybody asked that.

That's, that is amazing.

But Keith was talking about what, you know, he wanted just to be able to walk comfortably.

I had a similar situation with my physical therapist a couple of weeks ago.

We're working on standing and my stamina and all that stuff.

So, but we, I pulled up on the bar like I normally do.

And she looks down at my ankles and my ankles fold.

They always have.

It doesn't hurt me.

I'm fine.

But she's like, immediately, oh, we've got to readjust.

And as soon as she did, I couldn't stand there any longer, but I couldn't, I couldn't explain to them that they just ruined what I was trying to do.

So we had to sit down and have a discussion about that afterwards because they wanted me to stand typically.

Well, my feet aren't typical and they're never going to be.

Kimberly: So did they listen to you as like an expert on your own body?

Did they, did they listen and be like, oh, okay, thanks for telling me.

Or were they like, Carissa: They did, but they are still afraid.

My ankles are going to break.

I stand on my sides of my feet since I was 10.

So if they're not broken by now, they're not going to break.

So sort of not really, but we did have the conversation.

Five out of 10.

Kimberly: I understand what you're say.

Carissa: Yeah.

I'll give them a six, not even a five.

Kimberly: Oh, look, you're so nice though, Carissa.

Now, um, what about, I don't know if you all have ever been in a hospital setting.

Do you find that there are things that have you all been like, had to be hospitalized and deal with disability?

Carissa: Not since childhood.

Kimberly: Okay.

Okay.

What about you, Keith?

Keith: I have once since childhood, um, but it wasn't related to, uh, that disability.

Um, it was the beginning of my discovering I had a generalized anxiety disorder.

Um, and I was having panic attacks and, and I did feel like a pin cushion cause they, they didn't know what was causing my physical manifestation manifestation of those panic attacks.

So, um, they, they ran me through everything MRI with, uh, contrast cat scan, uh, you know, 24 hours of, of being a push pin, but I didn't really run into any barriers.

Um, because it, it didn't really involve my foot.

In fact, I would, you know, they rolled me around in a bed to the MRI.

Kimberly: That's, that's a way to travel, right?

Keith: Like via bed.

Yeah.

Yeah.

Kimberly: Like a Cleopatra's barge kind of thing.

If I could get that sort of set up, I would probably do that too.

But yeah, with me, they have a sign on the door.

They usually, uh, patient is blind, announce yourself when you go in.

Um, I request that to, to be put on.

And that, that really does seem to help.

Also, most nurses are most hospital nurse nurses I have found are just overwhelmingly great.

I mean, they, they, they really are.

They, they tell me what they're doing.

Now, that's not true.

I don't think in, in just like a doctor's office setting, but they, they tell me what they're doing.

They let me know everything that's, that's happening.

So I have had really good luck.

I will say I have, I am concerned at the cuts to the national institutes of health that are being proposed now, because I have been a patient there in the past many times and they 100% have saved my life on more than one occasion.

I mean, like I have my disease, which I've talked about on the show is rare and it's not something you see, you know, in a Bowling Green emergency room.

So, I mean, I had a doctor from the NIH call when I was admitted into the emergency room, this has been 20 or more years ago and walk them through, this is what you do.

And we just want her stabilized enough to put her on a plane to get her here.

Keith: Oh, wow.

That's great.

Kimberly: Yeah.

I wish everyone had the experience of like an NIH situation.

It, it is so great.

And all the things that they do are, are just wonderful.

You know, I assume both of you have to go to like the eye doctor, right?

Keith: That's correct.

Carissa: Yes.

Kimberly: Do you all find that that is the most eye doctors are the most crowded, cramped places ever?

Like, I obviously don't go to the eye doctor, but I go with my daughter.

It's like, what have you got in these hallways?

Keith: They're like the DMV.

I agree.

They're a little like the DMV.

It doesn't matter what time you go there, what day of the week it is.

There's 20 people in the waiting room.

But, but I never feel like I wait too long.

There's a lot of people and it's crowded, but I, but I feel like I still get through pretty quickly.

Kimberly: I do.

There's all this equipment in the halls and the, the, the exam rooms are tiny.

And I mean, it's, it's kind of like a dentist chair situation in there, you know?

Carissa: So my dentist just like that, but I was a huge building.

So I don't have that experience.

Kimberly: Really?

Carissa: Uh-huh.

Yes.

Kimberly: So when you do like eye doctors and dental situations, Carissa, being a wheelchair user, are there special things you have to do?

Carissa: I will have, not for the eye doctor, but the dentist, I have to request a certain room that I know I can back my chair in and raise up so she can clean my teeth because I don't transfer.

So there has to be enough room for my power chair.

Kimberly: Uh-huh.

Carissa: She cleaned my teeth from my chair, which is nice.

Kimberly: That is nice.

Yeah.

Yeah.

Um, I asked my dentist, uh, cause I was curious what they would do.

And apparently there is a room like in the hospital here in one of the hospitals here in town that they, it is, uh, like accessible for people in wheelchairs to get their dental care.

Um, so, I mean, that's not ideal, but in maybe there's some dentists office that have, you know, kind of like what you're talking about, but for the dentist that I go to, he said that is where he would, would, would go with his patients.

Carissa: I kind of scout out new places to make sure that I can fit.

Yeah.

And then for other procedures and stuff, I may, uh, request a certain room, like a procedural room that I know that they have a table that lowers and all that stuff.

So, but I have to make sure and tell them that when I'm making appointments.

Kimberly: So Carissa, you said you were fighting off an upper respiratory bug.

Did you have to have a, like a chest X-ray?

Carissa: No, not this time.

Kimberly: Not this time.

Yeah.

Like, how would that get done in a, using a power chair?

How would that get, I mean, is it,

Carissa: I would definitely have to be transferred in the chair and be removed.

Kimberly: Really?

Uh-huh.

Okay.

Okay.

And I mean, do, do they have places that, that can do that?

Cause to me the, well, I guess they can, I don't know, it seems uncomfortable and you have to kind of contort, you know, to get a respiratory.

Carissa: Yeah, that I'll tell you something that's worse is a mammogram.

Kimberly: Really?

Yeah.

I bet.

Carissa: My mammogram usually involves three other people.

None that are related to me.

Cause they're trying to contort me into the machine from my power chair.

The machine lowers, but it lowers on my joystick that doesn't move.

So they're trying to have to shove me forward into the machine and all that stuff.

It's just a nightmare.

Kimberly: I bet.

I bet.

Keith: I applaud you.

Yeah, I know.

Right.

Kimberly: I mean, I applaud you for even doing it, Carissa.

I, I really do because I just don't.

And I recently read something that said that a lot of an article that said that disabled people are overwhelmingly diagnosed with, and they're diagnosed with cancers at a later stage because they aren't getting screenings.

Carissa: I'll be honest with you.

I skipped it last year.

I'm going later, but I, because it's so difficult on me, I, I've, I've skipped a couple of exams that way because who has the time or the energy?

And that's horrible.

We all need our healthcare.

Keith: Well, but I, you know, that's, that's, that I think that's part of this conversation is the inaccessibility of healthcare services obviously has had a personal effect on, I would venture to guess all three of us.

I know, Carissa, you just said, um, but you know, and that makes sense that then that statistically people with disabilities are getting diagnosed later or, and, and also, you know, elephant in the room, people with disabilities have lower lifespans.

Uh, and, and, you know, I think that has something to do with the inaccessibility of that, the healthcare system.

Carissa: I would definitely agree.

Yeah.

Kimberly: Were you all terrified during the pandemic when they started talking about vulnerable populations and comorbidities and the whole making decisions about who would get ventilators and stuff?

Carissa. Yes, that was nervous.

Kimberly: Yeah, me too.

That was extremely nerve wracking for me.

Keith: I, um, and, and on top of all of that, um, you know, so I still had to show up to work in person, um, uh, as a quote essential employee.

Um, so, you know, in the very beginning of, of that pandemic, when we really didn't know much about COVID-19 and people are dying and they're talking about vulnerable populations and all this stuff, and I'm still having to go to work.

Um, I was doing all of our primary because I was already out, and I didn't, you know, my wife and child were primarily home with work and school.

I was doing all the shopping.

I was going to all the public places those first couple of months, um, until, uh, you know, we kind of got a better picture.

And I honestly, I, you know, sometimes I wonder if I have, uh, a little PTSD from it, um, because it was so nerve wracking as someone with comorbidities, scary times.

Kimberly: That does sound scary.

And you have, you know, like you said, you, we, you have a wife and child and all, all three of us, we kind of met through the parenting book, a Celebration of family Stories of Parents with Disabilities.

The link to buy is on the, in the show notes for the podcast.

If you'd like to give that a look, we met through that talking about our parenting journey.

And I mean, we're dealing with all, all this stuff, plus all our children's healthcare stuff too.

Right.

Keith: Yeah.

Kimberly: And sometimes, sometimes I feel the, why you blind person, why did you decide to have children?

Carissa: You know, I thought about that in the book.

So look, read the book.

That's right.

Keith: Yeah.

I mean, and I was going to say probably more so for the two of you taking your children into, um, those settings than for me, just because our society has less expectations on fathers, you know, the mother is still, uh, widely considered the caregiver of the family.

Um, so I can imagine that you all have faced more scrutiny than I have.

Uh, in those situations as a male. Carissa: You know, Kimberly, I will give props to my son's pediatrician.

He has disabilities himself, but we've gotten somebody new a few months back and she's been wonderful.

She actually listens to me.

She listens to will every time we go, they make sure that, that we have the larger room and I don't even have to ask.

That is amazing.

So you were asking for positive stories with healthcare.

There you go.

Kimberly: Yes, that is, that is good.

That is a positive story.

Yeah.

And I mean, I, some of the doctors have been great.

A lot of the doctors have been great.

A lot of the doctors have been judgy to me.

Uh, so, you know, I won't, I won't say it's been perfect, but then what is when you're talking about healthcare, right?

Carissa: I had one doctor several years ago.

He kept writing that I'm a paraplegic in my chart.

I'm not a paraplegic for those of you that don't, I have cerebral palsy.

I finally had to switch doctors.

I couldn't stand it.

He didn't even get my diagnosis right.

Keith: Yeah, that's pretty bad.

Uh huh.

Kimberly: Carissa, since you mentioned that, why don't we define our terms?

Can you tell us what is the difference?

What are the differences are? Carissa: Between cerebral palsy and paraplegia? Kimberly: Yes.

And quadriplegia, all those things.

Carissa: Yeah.

So cerebral palsy does have, they, they do use the, I'm a quadriplegic person with cerebral palsy.

What that means is it affects all four of my limbs.

Now, if you're just going to say that I'm a quadriplegic, that means I can't feel from a certain part of my spinal cord down or I'm not able to move, it affects limbs in that way.

I have sensation and that's what he kept getting wrong.

He kept saying that I didn't after I would even tell him.

So that's very different.

Kimberly: Right.

Right.

And you don't want to go to that doctor.

You don't want that doctor to show up if you're in like an accident, having your diagnosis wrong and him having to treat you without you being conscious to correct him, right?

Carissa: That's, that would be a nightmare.

Kimberly: No, that's a very dangerous situation to be in.

Carissa: So I just felt like he thought, what's the difference?

You're in a wheelchair.

There's a big difference, dude.

Kimberly: Yeah.

Yeah.

Um, and that he didn't care enough to, Carissa: You know, no, he knew more than I did.

That big medical degree was on the wall.

Yeah.

Kimberly: I had a, I have a doctor who has said to me when I said I had Von Hippel and Dow and I wait and he says, yes, yes, I have a couple of patients with that.

I'm like, oh, you do not.

I am one of like two, three people in Kentucky.

You do not have several patients.

Carissa: So I think I talk about in the book, my primary care doctor, when I first started trying to get pregnant, he had a brother with cerebral palsy and he was like, he asked me if I wanted my birth control and I said, no.

And he said, why?

And I said, we're thinking of starting with him.

Oh, you don't want to do that.

Oh my God.

Uh, my, uh, brother has cerebral palsy and he has, you know, all this, that and the other and cerebral palsy.

Well, first of all, it wasn't his decision to make.

Let's make that perfectly clear.

Kimberly: Right.

Carissa: But second of all, cerebral palsy is like a big umbrella term.

It can affect so many different people in so many different ways.

So I'm not your brother, dude.

You don't know me.

Kimberly: Yeah.

It's that whole thing.

I know one person who's blind.

So I know all about blindness because you're all the same.

Yeah.

Yeah.

Right.

So any last thoughts, any, before we wrap up here, I think this has been a good conversation.

Any last thoughts about, uh, healthcare in America?

Keith: We all just laugh uncontrollably.

I know.

Carissa: Right.

Kimberly: I'm still trying to talk to my husband and then moving back home.

He's British.

You know, they're having their own problems there, but I, is it, is it better?

Does what does he say?

Carissa: Uh, he says it's not any better.

It's not any better.

Kimberly: That's, that's what I'm hearing lately.

Keith: Also, I think, um, you know, uh, my, the only thing that I really have to say is if there are medical professionals listening to this podcast, um, I think that, that question that Kimberly got is super important.

Um, you know, what is most important to you?

What do you want to get out of this care?

Um, because it might not be what you think that person wants.

Um, you know, ask, don't assume.

Carissa: And anybody else, you know, just keep speaking up.

Your medical professionals may have degree and experience, but you know your body and you know what you're able to do and what you don't.

So don't let them take over.

Uh, keep speaking up for yourself.

Kimberly: Yeah.

And that we have to be advocates for ourselves all the time in the, in healthcare.

It is unfortunate.

Um, and we're seeing people when we're at our most vulnerable, we're scared.

We don't feel good.

We're sick, whatever.

We're, you know, we just don't feel like advocating at the time.

So I don't know.

Maybe some of our listeners, if, uh, you know, if you're going in for a mammogram, maybe, and you, you know, you, you feel fine.

It's just, it's just a regular screening.

Maybe say, Hey, how would this work for someone who's in a wheelchair?

And maybe if we all bring these things up, then, you know, change over time, we can hope, right?

That's all we got.

Keith: Let's, let's keep asking the hard questions, right?

That shouldn't be hard.

Kimberly: Yeah.

So maybe if we all, all keep doing that sort of thing, things will change.

Well, Keith and Carissa, thanks for joining us today.

As always, it's a great to hear you on the podcast.

You both bring so much insight.

I appreciate it.

And we will hopefully be back in July to discuss another Cal conversation topic.

(Music playing)

Kimberly: Demand and disrupt is a production of the Advocato Press with generous support from the center for accessible living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song change.

Don't forget to follow or subscribe so you never miss an episode.

And please consider leaving a review.

You can find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks everyone.

To learn even more about Stephanie Levin, feel free to email her at levins@rowan.edu or visit her website at stephanieanlevin.com

Visit the article Sam and Kimberly discuss at the beginning of the show at https://www.americanbar.org/groups/diversity/disabilityrights/news/why-disabled-people-self-accommodate/

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript:

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Sam: Welcome one and all to Demand and Disrupt, a disability podcast.

We are so pleased today to be joined by a lovely lady named Stephanie Levin.

She is a newly published author documenting her recent disability and vision loss in a book entitled, Picking Up the Pieces, Finding My Way as a Visually Impaired Woman in Higher Education.

So we will be chatting with Stephanie in mere, mere moments.

But right now I'm pleased to bring in my partner, Ms. Kimberly Parsley.

Kimberly, how are you?

Kimberly: I'm doing very well, Sam.

Thank you.

I listened to your interview with Stephanie and a wonderful job.

Lots, lots of talking points there.

I know we can.

Most of us listening to this podcast know what that's like at the beginning of your disability journey.

Come into terms with that.

It's tough, isn't it?

Sam: Yeah, it is tough.

And, you know, I've been blind.

Well, the first time we discovered my blindness, it was seven months old.

But this lady, Stephanie, she first experienced vision loss at the age of 20, which was not that long ago.

So, you know, it was new terrain for her while she was going to college.

But it didn't didn't stop her from pursuing her goals and and aspirations.

But yes, those in our audience who are in the early stages of their disability, whatever that disability may be, they ought to be able to identify with Stephanie for sure.

Kimberly: Absolutely, absolutely.

It's it's it's tough.

And, you know, sometimes sometimes you go through a thing and you think you're done and, you know, disability creeps up again.

It's it's not always a straight line, is it?

Sam: Yeah.

Even when you think maybe it's over and done.

Sometimes it creeps back or or sometimes other challenges, other disabilities present themselves.

Kimberly: Yeah.

You know, what is it they say about disability?

It's the one minority that we could all join at any time.

Sam: Oh, I've never heard that, but I like it.

Kimberly: Yeah, it's true.

Sam: And if we if we don't have a disability, chances are we know somebody who does.

Kimberly: Or or we could.

I mean, you know,

Sam: Yeah, maybe that's true.

Maybe we have a disability and don't know about it yet.

Kimberly: Yeah.

You know, things can happen.

So, yeah, it's interesting to read people's initial their early stages of that of that journey.

And hers was in higher education and fighting for for what she needed and coming to terms with needing those accommodations.

Sam: She's a she's a Jersey girl.

I guess, as they say at their joys, a girl, they always have their unique ways of saying things.

(Laughter)

Sam: But anyhow, yeah, as we mentioned, I believe, you know, what's history?

My first interview from Jersey and maybe not my last.

But, you know, she spent her life in the in the Philly area.

And, you know, we had a nice conversation off the air about Philly cheesesteak sandwiches because I am a big fan.

Kimberly: Oh, are you?

Wow.

Sam: Philly cheesesteak sandwiches.

(Laghter)

Sam: And I don't know about you, Kimberly, but I definitely love them.

And they say that you haven't had a Philly cheesesteak sandwich done right until you've had one in Philly, which is that right?

Kimberly: Is that right?

Not me, me either.

Sam: So, yeah, well, I had, you know, I had eye treatments and stuff in the Wills Eye Hospital in Philadelphia when I was real little.

But at that point, Kimberly, I was I was too young to partake in a Philly cheesesteak sandwich.

Kimberly: Yeah, I don't think you want a seven month old having a Philly cheesesteak.

(Laughter)

Sam: No, no, absolutely not.

That could be bad.

Kimberly: It could go badly.

Sam: Yes.

Yes.

Kimberly: And, you know, I was looking up an article after listening to after listening to your interview with Stephanie.

I found an article and I shared that with you.

It was by Katherine A. McFarland.

Do you remember the name of the title of that article?

Sam: Oh, yes.

It was obviously when the system fails, when the system fails, how people self accommodate.

Kimberly: Right.

Right.

It was about disabled people self accommodating.

And yes, it was interesting.

So it's talking about kind of just a brief overview.

And I will I will link to this in the show notes for people linked to this article.

And I believe it's from the American Bar.

It's American.

Sam: Yeah, the ABA American Bar Association.

Kimberly: So Sam's laughing now because the Garth Brooks song just came in his head.

Sam: So I did pop in the American Honky Tonk Bar Association.

For those of you that don't know.

Yeah, you definitely ought to go back.

And if you need a good laugh today, listen to that song.

Kimberly: I could tell it was in your head, Sam.

And this article is interesting about how people self accommodate and and sort of why and that doing so you know, this article says like doing so is an example of like a system breakdown.

And I found that interesting.

I don't know about you, Sam, but I definitely have self accommodated.

I have bought things I needed for a job rather than ask for them.

Sam: And let the employer make the purchase.

Yeah, I think I think we all have to to a certain extent, but the tie in here, folks, to the the chat I had with Stephanie is that, you know, she started grad school shortly after her partial vision loss, and she refused any accommodations that she was entitled to because she worried that if she accepted accommodations, it would sort of make her look bad and there'd be a stigma there.

And that was, you know, I never refused any accommodations when I was going to college, Kimberly.

I just looked at it like, you know, that was a way to level the playing field.

And, you know, it did require I did need documentation, which I know this this lady, this professor that's noted in the article, she stated that, you know, the law technically doesn't require a whole bunch of documentation about your your disability.

But so I do remember having to, you know, present that.

But but as far as the accommodations, I, you know, I always took advantage of all that that I was entitled to when I was at the mighty Western Kentucky University.

Did you, Kimberly?

Kimberly: Well, yeah, because I mean, when I was especially in high school and college was in the 90s and it wasn't like there was a a buffet of accommodations being offered at that time.

It was, you know, fighting and struggling for every single thing I got, you know, for the most part.

So, I mean, it was trips to school boards and things demanding access.

And heck, I mean, some people have gone through this.

And just to be able to go to school at a mainstream school.

Sam: Well, this is this is very true.

And it is, you know, I did read in the article that, you know, there is pressure on students to negotiate their own accommodations.

And I can sort of relate to that.

I was taught from a young age the importance of self advocacy, you know, letting people know and helping professors understand what it is you need.

Kimberly: That is true.

That is true.

And especially when you're at the college age, you do have they do like, you know, there's a paper you take to your professor to let them know that, you know, of course, it's not like you and I could hide our needs.

Sam: Right.

Yeah, it's pretty obvious when somebody walks through a room with a white paper.

Yeah, they're going to have a, you know, vision loss to an extent.

Kimberly: Exactly.

So so it's not like we could could hide it.

So, I mean, it was the first day you go to the professor, you show them your, you know, your form and what you need.

You schedule a discussion or or whatever.

Sam: So, yeah, you can sort of talk about it.

Kimberly: Yeah.

Sam: But yeah, basically, the paper just sort of outlines all the accommodations that you might need or, you know, you're entitled to write.

Yeah.

And, you know, it's just a blanket letter.

Kimberly: And I do think it's important.

But I also think we need to teach people how to advocate for themselves rather than just expecting students to do that.

I think teaching them how is very important.

Sam: Yeah, there's a skill there.

And, you know, part of it is, like you said, knowing what to say and when to say it, how to say it.

And that can be easier said.

And some of that you just sort of learn as you go.

You know, it's one of those things you get better at it.

They should, you know, the more you do it.

But there could be a little, you know, a greater degree of education along those lines of of how to take up for yourself when it's needed.

Kimberly: Yeah.

And, you know, I find I didn't I don't think I had a problem advocating for myself in terms of what education, because I knew that the law was on my side.

Sam: Right.

Kimberly: But in where I really was more reticent about doing that was in the field of employment, because no one has to hire you.

And I just kind of wanted to come in, prove I could do the job and wasn't going to be any trouble.

Sam: Right.

And, you know, like you said, you you bought stuff to use on the job at certain times for yourself when technically the, you know, it was the employers.

Sort of obligation to provide that assistive yes, device or technology for you if they write, they wanted to hire you.

Kimberly: And they and they might well have done so, but I probably would have.

But I just didn't I didn't feel brave enough, I guess, to ask for that.

Sam: So you just bought it for yourself.

You know, it's one of those things you like.

My motto has always been you find the way to do what you got to do.

And so that's what you were doing.

Kimberly: Yeah, yeah.

But it's an interesting article.

I encourage people to follow that link in the show notes and read the article and, you know, ask yourself, have you self accommodated?

When maybe there were there was another way.

Sam: So and if you'll send us your thoughts on that article, you just might get a shout out on our next episode.

Kimberly: Like we're going to shout out to Jerry Wheatley, Jerry Wheatley.

Hey, Jerry.

Yes, Jerry sends us such supportive emails about our my interview with Dr. Patrick Kitzman about how he's been in the disability community in Kentucky for a lot of years and doing a lot of really creative, unique work.

So and Jerry was pleased that some attention got put on Patrick's work.

Sam: So Jerry's our number one fan.

Kimberly: He really is.

He is our number one fan.

We not everyone out there is going to be able to beat Jerry.

But hey, send us, you know, he leads by example.

Sam: He leads by example.

And you can you can tie Jerry for our number one fan if you want to.

Kimberly: There you go.

You can't beat it, but you can tie.

There you go.

Exactly.

So send us an email with your thoughts to demandanddisrupt@gmail.com.

And we will give you a shout out on the air.

And hey, if you've got a story idea, something like that, we would love to hear it.

Love your questions, comments, suggestions, all that fun stuff.

All that fun stuff.

Kimberly: Bring them on, bring them on.

We want to hear it.

And speaking of things I want to hear, Sam, you want to throw it to your interview?

Sam: Absolutely.

Let's not keep her waiting any longer.

And we will get our side set on Miss Stephanie Levin.

Kimberly: All right.

Can't wait.

Thanks, y'all.

(Music playing)

Sam: We are always pleased to promote authors here on the demand and disrupt.

And we have a brand new one here.

On our hands today, we are thrilled to welcome a brand new author.

Like we said, she is also a fairly recently visually impaired individual.

And we will get that story here momentarily.

But anyhow, her book is entitled Picking Up the Pieces, Finding My Way as a Visually Impaired Woman in Higher Education.

She currently serves as a management assistant in the School of Osteopathic Medicine at Rowan University.

So we're actually making history on two ends here.

Not only is this her very first podcast, but it's my very first, my very first conversation via Zoom with anybody from New Jersey.

So we're sort of killing two birds with one stone.

But I am pleased to welcome to the podcast today from Stratford, New Jersey, direct via Zoom, none other than Miss Stephanie Levin.

(Clapping)

Stephanie: Hi, Sam.

I'm very happy to be here.

Thank you so much for having me today.

This is such a wonderful experience.

Sam: Well, I tell you, we're equally excited to have you here.

So glad that you found us.

Now, Stratford is South Jersey.

And you were telling me that you have basically lived in the greater Philadelphia area your entire life.

Now, I've got a slight history with Philly.

Now, it dates back, you know, before I was able to sort of process.

And I was just a baby, but I'm actually totally blind.

And I actually went to several doctor's appointments at the at the Wills Eye Hospital there, the Wills Eye Hospital in Philadelphia.

Are you familiar with that?

Stephanie: Yes, Wheels Eye was where I had my two surgeries, actually.

And they're really incredible people.

Sam: They are.

Stephanie: It's really, yeah.

And they have done so much for me.

And I'll talk a little bit more about my surgeries and my story.

Sam: Yeah, sure.

Stephanie: But yeah, it's definitely no Will's Eye.

And, you know, so if you want, I can definitely get into my story and how I became visually impaired.

Sam: Yeah, we'll get into that here very, very shortly.

But yes, they attempted to save my vision.

Unfortunately, they were unable to do so, but they were able to prevent the cancer from spreading to other parts of the body.

So they were definitely a godsend to me in that regard.

I was only seven months old when I was diagnosed with retinoblastoma there.

Jerry Shields was my doctor, Stephanie.

And I think he's been retired for quite a while now.

Stephanie: Oh, really?

Sam: OK. You probably don't know Jerry Shields, but anyhow, it was a small world.

You know, we got up there.

I was just a baby, of course.

But he started talking to my parents and he goes, he goes, what part of Henderson are you from?

Because that's where we're from, Henderson, Kentucky.

It turns out he was from Union County, which is right next door to Henderson County.

So here my parents were in Philly, like 12 hours away from my hometown.

And, you know, my doctor was somebody who was actually from this area, which was, you know, quite a small world indeed.

But Jerry Shields has, I think, been retired, like I said, for a number of years.

So you wouldn't have had the pleasure of meeting him.

But anyhow, Stephanie, it's great to have you here.

Like I said, we'll discuss, you know, your vision complications here in a bit.

But I know that you weren't faced with these until the age of 20, Stephanie.

So give me a little bit about your background prior to that.

Like you said, you were born and raised in that area, essentially.

What was your school life like growing up?

What were some of the activities and subjects that interested you and helped you to pass the time as a child?

Stephanie: OK, so yeah, so I was born on June 11, 1992.

I am currently 32 years old.

Sam: See, I love it. You're not ashamed of your age.

Stephanie: No, no, not at all.

No, I think age is just a number.

And honestly, I'm maybe 32, but I feel like I'm 21.

Sam: How about that?

You know, you feel young.

That's the most important thing.

Stephanie: Yeah, exactly.

Age is just a number.

But yeah, I was born in Voorhees, New Jersey, and I lived in Sicklerville, New Jersey, still in South Jersey until I was about 13 years old.

I was a typical child.

I went to Catholic school my whole life from kindergarten to eighth grade.

I had a lot of friends.

I had very loving parents.

I had a grandmother who I was very, very close with.

I did gymnastics when I was a little girl.

I took music lessons.

I actually was a singer.

I still like to sing in my spare time.

I learned to play the piano.

Sam: If you want you to sing a few bars for us before we get off here.

Stephanie: Oh, gosh.

Oh, yeah.

Sam: You may not be warmed up, but that's okay.

Stephanie: Oh, gosh, that's so funny.

But yeah, I did gymnastics and I took music lessons.

I was just a really happy child.

Sam: All right, Stephanie.

Talk, if you would, dear, about the nature of your college experience.

You did do your undergrad at Rowan too, correct?

Stephanie: No.

So I did my undergrad at Stockton University.

I majored.

Yeah, yeah, I loved it there.

So I had visited some colleges and, you know, as you do when you're looking, you know, to take that next step and go to different colleges.

Sam: Sure

Stephanie: So I visited the campus and I remember I stepped on the campus and I'm like, okay, this is where I'm meant to be.

And it was just a no-brainer.

So I decided to pursue business management as my major with a minor in theater studies and a concentration in acting as an undergrad.

And I was just...

Sam: Interesting cobination

Stephanie: Yeah, so I have a musical background and I also always loved theater.

So I really took that opportunity to explore my love of theater.

Sam: Now, was that pretty close to home, Stockton?

Stephanie: Yes, it was 40 minutes away I commuted.

So it was really nice.

I had friends who lived on campus.

So that was a cool experience and I could, you know, when I...

You know, but I'm the type of person who kind of likes her space.

So it was nice to be able to like visit them and then go home.

But it was also just a really cool experience.

I loved learning and I just remember being super excited about it.

And, you know, I really started out very fearless.

I was ready to, you know, learn all I could about business and, you know...

Sam: Stephanie Levin was ready to conquer the world.

Stephanie: Yes, Stephanie Levin was.

Sam: Which will still happen.

Stephanie: Yeah, and I just remember being like, oh, I'm just so excited.

But that sort of all changed when I was 20.

Sam: Right.

Stephanie: And that's where all of this really began, so...

Sam: You were a sophomore at that time, I guess, right?

Stephanie: It was the summer of, you know, going into my third year.

So I had just finished up my second year of college.

Sam: Yes, and that's when you started experiencing vision complications.

Stephanie: Yes, absolutely.

So I have a condition called lattice degeneration.

That is when the perimeter of my eye has little holes in it.

It looks like, I would say, like a lattice fence.

It's not supposed to look like that, but in my case it is. 10% of the population is, in fact, born with this.

So this was a genetic condition.

I am also very, very nearsighted.

And that is something called myopia.

So having those two conditions, really, that's where it all began.

And it was August 2012 when, in my right eye, I started to see like a big black veil or curtain in my vision.

And I was like, I was confused.

I'm like, what is this?

Like, I've never seen this before.

Oh, maybe it's a sunspot.

Maybe it's just like, you know, I look into the sun and it's just a black, you know, dot in my vision or curtain it.

You know, no big deal.

But it wasn't going away.

And I let it go for a couple of days.

And I was like, hmm, this is interesting.

It's getting annoying.

Sam: You're like, I'm not supposed to see a black veil.

That's not right.

Stephanie: No, no.

But at the time, I didn't know it.

I was young.

I didn't know.

I never even heard of Retinal detachment.

So I had told my mom about it.

And I said, I'm seeing this big black veil.

Like, what's going on?

So we made an emergency eye doctor appointment for me.

This was, I want to say, it was a Thursday that this, no, not a Thursday, but it was, I'm forgetting day exactly.

Sam: You've slept a night or two since then haven't you, Steph?

Stephanie: But it's been a while.

But yeah, we had an emergency eye doctor appointment set up.

And I wasn't seeing my original eye position that I normally see as she was out of the office that day.

So I saw someone else.

And I was sitting there.

And I was like, you know, when we're done with this, you'll go home.

You rest your eyes.

It'll be fine.

And we didn't really know what to expect.

So I had the eye examination.

They dilated me.

And the eye doctor said, yeah, she has a slight detached retina.

And we were shocked.

And I remember, my mom was like, well, what's going to happen?

Does she need eye drops?

And they said, no, she needs emergency surgery.

Because if you don't get her emergency surgery, she's going to go blind.

And that's when I started crying.

My mom started crying.

And I had to be rushed to Mid-Atlantic Retina in Cherry Hill.

And I wore glasses at the time.

And I didn't bring my glasses with me.

So I kept my contacts out.

But everything was very blurry.

And I didn't know what was going on.

And I was scared.

I was crying.

I was going to an office in a retina specialist I had never met before in my life.

And I remember going into the room.

And he examined me.

And he said, all right, you have lattice in the left eye and the right.

You have a detached retina.

And what we're going to do is we're going to put a scleral buckle implant in your right eye.

Sclal buckle, OK. Yeah.

It's like a piece of plastic, essentially, that flattens the retina.

And it's often used for retinal detachments.

And they lasered my left eye.

Because had we not, I would have had a detachment in the left eye.

So we went through that.

And first, I was told I was going to have the implant.

And I was going to have something called a vitrectomy, where I have a gas bubble in my eye.

And that also flattens the retina and keeps it in place.

It was August 10th when I had my first surgery, 2012.

I had a scleral buckle.

But I didn't have the vitrectomy.

And I will be honest with you, that pain was the worst pain I have ever experienced at that time.

I was on a lot of eye drops.

I had fluid leaking out of my eye.

I had to wear this plastic covering at night because I couldn't sleep on it.

I couldn't move a certain way.

I had stitches.

It was really, really difficult.

It was a very difficult time in my life.

Sam: Bless your heart.

Stephanie: Yeah, I always say it could always be worse.

But it was rough.

It was rough to be honest.

Sam: And a lot was happening to you in a short amount of time there.

Stephanie: So I had my surgery.

I was cleared to go back to school.

But prior to that, I was really depressed.

I got very depressed and angry about my situation.

Sam: Because here you are 20 years old.

All you'd ever known was full vision.

So this was all new territory for you.

Stephanie: It was.

And I did not have any vision loss this time around, the first time.

But I did the second time.

Now, 2014, I had scar tissue that built up around my implants.

And essentially what happened was the scar tissue kind of pulled on the implant.

And I had a tear.

And this was around Christmas time.

And I remember the night that it sort of happened.

I'm like, something doesn't feel right in my eye.

My eye just felt weird.

And it just didn't look right.

And I'm like, OK. So again, I go back to the eye doctor.

Ironically, I see the same person who caught my previous detachment.

I'm told I have a tear.

And at this point, I'm furious because I'm like, I cannot believe I'm back in this place.

I cannot believe that this happened to me again.

And we went over to Mid-Atlantic Retina this time in May's Landing.

It's a very nice office.

And I had it lasered.

It was uncomfortable.

It felt scratchy.

But the thing of it is that for me, the laser did not hold.

So on Christmas Eve, I want to say, it's detached.

And that was one of the worst Christmases I ever had.

Because if not the worst.

Because at the time, also, my grandmother, her cancer had come back.

And we didn't know how much more time we have with her.

And I had this issue.

And I was just so nervous.

And I thought, OK, it can't be happening again.

It can't be happening.

But it was happening again.

And I finally went to my parents.

And I said, you know what?

There's a problem here.

There's something very wrong here.

So it was December 26, 2014.

We went over to Mid-Atlantic Retina again in the Cherry Hill office.

And I didn't see my original retina specialist.

I had seen somebody else.

And he said, unfortunately, it's detaching.

And she needs surgery.

Sam: So anothe! surgery. Goodness, that's like a reverse Santa Claus, isn't it?

Stephanie: It's like Merry Christmas, you know?

Sam: Total opposite of Merry Christmas.

Stephanie: Yeah, it was a lot.

And my parents had to pay out of pocket.

Sam: For the surgery?

Stephanie: Yeah, for the surgery.

Because no one was really there to authorize it, authorize the insurance.

And so there was that.

And I wound up at Wills Eye in Philly.

I had a vitrectomy this time.

And I had to have a gas bubble put in my eye.

I had to lay on my side for five days to make sure that the bubble was locked in place.

I wanted to go back to school because I knew I'd be graduating that semester.

Sam: Also, your last semester was up ahead.

Stephanie: Yeah, and I was set to graduate.

I was going to, but I couldn't because I had to take a semester off.

And I had this green bracelet.

And a lot of people who had retinal detachments in this community understand the green bracelet, that basically tells you that you can't go on a plane or anything like that.

Because if you go on a plane with this bubble, your eye could explode.

So it's basically you're walking around with this green bracelet.

And it's like, hey, I have a problem.

I have an issue.

And it's hard.

And so I had that.

And like I said, I had to take a semester off from school.

And at the time, my grandmother passed away.

And my grandpa, my dad's father passed away 16 hours prior.

So he had passed away on the 23rd.

And my grandmother passed away on the 24th of February.

Sam: So also just back to back days. That's crazy.

Stephanie: Yeah, that's how it goes sometimes.

You know, it comes in threes and I just was like, well, what's why?

Like it was it was just a lot to handle at the time.

But, you know, I wanted to I had this desire to prove myself that like, you know, I'm still me.

I'm still Stephanie.

Sam: I'm still going to conquer the world.

Stephanie: That's it.

And for me, I was very hard on myself looking back.

But all I ever knew was, you know, you fall down, you keep getting back up.

That's all I knew.

But this time was very, very different because I got up.

I fell down, sure.

But I stumbled and stumbled and stumbled.

Sam: And you'd never fallen quite that hard.

Stephanie: Not to that extent, to be honest.

Sam: Right.

So that was that was really tough.

And so you had to take a semester off.

Were you able to go back that fall and finish?

Stephanie: So I actually ended up finishing in the summer.

Yeah.

And I walked in in the winter.

So in December, it was a lovely ceremony.

Actually, it was nicer because it was smaller.

And, you know, but I still missed my grandma because she wanted so badly to see me graduate.

And she was really unable to do so.

And that was very it was a hard pill to swallow.

But then I went on to get my obtain my MBA, my Master of Business Administration at Stockton.

But this time was very different because so I had a lot of mental health issues surrounding my experiences.

I had experienced anxiety.

Like, I've always been an anxious person, but this was a different level of anxiety.

I had depression.

I also had post-traumatic stress disorder.

And I really struggled with that for a very, very long time.

Sam: Sure.

So your vision loss, before we press on with that, is that so you're blind in one eye?

Or is it just partial vision loss in one eye?

Stephanie: Partial vision loss.

I am visually impaired.

I have so it's hard to explain in the book.

I kind of give you like an illustration as to what it looks like.

But I have a little bit of missing vision in the upper part of my eye.

It flashes at the lower part of my eye, and in the corner, like the left corner of my right eye, I have missing vision.

Sam: So it's just the right eye?

Stephanie: It's just the right eye.

In the left eye, I do have floaters because I'm severely nearsighted.

But I'm also prone to a condition called posterior vitreous detachment, where the vitreous pulls away from the retina.

And there's really nothing you can do about that.

That happens in elderly people.

And that tends to happen as you get older.

And essentially, you just watch for tears and detachments with that because you can still get tears from it.

And that's fine.

Then they laser it.

But I have a small cataract in the left eye.

I have actually had cataract surgery in the right eye.

I also had a membrane, which usually forms after cataract surgery in younger people.

And they had that laser.

So it's been a heck of a journey with my eyes.

But I am grateful for it.

Sam: Yeah, you're stronger because of it.

And like you said, it could have been a lot worse.

And you were able to go on.

You stay at Stockton there.

Get your MBA.

And then I'm guessing that brings us to your current career endeavors at Rowan University, where you are now.

Stephanie: Right.

So I knew that my story, and I often talk about this in my book, I did experience ableism.

I experienced people judging me afterwards and how my competence or my capabilities was challenged at that time.

So it was not an easy road.

I experienced this within higher education.

But I've also experienced this in society.

And I felt that at the time, it was a very male-dominated field.

So I felt like being a business major, I had to overcompensate.

I had to work very hard.

And I constantly felt like I had to prove myself.

Sam: Yeah, there was like a stigma that you had to overcome, wasn't there?

Stephanie: Yeah, there was a stigma.

There was definitely a stigma that had to be overcome.

And it was difficult.

And that took a toll on me because I always worked hard, but I kind of saw it in a different lens in the sense that, all right, well, now I've really got to prove my capabilities.

And the fact that I'm meant to be here.

And I always knew that I wanted to tell my story.

I always wanted to, definitely.

And I found that I didn't know how I was going to do it, but I knew I wanted to.

And I wanted to write a book about it.

So fast forward to 2022.

Sam: That's a few years ago.

Stephanie: Yeah, a couple, three years ago, I was accepted into Rowell University's Doctorate of Educational Leadership program.

And I remember sitting in this orientation.

And I remember my professor who I, you know, he's a wonderful person.

And he had said, you know, so tell me what is a problem of practice within your sphere of influence?

And problems of practice are essentially problems that are happening within your context, your institution.

It's something that you can change.

And I remember thinking, like, what is the problem of practice?

Like, what, you know, what, you know, what can I do?

And it just, it was like a light bulb moment.

I'm like, oh my, oh my gosh, I can talk about my experiences.

This is a problem.

I'm sure if I have experiences, other people have.

Sam: No doubt.

Stephanie: And I found myself looking at different problems of practice.

I looked at mental health and in medical education.

I looked at neurodiversity in medical education.

But I wanted to think bigger, too.

And I kept looking at different components.

As a doctoral candidate, my interests include feminist studies and disability.

And the realm of disability just kept calling my name.

And I really knew that that was the interest I wanted to pursue.

So I began to learn more and more about ableism.

And I began to learn more about microaggressions and how people, you know, and institutions of higher education where perfection is really valued.

And, you know, when we look, think about ableism, we talk about as a valued human state.

And it was interesting to me.

And I had taken a policy inquiry and analysis course.

And I want to say 2000, yes, 2023.

Sam: Policy inquiry and analysis.

That's fascinating.

Stephanie: It's a fascinating class.

Sam: That sounds like it's well above my pay grade.

Oh, goodness.

Stephanie: Oh, no.

So I took this course and I looked at the Americans with Disabilities Act of 1990 and its amendments.

And, you know, how students really have a hard time self-identifying as having a disability.

And that's really within the literature.

Lots of students with disabilities often have a hard time.

Sam: They just try to mask it, more or less.

And they have a hard time admitting it that they have one.

Stephanie: Yes.

Yes, exactly.

Because they're fearful of the stigma.

And there are plenty of other reasons why.

But I really focused on the stigma aspect of it.

So I was like, you know, I wanted to really examine that.

And it resonated with me because I did not want to self-identify.

I could have had, you know, if I had gone back after the second time, you know, they would have provided my, Stockton would have provided me counselor and aid.

I did not want to take that because I didn't want to be viewed as weak.

And honestly, as silly as that sounds, that, you know, I think if you need accommodations, you should take them.

And there's no shame in taking them.

Sam: But you refused them at the time.

Stephanie: I did because I didn't want to be viewed as weak.

And I didn't want to be viewed differently.

And that's where the stigma comes into play.

And landscapes, you know, as far as landscapes of institutions and higher education, it's just, you know, it's a very, very long story.

We could go on and on about it.

But I didn't want to self-identify.

So there was an assignment in my class.

And basically, we could write an opinion piece about our findings and disseminate them through, you know, our opinion piece.

And I went to my professor and I said, I want to do this.

Let's do this.

And she's like, OK, yeah, let's do it.

So we went back and forth and we wrote it and everything.

And she'd make revisions.

And I sent it to a not-for-profit newsroom called EdSurge.

And they took it.

They liked it.

And they accepted it.

I worked with an editor.

And my story went out on March 1st, 2024.

Sam: Oh, so this was like a smaller version of your ultimate book?

Stephanie: Yeah, a little bit.

Yeah, it kind of is like a continuation.

So I talked about my story and my findings.

And to be honest, I didn't realize that this was going to, you know, go as far as it did.

I thought it would have been reposted a couple of times, you know, on LinkedIn.

I had shared it.

Well, I had people reaching out to me about it.

You know, I've had people share it.

I mean, it really went places.

And I was shocked, and I thought, my gosh, people really care about this.

Sam: That's like the ultimate example of viral, isn't it?

Stephanie: It kind of did.

It kind of went viral.

And I was like, I'm like, wow, I was amazed.

And a couple of weeks later, I received this email from David Parker from Lived Places Publishing.

He had read my EdSurge article.

And he said, you know, you really should write a book.

I really think you have a story to tell.

And I was shocked.

At first, I didn't realize it was true.

I'm like, oh, my goodness.

Sam: It's like, am I really reading what I think I'm reading here?

Stephanie: Yeah, yeah, exactly.

And I was like, my gosh, oh, my gosh.

So I met with him, and he was lovely.

And, you know, I filled out a proposal.

It was accepted.

And I went ahead and I wrote it.

And I love how the book turned out because my book is essentially eight chapters.

So I start with the history of disability in higher ed because I don't think people have a very good understanding of it.

You know, disability history is not something that, like, everyone knows.

So I wanted to provide a foundation.

Sam: Yeah, it's not highlighted very often, if ever.

Stephanie: No, no, it's not.

And that's what's surprising to me about this whole thing is the fact that people don't know.

And this is a very rich history.

This is a very important history that everybody should know.

And then, essentially, I went to chapter two.

And chapter two is more like, well, what is disability like in higher ed today?

What's the current landscape?

So then I switched gears in chapter three.

And I talk about, you know, visual impairments.

I give you a basic overview of what a visual impairment is and all of that.

There's other chapters, like, that talk about the medical and the social model of disability.

It talks about barriers for inclusion for visually impaired students.

Yeah, I also talk about mental health.

And that is a very, that's chapter six.

And that's a very, very personal chapter because I really, that chapter kind of is very dark because that is where I really peel back that curtain.

I tell you specifically what I went through mentally.

Sam: The anxiety and depression issues that you were experiencing at the time.

Stephanie: Right.

And I also use literature to highlight statistics and like, what is trauma?

How do college students experience this trauma?

Percentage of college students who experience this trauma.

And I talk about that.

So my book has a lot of literature that I use.

And I researched a lot because it is a concise course book.

But I also talk about it personally.

But I also use a little bit of humor because for me, I often, in hard times, I use humor.

Sam: Oh, humor is the best medicine for what ails us.

So I totally agree with that.

Stephanie: Absolutely.

And I often, so I use a little bit of humor in my wit and sarcasm a little bit because I like to, you know, put in my flair.

Like, I think everybody, as a writer, everybody has this different style.

And essentially I wanted it to be like, well, I'm writing this and I want you to know that I'm writing it.

Like, this is my style.

Sam: Yeah, we want to know it's Stephanie when we read it.

Stephanie: Exactly, exactly.

And that was very, very important to me.

Exactly.

Sam: So here you are, you had this article eventually.

You know, David inspired you to, you know, add on to it and eventually make it a book.

How long did it take you to complete the book, Stephanie?

Stephanie: Oh, gosh.

So I was supposed to complete it in November of 2025.

I actually started last summer, 2023.

And it was, it took a long time because I had, it took me months to write, obviously, because I wanted it to be as accurate as possible.

Sam: And you had to go back and adjust, I'm sure.

Stephanie: Oh, yes, yes, of course.

So we had to, I know I had to go through rounds of edits.

So I had written the whole manuscript.

I had to get copyrights for pictures that I've used and approvals if I named anybody in the book.

You know, I had to make sure that they were, you know, that they approved that their name and their pictures were in the book.

Because I talk a lot about my friends too, who really stood by me.

And I was like, I just need to know if you're okay with this.

So I have it all there.

So it is a long process to write a book because you need to make sure you have all the copyrights.

You need to make sure you have all the permissions.

And even after you've written the manuscript, you will now then go into the editing process.

And it takes a couple of edits sometimes.

And, you know, it took a couple of times to make sure that that's what I wanted to say and convey.

And of course there was also, you know, me making changes.

I would see things and like, I need to change that.

So there was that, it took a while.

And then I finally, it was finally published in April of this year, 2025.

So it was really a journey.

Sam: About a year and a half, I'll tell you.

Stephanie: Yeah, yeah, it did.

And it was really a wonderful experience, you know, seeing it actually up on the Live Places publishing website.

Because I saw that now my story would be told.

Now people will know the truth.

It's hard to explain.

Like when you're an author and you put so much time and effort into it, and you want something to be read by people, it's just such a wonderful experience.

Sam: Yeah, especially after it took, you know, the time it took to write and edit the thing, and then get the manuscript approved and everything.

Stephanie: Oh, it was a heck of an experience.

Sam: It was, no doubt.

And so when you finally saw your, you know, the title of your book there on that site, you were like, yay, I'm a published author at last.

Stephanie: Yeah, that was when it finally felt real.

Like I would say I was an author, but I didn't feel like an author until I was, it was officially out.

Sam: You probably called mom and dad, you're like, hey, you want to throw a party for me?

Stephanie: Oh, well, no, they were very, they were so, so proud.

Oh, no doubt, no doubt.

They really were.

And that it just, you know, because I talk about them a lot in the book, because they were really supportive of me.

And they really, I don't know what I would have done, honestly, had I not had them there.

Sam: They were your rocks.

They were crying along with you at some of those times.

But they were right there and they were strong, just like you are.

You came by it honest there, didn't you?

Stephanie: Yeah, I did.

And it was, it was just, you know, and I also want to say about my book, it's not, you know, I talk about how hard my experience was, but I also kind of tell you how I reconstructed my identity and how I moved forward and like what we can do better.

I want this book to be like a symbol of hope for people, that no matter how bad it gets, you can always move forward and it can be better.

Sam: Yeah, you can always make the best of the situation.

Stephanie: That's right.

And it's just a story of resilience.

And someone said to me once, Gretz, and, you know, but I don't, I want it to be just a sim, just I want it to be a story of hope.

You know, it's, it was, it was painful.

It was hard, but I didn't want it to be like, it's a depressing book, but I wanted it, I wanted it to be real, but I wanted to also show people, yes, you can do this.

Yes, it can get better.

Sam: It, you know, it's educational.

People can learn a lot from, from the struggles that, that you faced and the means by which you were able to overcome them.

And it's a great read for, you know, not only people of higher education, like, you know, professors and other, I guess, administrators, if you will.

It's also a great read for, for students who are, you know, in pursuit of degrees that are seeking to overcome disabilities as well, correct?

Stephanie: That's correct.

It's definitely for, you know, that those realms and, you know, people who just really want to learn about disability, because I don't think that it's discussed enough, to be honest.

I think that there's so much that we as a society and in higher education need to learn about it.

And, you know, people with disabilities should never be limited, you know. Sam: They should never be ashamed of them either, shouldn't they?

Stephanie: No, they shouldn't.

They should not be ashamed of it.

And unfortunately, they, you know, oftentimes they're made to feel that way.

And honestly, like, we're made to feel that way.

And we should not be made to feel that way.

Sam: No, that's not the purpose of this book, to help us to sort of, you know, embrace our respect.

Stephanie: Oh, yeah.

And my journey to acceptance was not easy.

And for the longest time, I was ashamed of it.

And I'll be completely honest with you.

I was ashamed of it.

I didn't like it.

I thought it just made me, you know, gross and ill.

Like, why wouldn't anybody want to be with me or talk to me?

And but now I love it because, you know, I can help people.

Sam: Yeah, I can see that.

Stephanie: My biggest thing is helping people.

Sam: And I feel like it's harder to accept later in life sometimes.

Like, you were 20.

So, you know, all you'd ever known was, you know, complete total vision.

And so, you know, it's one thing if you experience it early in life or as a baby like I did.

But, you know, if you don't experience it until you're a young adult, that presents a whole other challenge.

Stephanie: That's exactly it.

And I actually read about that in my studies.

And it is hard when you have the age of onset of disability.

It is harder.

I remember reading an article.

And actually, people who had acquired a disability, it was a lot more challenging for them to come to terms with it.

And that's essentially like what I experienced.

I had a really, really, really hard time, you know, coming to terms with it.

But over time, I took the steps necessary to really accept who I was, this new person, and kind of saying goodbye to the old person, but accepting this new identity and who I am now.

And I can say that I'm proud of who I am.

I love who I am today, you know?

Sam: Exactly, as you should.

And, you know, that's definitely a tremendous feat, getting the book written and published.

We'll get back to a little more about that here in a second.

But let's talk about your role in the School of Osteopathic Medicine there at Rowan as a management assistant.

Talk a little bit about that, if you would, and the work that entails.

Stephanie: Sure.

So my position is a management assistant for student affairs and alumni engagement.

And I essentially handle anything financial.

So I'm talking, when I talk about finances, I'm talking about class and club budgets, student organization, you know, different things like that.

I'm also handling reimbursements, purchase orders, contracts, any vendor setup, anything financial I handle.

So, and that kind of comes from my business background.

And I get to interact with the students, and I really love interacting with the students.

Sam: And it makes you feel like you're still in college, which in a sense you are because you're a doctoral student.

Stephanie: Yeah, actually, yeah.

And sometimes I'll talk to the students about my research and then they get all excited because, you know, they're doing research and it's just a great time.

We have a good time.

Sam: Yeah, so you can sort of, you know, bond that away with your commonalities and interests and things like that.

Stephanie: That's true, we can.

It's a good time, you know, and yeah.

Absolutely.

Sam: So you're doing this, basically five days a week, and your schooling, I guess, is at night for the most part?

Stephanie: Yeah, so I'm currently in my dissertation now.

Sam: Okay, so you're in the home stretch.

Stephanie: Yeah, so I've been doing this.

I'm in, I would say, year three.

And I basically do my, you know, my study, like I conduct interviews and everything at night or, you know, when I have time off or something like that, and or free time.

And I've learned to juggle it.

At first, it was a bit of an adjustment because I had been out of school for a couple of years.

So when I went back into school, and it was a bit of an adjustment, but I've learned how to manage it.

Sam: As I say, you could teach a class in time management now, I'm sure.

Stephanie: Yeah, I've been always been good with time management, but this is a different time management because doctoral work is so different from undergrad and grad work.

I mean, doctoral is still graduate, but this is a different level because...

Sam: Yeah, it's upper level graduate.

Stephanie: Exactly.

It's very different.

You're taught to think and look at research in a different way.

You're taught to analyze and to write differently.

And dissertation writing, no one can really prepare you for that because that is like a whole different animal.

And that's where I'm at.

I recently wrote chapters one and two.

I passed my proposal.

So I am now in the process of collecting data and it's a wonderful experience.

I'm truly enjoying that.

Sam: You're learning a lot, I'm sure.

And that's a good thing.

Were there the doctoral classes at night, back when you were still taking classes?

Stephanie: So my program was completely online, but we'd have office hours and they were at night, some majority of the time.

And so I'd be at work full-time and then I would come home and do office hours at six or five.

It was definitely challenging.

It's hard, especially when you're...

So you're trying to work full-time, but you're going to school part-time and you kind of have to...

You have to learn how to compartmentalize that.

Sam: Totally online, it has its pros and cons you have to work through.

Stephanie: And you have to be motivated because when you're working online, you're very independent.

So you really have to know how to manage that.

For me, I work very well online.

I actually like it a lot because I can go at my pace.

Sam: And yeah.

On your schedule too, which is a definite plus indeed.

Stephanie: Absolutely.

Sam: How many chapters is this dissertation going to be when it's all said and done?

Stephanie: It is going to be six chapters.

Sam: Six chapters.

Stephanie: It's going to be six chapters, yeah.

I am doing something called the public scholarship model and essentially chapters four, five, and six will be...

One will be an empirical article.

The other one will be a practitioner article.

And the other one, the final chapter will be like an item of my choice.

And essentially, I'm disseminating my findings to these outlets.

That's what the public scholarship is because I would love to teach in higher education.

So I would like to have more publications.

Not that I don't already have...

I mean, I have publications in the sense that I have my book, I have my opinion piece, but that way I'll have a peer-reviewed article.

And that's very important, especially in the realm of higher education and a practitioner article and an item of my choice, which I would love to do.

Sam: Yeah, it'd be great to have other future grad students citing your work with this at like Levin, 2025.

Stephanie: Oh, yeah.

So it's funny because somebody actually cited my Ed Surge article and she reached out to me on LinkedIn and I was like, this is the coolest thing.

I know, I was like, the fact that I'm getting cited.

Absolutely.

Sam: Yeah, I guess the fact that somebody else is using your work in their papers, it is an honor for sure.

So when do you anticipate completing this dissertation, Stephanie?

Stephanie: Ideally, I'd like to defend it in December of 2025 and then I would graduate in January and walk in May.

That's where I'm at.

I mean, I'm going at a good pace because like I said, I'm in data collection now.

So I'm going, everything's going according to plan.

Things can change, but right now, December is my goal.

Sam: Yeah, even though you wouldn't be walking until May, but being able to defend it before Christmas, that would be like an early present, wouldn't it?

Stephanie: Oh, you're not kidding, you would be.

It would be such a wonderful present, like happy holidays to me.

It would be great.

Sam: Happy holidays to Stephanie indeed.

So we actually wish you the best of luck with that, as well as your continued work endeavors.

And tell us, Stephanie, how we can get our hands on this book.

It's called Picking Up the Pieces, Finding My Way as a Visually Impaired Woman in Higher Education.

Tell us how we can get our hands on that book, Stephanie.

Stephanie: Sure, so you can go to the Live Places Publishing website and you can actually, you go under the Disability Studies Collection, you'll see my book.

I also have a personal website too, an author website that people can visit.

It's www.stephanianlevin.com.

And there is a link to where you can purchase my book.

And I would love it if you purchased it.

It comes in e-book form or if you're old fashioned or old school and you like a paperback, you can order a paperback.

I actually received my copies a couple of weeks ago and it's just crazy to see it in paperback form.

Sam: Another source of pride, indeed.

Stephanie: Oh, it was, it was.

And it was just the coolest thing.

But those are the ways you could definitely order my book.

And I really appreciate it if people would do that.

That would mean the world to me.

And I would love it if you'd read my story.

It would be great.

Sam: For sure.

And we will link them to your website, Stephanie, in the show notes as well.

So you're a Levin, not Lerin.

Sorry, I've been mispronouncing your name.

Stephanie: Oh, no, no, no.

You're fine.

You know what?

It's all, it's fine.

That it's okay.

Sam: Yeah, you know, hopefully it's not the worst you've ever been called.

Although if anybody called you, put down shame on them.

But anyhow, yes, indeed, Stephanie, we are sure proud of you.

Like you said, we will link you folks to her website.

And if you would like to reach out to her, in fact, we would love for you to and tell her that you heard her On the Demand and Disrupt podcast.

It is Levins@rowan.edu, correct?

Stephanie: That's correct.

And I would love to hear from you.

Yeah, absolutely.

Any questions?

Please reach out anytime.

Sam: Yeah, questions, comments about the show, about her book.

Stephanie would love to hear from you with any such inquiries or tidbits of that nature, for sure.

Well, Stephanie, thanks so much for coming on and joining us from South Jersey.

We sure hope that you've enjoyed your first podcast here.

Stephanie: I really did, Sam.

It's really been a pleasure being here today and speaking with you and everybody.

Sam: You want to sing?

I know I promised you the opportunity if you wanted to sing a few bars.

Stephanie: Oh, I'm good.

Good?

Okay, all right.

Sam: Well, I'll tell you what, this very well may not be your first time here on Demand and Disrupt.

So, in fact, we'll say when.

When we have you back, you can sing for us then, okay?

Stephanie: I most definitely will.

That'll give you a chance to warm up, get the vocal cords ready, you know?

Get your coffee.

Are you a coffee drinker?

Stephanie: I am.

Sam: Okay, so will that give you time to get the coffee in your system, too?

That always helps me sing based on my singing experience as well, which is somewhat, you know, I'm not a, you know, not a Taylor Swift or anything like that, but not too many of us are, for sure.

But anyway, Stephanie, thanks so much.

We'll do it again.

Stephanie: Thank you so much, Sam.

(Music playing)

Demand and Disrupt is a production of the Advocato Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley, and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song Change.

Don't forget to follow or subscribe so you never miss an episode.

And please consider leaving a review.

You can find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks, everyone.

Below are links to some of the programs mentioned in the show:

Various Assistive Technology Resources Centers (ATRC) in KY

Kentucky Appalachian Rural Rehabilitation Network (KARRN)

Appalachian Center for Assistive Technology (ACAT)

Project CARAT durable medical equipment refurbishing and reutilization program

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Thearc.org

To hear Sam’s recent interview with Lisa Mckinley

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

To learn more about Von Hippel-Lindau, visit vhl.org

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript AI voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley.

Sam Moore Hello, Kimberly Parsley.

I am Sam Moore.

Kimberly Parsley Hey, Sam, how are you doing?

Oh, better now that I'm in your Zoom presence.

Kimberly Parsley It took us a while, didn't it?

Zoom was having a day.

Sam Moore Yes, you folks miss that, but we had to work extra hard to get Zoom to cooperate.

I mean, we needed a different passcode because the one I've been using to get in, you know, the last two or three times, it was no longer valid.

They of course had to give me a new passcode to work with.

So I'm sure by the time we do this again in a couple of weeks, Kimberly, I'll need another new passcode.

Kimberly Parsley Zoom likes to keep us on our toes, doesn't it ?

Sam Moore It does.

That's a, that's a nice way of putting it.

Kimberly Parsley Yup.

And there's a, I believe there's severe thunderstorm warning as we record here in Bowling Green, but all seems well.

Sam Moore So yeah, you're, you're still, you know, you're still with power.

That's a plus.

Kimberly Parsley All, all good, all good there.

So it's a stormy May 2nd here in Bowling Green.

It's right before Derby Day in, by the time this comes out, the Derby will have, well, hopefully have been run and decided.

Sam Yeah.

Unless they postpone it, which, you know, they'll, they'll run in the rain, but, but if there is lightning, no doubt, they'll have to take some precautions.

And just for the record, Kimberly, the, the horse that I am choosing is that the name is Sandman.

Kimberly Okay.

Now you're putting that out there and so it's, it's going to be on the record.

Sam So I'm putting that out there.

It's not Sam man, but it's close.

Kimberly Now, do you, apparently people bet on everything these days.

Do you, do you gamble on, uh, on the horse races?

Sam Not, not generally when I've gone to the local racetrack here in Henderson Ellis park, uh, uh, a few times.

And, and when I go there, I'll, you know, I'll play some small bets, but I've never, I've never betted on the Derby or anything.

I just, I just pick a horse and, and my horse hasn't won often enough for me to, to start putting money on them.

But, um, you know, if I, you know, if I get on a winning streak here, you know, two or three years in a row, then maybe I'll start putting money on them.

Kimberly But now do you pick a horse based on anything other than just, just gut feeling like the name?

Sam yeah, it's generally just, uh, just the name.

Yeah.

And if I have some, something that sort of resembles my name or, you know, something else after my own heart, I'll run with it.

I can make a case for journalism because, well, I wasn't a journalism major, but my major was in the school of journalism and broadcasting it at Western Kentucky university.

So when I took some, I took a news writing class, so I could, I could do journalism, but that's the favorite.

So I don't want to pick.

Kimberly Oh, the favorite’s name is Journalism?

I haven't looked up anything.

I used to follow it, but I, you know, I don't now.

Sam Yeah.

I don't want to pick the favorite.

So what, by the time you folks hear this, you will know how my horse sandman did.

Kimberly You'll know how bad or good or good Sam is at picking horses.

Sam So you'll know whether or not to follow my lead next year.

Kimberly Right.

Right.

Exactly.

Exactly.

So, uh, we are going to talk to my interview guest later on in the show is Annie Lapidus and she is a, yeah, she is a friend of mine.

She's from Pittsburgh.

She is blind and has a rare disease called Von Hippel-Lindau and we are going to talk to her about that and, because it is VHL awareness, VHL for Von Hippel-Lindau awareness month.

And so I'm going to talk to her about that.

Now, Sam, you're, you're kind of a technical person.

Do you get excited about the global accessibility awareness day?

Sam I can appreciate the global accessibility awareness day.

I'm not as knowledgeable about it as I probably should be.

And you give me way too much credit by the way, for being a technical person.

You know, I just, I try to learn what I got to know, but I'm not one of those gurus that just, you know, I'm not one of those innovators that tries out the new technology before everybody else does.

Kimberly You know, I do like, I do like my, my technical gadgets.

I really do.

So I, I try to pay attention to that and that's on May 16th this year.

So the, the big companies,

Sam so two weeks from the day we're talking here right now.

Kimberly Your Apple and your Google, they, they tend to, well, hopefully they will come out with some, some new stuff and get everybody excited about, uh, that for people with all kinds of disabilities.

And so other things coming up in May are

Sam My birthday on May 19th.

Kimberly Well, happy early birthday, am

Sam Just had to throw that out there.

So people have plenty of time to shop and, you know, give me presents and everything.

Kimberly So everyone, everyone send in your, uh, send in, uh, emails to demand and disrupt at gmail.com.

Happy birthday.

Hop on the Facebook page.

Sam It'll be the big 37

Kimberly 37.

Wow.

I'm telling you, at least you're not on one of the big, the big zero numbers, you know, Sam true.

Yeah.

And I'm, I'm one of those, I try to live gracefully and each time I hit a new age, I just look at it like, well, getting there beats the alternative.

Kimberly And that is true.

And so other months is this is May is ALS awareness month, also known as Lou Gehrig's disease.

So there's that arthritis awareness month.

And I did not know this, but when I was researching, did you know that arthritis is the leading cause of disability in the United States?

Sam I did not know that.

Kimberly Mental health awareness month, always very important.

And this one, I found interesting national mobility awareness month.

And so that kind of highlights the different technologies and mobility aids and things, and the people who use them that, uh, helped to make the world more accessible for lots of different folks.

So I think that one's interesting.

Um, you know, I was recently listening to something, I heard someone popular and I

Sam somebody popular that narrows it down.

Kimberly Can we wait, wait, wait, wait, it was Jon Stewart.

It just takes me a while.

The brain is not as quick as it used to be.

Sam Jon Stewart. Yes, he is very popular.

Kimberly Jon Stewart said the phrase confined to a wheelchair.

And I was like, wow, Johnny boy, you ought to know better.

You ought to know better than to say confined to a wheelchair. They're wheelchair users, you know.

Sam And wheelchairs give us mobility, those that need it.

Kimberly They do.

They do.

So, uh, it just highlights how important it is that we have mobility awareness month, you know.

Sam Those with wheelchairs are mobile.

They are, you know, because of, uh, because of the, the wheels.

Yeah.

Yeah.

Kimberly So, so, um, I wrote into John Stewart and let him know, I'm sure he'll be appreciative of that.

Sam Oh, did you send him an email?

Kimberly Oh yeah.

Oh yeah.

You know, I'm always up in everybody's business.

That's just how I roll.

It’s just what I do.

Sam I'll be, I'll be listening and see if he mentions Kimberly Parsley from Bowling Green, Kentucky.

Kimberly I doubt it.

I doubt it.

But maybe he won't say confined to a wheelchair anymore.

Sam Maybe he just won't let that word use that word again.

Kimberly Exactly.

And, uh, you know, his podcast today, the weekly show with John Stewart had our own governor, Andy Beshear on.

Sam Did he now?

Kimberly Yes, he did.

Uh, did you know that governor Beshear has his own podcast now?

Sam I did hear that where did I hear about that.

I think on K and N the Kentucky news network.

I heard about that.

Kimberly The Andy Beshear podcast.

Sam So yeah, very uniquely named, you know, really creative, really creative, but you know, when you're the governor, I guess you, I guess you do that, you know, you can get away with any kind of name.

People, I guess, I guess so people will tune in, but yet, but no, and all honestly, I do, uh, you know, I do applaud him for taking any means necessary to, to reach his audience and I'll probably check out a few episodes myself.

Kimberly Yeah, I haven't yet, but, but I probably will too.

It seems like, uh, it seems like our governor might have his eye on, uh, something bigger coming down the pike. Don't you think?

Sam Maybe if he, especially if he's entering the podcast realm.

Kimberly Yeah, yeah.

I know this is, this is the big time right here, you know, there's governor, but then being a podcast host, that's a whole bigger deal.

Sam I'm telling you that's, that's way bigger than being governor that wears being governor out.

Kimberly Exactly.

And then, uh, so we have also, of course, coming up, we have Cinco de Mayo.

And you and I were talking about that and because you will be doing trivia.

Sam I will be hosting trivia at rock house on the river in Henderson on the evening of May 5th.

That's how I'll be celebrating.

But, uh, anyhow, hopefully a number of, uh, people will be playing and, uh, enjoying just enough margaritas to have fun, but not too many that they can't, you know, concentrate and Excel in trivia.

Typically a lot of people, uh, think that Cinco de Mayo is, uh, the date of Mexico's independence day.

But, but that's in fact not true.

Mexico's independence day falls on September 16th every year.

Uh-huh.

So we got a little ways to go.

Kimberly So what is Cinco de Mayo then?

What are we celebrating?

I think here we're just celebrating like Mexican-American heritage, you know?

Sam Yeah.

And the French is, uh, you know, the French army's victory over the, or the Mexican army's victory over the, uh, over the French army on that day in, uh, the battle of Puebla.

That's what I was trying to retrieve off the air here.

Funny how being, being on air brings out the best in you, but it was the, the battle of Puebla on May 5th of, uh, 1862, the Mexican's victory.

So yeah, that's, that's what we're celebrating on Cinco de Mayo.

Kimberly Interesting couple of weeks coming up, lots going on and interesting show coming up with my interview.

You all stay tuned for my interview with the very, very awesome Annie Lapidus.

Music transition

Kimberly Parsley Welcome to demand and disrupt a disability podcast.

I am here with my good friend, Annie Lapidus.

Annie, how are you?

Annie Lapidus I'm doing great, Kimberly.

I'm so happy to be here with you.

Kimberly Parsley Thank you so much for joining us.

We are going to talk about you, but we're also going to talk about Von Hippel-Lindau because May is Von Hippel-Lindau awareness month.

And I don't think most people know what that is.

So tell me what is Von Hippel-Lindau or VHL for short and about your VHL journey in particular.

Annie Lapidus All right.

So VHL is a disease that both Kimberly and I have.

It's a genetic disorder.

There's actually a VHL gene and it's a tumor suppressant gene.

And there's something wrong with that tumor suppressant gene in us.

And so we create lots and lots of tumors in our body.

And since it's genetic, that means it's lifelong.

So we have to do a lot of just management and constantly checking to see if there's new tumors.

So, I mean, I feel pretty familiar with the inside of an MRI in a doctor's office.

Right?

Kimberly Yep.

Yep.

Annie All right.

And so here's the thing.

VHL affects 10 different organs.

And so I had to write them down because that is a lot.

Here we go.

Kimberly I don't think I can name them all. Okay.

Annie So brain tumors, spinal cord tumors, check, check.

Kimberly Yeah, just check, check.

Eye tumors, check.

Kimberly Check.

Annie Kidneys, check, which I have cysts, not tumors.

Kimberly Ah, I have had kidney cancer.

So yeah, if we, if we were, I don't know, what would this be?

Like a drink shots every time or I don't know if we'd make it through.

Annie Yeah.

Or it'd be a pretty funny podcast.

Kimberly Yeah.

It would get different real quick.

Annie Yeah.

All right.

So, so where are we?

Okay.

So we're at kidney, kidney cancer.

Um, we have the pancreas and the adrenal glands.

That's a bad one.

That's a renal start renal.

What is it?

Renal cell carcinoma.

Kimberly Renal cell carcinoma is the kidney tumors.

What you get on the adrenals, I believe is called a pheochromocytoma.

And that I don't have, I've never had that, but that, I mean, it's like flooding your body with those people who have that it like floods your body with.

What is it?

Cortisol or I mean, it just messes with the hormones bad.

Annie So, yeah.

And that can metastasize that one is cancer.

Some of these, I believe so, I'm not a, we are not doctors.

Kimberly We are not doctors.

No, don't ever get your medical advice from us. Annie Okay.

But listen, this is what Chad GVT told me.

Okay.

So blame it.

Kimberly oh, okay.

Annie So we're at seven.

Number seven is inner ear.

Kimberly Check, I had that.

Annie You take a shot.

Kimberly Yep.

Take a shot.

We got liver.

Kimberly I did not even know that was one.

Annie Yeah.

Well, something new to add to the list.

Kimberly Something.

Yeah.

I hope somebody's checking that.

Annie The lungs.

Kimberly Okay.

Annie That metastasizes quickly, apparently as well.

Kimberly Huh?

Wow.

Annie And then the reproductive organs.

Kimberly Right, right.

I did know about that.

Yeah.

So it's, it's very involved.

I call us tumor farms.

We just, yes.

We, we just grow them, grow them, grow them.

So tell me about your journey with VHL.

Cause I actually don't know if I know about this Annie, and I are for listeners are obviously friends, but so tell me, I actually don't know about your whole, your journey with VHL.

So tell us about that.

Annie Yeah.

So I was diagnosed with VHL when I was 12 years old.

So I went to the eye doctor because I wanted contact lenses, very concerned about my appearance, did not want to wear glasses at age 12.

Womp womp, right?

As I was, you know, with the technician doing these, you know, getting the contact lenses and learning how to put them in the eye doctor, pulled my mom aside and was like, I see something pretty bad in the back of her eye.

On her retina.

So, so quickly I'm talking within the span of two days.

I had had laser eye surgery.

I went into an MRI and had my brain scanned and my spinal cord scanned.

And they were, and then we got the results back immediately.

And eyes, brain and spine all had tumors.

Kimberly Oh my gosh.

Kimberly Now this is genetic.

.Do your, did your parents, do they have VHL?

Annie they do not.

So I am something called denovo and there's, there's a good number of us that are denovo and it just means we're the, we're the first in line, um, to have it, which, you know, I'm, I'm very grateful for that.

My parents, um, do not have it.

You're denovo right Kimberly?

Kimberly I am, I am. Right.

My parents don't have it either.

Yeah.

And there, there's an increasing number of us.

Uh, so, which is weird.

And I don't think anyone knows why that is exactly.

Annie Something's in the air.

Something's in the water.

Kimberly Yeah.

Some, something is somewhere definitely.

So, wow, that is, that must've been terrifying for your parents and you.

Annie Yeah.

I mean, talk about a bummer day, right?

Kimberly Indeed.

Annie Yeah.

And I went to NIH then still at the age of 12 and they formally diagnosed me with VHL, um, had to go through all of the tests, but they decided pretty much immediately that I needed brain surgery.

Kimberly Oh my God.

Annie And so, you know, I might've been 13.

Who knows, you know, that there was a birthday in between there.

Happy birthday to Me.

Kimberly Too young for brain surgery.

Annie Right?

Yeah.

So yeah, I'm, I'm early teen years having brain surgery at NIH with Dr. Oldfield, Kimberly, you know, Dr. Oldfield.

Kimberly I do. Dr. Oldfield is from Kentucky guys.

He is, uh, he has, he has passed away, but he was an awesome world renowned neurosurgeon and he was from Kentucky originally.

Annie And so lots of us know him.

Um, and he's, um, been our surgeon for brain tumors.

So we all have beautiful scars on the back of our heads from him.

Kimberly Yep.

We do.

He was great.

Annie And so I guess from there, it got less dramatic for, for a number of years.

And I have been, I mostly have been asymptomatic.

Fortunately, um, the brain tumors, spinal cord tumors really didn't have not caused too much problems, right?

The eyes, however, that's where I'm the tumor farm.

Absolutely.

Lots of tumors in my eyes.

And, you know, I think I was shielded.

I think my parents shielded me.

I think my doctors shielded me and the idea of losing my vision.

Like, I don't want to say it didn't cross my mind, but I don't think it really crossed my mind as a thing.

I was just excited to like get out of, um, school to go to the eye doctor all the time, you know, I mean, I'd rather be there cause it wasn't a painful thing necessarily, right?

Lots of laser surgeries, but you don't feel those.

I mean, and that's where, and that's where the resilience comes in.

Right?

Like we are resilient people because we have to be.

Right.

Kimberly Yeah.

Yeah.

Annie So yeah, I lost my vision when I was 24.

I mean, here's the thing.

I don't want to tell like a pity story, but I also want to say what's real.

Right?

Kimberly Yes.

Yes.

Annie So, because this has impacted me in a negative way, it has changed like my quality of life and what I expected for my future.

And I always wanted to be a lawyer.

I was living in Chicago at the time and I was studying for my LSAT, the, you know, uh, law school admission test and literally while I'm taking a practice test, I like looked down and all of my vision like went away.

And I was like, I lifted my head back up and it was cool.

And I was like, okay, I'm cool.

You know, you know how you just deny, but yes, so that's what happened.

And I, within a couple of days, I was like, this is not, this is not a good thing.

I cannot, I cannot deny this anymore.

And so I came back home.

Kimberly And home is where?

Annie It was my parents' house in Ohio.

So where I was raised in Ohio and had a barrage of eye surgeries, which, you know, did not work because the tumors were, were stronger.

Yeah.

Yeah.

Kimberly So was it like a retina detachment situation?

Is that what had happened?

Annie Yeah.

Yes.

And it was like a over and over and over retina detachment.

So I'd have like laser surgery after laser surgery.

And like I said, I thought no big deal, but each time you do that, of course it's going to deteriorate.

But again, I was shielded from a lot of that until it really hit me at 24 and I could not see anymore.

Kimberly Right.

And that is, that is how VHL I think works.

I think, what is it?

There are like a third of the people with VHL right now are blind or visually impaired.

Annie Really? that's a lot.

Kimberly It's a lot.

And just for my listeners, that's how Annie and I know each other is from a VHL Alliance, which I'll get to in a minute, support call for people with low and no vision.

So shout out to all our friends on the low and no vision call.

You know who you are.

And we love you everyone.

We love you so helpful.

And I think, I think that's, I think it's a very similar story that we all have is that the, the tumors, like you said, they're just stronger.

They, they attack over and over again.

And every time you have surgery, you have scar tissue and the retina is not a super forgiving thing, I guess it's, it's, it's, it's very, well, it's kind of delicate and you know, over and over and over again, it's just the retina detaches and it tears now, I believe nowadays there are, they have better techniques, I think for retina surgeries, but yeah,

Annie we're talking 90s with me.

So I hope so.

Kimberly And I, yeah, I heard it described though, one time as removing, retina surgery is like trying to remove a sticker from tissue paper.

It's a delicate thing.

So, yeah.

So dang, that's a lot.

Annie Yeah.

Kimberly And, and I know what you mean is you want to, there is no denying that it sucks, but also no one wants to be pitied.

Annie No, no,

Kimberly It's a delicate balance when you're telling people about this kind of thing, isn't it?

Annie It really is because it is such a, blindness is pervasive.

It's all encompassing.

It is not something that I can just take and put in my pocket.

At any point, right?

It's just, it's, it is something that really changes the way in which you navigate the world in every aspect.

That sounded pitiful.

Kimberly No, no, it's not.

It's like, and you, you know, we have, we have lots of blind listeners to the show and you know, they'll understand that it's you, you, you do your thing and you're just going through your life and you're just, you're just living your life and then you run into a door and damn it, there's blindness, you know?

Annie Yep.

Yep.

Sure is.

I mean, it's seriously like when we, when we all pass away, like I want them to study our dented skulls and just see all of the things we are running through.

Kimberly Yes, all the, shins and my brow bone and my head into everything.

I swear I told Michael, I want steel-toed socks.

You know, I want to wear socks, but I don't want to, you know, break toes anymore.

Annie So I got you there.

Yep.

Kimberly So we, we spoke a little about the VHL Alliance in the beginning.

So tell me about the VHL Alliance and what that is.

Annie Okay.

So the VHL Alliance is the overarching organization that helps people with VHL.

Um, so I actually have their mission statement and I'm going to read that.

It's short.

Kimberly You're so prepared.

You're so prepared.

Annie I want it to be a lawyer.

All right.

So the mission of the VHL Alliance is improving the quality of life and health outcomes for VHL patients, families, and caregivers with inclusive community building connections to excellent education and treatment options and advancements in medical research.

That's a lot, right?

So, yeah, I mean, what that I think comes down to is they are connecting with doctors and scientists to try and find treatments, trying to find cures.

And then they're also helping us folks with VHL navigate this, this disease, which, as we kind of talked about earlier, is something that we really, we have to scan MRIs, CT scans.

I mean, these happen every six months, sometimes every three months, you know, and just check our tumors constantly.

But the thing is, is that doctors don't know about this disease.

I'm generally telling my doctors, you know, like, hey, I need, I need an MRI scan here, write this out and write it like this, you know, which is like, which is a funny thing to do.

It's a, it's a power switch, but we have to advocate for ourselves for sure.

Yeah.

Kimberly The Alliance does everything from, I mean, they hold medical symposiums around the world for researchers to come together and share what they've learned to, to educate doctors and surgeons and things about VHL.

And I think they, they convene like a tumor board, you know, to say, okay, here's the situation we have.

A doctor can say, here's a situation I have with a patient.

I want to bring it before,all these other doctors to help figure out the best course of action, you know, the best treatment option.

So, I mean, that's amazing.

And then at the same time, they're holding support calls so that we can connect to each other and say, Hey, is this symptom weird?

You know, and so we can say, you know, I'm in Utah or whatever.

Where's the closest place that knows about VHL where I can get my care?

They're connecting us with people to answer those questions.

So I will put a link to VHL.org on the, on the show notes and anyone who wants to look it up, can look it up.

And I know they're holding a walk on May 17th and to raise money.

So I will not be walking.

I, walking is not a thing I do unless it's, you know, really, really necessary to get somewhere.

So just, just for funsies, it's not a thing I do.

Annie Yeah.

The able bodied people can walk.

Annie Right.

We, we, we appreciate them doing that for us, but we'll, me and you said, but again, not for us, not for us.

No, right.

We'll have a talkathon.

I think we, we talked about that.

Kimberly So, so law school sadly did not work out for you because, so you knew that, which is a shame because, uh, you would be great at it.

Annie Thank you.

Kimberly And now you are a yoga instructor.

You are many things.

One of the things you are as a yoga instructor.

This, I know because I am still sore from doing yoga with you yesterday.

Yeah.

Yep.

Yep.

Very sore, very appreciative, but sore.

So tell me what made you decide to become a yoga instructor?

Annie Well, I, I started practicing yoga because it's something where you're pretty much stationary on your, on your mat.

Right.

So I don't have to move around a room or interact with anyone else.

It is like an independent activity that you, that you can do with other people.

Right.

So, and the yoga mat has two short sides and two long sides.

And so that is, you know, I can be in that area, that small area and feel safe and feel like I can move and understand, um, you know, like where to place different parts of my body in, in alignment with that mat.

So it is a little bit, you know, harder.

It's a lot harder, um, than, you know, people who can just watch the teacher.

So yes, I was, I decided that because blind people and people with other disabilities don't really have access to classes that are suited for them.

And so I got my yoga certification and I, yeah, it's my, it's really my, my joy to, to help all of us that are marginalized in lots of different ways who can not walk into a yoga studio and automatically be accepted.

Kimberly And you do, do you do all of your classes over zoom?

Is that correct?

Annie Right now I am.

Kimberly You also do some in person sometimes, right?

Annie Yeah, yes, I do.

And I do, I also teach, you know, I have classes where everybody is able bodied as far as I know.

So it's not, it's one of those things that the blind teacher doesn't have to just teach blind students, right?

Right.

Right.

And like the class I did with you yesterday, I believe everyone there was doing chair yoga.

Kimberly Yes, I do chair yoga because I have, you know, balance problems.

Other people have, have other issues, but I mean, you do, uh, you do a meditation.

So there's relaxation and breathing, but then also, you know, the chair yoga.

So how do you, how do you make yoga accessible for people with all kinds of disabilities?

Annie I think the first thing is to connect with the people who are in your class.

I need to throw my ego in the garbage because this is not about me.

This is about them and them having the, everyone in the class having the opportunity to move in a way that works for them.

And so I, I first asked, you know, how may I support you?

How can I care for you?

What, you know, what do you, what would be helpful?

All of those things.

And then I try to incorporate all of that into a class.

Now I have a special certification in accessible yoga.

And what that is, is what most people would think of as traditional yoga, like on, on the mat, which is on the floor.

So I can teach that and chair yoga at the same time.

So we don't have to isolate those people who are in chair classes.

They can, they can be in any, any yoga class of mine, as can someone who's on a mat.

Um, so it gives more opportunity for people to participate and be a part of this.

Kimberly I didn't realize that was a special certificate.

Annie Yeah.

Most people don't think about accommodating people with disabilities.

Kimberly Word.

Annie Was that not obvious?

Kimberly True that, but yeah, I'm so glad you did.

And I guess it's your background as being someone who is blind that that was important to you too.

Annie Absolutely.

And I, and I went through trainings, um, with people who center disability, which is a hard thing to find.

And I'm going to just shout out Open Up Pittsburgh, um, because that's great work that they're doing to center disability.

And I think they are the, we're the first person people to, to give out certificates.

Kimberly Really?

Annie Uh-huh.

Kimberly And tell me, what is that organization again?

Open Up Pittsburgh.

Kimberly Pittsburgh.

And that's where you live right now.

Annie Yes.

Kimberly Okay.

And, and what is open up Pittsburgh?

Annie Um, they are an organization that does yoga and other movement for, for, for everyone, and they make sure that people feel welcomed and wanted and included in all of the things that they do.

They have what they call, um, instead of walking, like walking walkathons, they have a walk, roll and stroll athon.

Kimberly That's awesome.

Annie Yeah.

Yeah.

So, I mean, that alone just shows they, they think about the stuff and they care.

So shout out to them.

Kimberly When I was, before I had your, the class with you yesterday, you know, you texted me and asked a question and, and I believe my aunt, you texted me and my answer was something like, uh, you know, just do whatever and I'll adjust accordingly and your message back.

No, no, no, we do not just adjust accordingly.

This is not what we do.

Annie Not in this space.

You tell me what you need and it's, it will, it will happen to the best of my ability.

Kimberly And, and that, that was amazing.

And not, it's great for those of us who don't get that everywhere, you know?

Right.

Really great.

Kimberly Now, before you were a yoga instructor, you did some artistic work in television, which I was very excited about and immersive theater.

Can you tell me about your, tell me about your immersive theater experience?

Because that just sounded fascinating.

Annie Sure.

So I was cast in a production called Ojo : The Next Generation of Travel.

And Ojo, um, in Spanish means eyes or look or see.

And so really I, I talked about my blind experience with the people who are, you know, producing this production and, you know, they thought that really, if this was a great opportunity to bring awareness to disability and to actually have people for just a brief moment, um, experience it.

So there's many times throughout the immersive production where people are blindfolded and you have to move around.

And this is an hour long thing, right?

So you're in it, you get to be out of it.

You, of course you get to take your blindfold off and we do have them do that over and over again.

And one of the things when I say bye, you know, to them that I say, I'm like, okay, blindfolds back on, but I put them in the elevator and people go, Oh no.

And I'm like, Oh, it must be hard.

And then the elevator closes.

Sometimes I'm less mean, but yes, but just like something to that effect of like, you know, just recognition of, you know, disability is something that, you know, again, you cannot put it in your pocket.

So the, the thing that I loved about my role, especially is that I was able to tell my story and I started out in an area where there was a dance party.

And people would, our actors would come around and they'd put like drinks in your hand and like all sorts of things that you cannot really like reach to feel around yourself, you know, and then they're like, come on, let's dance.

And you're just, people are, they don't have any orientation, right?

They're just confused.

They don't know what's going on.

And I think that was a real experience of kind of like what it is like to be blind.

Does that make sense to you, Kimberly at all?

Kimberly When, when you say people, you mean just like, these aren't actors.

These are just normal, normal people who are here for the show, right?

Annie If you buy a ticket to our show, you're going to be blindfolded and put in a room with lots of music and our actors are going to make you dance with them.

So to be more clear.

Right.

Yes.

Kimberly And, and so, and did they know you were blind?

Annie No.

So, so at some point the, we, after the dance party, the lights come up and I'm standing in the, in the center of the room and I'm like, all right, let's go.

And I walk straight ahead of me and I walk straight out a door that someone opens for me on scene, and then I turn the corner, I go into an elevator and I do that sort of like, you know, come hither hand motion, right?

Um, and I'm kind of tracing the wall, but I'm not letting people see that I'm blind.

Right.

And then, you know, I say to someone, "floor three, please.” like all of these are natural sort of things that people do.

And so once I got up there, I would walk to my particular place in the room.

I would turn around and I would start to tell my story and people would be shocked that a blind person just led them like down corridors, elevator, all of these things, I led them.

And I think that's something that people don't think of that blind people can, can be leaders and they can learn from us.

And part of my, my scene too, was serving people drinks and people would say, can I help you with that?

And I'm like, no, I got it.

Thank you though.

Right.

So it really was empowering for me to just show people that it's, it's possible to live a life and a life with joy and a life with purpose while having a disability.

Right, right.

Kimberly Now, are you just like the world's best blind traveler or did you practice this a lot to learn the route and things?

Annie Oh yeah, there was definitely, um, they lined me up, you know, so I could just walk straight, there was little things that I had to do, like I would turn around a lot and walk, you know, up against the wall.

It was practiced over and over and over again.

So to look natural.

Right, right.

Kimberly But it, but it was, and you managed it and you got it.

Was it weird to walk around without a cane?

Did you feel like I'm going to, and you're a guide dog user.

So was it, did, did it seem weird to you?

Were you like, I don't know, discombobulated, I guess.

Annie Like once I got it, the opposite really, I felt so free.

Kimberly, uh, yeah.

Just to be able to like move in this space and be like, follow me.

I'm the one who's got this.

Like that just felt so great to me because there are not many times other than being in my house when I can move around independently.

Kimberly That does sound nice.

Did it all go to your head?

Annie No, so no ego in yoga.

Go and act it now.

Kimberly So the other acting that you did, you did some voice acting for a thing that I am, I was very excited by.

So tell, tell, tell everyone what I'm talking about.

Annie The television show, Daniel tiger's neighborhood.

Kimberly Yay.

Anybody with kids around and Daniel tiger's neighborhood from Mr. Rogers, Daniel tiger.

And then there was a spinoff and Daniel tiger's neighborhood.

I watched it all the time with my kids when they were little and they loved it.

And I still turn it on now because it soothes my dog.

It makes my dog a little less crazy.

We have just some PBS in the background.

So tell us, tell us what you did on Daniel tiger's neighborhood.

Annie Well, first of all, like the way that I even got the gig was from people who I worked with on Ojo , but just a side note, I do live in Pittsburgh and I live in the same neighborhood that are in the same neighborhood that Fred Rogers lived in.

So I literally live in Mr. Rogers neighborhood.

Kimberly That is amazing.

That is amazing.

Annie Right.

And so it was more than voice work.

It was, it was video as well.

And it was just this really fun experience where it was about the theme was help your neighbor.

And so, you know, a kid came over and was just kind of helping me, you know, said, may I take your grocery bag?

Do you want me to check your mail?

You know, those sort of things that are just, um, curtesies, but they're huge when you're disabled, right?

Kimberly Right.

Right.

Yes.

Annie So just teaching kids to be more kind and more understanding of people that may not look like them or move like them.

So that felt, that felt cool.

That felt important to me.

Kimberly Yes.

And do you remember the name of the episode?

Annie Yeah, it's looking for snowball.

Kimberly Looking for snowball and snowball is a kitty cat, right?

Annie I believe so.

Yep.

A kitty cat that some, one of the characters lost or got out of the house or something.

There's like an intermission kind of in, in between those stories.

And that's when my, my, you know, be a good neighbor part came in.

Kimberly So tell us how important the support organization, like the VHL Alliance that we've mentioned, how important has that organization been to you?

Annie Aside from the obvious of connecting you with me.

I mean, and I say this with all honesty, like that has been life changing, right?

To connect with a friend who can understand me in this way that no one else can.

Kimberly You're adorable.

It is, it is really a great group.

So, so tell me, tell me about, uh, about the Alliance and your experience with it.

Annie Sure.

So the Alliance, the VHL Alliance really helped me.

I had contacted them.

Oh gosh.

I mean, somewhere between five and 10 years ago, I was looking, I was just Googling something that I just had a question about with VHL and I saw that they had a like one-on-one coaching program.

And so that was very helpful to learn like tips and tricks of, you know, uh, how to navigate the system, but more so how to care for yourself, be kind to yourself when, you know, because this disease is hard.

Right.

Um, so that coaching, then she said to me, why don't you lead a yoga class?

And so, you know, it's like, it's like, you know, how, how sometimes when you make connections and you meet new people and then you make new connections and, and on and on and on, right.

And here I am doing your podcast.

But the thing that really the VHL Alliance helps me with was that, like I said, doctors do not know about VHL.

So I was using my PCP to write all of my, um, my scripts to get like MRIs and all the things, all the scans to make sure, you know, these tumors, see how much they're growing, um, if they're growing, if I have new ones, I was doing the wrong tests, I was completely doing the wrong tests.

Yeah.

Because I just kind of went off of what I always did in the 90s.

And well, things have changed.

Kimberly Things have changed.

Yes.

Yes, exactly.

Right

Annie And so they taught me, um, you know, actually you need to do this or that, or, and this is another test that you need to do.

And it really, like it, it gave me sort of the roadmap of how to navigate this disease in a way that is much more efficient.

And they have these things called CCCs, help me out here, Kimberly.

Kimberly Um, clinical care centers.

Annie Thank you.

I knew I'd forget that.

Okay.

So clinical care centers, which is like, which are places throughout the country, maybe the world, I don't know, um, where people know VHL and they can connect you to all the doctors and guess what?

Five minutes from my house was, it is a clinical care center.

So, I mean, my goodness, I did not know that I was getting all of my, I was getting my MRIs like in the same building, my incorrect MRIs in the same building.

And I just did, you know, I mean, not, not to hate on my PCP.

I mean, they just don't know, right?

Kimberly No, they just don't know.

They just don't know.

Annie Um, so yeah, so I, I now have a point person who writes all my scripts.

She did a bunch of her fellowships or, you know, uh, training, medical school training, she kind of focused on VHL and so she gets it and she knows what scripts to write and she, you know, changed my doctors and said, you need to see this person instead of that person.

Cause that's not quite exactly what you need.

And so, I mean, that was what it changed.

That was to have all these new doctors who again, don't know everything about VHL, but they know a heck of a lot more than most.

And so I feel much more supported in my, in this cycle that we go through, right?

Every few months.

Kimberly Yeah, yeah.

And the, the, the VHL Alliance, they, if they did nothing else, just pub, they, they publish in print and they publish it in audio format, uh, screening guidelines, which are, this is the test you should be having.

And this is how often.

And I call it the, how to stay alive with VHL manual.

Annie Yes.

So, and I think it's important for people.

We obviously have rare diseases, so we just, we just can't go to our doctor and get this information, but I think even for people who have diseases that aren't rare, I still think it's very, very important to reach out.

Kimberly I mean, most, most conditions or illnesses have some sort of support group and advocacy groups, something like that.

So I encourage everyone to try to look those up, see what they are.

Um, if you're having trouble, finding one, reach out to me.

I'll see what I can find out.

I have no ins to anything, but, um, you know, I'll get Annie and she'll do the chat to GBT cause she's apparently so, and we'll find what, what you need, uh, to the best that we can, but I think.

Getting the medical information that you get from those is important.

Also the community that you get from those organizations.

So important, obviously.

Annie Yes.

Uh, and it is a lonely thing to be disabled, right?

I don't have any other blind friends in Pittsburgh.

So while I can connect, I can't fully relate to the people.

In my immediate life.

So like having Kimberly and my other VHL blind friends is, I mean, what a, what a like life raft that is completely.

Kimberly Yeah, it, it absolutely is.

It has been a life changer for me.

Kimberly Also all of them on, on the call who I talked to, some are older than me, some are younger than me, but I have learned from every single one of them at all life stages.

So I would encourage everyone to reach out and find the organization that can help advocate for you and that you can learn from and meet other people.

And May is VHL awareness month.

So I have been talking today with Annie Lapidus, one of the best people in the wide world.

So thank you so much, Annie, for coming on the show.

This was fun.

Annie I'm so happy that I was able to do this with you and yeah, thank you so much.

Kimberly All right, gang.

See you next time.

Demand and disrupt is a production of the Advocato Press with generous support from the center for accessible living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley and Dave Mathis.

Our sound engineer is Michael Parsley.

Thanks to Chris Anken for the use of his song change.

Don't forget to follow or subscribe so you never miss an episode.

And please consider leaving a review.

You can find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks, everyone..

https://open.spotify.com/show/63T8O75wc9p6hN2FlAOslG https://www.facebook.com/Accessiblehunterpodcast/

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly Parsley

Welcome to Demand and Disrupt.

I am your host, Kimberly Parsley.

Sam Moore

And I'm your co-host, Sam Moore.

Happy Easter, Kimberly.

Kimberly Parsley

Happy Easter.

Sam, how are things going up there in the North Quail Motel?

Sam Moore

Well, it's beautiful today as we record this happy little podcast.

In a few days on the actual Easter, I don't know if that's going to be the same, according to the forecast, but luckily I'm too big for Easter egg hunts at this point, we've had several in this area that have been canceled due to projected inclement weather.

Kimberly

So that's sad, but you know what?

You're never too old for Cadbury Easter eggs.

Do you like a good Cadbury egg?

Sam

Gosh, it's been forever since I've had one of those.

I like, you know, pretty much anything that you could stuff in an Easter egg.

I would always gladly devour, especially jelly beans.

Jelly beans have always been a weakness of mine.

Kimberly

I am such a snob.

I like jelly bellies, but not jelly.

Sam Oh yes.

In fact, that's really what I meant.

Cause jelly bellies are the bulk of what I've had.

They're bigger and definitely better than the jelly beans.

Kimberly My daughter got me, is this a hot take?

Here it comes.

my daughter got me a bag of just butter popcorn jelly bellies.

So how do you feel about the butter popcorn jelly bellies?

Sam I've never had those.

Kimberly I mean, oh my gosh, they're so good.

Sam I like popcorn and I like jelly bellies, but I just can't, I can't see those flavors meshing.

Kimberly Yeah, it's, it's maybe something you got to, you have to experience, you know?

Sam Yeah.

It's kind of like, I didn't use to think barbecue chicken pizza would be good.

And then I had it and then I liked it.

Kimberly I'm still a no chicken on pizza kind of person, but then again, yeah, you know, but then again, people don't like fish tacos and I like fish tacos.

Sam So, yeah, mom does too.

I'm not too big on the fish tacos, but you know, different strokes for different folks.

There you go.

Kimberly There you go.

Now that we've made everyone hungry, Sam, you did our interview today.

So tell us who we're talking to.

Sam I did, he was great.

His name is Greg Trainor.

He lives on a peaceful piece of property, right outside Pittsburgh.

And, he hosts an accessible hunter podcast along with his cohort, Mike Hudson, who is, actually in, in South Carolina.

Now, both of these men had incidents, which you will hear about that, left them paralyzed, but, but through it all, they have still managed to find ways to hunt.

They're both avid hunters and, they have overcome their disabilities quite admirably, and I think you'll be quite, fascinated by the adaptive equipment they use to make hunting happen for them.

Kimberly Well, that is interesting to hear about.

I, I listened to your interview and it was just amazing.

All the things that are out there for people who, who want to continue pursuing, hunting and fishing.

That's, so interesting to me.

Now, are you much of an outdoors person, Sam?

Sam I definitely love the great outdoors.

I've not had, I'll just be honest.

I've not had much inspiration to actually, dive into hunting yet.

Although as we'll hear some folks with, visual impairments have, and, Greg will tell us about that.

I've, I've not been too tempted to, you know, partake in that just yet, but I do enjoy the simple things like sitting on a porch swing or, or a lion in a hammock, swimming, boating, all that stuff I'm all about.

Kimberly Yeah, that's, that's kind of me too.

I do like a bird listening, I guess, you know, when the birds are singing, that's quite soothing.

I like, I have an app, I think, I believe it's, Cornell puts out an app, called Merlin bird ID, where you can record the, bird sound and it can identify the bird for you.

So I think that's, yeah.

Yeah.

Sam So that's, do you have a hammock Kimberly?

Kimberly I do not have a hammock, but I have a screened in back porch.

Sam So, okay, that, that works.

We, we used to have a hammock, but, it, it's seen its last day.

So, you know, if we want to partake again, we'll have to invest in a new one.

Kimberly I think now getting in and out of a hammock, that's kind of a, that's kind of a skill, right?

Sam It's kind of an adventure.

I do recall that once you get there, it's comfy and you don't want to get out for a while, but when you do, you have to sort of work at it.

Kimberly Really holds onto you, doesn't it?

Sam Right.

Kimberly Greg Trainor of courses, like you said, from Pennsylvania and, want to go ahead and take the opportunity to plug the Appalachian assistive technology loan fund, which is our partner here in Kentucky to supply low and no interest loans for assistive technology.

Sam And it's also based in Pennsylvania.

Kimberly Yeah, it's based in Pennsylvania.

Yeah.

So I believe you did our interview with Ryan Creech about that.

Sam Yeah.

So if you want more details on that, we definitely, we spent at least two or three minutes on it during our chat.

Kimberly So great, great program there for both Kentuckians and people from Pennsylvania.

What's the person from Pennsylvania called a Pennsylvanian?

Sam Is that that'd be my guess.

That'd be, yeah.

Kimberly Anyone listen to this?

If I've wrong, if I'm wrong, reach out and let me know.

Sam Yeah, as soon as an email demandanddisrupt@gmail.com.

Kimberly Right.

And you know, another place you can find demand and disrupt is we are now on YouTube.

Yeah, I know.

At least the audio is up there.

Now we're working on the video.

We're working on learning how to do that.

Sam We got to start somewhere.

Kimberly Yeah.

Yep.

Getting past my hesitancy on, on doing that.

I'm going to figure that out, but we are a podcast.

The audio is per is posted to YouTube.

And so I'd love for you all to check that out.

And especially they have a captions feature.

So I would love for some of our deaf and hard of hearing folks to give that a try and let me know how that captioning feature works.

We're still, of course, going to provide transcripts, but I'd love to know how that works.

So give us feedback.

Sam That's, that's just another outlet that you can stay in touch.

Kimberly Exactly.

And I'll put that, I'll put that link to YouTube in the show notes.

And I've, I've always wanted to say this.

So you all check us out and hit that subscribe button.

Sam Sam Yes, absolutely.

Kimberly So we're, we're, we're hitting the big time now on YouTube.

Sam So it's not that hard, but it means the world that subscribe hits.

It's very important.

Very important to us.

Kimberly Yes, exactly.

Exactly.

So, all righty then now let's take this chance to listen to Sam's interview with Greg Trainor, the accessible hunter.

Music

Sam Well, the accessible hunter podcast is perfect for those who are country men and women or country men and women at heart.

It's not just about honey.

It's about how those with disabilities and special situations, can adapt and adjust and enjoy the great outdoors.

And so, we have one of the two hosts of this particular podcast with us today, maybe potentially the second one, if he decides to chime in here, I will gladly let him in on the party, but we have one of them anyhow.

And so we're going to learn about, their background, how they met their disabilities, how they deal with them in the great outdoors and, some of the, special guests that they've been privileged to feature on their, accessible hunter podcast to this point, which is going strong by the way.

So, joining me direct via zoom from, just outside of Pittsburgh, Pennsylvania is none other than Mr. Greg trainer.

Greg Trainer Well, thank you, Sam.

I sure appreciate you taking time out of your day to talk with me.

And I appreciate, appreciate everything you're doing to let people know that there's different ways to get outdoors.

And I'm really just glad to be a part of your podcast today.

Thank you so much.

Sam We're, we're glad to have you.

And, like, like we mentioned all fair here, you're, you know, you're, far enough away from Pittsburgh to still enjoy the country life, but close enough to, to get there when you need, or, or want to, you said you're about, 20 miles south of the city there, but you gotta be, you gotta be a Pittsburgh Steelers fan, right?

Greg Trainer Yeah, I, I grew up watching the Steelers and, I'm not what you would call a huge, sports fan.

As far as NFL and things and, and baseball, we're, we're having kind of a rough go with our pirates the last, probably 15 or 20 years.

And the hockey team's not doing so good, but I follow it pretty casually, but I'm, I'm glad to be a part of the Pittsburgh community because I know a lot of people love, the NFL and the sports teams and they're, it's just a really good, group of people to be around and a good place to come from.

Sam Yeah, between the pirates and the penguins and, and the Steelers, there's, you know, there's plenty of teams to get behind.

I had a guy from Pittsburgh tell me one time, he was like, Sam, you don't understand, there are, Pittsburgh sports fan, there are other sports fans and then there are Steelers fans.

Greg

So you're, you're right about that.

I used to follow the penguins pretty, pretty heavily.

I had even season tickets.

Me and my wife did for a number of years before COVID.

And I always liked the good works that the penguins did with the community.

They've, they've donated a lot of things and they've gotten a lot of people interested in hockey that could not afford the equipment.

And I know, Sidney Crosby's foundation used to, outfit kids from head to toe, from helmets to skates and really give people an opportunity to try the sport and try to get out.

So they sure do a lot of good work for the community.

Sam Well, I always like to hear about sports teams that are involved and, and get people involved, you know, in their surroundings and get them interested in their sport and what they're doing.

So it's great to hear that the, the penguins are such a great asset to the city there.

Well, Greg, let's talk first since, you know, you're an avid outdoorsman.

You host, you co-host an outdoor podcast.

So talk if you would, about what made you fall in love with the great outdoors and when exactly this happened, sir.

Greg Well, I was fortunate that my dad was a hunter.

he was a casual hunter.

He got into the, the sport later in life himself, but like a lot of people here in Southwestern PA, we, we all go hunting, at least we used to.

And when you turn 12, you kind of go and take your hunter safety course.

And, the first day of deer season, the schools shut down and everybody kind of goes out into the woods with their family and friends.

And, and, it's kind of a family experience, at least that's how it was for me.

So I was introduced to hunting really early.

I started shooting at the range with my dad whenever I was 10 or 11.

And then, as I said, whenever I turned 12, I got my hunter safety course and started hunting, whitetail deer and rabbits and pheasants and squirrels just locally on, on some of the local farms that we had access to, my dad would ask for permission to, to hunt certain places.

And we're also blessed here in Pennsylvania with a lot of state game lands.

I know not everybody's fortunate to have public access and public lands, but here in Pennsylvania, we sure did.

Sam Well, that's, that's so neat.

And the fact that the first day of deer season was, actually a, a no school day in your neck of the woods.

That's pretty awesome about my hometown, even though we do have our, you know, country parts,

Greg it really was Sam.

And, not only did we usually take the first day off because that was, that was a given that was a holiday.

It used to follow the Monday after Thanksgiving, but I would, I'd probably take two or three days and play hooky and still walk and try to do some hunting.

So it was probably the first three days and the first Saturday.

Every year that we kind of look forward to.

Sam

Oh God.

So you were usually off that Monday anyway, and he would drag it out in some cases to Tuesday or Wednesday and just prolong that weekend as, as much as you could get away with.

Greg If my mom and, if my mom and dad would let me, I sure would, you know, I'd, I'd beg and plead if I didn't get a deer that, that first Monday.

And then, you know, as, as I got a little bit older, I started working, you know, part-time in high school.

And I met a really nice guy that was just a few years older than me, maybe five years older than me.

He was really into archery season, archery hunting and turkey hunting.

And, his name is Mark Powell and, you know, he became a lifelong friend, but he really mentored me as far as archery and, turkey hunting.

as I said, my dad was kind of a casual hunter and Mark took it really pretty serious with scent control.

And, and archery is a whole different game when you have to get really close.

And that's when I really fell in love with hunting in the outdoors was archery season.

Sam Oh, and archery rolled around.

Well, that's neat.

It's great that you had such, you know, fond experiences and such great exposure to the great outdoors.

And you still do.

So, you know, we're going to fast forward a little bit now.

And, you know, your incident was, in your, early twenties.

I know we'll talk about that here momentarily.

But before that, Greg, why don't you give us some insight into, what life was like for you prior to, your incident where you go into school or you're working.

What was, what was happening for you in that timeframe?

Greg Well, my injury, I had a diving accident.

It actually happened whenever I was 31. Sam

So I was a little later than I thought a little later in life.

Greg So, you know, growing up, I graduated high school and then I went to Penn State university and I got my bachelor's degree in administration and justice there.

I went to work and, worked, you know, a couple of different, places all over the country.

Really.

I, I worked down in West Virginia and then I worked out in Kansas and up in, Massachusetts.

So I traveled around for my, my job, you know, quite a bit.

I was working with Payless Shoes for about 10 years when my injury happened.

And, I had a diving accident in a lake and broke my neck at the C four or five level when I was 31.

And that really, you know, changed everything to say the least.

Sam Oh, I can imagine for sure.

So which, w which lake was that?

Just curious.

Greg It was on, on Cape Cod in Massachusetts, Glen Charlie pond, actually.

Glen Charlie pond.

Sam Okay, Massachusetts.

Greg Yeah, that it's been 26 years.

I haven't really, I haven't really thought about it.

Sam Yeah, no, you're fine.

I just, I just thought if it was a, if it was a, a big lake, maybe, I would have heard of it, maybe some of our listeners would, but I definitely have it, but, anyhow, so you were, you were 31 when this happened and, let's talk a little bit about, some of the complications that, you had to deal with and sort of fight through in the days, weeks and months, following this incident.

Greg Sure.

Well, fortunately I was, I was with a friend of mine at the time.

And you know, when I broke my neck, everything stopped.

I mean, I didn't have any, any movement whatsoever instantly.

So, I was kind of floating on top of the water and, Matt, Matt Cepas is the guy I was with, he got me over to shore and, they called life flight and they life flighted me up to Boston to Brigham and Women's Hospital.

And, I was in Brigham and Women's over a month.

I was on a ventilator.

I had pneumonia several times.

it was a really touch and go situation.

if I wasn't in the shape I was, I was, I was always athletic.

I had a karate school in high school and, and taught for about five years after high school.

Sam Oh, you taught karate.

How cool.

Greg Taught karate ,was a varsity fencer for Penn state.

And I was, I was really pretty athletic.

And I think that's what would save me even at, even at 31, I was in good shape.

But I spent a little over a month in, in Brigham and Women's.

And then, I was flown down to Georgia to Shepherd Center, which I'm sure you're aware of it, but it's a specialty spinal cord injury hospital.

And I spent several months at Shepherd Center where they really, number one, they, they got me off of the ventilator and they, got me to really learn as much as I could about the spinal cord injury that I had and how I was going to go forward with my life.

And one of the big things that shepherd center did was they had a fantastic therapeutic recreational department and, right, probably two weeks after I was there and got medically stable, they took me down to the gymnasium and let me shoot an air rifle using adaptive equipment.

And I, and I just thought, man, if I could still be able to shoot and get outdoors, that's what I want to do.

but it took me several years after, after I got out of shepherd that I wanted to go hunting again, but that, that always was in the back of my mind that there was a different way to do it.

And the technology was, was available, but it actually took me about 10 years after I got out of Shepherd before I wanted to go hunting again.

And I went back to school and got my master's in rehabilitation counseling and assistive technology from Pitt.

And, in 2000 is when I started Accessible Hunter and I started it as a blog, just to kind of let people know, you know, what I was doing, because when I, when I researched adaptive hunting or, or deer hunting with a spinal cord injury, there was literally nothing out there, nothing available.

So I wanted to kind of document it and it rolled into something, something special.

Sam Absolutely.

I'd say so.

And we'll talk more about that shortly.

So you got your, you know, degree in rehabilitation counseling.

Do you, do you serve as a counselor now in addition to the podcast?

Greg I did, Sam part-time for a while.

I worked at Pitt rehab, for, for a short time.

And what we did was, we did assistive technology evaluations to get people either back to school or back to work.

So if somebody, you know, had a disability with taking notes or reading, we would work on that type of technology to, to get them back.

And, I did that for a number of years part time, but, having a high level spinal cord injury myself, I could certainly empathize with people and knew how important assistive tech was and controlling their environment and getting them, you know, through school and things of that nature.

Sam Yeah.

And you were a tremendous help to a number of folks in that capacity, no doubt.

Now you weren't, like you said, you weren't able to enjoy hunting, for an extended timeframe.

In fact, it was 10 years after you got out of Shepherd, but in one of your podcasts, Greg, I remember, you mentioning that, an organization known as Buckmasters, assisted you tremendously in, getting back out into the great outdoors.

So for those not familiar, talk a little bit, if you would, about Buckmasters and to the purpose that, that it serves and the means by which they eventually made it possible for you to resume hunting

Greg Sure, I contacted Buckmasters probably, like you said, about, about 10 years in my injury where I got strong enough that I wanted to go back out and, they had had a program, the Buckmasters Disabled Hunters program.

And, I just sent them an email and I said, Hey, I'm a high level quadriplegic.

I'd like to get back into archery.

That's always been my passion.

And, what, what can I do?

What, what type of equipment do you guys recommend?

because I had that experience at Shepherd Center with the adaptive triggers and mounts and I thought, well, you know, you guys are, are the leading experts in, in getting people outdoors and back into hunting and, they contacted me almost immediately and said, Hey, we have a mount, a real simple mount that you can attach to your wheelchair and not only are we going to send you a mount, we're going to send you a crossbow.

So they did all of this free of charge to me.

And I was, I was really shocked and thankful for it.

Sam Yeah.

Greg because as you know, adaptive equipment can be so expensive.

Sam Oh yeah.

And, and, and I was just so thankful that number one, they knew a manufacturer to be able to, to get this and they were willing to send it to me.

So they had sent me the mount.

It was really simple, nothing, nothing fancy, but it held the crossbow.

And, me and my, my family, my brother and I, and some other folks would go to the archery range and, and started practicing again.

And I thought, man, I can do this.

I mean, I'm, I'm hitting the target really well.

I'm shooting, you know, 20, 30 yards.

And if, something stands still for me, if, if it's out in my, my zone, which I can move the mount two or three inches one way or the other, and that would translate to 10 or 12 yards at 20 and 30 yards.

So if I could set up where I thought the deer was going to walk into that, that zone, I could actually get a shot at it.

And yeah, I was, I was surprised myself that I was, you know, accurate.

Now, by this time, Sam, I had had a lot of experience archery hunting.

I had hunted a couple of different States throughout the years being able bodied and I wasn't new to hunting.

So it was actually just relearning a way to shoot and aim and, and hunting from the ground in a wheelchair and a ground blind, as opposed to hunting from a tree stand, that was all new to me and different.

And I, I had a big learning curve, but it was so much fun doing it.

Sam And, and well, well worth it.

I'd say what's great that they stick to that, that mounts and, and the bow free of charge.

And I believe Buckmasters is, based in Montgomery, Alabama, right?

Greg I believe so, Sam, I believe so.

Sam And I think I did read that.

Greg And when I got that equipment from Buckmasters, I also contacted a group here in the Pittsburgh area.

It was White Tail Management and these guys did, deer management in the local cemeteries and parks that I thought would be, you know, ideal for me in a wheelchair, as far as accessibility to be able to get out.

So I contacted them and they were more than happy to let me into their program and take me hunting.

And, that year I ended up getting a doe and a nice eight point buck.

and we, we donated the meat and we, you know, were able to reduce the herd numbers, in the cemetery.

So it was a win for everybody.

And I just could not have been, been more happy with the guys in the program.

They were excited that a quadriplegic was able to do this and do it effectively.

You know, I'm, I'm not saying that as a hunter with a disability, we, we can't do it.

We just do it a different way.

And, we're very ethical and, it's, it's just a great program when, folks can do this for, for deer management.

Sam Oh, for sure.

You were probably like a kid in the candy store when you shot that doe.

Greg I, I don't know if you can hear the excitement in my voice or not though.

Sam Well, I still can.

Yes.

Greg When that doe came by, she, she was just walking and she stopped right in that little zone where I had the window and I took the shot and it was, it was a great shot.

She, she almost went down immediately and I was so excited.

You know, we, we called the guys over and everybody was high fiving and congratulating me.

And I said, well, you know, I, I so appreciate everything you guys done getting me out here.

And, Joe McCluskey looked at me and said, Greg, you're not done, buddy.

We, we, we have a buck tag.

You have a buck tag and we, we, we think you can get a buck today too.

So I was just beyond myself when I got a doe and a buck on the same day.

Sam You felt like you'd hit the jackpot.

Greg You know, I was just really feeling that I was back, back doing something I loved and it wasn't, it wasn't like a charity hunt.

It was guys getting together, that I had experienced my whole life.

You know, I, I didn't really know these guys, before I met them, but I felt like I knew them and bonded with them instantly because of all of our shared experiences, Sam.

it was just remarkable and I'm still friends with them all this time, you know, after, and, just you meet the best people out in the outdoors for sure.

Sam No doubt.

And, and it's great that you developed such a camaraderie with these people that you felt like you'd known them all your life, even though, you were just getting to meet them for the first time in many cases.

Now, although you're in, well, just south of Pittsburgh, you proudly host the, Accessible Hunter podcast along with your partner, Mr. Mike Hudson.

The Mike actually resides in South Carolina, Greg.

So tell us how you and Mike first cross paths and, ultimately struck up a friendship.

Greg Sure.

Well, Mike Hudson is just an outstanding guy.

if anybody knows Mike, he is a, retired police officer.

He had a diving accident in his parents, pool.

I believe whenever he was 22 or 23, so he was pretty young.

Sam Oh so, he was in his early twenties.

Maybe that's what I was thinking about a little bit ago.

Greg Yep.

So he, he's actually in June, he'll be paralyzed 30 years and, I just hit 26 years, but Mike, was a Marine, you know, I don't want to say retired Marine because Mike would correct me on that, that he's always a Marine.

And, he has just such a great attitude.

You know, he's a, he's a type A kind of guy that sets his mind to doing something.

And he has a charity down in South Carolina called War Outdoors.

And he's just a phenomenal guy that tries to get as many people out hunting and shooting and fishing that he can.

And, thanks to the internet, you know, we were crossing paths on a lot of, a lot of different, sites and mutual friends and things.

And Mike and I have been doing podcasts, probably.

I want to say at least probably seven years.

we've been friends probably, I don't know, maybe 15 years.

And, it was a shared bond because we went through so many similarities.

He had also went to Shepherd Center, but at a different time.

And, Mike went back to school, got his masters and, he's a, he's a man of God.

He, he believes in helping people and, just, a great guy.

So he and I clicked and one of, the big things that we try to do is just encourage people all we can to get outdoors, whether it's hunting, fishing, just getting out with your family, getting out of your home and enjoying yourself.

You know, it's a, it's a great, great thing that I get to talk with Mike.

And, I'm sure glad that he's my friend.

Sam Well, it's a great duo for sure.

And, it's wonderful that you've developed, such a, friendship and, and such chemistry on the podcast.

Now you actually started the Accessible Hunter show solo, didn't you?

Before Mike came into the picture.

Greg I did, I started it and it wasn't very long though, that I, I pulled Mike in because he brings just such a wealth of information.

And, when you're talking with Mike, it's, it's always a good time.

So I did start accessible hunter, from a blog.

And then that rolled into my Facebook page.

And then that rolled into the Accessible Hunter podcast.

So accessible hunter was, you know, my creation, it all started from the blog.

And my, my desire to share my story with people so that we're not always reinventing the wheel, you know, we, we all have great ideas.

And if we can collaborate on things, you don't have to think everything up yourself.

There's always somebody that's doing it, maybe a little bit smarter, a little bit better.

And I thought we could all learn from each other.

Sam Yeah.

And a lot of the greatest ideas that have ever been established have been team efforts.

So it's great that, you know, you got that little community with the, with the podcast and it's going strong.

Greg You know, Sam, it's funny.

We always say that the disability community is a small community.

You know, you know, people by reputation, it doesn't take long to, to find out who's trying to manipulate a system or something like that.

And Mike and I have both been blessed to, hook up with some great, great people like Robin Clark, who, who runs the Virginia, wheeling sportsman and, just different guys throughout the country.

Robin, he's, he's been hurt, I think 50 years.

so he, he's a wealth of knowledge and then younger guys, you know, like Chad Wallavira down in Texas that runs Able Outdoors.

we're all trying to do the same thing from our, our individual parts of the country, but thanks to the net, you know, the ability to use assistive technology, we all get on and talk.

And if somebody wants to go hunting in a different state, or if we meet somebody that's newly injured and they want to go out west or what have you, we, we generally say, Hey, I got a guy for you to talk to, or I've got a girl for you to talk to that can help you out and point you in the right direction.

So it's definitely a small community.

Sam Yeah.

So clearly it's been a blessing to an awful lot of people.

Now, we could technically, I guess, devote an entire show to, this particular discussion point, but, as far as some of the disabilities that have been represented, by guests on your show, talk about, a few of those, if you would, and maybe, some of the most fascinating means by which they've, coped with the disability and, and conquered it in their efforts to, make the most of the hunting realm.

Greg Sure.

well, recently we've, we've had a guest on Aaron Ritter, who is a person that had, limb loss.

He lost, he lost a leg and, Aaron was, was in the military, was in the Navy and, his injury isn't service related, but he does a lot of, outback, like deep in the woods, camping and hunting and, and things like that.

And Aaron's just a fascinating guy.

so we, we had him on and then we had a double amputee on Cam Triblett and, Cam, was actually, carjacked and shot and he ended up losing both legs and Cam worked with, Buckmasters.

I didn't know it, but Cam, Cam worked with Buckmasters and was probably one of the guys that sent me the original equipment, you know, many years ago.

And then we've, we've had, had on different, different ladies and, people with spinal cord injuries and people that have lost their vision.

We've had a couple of people that are blind on and that's always a fascinating, you know, disability to deal with in the outdoors because I think there's maybe a little bit of prejudice or hesitancy when, when somebody is, is blind and you talk about using a firearm or a bow and, well, how does this person hunt?

And, it's really a team effort where they, they put a scope attachment on, either a smartphone or they have different screens that go on over top of a scope.

And then their partner sitting with them will kind of touch them on the back or shoulder and kind of make movement without, without talking of up, down, left or right.

And when that animal is in focus and where they need to pull the trigger, then they give them a double tap on the shoulder and the person can fire the crossbow or the rifle.

And they're highly successful, but that's a great example of where teamwork comes in.

Sam And so it's all about those nonverbal cues.

Greg It is Sam and you know, no matter what disability we're dealing with, all of us need some type of assistance.

I'm fortunate enough that I get a lot of assistance from my wife when we go hunting.

She's, she's not really a hunter, but she does everything for me.

She gets me all set up and she'll sit and take pictures and we can, we can have a great time hunting, but as people get older, you know, if you have an older parent that is, you know, disabled or not able to walk very far into the woods and things like that, sooner or later, we're all going to need assistance outdoors.

So we try to encourage people to do everything that they can, but to ask for help, don't be afraid to, to ask for it.

And it can really, can really be beneficial to not only you, but a lot of times when you're helping somebody, you know, you get a lot out of that as well.

if, if I'm able to help somebody and get them on an animal and, and get them out, then I actually feel probably more excited than they do sometimes.

Sam Yeah.

It gives you a great sense of pride and gratification, doesn't it?

Greg It does.

It does, Sam.

And, you know, we all, we all take care of each other in some way.

And, it's just good to be a part of a community where you give back, because so many people have been there for me.

So, I enjoy it.

I really do, buddy.

Sam Absolutely.

Now, you know, you mentioned, you know, what a big help your wife is when you're hunting and that special mound that you use courtesy of, Buckmasters.

Is there, any other specialized equipment that helps you to hunt more easily and effectively?

Greg Sure.

Well, several years ago, I, I upgraded my mount.

there's a company in Indiana called Be Adaptive Equipment, and, they've just been phenomenal as far as producing high level mounts and sip and puff triggers.

I don't know if you're familiar with, with that or not, Sam.

Sam Sip and puff triggers.

I can't say that I am.

Greg Okay.

they have an electronic trigger that you can plug into the USB port on a power wheelchair, or if you're in a manual chair, you can hook it up to a little 12 volt battery.

And, it acts like a, like a car door lock on, on your cars.

it's an actuator that when you take a sip on a straw, it activates and pulls the trigger straight back.

And as many times as you suck on the straw, it'll keep pulling the trigger.

So if you have a semi-automatic 22, you don't have to reload.

You can just kind of keep shooting or, or a high power powered rifle, or even a shotgun.

If you haven't a semi-automatic shotgun and it really is, and they have done so much to donate to groups and charities to get this equipment out for people so that not only an individual can use it, but the entire organization can take multiple people.

So I've been using a, be adaptive trigger, a sip and puff trigger.

And then I designed a mount, my buddy welded it up for me.

And I've been using that the last seven or eight years that works specifically for me, but be adaptive makes a ton of equipment, a ton of mounts and even fishing equipment that can hold your fishing rod and things like that.

and the other big thing is there's multiple companies that do track style wheelchairs.

so that's a huge part of getting in the outdoors because you and I both know mother nature is not generally ADA compliant.

These track chairs will go, you know, like a small bulldozer almost anywhere that you want to want to get them.

I mean, I'm sure you could get it stuck or if you were careless with it, you could probably tip them over and things like that.

But, there's several different makes and models available.

Action track makes a great chair.

I, I currently have a, a track fab that's made in PA.

a buddy of mine, makes the echo Rover.

it's, it's another, another great chair.

And I think when you're trying to purchase one of these chairs, you want to look at, you know, have, has the company been around a long time?

Do they have a dealership close to me?

What's their, their track record, that kind of thing.

Are they able to fix it when it, when it breaks?

Because there's no real funding for these.

a lot of people will fundraise on their own and do go fund me accounts and things like that.

But the equipment's really expensive.

It can range in between 10 and $20,000, depending on rehab seating and things.

So it's a huge investment, but I definitely could not get out as far as I do in the woods without some type of tracks track style wheelchair.

Sam So the point here, boys and girls, where there's a will, there's a way.

Greg Absolutely.

Yeah.

Sam And for all you avid hunters and fishermen out there that need specialized equipment, remember, be adaptive.

And you said they're in Indiana.

So I guess Indianapolis are thereabouts.

Greg I believe so.

And it's a family run business.

Jacob and his parents are doing it and his brother and, you know, they're, they're always available if you have questions and things and they're, they're on the internet and everywhere, social media, but just a quality company that they probably are the world's leading producer of this type of equipment.

But when you call, you either talk to Jacob, his brother or his mom.

It's not, you know, overseas.

It's not something like that.

Sam You're not having to sit through a menu and punch in a bunch of numbers.

Greg No, sir.

And, you know, if you're going on a hunt and something, you know, breaks while you're practicing, they try to get you out the equipment right away.

And, I've had several instances where I said, Hey, I'm, I'm going on a hunt.

I want to have a backup trigger.

can you, you know, get it to me right away?

And they do.

And, I'm not, I'm not trying to do a commercial for them.

They're, they're just, they're great people.

And I appreciate what they do.

Sam That's a testimonial from personal experience, which is always the, the best advertising it leads to me for sure.

But, anyhow, folks make sure that you, take a listen to the Accessible Hunter podcast with Greg trainer and Mike Hudson.

And we do need to mention, before we call it a day here that, just as of a few weeks ago, maybe a month, the show was picked up by the Outdoor Call radio app.

So for those not accustomed to that at this point, give us a little feel for the outdoor call app, Greg, and all that it has to offer now, of course, including your podcast,

Greg Sam, I was really surprised.

I had been listening to Dan young and his outdoor radio show, a couple of years really, and he does, you know, great, great, interviews with people and just an outstanding guy.

And I'm sitting in my house just a couple of weeks ago and Dan contacted me and he said, would you like to be on the outdoor radio call app?

And I'm like, I was speechless, Sam.

I didn't know what to say.

I was like, absolutely.

Sam It took a few seconds to muster up a yes.

Greg It really did.

You know, when, when somebody catches you out of the blue and says, Hey, I've been listening to your podcast and we think you have something to offer a greater audience and we'd like to have you on the show.

And he said, we're going to, we're going to put you on, on Mondays with a couple of other podcasts and it'll be a rolling event every Monday.

It will feature a different podcast you have.

So, I was shocked and just thankful that somebody's, you know, getting a benefit out of it.

It really made me feel good.

And of course I contacted Mike right away and he was thrilled and we've been on the outdoor call radio app now two weeks and we're, we're excited to be a part of it for sure.

Sam Absolutely.

So every Monday, you folks, if you download the app, you can catch the accessible hunter podcast.

Do we know what time on Mondays or does that vary?

Greg It varies them because there's two other podcasts that they feature on Mondays and I think it's just a rolling start.

Sam So when one podcast ends, another one, another one starts.

Okay.

So, but, but this app is, it's a must if you're an avid outdoorsman because it's outdoor talk 24 seven, isn't it?

Greg It is.

And they, they do a great job and there's some really awesome podcasts on there and people that I've followed for years and just down to earth people, you know, that kind of enjoy what, what I enjoy.

And I like listening to them.

It's nothing, nothing, nothing crazy.

It's all, all about the outdoors and people enjoying it and trying to get out.

Yeah.

Sam You know, you've got something in common with the listeners and hosts just in your love of, of the outdoors.

So definitely worth checking into if, if you're a true fan of hunting and fishing to say the least.

So, looking ahead, bike, you know, it sounds like, you've got a great thing going with the podcast that the future is definitely looking bright.

Do you have, any goals that you might have set for yourselves in the not too distant future that, you'll be working towards?

Greg We, we do.

we're, we're actually branching out a little bit with an accessible pursuits podcast and accessible pursuits.

And, and that that's going to allow us to talk with people just about what they're doing in their everyday life, what their pursuit of happiness is, and not, you know, just concentrate on the hunting side of it.

So as far as podcasting, we're, we're trying to get that started.

We've, we've only done a couple of episodes of that, and, we're looking forward to talking with more people that may not, you know, focus on the outdoors so much, but maybe going back to school or, or their, their goals of, of adaptive driving or, or what have you, I think it kind of opens up the outdoors or opens out the audience a little bit for us.

and, first week in May starts turkey season here in PA.

So I'll be doing some of that.

Sam you got to partake in turkey season.

Greg Yeah.

Yeah.

So I'm looking forward, looking forward to that.

Sam So keep your eyes open, the ears peeled folks for the accessible pursuits podcast in the near future that will deal with, you know, the endeavors of folks with disabilities outside of, outside of the outdoors, shall we say.

Greg I might steal that for a tagline saying that's, that's pretty good.

Sam Oh goodness, just sort of rolled off my tongue, but anyhow, we'll, we'll be sure to keep you folks posted when the, when that comes out and the debuts as well.

But as for the accessible hunter podcast, obviously we mentioned the outdoor call app that, you can download and listen to it there every Monday.

I assume the podcast is available, through most of the other traditional directories as well.

Greg We, we are on YouTube and we're also on Spotify and, you can either watch us or, or listen to us.

and of course we're on, we're on all the social media, stations, podcasts and on Facebook and, and Instagram and things like that.

Sam Perfect.

And, what I've observed accessible hunter comes out, is it once a month or thereabouts?

Greg Well, we, we try to, we try to post, really a couple of times a week on Facebook, but our podcast we do about once a month.

And then of course, every Monday on the outdoor call radio app, we, we sent Dan about 14 episodes that we thought people would enjoy.

So every Monday you can check out a different one there.

Sam You can check out a different episode each week on the outdoor call app.

And, of course you can also find him on the net.

Like we said, which I know I've been using an email address.

It's different than the one on your accessible hunter Facebook page.

So which, which email address would you prefer that patrons reach out to you with questions that they might have as far as what we talked about today?

Greg If they would like to email me, they can email accessiblehunter@gmail.com or message me through, the accessible hunter Facebook app.

I mean, yeah, Facebook, accessible hunter, but accessiblehunter@gmail.com is a great way to get ahold of me.

Sam Could not be any easier than that.

Well, Greg, thanks a bunch.

It's been very insightful and enjoyable.

I hope you've enjoyed chatting with us.

Greg Oh, Sam, it was wonderful talking with you.

And I truly appreciate you taking time out of your day and having me on your podcast.

And I'm looking forward to listening to more of yours and, and, staying in touch and, and seeing what we can do to help each other in the future.

Music

Kimberly Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.

Our executive producers are me, Kimberly Parsley and Dave Mathies.

Our sound engineer is Michael Parsley.

Thanks to Chris Ankin for the use of his song, Change.

Don't forget to follow or subscribe so you never miss an episode, and please consider leaving a review.

You can find links to our email and social media in the show notes.

Please reach out and let's keep the conversation going.

Thanks everyone.

Visit Dr. Scoresby‘s ongoing website project at Hearinglossimpact.com

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Be sure to follow the Advocado Press Facebook page

Visit Appalachian Assistive Technology Loan Fund for assistance.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

AI Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability. Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley. Sam Moore And I'm your co-host, Sam Moore. Kimberly, it is hard to believe it is already April. Kimberly Parsley It is, it is hard to believe. Sam  Moore And it's spring and all the pollen is blowing around. Kimberly Parsley It's, yes, it's dusty and yellow out there, I hear. Sam Moore And as we currently speak, the floodgates continue to be open, but, uh, you know, we're, we're staying high and dry so far. Me in Henderson, Kimberly in Bowling Green. So that's right. That's what counts for us at least. Kimberly Parsley We are, we, we are doing well right now. Sam Moore So that is, that is great. Um, we hope everybody else is staying above water too. Kimberly Parsley Indeed we do. So I have a wonderful guest today. Her name is Dr. Kristle  Scoresby. She is an assistant professor in the college of social work at the university of Kentucky, and she is also deaf and she talks about cochlear implants and she talks about her research and applying what she's learned in her research to her social work. So a wonderful, wonderful conversation I have with her and you know, something she said got me thinking,  as you do. And  this, this episode I entitled “Who gets to decide what's reasonable?” And you know, we talk about that phrase reasonable accommodations and so Sam, I'm wondering, has anybody ever in, in your time, either as a student or an adult working or, or anything anywhere questioned the reasonableness, if that's a word  Sam Moore if it's not a word, we can make it, we just made it a word of a request for accommodations that you made. I mean, heck with the Webster's dictionary. We're going to have the Moore-Parsley dictionary here. Keep your ears peeled eyes open for that folks, but anyhow, yes, everybody's interpretation of reasonable seems to be different and I'll tell you my, my college experience at Western Kentucky University was overall great. I'd say 98% of my professors were at least decent, but there's, there's always one or two bad apples. My worst apple was my freshman year. It was a broadcasting class. It was not the intro, but the next one up, which was 201. I think they kind of considered that a weed-out class at the time. Cause you know, if you, if you got through that, you most likely stayed in the major and then did well. But  if you struggled with that class, you know, chances are you were, you didn't try to repeat it too many times and you just switched your major. But anyway, I had a, we had to watch a video of choice and we were given a list of several to choose from, and we had to write a report about the video. So the first one we tried to watch, um, it was, uh, it was too visual in nature, and my program assistant, Trish, she was trying to watch it with me and describe things for me, but she was like, finally, yeah, she goes, you know, this particular video saying, it's, uh, it's going to be hard for you to get much out of without being able to see it. And I said, well, I kind of think you're right after about 30 minutes of this thing. So my professor made another suggestion of a video that was more doable. And it was, but it was late in the game when we got access to it. So, I watched the film, um, you know, I asked for a little extra time on the report since we were late in getting our hands on it and, um, she, uh, she said, well, if I don't have it from you, uh, by the end of the day, I'm going to give you a zero on the paper because you've known about it forever. So, uh, I went home, well, my dorm and worked my tail off on this paper. I had it done about three the next morning. So the next day I slipped it under her office door while she wasn't there. And, uh, I think I knew she wasn't going to be there that day. So I thought, well, you know, for all she knows, it could have been there the very night after we talked, so we'll be okay. And so I, uh, next class period, I went up there to her. I said, uh, I left my paper underneath your office door, did you get it? She goes, yeah, I got it, and, um, I think I'm going to award you half credit for tardy completion. That's what she did. And, uh, shortly there afterwards, I was a little concerned about my grade in the class as a whole, so I went into her office to express my concern, and, and she goes, well, you know, Sam, there, uh, there are colleges out there for the blind and I didn't say it, but in my mind, I'm thinking, yes, ma'am, I thought this was one of them. Kimberly Parsley Wow! So, uh, you know, that's just, that's just a jerk move right there. Sam Moore It was, uh, but it made me appreciate the good professors I had for sure. Kimberly Parsley And, um, and you remember, you remember her name. I do remember her name and like, like we were talking about before we went on the air, you know, it's funny how the, the ones that give you problems, you always remember their names,  Kimberly Parsley The rotten apples. Sam Moore the rotten apples you remember, right? Kimberly Parsley Would you like to out her right now? Because I'm for that. Sam Moore Well, I guess I'll be nice and. . . Kimberly Parsley You're nicer than me. Sam Moore I'm just, you know, somebody who knows somebody is listening. Kimberly Parsley I was willing to fight for justice for you, Sam, but. . .  Sam Moore I appreciate that. But now she's, uh, she's not even in the broadcasting department anymore at Western. She, uh, has moved on to a different school, so I guess I'd have a little more wiggle room, but you know, I'll just, uh, I'll just say that, uh, I got through it and, uh, you know, as they say, what doesn't kill you just makes you stronger. Kimberly Parsley So my time at Western was overwhelmingly positive. I did have one, a sociology stats professor who was kind of a jerk. Sam Moore There's always at least one. Kimberly Parsley There's always at least one. Yeah. He was unwilling to make accommodations until forced to do so because he thought any accommodation was unreasonable just because it appeared to, I don't know. Sam Moore I guess he thought it created an unfair advantage. Kimberly Parsley Well, yes, yes, that's it. He thought it created an unfair advantage, which is, and that's, that's the crux of that word reasonable because it's baked in it's like, okay, all you disabled people, you know, don't you be asking too much because already we think having to change how we do things is unreasonable, you know? So it kind of feels like there ought to be air quotes around that word anyway. So, um, I hate it. Sam Moore Yeah, we, we could do a whole, we could do a whole podcast on the interpretation of reasonable. Kimberly Parsley Yeah. Well, uh, Dr. Scoresby talks about it. She's, she's so smart. She talks about it in this interview that I did with her. So who gets to decide what's reasonable. That is the title of this episode because of something Dr. Scoresby said, and she's so smart and intelligent. Sam Moore Now since she's deaf, when you, when you asked her a question, did she like type her response and is that how it works? Kimberly Parsley No, she actually has cochlear implants now. So she has a cochlear implant and she uses a hearing aid, uh, on, on one ear. So she can, she can hear now, but without her augmentations and things, she is,  completely deaf. Sam Moore Very interesting. Kimberly Parsley But I'm glad you asked that because I am willing to do interviews however I have to do them. Sam Moore You know, whatever we got to do to get information out of people. Kimberly Parsley Yes. I mean, she, could talk and things and that, but if any one who is deaf and well, I did the nonverbal princess. Sam Moore Yeah, The actor actress. Kimberly Parsley Yeah. Sam Moore Yes. So we, we will accommodate anyone. Kimberly Parsley No accommodation is unreasonable for us. Sam Moore We'll do what we can to, to get a good story out of anybody that has a good story and who's a good fit for the program. Kimberly Parsley That we will, Sam, that we will. And so now we will hear my interview with Dr. Kristle Scoresby. Kimberly Parsley Welcome Dr. Kristle Scoresby to demand and disrupt. How are you? Dr. Scoresby Thank you. I'm good. How are you doing? Kimberly Parsley I am doing very well. Thank you for taking the time out of your busy schedule to talk to us. Dr. Scoresby You're very welcome. I really appreciate the invitation to be here. Kimberly Parsley No problem. So I did a little introduction of you at the beginning, at the beginning of the episode, we're mainly going to talk about issues relating to deafness and hard of hearing, so can you just start by telling me a little about yourself? Doctor Scoresby Yeah, sure. So I am new to the state of Kentucky. I am an assistant professor at the university of Kentucky in the college of social work and have been a social worker for many, many years, but after being in the field for a long time, and was coming across increasingly complex cases, you know, I would try to turn to the research to, to know how to help some of my clients, and I was frustrated with my inability to access research or even know how to apply it, and so I made the decision to go back to school after being in the field for 17 years to get my PhD, to learn how to do research. And so I graduated from the university of Tennessee in Knoxville with my PhD in 2023 and then came to Tennessee. So I've been in the college of social work here where I am doing research and teaching in the master of the social work program and just having a great time. Kimberly Parsley Wonderful. Well, welcome to Kentucky. We are happy to have you. Doctor Scoresby Thank you. Kimberly Parsley And as with blindness, you know, I understand that hearing loss exists kind of on a spectrum and is rarely ever, you know, straightforward, so tell me about your personal journey with hearing loss. Doctor Scoresby Yes, absolutely. And you're right. It's not everyone's story is different and how not only about the actual disease itself, but about how we feel about it and how we identify and how we accommodate. Like all of our stories are different. So for me, I had genetic sensory neural hearing loss, so I have nerve deafness, and so my hearing loss started at age four before school. Well, hospitals back in that time did not do newborn screenings and rarely did schools do screenings, but my mother, who also has a hearing loss, wanted me to be screened because she noticed I was struggling in responding and would say “what” a lot. And, and so she got me tested by the school district, so that's our earliest test that diagnosed me with hearing loss. And then it's progressive, so I lost as I aged, I lost a little bit of time, a little bit at a time, a little bit at a time until hormones from pregnancy, my first pregnancy took my hearing loss from at the time it was severe and it just dropped like all the rest. I lost all the rest overnight. Kimberly Parsley Really? Dr. Scoresby Yes. So, um, I became profoundly deaf. Kimberly Parsley Was that something that you expected from pregnancy or was that kind of a shock? Doctor Scoresby Yeah, that was a shock. And, that was not necessarily the trajectory of other family members who had experienced hearing loss and pregnancy. So I was not fully expecting that. It was, it was actually really scary because, you know, I was trying to seek medical care for, for pregnancy and, and I couldn't even understand what the doctors were telling me. Uh, so it was just a really stressful time and we didn't have, you know, phone apps at the time that could live caption conversations like we do now, and there was, there were some really stressful things in navigating. And I was still employed. I was still working and still trying to be a social worker. Uh, so I'm a clinical social worker and would try to, you know, navigate conversations with clients and so having that drop in hearing was just a really, really significant challenge for me. But three years after that, and after many, many, many, many insurance battles, uh, I was able to get a cochlear implant. And so I am considered bimodal now. So I have a cochlear implant in my right ear. I still wear a hearing aid in my left ear. I have very little hearing in my left ear, but it helps balance out some of the high tech sounds, of the cochlear implant, because it can be, you know, high frequency robotics that's hearing through a computer. And so it's just for me, I really love having that, that little bit of, um, balance from, from amplifying the teeny little bit of hearing that I have left in my left ear. So between the two, I do really well in quiet environments. So in optimal listening environments where there's no background noise, you know, I can see a person's face. I can read their lips. I can read all of the visuals and all of the cues. I do really, really well in those situations. But the second you start to implement background noise or more than one person talking or the speaker is farther away from me or has a strong accent or their face is covered, then my ability to hear drops substantially. Kimberly Parsley Really? Now, what year did you get the cochlear implant in? Doctor Scoresby 2012. Kimberly Parsley You're the first person I've ever talked to who, I think, who had a cochlear implant, so do you want to tell us about that process? That's a relatively new sort of medical advancement, correct? Doctor Scoresby Well, it's actually been around for quite a while, but it's now considered standard of care. Kimberly Parsley Oh, okay. Doctor Scoresby Yeah. The technology has advanced quite significantly, but there's also quite a bit of, I guess, maybe tension, for lack of a better word, between who should be implanted and who shouldn't, and so, you know, when a child is born deaf, there are many advocates who say, let's have that child learn sign language from the get-go, and then there are advocates who say, let's implant that child so that they have access to sound, and then you have this third group that's like, let's just get this child all of the languages possible. Let's do both. So there's some difficult things also when it comes to cochlear implants. But for me, it was definitely the right choice for me because I had been working and participating so much in the hearing world and was used to accommodating my hearing loss, but I was oral, so I used speech, so I never learned sign language, so having a cochlear implant for me was, has been a miracle every single day. Kimberly Parsley It's a miracle. Doctor Scoresby The fact that I can hear you and hear these questions, for me, it's a miracle. So I, I'm very grateful for my implant. I will tell you is not a cure, an instant cure. I, after being implanted, spent weeks and weeks and weeks and months on auditory rehabilitation to retrain my brain to hear. And so, you know, when that, when the implant was first turned on, you remember fax machines, right? Kimberly Parsley Oh yes. Doctor Scoresby Oh, for me, when people spoke, I didn't hear human speech, I heard beep, beep, beep, beep, beep, beep, beep, beep and so I had to go through rehabilitation to turn those beeps into human speech. It was a lot of work for me. Um, I was so determined to be successful. I put in a great amount of effort and it took after about six weeks of all my rehabilitation, environmental sounds started turning, like I was typing at a keyboard and instead of like beep, beep, beep, it became click, click, click, like a keyboard sounds and then eventually human speech, which was, that was, that was the last thing to turn. It turned for me, so now I can understand it as human speech, but it was quite the process. Kimberly Parsley Wow. And where did you do this, the rehabilitation work? Where was that done? Doctor Scoresby So I have my surgery done in Utah and rehabilitation work I did there, and, um, a lot of it was listened through these listening tasks at home. Kimberly Parsley Now, when you're going through the rehabilitation process and so you have the implants, this may be a stupid question, but do you ever get overwhelmed? And if you do, can you turn off the implant? Doctor Scoresby Yeah, that's a good question. And the answer, the short answer is yes. Kimberly Parsley Oh, good. Oh, goodness. Doctor Scoresby Yeah. Kimberly Parsley Because that just seems like that seems so torturous. If you can't, you know, that would be horrible. Doctor Scoresby Yeah. As a matter of fact, my kids are so funny because they're like, when I say, when I tell them, I'm like, you guys are being too loud, quiet down, And they say, just take off your ears, because I did, I take them off at night. I also take my ears off when I really need to focus. So part of my job is writing you know, publications and manuscripts and I have to be really, really focused, and so I take my ears off when I need to hyper focus so that I literally have no sound coming to me at all. Kimberly Parsley Okay. Doctor Scoresby Because there's just so much, there's so much listening fatigue that comes from having to hear and having to listen, so shutting off that ability allows me to engage my brain fully with what's in front of me instead of devoting so much cognitive energy to listening. Kimberly Parsley Yeah. So when you say, say you take your ears off, you take the left hearing aid, off right? Doctor Scoresby I take my left hearing aid off. I might take the external processor off of my cochlear implant. Kimberly Parsley Oh, okay. Okay. Doctor Scoresby There's two pieces to cochlear implants. There's an internal device, which is implanted inside your cochlea, and then there's an external device that you remove on and off and it's connected through a magnet to the internal piece. And when those two devices connect, that's when this, the microphone works and the sound comes up through the coil and, and bypasses into the internal device through radio signal and then sends the information and the sound down through the electrode array into the cochlea and allows you to hear. So, so that is connected through this magnet of my external processor. So I can take off the external processor. Kimberly Parsley Oh, okay. Oh good. My, my world is, is very different. I'm always relying on sound, but I, I totally know what you're saying about when you're focused, because for me, I hear things all over the house. Like I can be in one room, but I'm basically  in a way present in another room. A friend of mine calls it the brain tentacles. You know, it's like just, just having a brain sort of everywhere. And like, I can tell you where everyone in my house is or what  room they're in and basically what they're doing, because if someone goes out of a room into another room, I know that, and it's not just like, Oh, I heard that it's like, an internal shift in my brain. It's like, I'm mapping everyone. Doctor Scoresby Energy that you're using. Kimberly Parsley Right? Exactly. Yes. Doctor Scoresby Yes. No, because you have to rely on all of those visuals when you, I'm sorry, auditory cues, you're not able to see anything. Kimberly Parsley Yeah. And, and I think it comes from also, I think I've said this before, but it comes from parenthood where you're always on, you know, you're always having to pay attention, so I think it, it's an effort to be able to turn that off. Like now they make, you know, headphones with noise cancellation and thank God for them. Doctor Scoresby Yeah. Interesting. All that is interesting. Kimberly Parsley I don't think I've ever talked to anyone about their cochlear implants before, so thank you for that. Doctor Scoresby Yeah, of course. Kimberly Parsley How are some ways that you navigate through the world? I know you talked about the cochlear implant, so how are some other ways that you navigate through the world with hearing loss? Like, I, so do you want to tell people how we're, how we're having this discussion now over zoom? Dr. Scoresby Yeah, sure. I, yeah, I, I use, I employ so many accommodations. So for me, I feel like I'm always on as far as if I'm listening to you, I am going to do everything in my power to hear you because the person I'm talking to matters to me and I want to hear them. So I use captions all the time. I'm using captions in this zoom right now to, to be my backup in case there's something I miss from you. If I don't hear it auditorially, then I can listen or I can read the zoom. So I put captions on everything. It's on TV. If I use it, even if I'm, you know, watching some type of video, I put it on. As a matter of fact, I get really frustrated with how far technology has advanced and there's captions that are free everywhere when, when something doesn't have captions, I, I'm pretty frustrated. Kimberly Parsley Um, yes. Yeah. Doctor Scoresby And I do, I have an app on my phone that will caption things if needed. So I always have backup to my backup. Kimberly Parsley Oh, what's the name of the app? What's the name of the app on the phone? That'd be great. Doctor Scoresby Oh, there's, there's several.  yeah, I use Otter AI, um, like transcribe app. My mom also has deafness and she has an Android. I use an iPhone. So Otter works best for me, but she uses an app that it just comes along with the Android, and all she has to do is just touch a button on her home screen and it starts captioning any live conversation around her. So I do, I use that. I use assistive listening devices. So there are, you know, there's a device called the contact. There's several different types of listening devices, but I will use that to amplify the hearing that I have. Bluetooth is set up through my cochlear implant and my hearing aid and through my phone. So I will use Bluetooth, which automatically streams directly to my hearing devices. I ask people to move their hands away from their face so that I can see their lips and I will read lips and, um, I will intentionally go into a room early so that I can see what the listening setup is, and I will try to sit in the best seat possible. I try to guess where the speaker's going to be standing or sitting, or if they're going to be someone who's moving around a lot to try to like place myself in the best position to be able to see them and have access to them. If they are going to be moving around a lot and they're going to have a difficult voice for me to hear, then I will ask them to wear a mini mic, which is another form of assistant listening device that works with my cochlear implant.  So I could keep going, but there's lots of different things that, that I utilize to continue to navigate the hearing world. Kimberly Parsley Great. Lots of, uh, I did not realize there were so many tools in that particular toolbox. So that is great to know. Doctor Scoresby Yeah, there are. Kimberly Parsley Yeah. You mentioned accommodations. I have, I listen to a lot of podcasts that are from Great Britain and I don't know why they just sort of show up in my feed and whereas here in the United States, we call it reasonable accommodations, they call it reasonable adjustments. I like that so much better. Do you, what do you feel about that? Doctor Scoresby Hmm. Reasonable adjustments. You know, I do have to say the first, I do feel a little bit triggered by the word reasonable. Kimberly Parsley Yes, me too. Me too. Possibly that's the word word we should be talking about. I feel like, I feel like the, I feel like the unspoken is what we know you would try to get away with more if you could. Doctor Scoresby Oh my gosh. Kimberly Parsley You know, do you, is that how you feel like there's a mistrust in it? Inherent in that word? Yeah. Doctor Scoresby Yeah. I can't even believe that it's simple things in which I'm like, okay, I need this to hear and somebody, somebody can say to me, an employer, for example, an instructor can say to me, oh, that's not reasonable. Well, how do you know? What is reasonable for me and what's not, you know? Um, I will have to say, I do appreciate, I do appreciate when folks are open-minded and they're willing to listen to what I think is a reasonable accommodation for myself, because I'm not trying to take advantage of any system. I just want to hear you. Kimberly Parsley Right, right. Yes. Yes. You're right. That's the word reasonable that we really should be pushing back against that. I think we're just so grateful to have anything that we're like, well, we're not going to quibble, but yeah. Doctor Scoresby And we are grateful, of course we're grateful, but at the same time, you know, I just, I think about Judy human. Kimberly Parsley Ah, yes. Doctor Scoresby Uh-huh. Like, I'm tired of having to be happy to have an accessible bathroom. Kimberly Parsley Right. Doctor Scoresby And, and just, yes, of course I'm going to be grateful for anyone who's trying to make an effort. But if I'm working so hard to hear you, I do need you to make a little effort. And if you refuse, or if you take that opportunity and make me feel like I'm just trying to take advantage of a system, then that, that just becomes really frustrating for me. So the whole, the whole reasonable, I don't see why others are able to say what is reasonable and what it's not. If they've never experienced this disability. Kimberly Parsley I love it. I love that you said that. Thank you so much. Doctor Scoresby Yeah. And let me give you, let me give you another, a quick example of when it works. So my, so my Dean is very willing to work with accommodations. And so I told him once I said, zoom's not working very well for our faculty meetings and I need cart and cart is a live transcription. So a person is there listening to the audio and transcribing it so that the words are in front of you. So it's not AI generated. It is human generated. I said, I, I need, we need cart and there was no question for him. He said, okay, tell me what cart is and I will get it. You know, he didn't know what cart was. So he didn't push back and say, um, I, that's not reasonable. We already provide you with zoom. He didn't do that. You know, he just said, okay, I might not know very much about this, but yes, let's do it if this is what you need. So he trusted me to know what I needed and supported me in that. That's what, that's where I think we should go in terms of disability is we're the ones with a lived experience. Trust us. If we say we need this work with us. Kimberly Parsley Yeah, I think so many times we feel like, I think, I know with me starting a new job or just whatever, I felt like I just needed to shrink myself and try to get by with what I had. You know, I think as you get older, you're a little more willing to ask for what you need. I would, I would not go back to being college age Kimberly because I was, I was scared, I was unsure, you know, so those, uh, those, those times are hard. Doctor Scoresby Yeah. And it's, it's really difficult to advocate for yourself. Kimberly Parsley It is, it is. So there's some terms interpreting and then transcribing and then like translating. So can you tell me what, what terms we're talking about when we say those things? Doctor Scoresby Yeah, sure. So, so interpreting usually refers to sign language. So, um, American sign language interpreters are needed when a deaf person who relies on American sign language is talking with a hearing person who does not know sign, so an interpreter is needed to translate, uh, what the hearing person is saying, um, into sign language and then what the deaf person is signing into oral speech for the hearing person. So that's captioning and transcriptions. So they, they're similar in that they're taking an audio and putting words to the audio, but a captioning and subtitles is usually associated with the words going along with some type of video. So there's some type of visual. So for example, in this zoom screen, it's captions because I can see it right now during this interaction that we're having. Uh, a transcription is not necessarily associated with a video or with the audio in real time. It's usually associated with after the event has occurred, after the communication has occurred, then it's a word-by-word transcription of what has happened. So for example, in a court proceeding, nobody in that courtroom is reading the transcription live, but yet the judge has access to a word-by-word transcription after the event has happened. Kimberly Okay. Gotcha. And then a cart is where someone is live sort of. Doctor Scoresby Yes, it's a little, it's real time captioning, but by a human, not by AI. Correct. Kimberly Parsley Awesome. Okay. Let's see. And now I know so much more now. Doctor Scoresby I know all the methodology matters. Kimberly Parsley It does so much, so much. And fortunately, you know, there's so much more of it now. So, so much more of it. So that's great. And as a licensed clinical social worker, which you are, what accommodations or adjustments are important for you? Doctor Scoresby Um, yes. So, um, in my role as a social worker, I, I need to be able to access speech. I need to be able to access what people are saying. Um, I need to be able to, to, I can't perform my role to be a helper if I don't know what somebody is saying. Right. So I need a quiet environment. I need to be able to live caption something without, and you know, I have to be careful about what I caption because we have laws that, that protect, um, recordings and, you know, you don't want to record somebody's private health information, so I have to be very careful about what app I'm using and if it's recording and storing or recording and deleting that, where is that going? Um, so I have to navigate that if I'm working with a client, for example, if I'm working in a community with a community, I have to have captions. I have to be able to have microphones in place with that community where people, you know, people are uncomfortable standing up and talking or standing up in front of a room, but, but I need that. I need, I need in, in our, my faculty meeting, I need department chairs when they're sharing updates, I need them to stand up and go to the front of the room versus stay sitting at their table where I might not be able to see them from where they're sitting. So even though people are, might be uncomfortable standing up and talking in like a meeting or community setting, I need people to be able to stand up so I can clearly access their face and all of those, those visual cues that are so helpful in, in navigating a listening situation. There are times that I need real time captioning that, you know, but there are times where I'm just like, okay, I can hear you. I'm good listening situations, different. Kimberly Parsley Do you ever get pushed back when you, because I'm sure people forget and you have to say, could you go to the front of the room? Do you ever get pushed back from that? Doctor Scoresby I have to remind people every single day, every single, there's never a day goes by where I'm not reminding somebody of some type type of accessibility issue I'm having. So, yeah. And I think people mean well, they do. They just forget when you don't experience it yourself, you're, you don't think about it, but there's also a lot of people who have hearing loss. Many, many people, 20%, 20% most people with hearing loss don't advocate for themselves and don't even make a request. They stay silent. So I feel like I'm not just advocating for me. I feel like I'm also advocating for all of the people in the room who aren't saying anything, but I do get tired of being the only person who says anything and asks for accessibility. Kimberly Parsley Yeah, I'm with you. I feel that thing. You may be the only one in the room you're in, but there's a lot of us all over the place having to do the same thing. And what's the advocacy fatigue? That's a new phrase I've heard that it is real. Doctor Scoresby Yes, you're right. Kimberly Parsley And so in your research, you researched the mental health challenges faced by the people who are deaf of heart of hearing. Tell me about that research. Doctor Scoresby Yes, I do. Um, and I had not intended to get into this type of research when I went back to school to get my, my PhD, but when the pandemic hit, when I was getting my PhD and I saw after, you know, having hearing loss my whole life, I'm very involved in the hearing loss community and the deaf community. And, um, I saw this stress and, and anxiety and depression rise so significantly and suicide ideation. I just saw these after working in mental health, my whole career, right? I can see it. I can spot it easily. And so I could just see all of these, the, this mental health issues rising. And I was looking around and I'm like, who's studying the people with hearing loss, like who's, who's taking note of this who, and I, you know, there wasn't a lot. And so, um, I created a side project to look at people with hearing loss during the pandemic and what was going on with their mental health and that side project became my dissertation and that dissertation became my entire research agenda almost because, um, there's such a dearth and so many gaps in our research and our information about, about people with hearing loss and their mental health needs and the relationships that occurred between mental health and hearing loss. So when a person is not able to access vital and critical conversations, you know, they're, they're likely to become anxious and when you have a chronic condition like hearing loss, it means you are having these moments of anxiety in multiple conversations, maybe multiple times a day, maybe multiple, multiple times a week. Uh, and so, so generalized anxiety, anxiety disorder is really high among those people who, uh, who have hearing loss, but that's not the only mental health condition that's high. Depression is high, uh, suicide ideation is higher among, uh, those with hearing loss or deafness than those who have hearing, um, substance use like, uh, those who drink, they don't necessarily drink more often, but when they do drink, they drink heavier amounts, uh, of alcohol. And so that could be alcohol issues and, you know, there's all kinds of different mental health conditions that are associated with hearing loss. So my research, my research is designed to look at some of these mental health challenges, help mitigate them, but especially in integrating social work and audiology spaces. So bringing mental health into audiology spaces. So audiologists are fantastic at tinkering with hearing devices and helping us to navigate our hearing loss and, and, you know, trying to help us navigate different kinds of communication challenges, but, um, they don't have the time or the training or the resources to also treat mental health conditions that go along with hearing loss, but people with hearing loss are often turned away from mental health providers if they're seeking mental health care. So if audiologists can't take care of our mental health care needs, and if the mental health world is not wanting to take care of our mental health needs, who's taking care of the mental health needs of people with hearing loss? That's what my research is designed to do is integrate these worlds, create solutions so that people with hearing loss, um, or deafness, regardless of their communication preferences, that they're able to one, learn about how their hearing loss interacts with mental health and then to access care so that they can receive treatment in their patient preference to be able to help treat their, their mental health issues. So that's my research focuses on. Kimberly Parsley So tell me about the, the wording, the deaf and hard of hearing and why that wording is preferable to, to other things. Doctor Scoresby Yeah, great question. And so, you know, I, myself, what matters here, like underlying message among language here is what does the person prefer, which is challenging when you're outside this world and you're not familiar with this world. Because you're like, wait, how many different terms are they? How many different terms do I need to learn? Well, you don't need to learn a bunch. You just ask the person, how do you identify, right? I personally identify lowercase D deaf. I have zero hearing without my devices with my devices I can hear. So I'm in this in-between world. So I don't use sign language and I'm not often a part of the cultural traditions of the deaf community, deaf with an uppercase D deaf. And so uppercase D refers often to being part of deaf culture and deaf community and using American sign language and the United States to communicate. So, so many people who are in that community identify as deaf capital D, regardless of where their hearing loss is on an audiogram. If they participate in the deaf community, they identify as uppercase D deaf. But more often that's profound deafness. People who, who cannot hear, who at all, or very, very little. Lowercase D deaf often refers to people who have profound hearing loss, but who still communicate through accommodations and hearing devices and use oral speech, et cetera. Hearing impaired is, is another term in which regardless of where you are at in the spectrum, you could have mild hearing or profound, uh, hearing impaired has been a word, a phrase that has been used previously. But many people with hearing loss and deafness do not like it because they're saying I'm not impaired. And so that phrase has now outdated and people continue to use hard of hearing, which I exchange often with hearing loss, so hard of hearing. And that could be anywhere. I have a little bit of a hearing loss. I have a middle range hearing loss. I have a severe hearing loss, but I still very much participate in the hearing world. I use oral speech, I use hearing devices or other types of accommodations to try to hear you. So I'm hard of hearing. So people will use these, these terms, hard of hearing, deaf, deaf disabled. So there's, there's other terms in addition to these ones, but the, when we're talking about in general for the whole community, we usually say the deaf and hard of hearing, because that's those two phrases tend to cover almost everybody within the community. Kimberly Parsley Okay. I think that's not, no, no, it's not. It actually clarifies a lot. I think, I think defining our terms is important, but I love that you started with just ask a person how they want to be referred to, you know, that is, that is the best way I watched a presentation that you gave in, I believe it was 2022 about the importance of universal design, and you said it had a long way to go in terms of accessibility for the deaf and hard of hearing. Can you speak to improvements that have been made, I guess, particularly in the field of, I guess, a social work or higher education? Doctor Scoresby Yeah, sure. So universal design for learning is, is based on the concept, this design of universal design, as far as for buildings, that's where it began. This man named, named Ron Mays was a wheelchair user and an architect, and they wanted to complete his degree. Um, but that, you know, the school of architect was on the second floor and there were no elevators in his building. And so other students had to literally carry him up and down the stairs so that he can even attend classes. And so he created the, this concept of universal design in which, you know, why don't we intentionally design buildings with accessibility in mind? And that has carried over several iterations, but, but universal design for learning now in an education setting is why don't we design our courses and our classes and our programs? And I teach my students in their agencies, you know, why don't we intentionally design all of these things with accessibility in mind? So instead of adding on an accommodation because we have to, because it's the law, because we're required to, and as we said earlier, someone else gets to determine what's reasonable or not. How about we bypass that, right? And we just say, Hey, I want all types of bodies in my classroom. I want all types of bodies in my program. So how about I intentionally design this syllabi so that the thought is easy to read, that those who are susceptible to migraines won't be triggered by my, you know, by my syllabi because I'm using appropriate fonts. For example, I am considering those who have color blindness. And so I'm not using certain colors in my syllabi or in my presentation or in my classroom, but those, even though there's various abilities with color blindness, that I'm considering it, right? I'm trying to consider what different abilities are. And I'm trying to design my course so that regardless of what your ability or disability is, you still feel welcome in my course and my course content is accessible to you. So when I said we have a long ways to go for the deaf and hard of hearing people, I walk into an education space. I still have to ask someone to turn the captioning on. Why? It's free. It's accessible. All you do is push a button. Why do I still have to ask for that? Why are we not just captioning everything everywhere we go all the time? Because it's not just people who are deaf and hard of hearing benefit. A lot of people benefit from captioning, but even if it only benefited those who are deaf and hard of hearing, 20%, right? So, so universal design says we start with caption. Nobody has to ask us to turn them on. We're going to start with captions. So in the, in the field of social work, I, you know, I go to professional conferences. I go to academic conferences. I have to ask, I have to ask every single presentation. I attend every single thing I do. I have to ask, can you turn on the captions? Can you turn on the captions? Can you turn on the captions? And then I have to rely on their comfort level with turning on the captions, their familiarity. And half the time they say, I don't know how to do it. And I get up and I show them how to do it. Right. Um, but higher ed still has not learned to just turn on the captions. And that's like bare minimum because that's free. No one has to pay anything for that, let alone being able to build in, you know, a higher level of accommodations. You know, the more, for people with hearing loss, we rely so much on visual. Now this wouldn't help somebody who was blind, but for people with hearing loss who need visuals, being able to put more pictures with text inside your PowerPoint slides, instead of just having all content and then you're just speed reading through all the content, like let's use our visuals better. So that would be also a higher universal design principles. So that's what I mean by we still have a long ways to go. You know, I want my students to feel like my classroom space is not only welcoming, but that, you know, they, they don't have to work so hard on accessibility, but they can actually master the content of the course because they're not having to work so hard on just, can they access the materials, right? Can they understand the material? So I built in a lot of different components for my own courses, but I have to tell you about a time that I failed. So I tell all my students, I stop at the syllabus policy and I explain accommodations, this disability office has explained students to utilize our resources and to get letters if they need letters, but here's also all the things I do to help the course be accessible so that you get to choose whether you use your accommodation letter or not, but that hopefully the course itself still has lots of accommodations built into it naturally. Where if you don't want to ask to use your letter, you don't have to, but one time, and so I talked to my students about this on the, on a regular basis, but one time a student approached me and she said, your class is not accessible to me. I know your, your eyebrows just went up and, and I was like, what? I worked so hard for my courses to be accessible, right? And I'm like, really? And she's like, yeah, it's not accessible. This, this doesn't work for me. And I was just flabbergasted and I'm like, okay, I thank you for telling me. I want to understand how I can be more accessible. And she proceeded to tell me about a disability experience that she had that not only was I not familiar with, but I had never seen in any of my reading or work in universal design or accommodating in classrooms, I hadn't seen it and I, you know, didn't know about it. And so she taught me about a component of accessibility that was needed. And I was able to implement that. And, but what was beautiful about that whole experience is that she said, your class is not accessible to me, but you are. Kimberly Parsley And I, oh, that's nice. Doctor Scoresby Yeah. I knew if I asked you, you would be able to build this in. And she's like, I've never asked a professor. I don't feel safe asking people for this, but I feel safe with you. And so I'm like, okay, universal design. It's not about, I get it right all the time, or I can understand and predict everyone's ability, but it means I'm accessible with my students. We can build this accessible course. It was like a failure, but also a really great learning opportunity. Kimberly Parsley And you mentioned in that YouTube video that I watched of yours, that people with hearing loss are excellent fakers. And so I'm wondering, I'm wondering, can you tell, can you say more about that? And why might someone feel the need to, I guess, keep their hearing loss hidden? Doctor Scoresby Yes, yes. So as I mentioned earlier, it takes a great deal of cognitive energy to listen when you have a hearing loss. And so you might be in a listening environment that's difficult. Let's say there's background noise and you're in a restaurant, like you're out to lunch for their friends, for example, and your ability to hear them is difficult anyways, and then you add in that background noise and it becomes maybe almost impossible for some people. And so instead of saying what for the hundredth time during lunch, you just nod, you start nodding, nodding, you have a fake smile and you pretend you know what people are saying and you just go along with it. And, and, you know, we're always looking at visual cues. We can, we're good. People with hearing loss are really good at navigating social cues so that the other person feels like we're listening to them when we really can't hear a dang word they're saying. So that's one way that I mean by we're, by we're fakers, but there are many, many people who don't disclose their hearing loss. They never would. And there's so much stigma that comes with having a disability. And so that people are afraid to be judged. They're afraid to be viewed as incompetent because guess what? Our history says we look at anybody with a disability and it's not about their limitation. It's about, they're not competent. Like we question people's competencies. Kimberly Right. Right. They're, they're intelligent. Yes. Oh yeah. Oh, absolutely. Doctor Scoresby Yes. Yeah. And so people don't want their competency questioned. And so, um, they're not willing to disclose their hearing loss or they don't want to show that they were hearing aid. So they, you know, they have long hair that covers their, their hearing devices because they don't want to show it. And I feel like we're fakers in that way too, in which, especially as social workers, like we're constantly advocating for people to advocate for themselves. Kimberly Parsley Yeah. Doctor Scoresby Um, but, but sometimes social workers aren't very good. We're not very good about advocating for ourselves and our needs. And that includes social workers, other social workers with hearing loss, you know, even I have multiple family members who have hearing loss, multiple. And, and two of my three children also have my hearing loss and hardly ever do any of these people in my family ever say, what, I didn't hear you. Hardly ever. They just go on and pretend like they heard everything that you say. So even within like our family conversations, we all know we have hearing loss, but we get so used to just bypassing over what we don't hear. That we just pretend or we, you know, we think we heard. And so we just kind of move on. So our conversations are really random at home because no one's hearing each other. And it's like going off into different engines about conversations. So slowing down and saying, I think we need to do this more and more and more. I think we need to, everybody with hearing loss needs to say, okay, I didn't hear you. Repeat that, or this is what I heard. Help me with what I didn't hear. That the more we do that, the more awareness we bring, hopefully the more acceptance we can bring. Kimblery Parsley Right. Of course. And you and I were talking off mic that you have two teenagers, right? So possibly they're just not listening. They just, I say that as a, also a mother of two teenagers. Doctor Scoresby Yeah, we definitely have moments where they're not, they're not listening. Kimberly Parsley Exactly. Doctor Scoresby And there are moments where I'm not listening to them too. Kimberly Parsley Right, right. Yes. Because so much, so, so much video game minutiae that I get, I just cannot process it all right. So tell me about the hearing loss impact website, what it is and, uh, why you started it, what you hope to do there. Doctor Scoresby Yes. So I started building that when I was working on my PhD, because when I saw the gaps that existed in mental health and in, uh, audiology, which audiology is hearing healthcare. So when, when I saw some of those gaps, I felt like there were gaps on, on both sides, on the audiology side and on the mental health side. And so for me, I was designing this website to be able to help bridge some of those gaps so that it would be helpful for those in the audiology world, and it would be helpful for those in the mental health world. It, it takes a lot of time to devote to building websites. So I have not had the same, the amount of time that I've wanted to be able to continue to build that. So there's some there and I will build it over time, but it's designed to bring these two worlds together with helpful resources, bite-sized tips, you know, some, some practical tools and strategies. For example, one of the tools I have on there is an accommodation checklist for therapy so that a person with hearing loss could just print off this checklist. They can highlight or circle what they need from their therapist or from their case manager or from their provider. They can hand it to them. And so instead of having to explain, you know, I have hearing loss, these are the accommodations I need, which more than likely a person won't even ask for that. But if we can have something to print off and to give to the provider that says, please don't sit in front of a window because the light blocks out your face. And I can't read your lips. So if I, if that's already on this checkbox, right. And I can say, don't sit in front of a window, please have an iPad or computer open that has captions that are running, you know, if there's anything that's, that's really important information and you're turned around writing on a dry erase board, explaining a pattern or a cycle, I'm not going to hear that. Please turn around or give me a visual that I can take home and learn from. Anyways, so this, this list is designed to, um, just be a helpful checklist for people to just say, okay, therapist, okay, provider, here's the things that I need so that you're not having to guess. And I'm not having to spend all my time trying to explain my needs. Kimberly Parsley And that's something that you're working on over time. Doctor Scoresby Continuing to that tool that tools already in my website, but I'm working on building other kinds of tools to kind of help bridge some of these gaps. Yes. Kimberly Parsley Okay. And where can people find that website? Doctor Scoresby Hearing less impact.com. Kimberly Parsley Awesome. Okay. I will put that in the show. Dr. Scoresby. It has been a delight to talk with you. I have learned so much. Doctor Scoresby Thank you so much for having me and being willing to discuss all of this. I really, really grateful for the exposure and for the awareness. So grateful for the awareness. Kimberly Parsley I enjoyed it so much. Uh, I feel like I know so much more now. Thank you so much. Demand and disrupt is a production of the Advocato press with generous support from the center for accessible living based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Anken for the use of his song change. Don't forget to follow or subscribe so you never miss an episode. And please consider leaving a review. You could find links to our email and social media in the show notes, please reach out and let's keep the conversation going. Thanks everyone.

If you are interested in registering for Rabbi Belser’s public lecture, either in person or online, visit givebutter.com/2025Grawemeyer

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

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Send comments and questions to demandanddisrupt@gmail.com

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

Kimberly Parsley Today on Demand and Disrupt, I speak with Rabbi Julia Watts-Belzer, author of Loving Our Own Bones and the 2025 winner of the Graumeier Award for Religion.

Robotic Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley.

Sam Moore And I'm your co-host, Sam Moore.

Sam Moore How you doing, Kimberly?

Kimberly Parsley I am doing very well. How about yourself, Sam?

Sam Moore I'm doing great. You know, spring is kind of sort of in the air. The temps are going up and down, though. But, you know, it's March Madness here, too. And I know you're such a big basketball fan, Kimberly.

Kimberly Parsley Yes, so much. I don't even know. I don't even know what's going on, so you should probably tell me.

Sam Moore Well, I tell you, we're going to – you're going to watch at least one game before the national title. Between now and the second week of April, you're going to watch at least one game.

Kimberly Parsley I only know that WKU is not in it this year.

Sam Moore The Tops are not in it.

Kimberly Parsley They're not in it. So there's just nothing for me. There's nothing for me.

Sam Moore They're setting their sights on next year.

Kimberly Parsley So I guess all the basketball fans are just in heaven, huh?

Sam Moore Yes, but even the most diehard of basketball fans need a little break here and there, and we're glad to give them one through Demand and Disrupt.

Kimberly Parsley That we are, that we are. It's a beautiful spring. My husband and daughter picked me some daffodils and you and I were talking that they are called many things daffodils.

Sam Moore Yes, I've heard my mom calls them Jonicles, and you said that your mom calls them Buttercups.

Kimberly Parsley She calls them March flags and March flags.

Sam Moore Or March flags, that's right.

Kimberly Parsley Yeah. And then they're also called buttercups, which I just think is adorable.

Sam Moore That reminds me of an old song from the 60s. "Why do you build me up, buttercup, baby, just to let me down?"

Sam Moore You've heard that song, haven't you?

Kimberly Parsley Wow, not sung like that, I haven't.

Sam Moore That's an oldie but a goodie. [laughter] I'm not old enough to remember it, but I still know it.

Kimberly Parsley [laughter] Right. And you were telling me a story, speaking of old, about a nursing home.

Sam Moore Yes, I'm glad you brought that up, Kimberly, because, you know, our good buddy, Eldon, who you and I both know.

Kimberly Parsley Hello, shout out to Eldon.

Sam Moore Yeah, he and I were talking the other day. He was telling me about a buddy of his who is a musician, and he goes around to a lot of local and regional venues to entertain people. Anyway, Eldon's buddy, he was going in to sing at this nursing home a few weeks ago, and he was going to entertain the troops with some singing and play guitar. Anyhow, he noticed that one of the guys in the audience was in particularly poor shape because he just looked like he was in a lot of pain and struggling big time. And anyhow, this guy had a request. And so he's not able to get to everybody's requests every show, but he thought, gosh, I got to honor this guy's request because this day is probably not going to have a whole lot of bright points for him. So we got to at least give him one and play a song. So he did, and he sang and he played his way through it. He had a great sense of pride knowing that he had done his part to make this old man's day a little better. So anyhow, after the show, he went to talk to this old man. He shook his hand and he said, I hope you get better. Old man looked straight at him, said, I hope you do, too. [laughter] Poor musician.

Kimberly Parsley Just, just, just so, so everyone's a critic, right? Everyone's a critic.

Sam Moore I'm telling you. And, you know, the critics are a lot of times people that you least expect to be critics. I guess that's sort of the life of a musician.

Kimberly Parsley Yes. And well, speaking of the opposite of critics, we have gotten some fan mail.

Sam Moore Fan mail!

Kimberly Parsley I know we love fan mail. Jerry Wheatley emailed and hi, Jerry. Hi, Jerry.

Sam Moore Hey, Jerry.

Kimberly Parsley And he said he liked your interview that you did with Jennifer Hunt Spurling. He said it was a lot of good information about the Kentucky Lions Eye Foundation. And he thought it was great that we were bringing some attention to what they do and bring in what they do to the attention of other people. So don't tell Jerry.

Sam Moore Tell Jerry that his check's in the mail.

Kimberly Parsley Exactly. So glad to see we are, you know, helping out people and giving the people what they want.

Kimberly Parsley And anyone who would like to send in an email to Demand and Disrupt, just send to demandanddisrupt@gmail.com.

Sam Moore Yes, we welcome fan mail, and we are also pretty thick-skinned, so, you know, we can take, you know, if you have, well, constructive criticism, maybe, topics you'd like for us to maybe dive into at some point.

Kimberly Parsley Oh, I love topic suggestions. I love that. Yeah, that'd be great.

Sam Moore So feel free to pass along those show ideas and suggestions too.

Kimberly Parsley Yeah. And, or you can get on Facebook and go to the Advocado Press and that link is in the show notes. So you can engage with the discussion that way. So you made me think of

Sam Moore You made me think of Avocado, which I'm not a fan of Avocado.

Kimberly Parsley It does, but it's like avocados, but with a D, A-D.

Sam Moore Yeah, that D just has to throw a wrench in things.

Kimberly Parsley Well, you know, yeah. What are you doing for spring break, Sam?

Sam Moore I think it'll be a staycation pretty much on this end. I'm sure half of Henderson will be out of town the week of April 7th through 11th because that is spring break in our school system, and I'm sure it is in the Warren County school system too, is it not?

Kimberly Parsley Yeah, I think it's a popular spring break week. I mean, of course, most of the colleges and universities, I believe they're on like this week.

Sam Moore Yeah, I think they already had — When I was at Western, I think our spring break was always like middle of March. But anyway, although I might want to hitch a ride to Louisville somehow because you're about to enlighten us on a special event that's happening in the Derby City during spring break, correct?

Kimberly Parsley I am the person who I interviewed today, Julia Watts-Belser. She will be giving a public lecture on Tuesday, April the 8th at 5 p.m. Eastern. So that's 4 p.m. Central. And it's a public lecture at the Louisville Presbyterian Theological Seminary. And I will have a link to that in the show notes to get updates. And I think if you can't make it in person, you can register. I think it will be live streamed. So I believe I am going to try to make it up there in person. I think there's a contingent of us from the Center for Accessible Living who are all going to try to get together and go. And that will be fun. And I'm very much looking forward to that.

Sam Moore That'll be fun. Maybe a little carpool action up from Bowling Green.

Kimberly Parsley Yes, exactly, exactly so.

Sam Moore Maybe you can record this presentation and that can be an episode.

Kimberly Parsley Well, like i said, i think that she's, i think they're planning on streaming it so...

Sam Moore It's going to be live streamed anyhow, so yeah.

Kimberly Parsley I think so. So, I mean, I think they're still, you know, working out details and stuff.

Sam Moore Yeah, If it's live streamed, of course, you can always go back and catch it later.

Kimberly Parsley Right but even if you're — I think you have to register even to view the stream so...

Sam Moore Okay, so don't forget that registration.

Kimberly Parsley So we'll have that in, in the show notes and everyone listen to my interview. It was an amazing interview. She's just — her — the way she looks at disability and spirituality is just really, really impressive, really coming at it from an interesting direction. And she is Julia Watts Belser, and she is the author of Loving Our Own Bones, Disability Wisdom, and the Spiritual Subversiveness of Knowing Ourselves Whole. And here is my interview with her. Welcome Dr. Julia Watts Belser to Demand and Disrupt. How are you?

Julia Watts Belser Thank you so much. I'm doing well, and it's a real pleasure to be here with you.

Kimberly Parsley Thank you for taking the time and congratulations on winning the Grommeier Award for Religion.

Julia Watts Belser Thank you so much. It's a huge honor. I'm really, really thrilled.

Kimberly Parsley So tell me about this award and what it might mean for your studies, your future and things.

Julia Watts Belser Well, thank you. The Graumeier Award for Religion is a huge honor. I'm really delighted to receive this award for my recent book, Loving Our Own Bones, Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole. Of course, it's incredibly gratifying both personally and professionally, but it's also a really profound affirmation of the importance of bringing disability perspectives to the study of religion and theology. And that's core to my work and central to my own commitments. I am passionate about bringing disability voices and disability perspectives to the center of the conversation about, right, braid them into conversation with Jewish text and tradition, and also think more broadly about the role of disability and religion in so many different ways. There's, you know, I think there's such a long history of complexity when it comes to disability and religion. Disabled people have so often borne the brunt of a lot of ableism from religious communities. Sometimes that's, you know, pretty overt harm. Sometimes that's paternalism and charity that gets all wrapped up in spiritualizing language. So part of my work and part of my commitment is to really challenge that. But it's also core to my work is the belief that disabled people deserve meaningful access to spiritual life and to religious community. So I firmly believe that religion and religious communities can be a powerful site for justice-seeking work in the world. And part of what I hope my work and my book and this award can help do is to really help catalyze that sense of possibility.

Kimberly Parsley Well, the book is wonderful. I have read it and loved it so, so much.

Julia Watts Belser Ah, thank you.

Kimberly Parsley I listened to the audio and this is one of those times that I really would like to have been able to use like a print copy and a highlighter, really been amazing. So thank you so much for making it available as an audio book. And seriously, folks, if you haven't read it, you should pick it up. It is called Loving Our Own Bones, and it is wonderful. Instead of asking what do Jewish and Christian traditions have to say about disability, you kind of took this book in a different direction. Can you speak about that?

Julia Watts Belser Sure. So in my professional life, I am a professor of Jewish studies and disability studies at Georgetown University. And I work a lot on questions of what both biblical texts and early Jewish texts, what these texts have to say about disability. So people often ask me, what does the Bible say about disability? What does Jewish tradition teach about disability? It's a fair question. But with this book, my question was really different. My question really flips that on its head. I'm asking instead, what insights does disability bring to spiritual life? You know, Loving Our Own Bones dives deep into ableism and disability injustice, both in religious texts and in contemporary culture. In the book, I am really working on laying out both a spiritual and a political invitation to reimagine our world, our cultural traditions, our religious traditions, in ways that honor the real deal, our actual bodies and minds. In so many ways, I think of this book as like a love letter to disability community. I wrote it out of my fierce appreciation for all of the ways that disability community has changed my own life, to honor the ways that disabled people push back against normativity, the way that we teach each other to let go of stigma and shame, to spit out the poison that is ableism and claim each other's lives as worthy and beautiful and beloved. For me, that is powerful work. That is sacred work. And so part of what I am doing in the book is aiming to recognize and claim the sacredness of disabled people's lives, and then to bring our wisdom, disability wisdom, into conversation with religious texts and traditions. I think there's a lot that religion can learn from disability experience, and that's partly what I hope to open up.

Kimberly Parsley Because you have—You live in a disabled body which—

Julia Watts Belser I am a wheelchair user. Yeah, I'm a long time wheelchair user and disability activist. That's core to my own sense of identity and my politics and my spiritual life. I mean, I really can't say anything about who I am religiously, socially, politically without foregrounding my sense of disability matters to me deeply.

Kimberly Parsley Yeah. And that shows in the book. And I like what you say about the disabled community because I personally learned to love myself more once I became more involved in the disability community.

Julia Watts Belser Yeah, it's something that I hear from so many people. It's been my own experience as well. You know, it was other disabled people who—I've been disabled all my life, but I became a wheelchair user in college. And, you know, first of all, it was other disabled people who taught me all the tricks of the trade. But even more importantly, it was coming into disability community that helped me claim and recognize the fact that disability could be a catalyst and place of fierce self-love. And that that really matters to me, you know, that that sense that our body minds matter, that we have worth. That's something that, like I said, that feels to me like deep truth, but truth that we so, that the world often, the world tells us a lot of lies. And part of what I so deeply appreciate about disability community is the way that we teach each other otherwise.

Kimberly Parsley It's true. it is so true. The world tells us a lot of lies, but then, you know, there is this whole internalized ableism—

Julia Watts Belser Oh my gosh.

Kimberly Parsley —Where, you know, your own, your own self, your own brain is telling you the lies.

Julia Watts Belser Yes.

Kimberly Parsley —And it's so painful.

Julia Watts Belser It is.

Kimberly Parsley Can you tell me what led you to become a rabbi?

Julia Watts Belser It's a beautiful question. And of course, it's a complicated one. But I'll say, so I'll say a couple of different things. I think one of the things that led me first and foremost to become a rabbi was, is my deep commitment to the work of social justice. I feel that I became a rabbi to teach a Torah of love and liberation. And also because I wanted to root my own commitment to social justice work in sacred ground. Spiritual practice is an anchor for me. Contemplative practice, deep reflection, study of sacred texts, silence, song, care. All of these practices are, they're like the deepest ground I know. And they are part of what anchors me when the work is long and the fight is hard. So that was a big part of it. I wanted that commitment to the sacred to be at the center of everything that I do. But another truth about me is that I also really love tangling with sacred texts. I really, I really find it meaningful to be in ongoing conversation with a tradition, with wisdom, wisdom that has been passed through the centuries. You know, it's funny. Sometimes people say, oh, I became a rabbi because I, you know, was in love with Torah. Torah is a term that, you know, it's the sort of Jewish way we talk about the Bible. But I don't think that's true for me, actually. I have a very complicated, I have a complicated relationship with biblical text, with sacred text, with the text of, with Jewish tradition. I think one of the things that is most important to me about Jewish tradition is the space that it makes for dissent, for disagreement, and for argument. In Jewish community, we talk a lot about wrestling with God and wrestling with tradition. That's vital for me. And well, you know, because you've read Loving Our Own Bones, you know that—

Kimberly Parsley Yes.

Julia Watts Belser —We spend a lot of time tangling with texts that do disability harm. And that's part of my commitment, not just to look for the sweet and the soulful, but also to go straight into the places of trouble. Because I think we have an obligation to look very closely at the deep roots of ableism, violence, harm, and do the work to better understand that. And then also, hopefully, to alchemize it, to change it, to make it new, to teach a different possibility.

Kimberly Parsley In your book, you talk about Leviticus 21. Can you tell me about your struggles with that text in particular?

Julia Watts Belser Sure thing. Here we are going straight to the heart of the trouble. So, okay, Leviticus 21, that is, Leviticus 21 is a biblical text that declares that a priest with a quote-unquote blemish, the Hebrew word there is mum, a priest with a blemish may not bring sacrifice to God. And, you know, that passage goes on to lay out in very precise detail all of the priests who aren't allowed to serve. No priests who are blind, no priests who are lame, no priests who have a short stature, no priests with a limb that is too long or too short, no priests with scurvy or boil scars or once broken arms, right? I mean, it's a long list and it's really painful. It's a profoundly troubling text, not just for the way that it portrays God as preferring a certain kind of normative body, but also for the way that it bars disabled priests from the most sacred duties of their position. Priests with a blemish are still priests, right? So let's be clear, but they are forbidden to bring sacrifice. And in biblical text and biblical tradition, to bring sacrifice is to be, that is one of the things that brings a person particularly close to the divine presence. So that's hard. But I think most painful of all, that passage in Leviticus 21 concludes with words that actually forbid priests with a blemish from entering into the sacred, the most sacred place. They're not allowed to draw near to God's altar, lest they profane God's own sanctuary. Oh, I mean, twist the knife. So, okay. A couple of things I'd like to lift up in terms of how to grapple with a text like this. First for me, first and foremost, no apologetics. I don't want to make nice with this text. I want us to recognize the violence here and to recognize that this kind of violence, this kind of devaluation of disabled people's bodies and minds still happens all the time. I think it's important to be real about that. And when I encounter this text, unfortunately, this text is read every year. The whole Torah is read every year in Jewish communities. So I encounter this text on a regular basis. Every time I hear it read, I take it as a witness to ableism and as a call to reckon with violence. Okay—

Kimberly Parsley Do you feel like people look at you when that is read?

Julia Watts Belser [laughter] Oh, gosh. So truth be told, sometimes I skip synagogue on the day when I know this text is going to be read. I'm just like, it's not actually so much that I feel uncomfortable with the text. It's like, I don't want to hear what people are gonna say about it and i don't want that awkward moment where people are like, "Oh gosh i can't believe this is in here."

Kimberly Parsley So awkward.

Julia Watts Belser So awkward, so awkward. [chuckle] But so let's think about like what to do with it. Right. So first and foremost, I would say I take it for absolute granted that disabled people are beloved by God, full stop. That's bedrock for me. It's non-negotiable. So I flat out don't believe that Leviticus 21 tells us anything true about how God feels or how God thinks about disabled people. But I do believe this text tells us quite a bit about how humans judge each other and how quick we are to press our own prejudices onto God. So that shift feels really important because then it allows us to think much more about the ways in which human communities have so often judged and marked out certain kinds of bodies and minds as aberrant, as undesirable, as not wanted, and also have served to bar them from sacred places. Now, one of the things that's really interesting to me is that when you dig more into the way traditional, so I'll speak here particularly about Jewish sources, because that's where my expertise is. When you dig into the way that classical Jewish commentators have grappled with this text, it's really quite striking to see how many ancient voices, ancient and medieval voices recognize that this text is unacceptable and have worked to blunt its force. So that's pretty exciting, right? The Talmud, for example, a foundational sixth century text of Jewish law and practice really reinterprets this biblical passage quite boldly. The ancient rabbis, right? So they ask, what's the real problem here? It's so, it's amazing. You can see that they assume that it can't be that God doesn't want disabled They can't, you know, they think it's got to be something else. So they argue instead that the real problem is other people. Other people might get distracted or disturbed by somebody whose body or mind is outside the norm. I mean, I got to say, I don't know about you, but that does ring true for me. So the rabbis adopt what they call the principle of familiarity. And they rule that as soon as a person is familiar, then they're allowed to come before the community and offer the priestly blessing. So, okay, this is an important move. I think it's a really significant, inclusive gesture. There's a lot that I value about it. And I, and it matters to me that that we can find these clear voices of dissent and disagreement already within the heart of the tradition, right? Again, this is 6th, 7th century. This is not a recent gesture toward inclusion. But I also want to say, you know, this business about familiarity, it's not enough. It's not enough. Because here's the thing that haunts me. Whose responsibility is it to become familiar? All too often, in my experience, it's disabled people who are forced to bear the brunt of embracing normativity, right? We're the ones expected to make ourselves more palatable to the non-disabled gaze. There are like a thousand ways we learn to do this. We learn to, you know, to hide the limp, to cover, to pass, to shrink, right? To apologize for our complexity, to try and minimize our difference. So whenever I read this text, I want us to take the Talmud's principle of familiarity and really turn it on its head. I want to use it to say, "The real obligation here is for communities to become familiar with us." Synagogues and churches and schools, public spaces, employers, right, all have an obligation to grapple with the force of this command, to take disability difference seriously, to learn the nuance of different access needs, to shift the burden back where it belongs. So that's how I read this text, and that's where I feel its potential.

Kimberly Parsley And you devote, I think, an entire chapter in your—

Julia Watts Belser Yeah, yeah.

Kimberly Parsley —book to this. So yeah, there's a lot here and it's not—

Julia Watts Belser There's a lot to dig into.

Kimberly Parsley There is a lot to dig into, but I found it, I found it not difficult reading. I found it, I was very curious listening, listening to it.—

Julia Watts Belser Thank you so much.

Kimberly Parsley —I thought, how's she going to square this? How can this be? But in, in every case you, I feel like. I feel like you brought love to both the text and the disabled people reading it. So, which no small feat there. Now, for Christians and Jews alike, Moses is an important figure. And you also have a chapter, I think, devoted to Moses.

Julia Watts Belser He gets two chapters, actually. [chuckle]

Kimberly Parsley Two chapters, right, right, yes, and rightly so. [chuckle] And I, there's one section in particular that I had flagged and I think I sent you that. Do you have that available to read?

Julia Watts Belser I'd be glad to. Let me just take a moment to get to the right spot.

Kimberly Parsley Okay.

Julia Watts Belser Exodus 4 is not simply a record of God's confident command. It is also a negotiation that lays bare the urgency of God's call. God needs Moses in order to accomplish the things that God wants done. But here's the thing. God has a staffing problem. God faces the perennial frustration of having to arrange and marshal a fractious bunch of humans to undertake the work that God wants to accomplish in this world. Good help is hard to find, and the people God selects aren't always reliable. They don't always execute the job in the precise ways that God desires. Sometimes they don't show up. Sometimes they turn God down. This is a problem that disabled folks know well. Many of us rely on other people. People to accomplish physical tasks, whether that's getting out of bed and getting dressed or lifting the books and moving the furniture.

Kimberly Parsley I love that passage so much. So, so much. So can you talk a little bit about that passage to our audience?—Who are of course people with disabilities.

Julia Watts Belser I'd love to. Yeah, yeah, I'd love to. And I'm so glad that you picked that, because that is for me one of the passages that, you know, I—that feels so resonant for thinking about, right? I mean, it comes right, it comes straight out of my own lived disability experience. I should say, before I do, let me just say a word about Moses, right? I lift up Moses as a disabled prophet, as a man who experiences speech disability, and who contends with that as part of his own religious call. There's a really powerful moment in the Bible where God asks Moses to speak God's own words before Pharaoh, right? Go to Pharaoh and say this to them. Pharaoh is, of course, the oppressor who is enslaving the people, and Moses is supposed to go and negotiate. This is a famous let my people go scene, but The thing I find amazing, I think I find really brilliant from a disability perspective is Moses doesn't want to do it, right? He says to God, look, I have a speech disability. I am not a man of words. And then God says, Moses, who made your mouth? Who makes people deaf or hearing, speaking or mute? It's me, God. You know, it's me, Moses. So we have this really exquisite moment where Moses discloses his own disability to God and they negotiate. There's actually, I mean, I won't tell the whole story here. I'll leave you something if you read the book, but there's a whole moment of really extraordinary access negotiations about the kind of support that Moses is going to need and that he gets in order to fulfill God's call. The passage that you asked me to read just now, the passage you chose speaks to something else, something that's actually really core to my own sense of spiritual life. And that's the sense that God also has access needs. God knows disability experience from the inside. Now, I think this kind of flies in the face of the way a lot of at least Jewish and Christian folks have been taught to think about God. Honestly, I think this is just a sort of very common way of thinking about God. Even in secular culture, we often assume that God is like all powerful, all knowing, all everything, all the time, the total antithesis of disability. But I actually find it really generative to think otherwise, to think about God as knowing something about disability, knowing disability quite intimately. One of the ways that I think about that is all of the ways that God relies on human hands, human work, human speech, right? God relies on us, not in some romantic, idealized way, but in the way that a lot of disabled people rely on care attendance, right? The way I need someone to lift things for me and to move stuff and to drive me to the store. As far as I can tell, God can't pick up a single stone without a human hand to lift and, you know, I know something about that because of my own disability experience. I know how frustrating that can be, how vulnerable it can it can leave us. But I also know the intimacy that it can open up the way that it builds out truly a sense of interdependence and mutuality. A sense that we actually really cannot do it alone. I find that beautiful.

Kimberly Parsley It is, it is beautiful. And I chose that particular passage of your book. Just, I think that's a good example of what you do throughout this book, which is kind of, it's not going to go how you think it's going to go. [laughter]

Julia Watts Belser [laughter] It's not going to go how you think it's going to go. So true. So true. I mean, that flip, right? That saying, what if we assume disability is actually at the heart of the whole enterprise? What if we assume that disabled people know something really... juicy about spiritual life like we're not on the outside looking in. I mean, often in real time we are, we have been pushed to the margins and we are made to sort of look in from the cheap seats and so much of the work I want to do in this book is to to flip that to place disability experience at the heart and center of religious life

Kimberly Parsley Beautiful. Wonderful. I love the Moses section.

Julia Watts Belser Thank you.

Kimberly Parsley I love it so much. A disabled person's relationship to religion can be both complicated and comforting. And I think you spoke to this when we were talking about Leviticus 21. For me, it's when Jesus is healing blind people, the blind man, and I'm in the pews and I know everyone's looking at me and it's just so awkward. So, but then, you know, if I want to know what place is most likely going to have all their materials available for me in Braille, or if someone's going to volunteer to read stuff for me, it's going to be at church. So it's both complicated and comforting. And I wonder if you can talk a little about that.

Julia Watts Belser Yeah, it's so true. I really resonate with what you're naming. It has been my experience that religious communities can be spaces of incredible balm and nurture. They are often places where care can unfold in ways that we want, that we need. And at the same time, I spend a lot of my time working with folks who have been burned by religion, right? I am a queer disabled feminist rabbi. So often—I am—the folks to whom my heart is closest, so many of us have borne the brunt of religious violence. So I just want to name outright, in a lot of disability spaces, people are deeply hesitant to engage with religion and for good reason. There are so many minefields, right? Whether that's like you mentioned, miracle stories, healing stories, faith healing, or paternalism and saccharine sweetness. There are also just a lot of really frustrating cultural narratives about disability that end up getting like garbed in spiritual language, right? People say, "Oh, disability is our greatest teacher." or "God doesn't give us more than we can bear." You know, like, oh, spare me, right? I mean, these are just, these are just so, so upsetting. [chuckle] So I think that, you know, I find myself often very much working between worlds. I do a lot of work with religious communities, helping religious communities think about ways to more deeply integrate the insights of disability movements and disability culture, and to really learn from and be schooled by disability wisdom. And, you know, and to also just not perpetuate some of these really unfortunate tropes. But also, as a spiritual teacher, as a rabbi, one of my commitments is to helping make space for disabled people to engage with religion and spirituality on our own terms. We deserve space to grapple with spiritual questions. We deserve space to mourn losses, to name grief, to find support, and also to savor pleasure and to celebrate joy. And I think, you know, I'm sure I'm not a person that says, oh, everyone needs religious community. I mean, no, you find community, find nurture, find solace, find balm wherever you can. But I do think that disabled people deserve access, competent, culturally competent access to religious community. And that's one of the commitments that, you know, that's part of the work that I try to do. And I think it's really important also for when we as disabled people are engaging with religious communities to think about, to recognize our own agency, to recognize the ways in which we can say no to what does not serve us.

Kimberly Parsley That is hard. It is hard.

Julia Watts Belser It is hard. So often we are socialized to just say, oh, yes, oh, sure. Right. Politeness to just accept. I mean, and I think religion often—religion is often a space where that idea of obedience, of just listening, you know, bowing to the wisdom of the tradition is often ingrained in us. I want to go back to something that I said, you know, when you asked me, "Why did I become a rabbi?" I, it's something that I named that feels so important to me about my own relationship with tradition, which is as often as I say yes, I also say no. And I think it really matters for all minoritized communities, but I'll speak here particularly about disability communities. It matters for us to, to, to build up those, the spiritual muscle of saying, "Nope, I'm not taking that in. I'm not accepting that. That is not going to be, that is not my spiritual truth."

Kimberly Parsley It's exhausting, isn't it, to be in religious community and be reframing. For Christians, every Sunday, reframing a passage to make it palatable.

Julia Watts Belser Yeah, yeah. I think, you know, for me, that's also one of the reasons why I think about, I think that's partly what led me to begin to claim disability cultural space, also a sacred space. One of the things I write about in the book is how important disability arts are for me. I've had the joy and privilege of spending a lot of time with disabled dancers, disabled art makers, people who are doing, you know, disabled folks doing audio work and this kind of brilliant, cultural, artistic, disability-centered work. And, you know, that is sacred ground for me. And often that is a place where I find myself often recharging there, bringing that energy also back into my own sense of, yeah, so I guess I would just say church can look a lot of different ways. And I think that in my own life, a kind of patchwork of different communities has been a really powerful way to recognize that. Yeah, it matters to me to be grounded in Jewish community. It matters to me to have a synagogue. I mean, I actually feel really, really, really deeply grateful to have a synagogue that has a strong commitment to nurturing and nourishing disability community. But that's, but also there have been a lot of times where I have found myself really, yeah, wanting to curl up with disability memoir, right? Great book of essays. To make my way through a kind of detox after an unfortunate moment with religious community that didn't serve me so well.

Kimberly Parsley Understood. Yeah. I feel that I feel that you will be here in Kentucky, in Louisville in April, correct? Are you looking forward to that?

Julia Watts Belser Oh, very much, very much. It'll be a huge delight. So I will be giving a public talk outdoors in the Rose Garden, I believe, at Louisville Seminary. And I'm really, really delighted. So I'll speak more about some of the texts that we've talked about today. And I'll talk a little bit more about Moses and the significance of those stories and also the urgency that I feel for religious communities to recognize disability as a justice issue and to show up, especially now, especially in this moment, in support of disability communities.

Kimberly Parsley Okay. And do you know, you said that's a public lecture. Is that anyone can come or is there invitation only?

Julia Watts Belser No, it's a public lecture! And I believe I mean, I'm not hosting, but it is, I believe it is warmly welcome to, community members are warmly welcome. And I'd be thrilled to get to connect with listeners, listeners then.

Kimberly Parsley Okay. Well, we might, we at the Center for Accessible Living in Louisville, we might just form a group and show up as—

Julia Watts Belser That would be a blast!

Kimberly Parsley —your own personal sharing section. Wouldn't that be great?

Julia Watts Belser I would be delighted. That would be wonderful. That would be wonderful.

Kimberly Parsley Well, thank you so much for joining me. I appreciate it so much. And again, congratulations on the Graumeier Award for Religion.

Julia Watts Belser Thank you so much. What a pleasure to get to talk with you today.

Kimberly Parsley Thank you.

Julia Watts Belser And hopefully I'll see you in April.

Kimberly Parsley Absolutely. Thank you.

Julia Watts Belser Thank you.

Kimberly Parsley Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley, and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Ankin for the use of his song, Change. Don't forget to follow or subscribe so you never miss an episode. And please consider leaving a review. You can find links to our email and social media in the show notes. Please reach out, and let's keep the conversation going. Thanks, everyone.

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You can find the transcript in the show notes below when they become available.

Transcript

Robotic Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley.

Sam Moore And I'm your co-host, Sam Moore. How's it going, Kimberly?

Kimberly Parsley It is going very well. How are things up there at the North Quail Motel, Sam?

Sam Moore Oh, I'm telling you, we're fully booked. You're going to have to wait at least a few days to get a reservation up here. But, you know, it's pretty nice outside. And so we're all sort of getting spring fever around here. I don't think we're out of the woods yet in terms of cold weather. [chuckle]

Kimberly Parsley Sure not, I'm sure not.

Sam Moore But, you know, it makes us think that we're home for all this 50 degree plus weather. [chuckle]

Kimberly Parsley It does. It does. And people may hear it here at Demand and Disrupt Studios. People may hear wind chimes. [chuckle]

Sam Moore Oh, yes, because those have been quite loud all day, with good reason, because it's breezy there.

Kimberly Parsley It is. It is indeed.

Sam Moore But I wouldn't frown. I don't hear him yet, but I would not frown on hearing some wind chime music. That would be like the perfect touch to the perfect podcast, don't you think?

Kimberly Parsley I do, I do love, I do love some wind chimes. I really do.

Sam Moore Yeah. They're comforting, they're, you know, they soothe the soul. Only bad thing is they might put me to sleep and—

Kimberly Parsley And, you know, if you—

Sam Moore You know, if you want to wake me up. [chuckle]

Kimberly Parsley If you're blind, they're also informative, right? So you can tell how windy it is.

Sam Moore Yeah. Exactly. Yeah. If they're blowing, if the wind's blowing and they're loud, then you know that it's a windy day and there's wind advisory potential. [chuckle]

Kimberly Parsley Yeah, I took them down because I, you know, if they're calling for like ice and stuff, those little strings that hold wind chimes together will freeze and they'll break. And so I take them down, but I thought it was safe. I had Michael put them back up a couple of days ago.

Sam Moore I think if with any luck, we're safe in the ice department at this point. But yeah, you want to preserve those precious choms, you know, for spring. You know, you don't want to take a chance at damaging strings in the inclement winter weather. [chuckle]

Kimberly Parsley Nope. Nope. You don't. I do. I do love them. Well, Sam, you did our interview today. So tell me who we're talking to.

Sam Moore We, madam, are talking with the one and only Jennifer Hunt Spurling. And as I told you, she is actually from your neck of the woods, good old Morgantown, Kentucky.

Kimberly Parsley Oh, yes. The birth place of Kimberly Jane Parsley. [chuckle]

Sam Moore Yes. The birth place of Kimberly Parsley. She is the whole reason that Morgantown and Butler County is on the map. [chuckle]

Kimberly Parsley They would be surprised to hear that, I'm sure. [laughter]

Sam Moore But anyway, I told you the name, Jennifer Hunt Spurling, and at first it didn't ring a bell with you, did it?

Kimberly Parsley Not at first, but then again, I'm getting old.

Sam Moore No, nobody said that. But anyhow, she moved to Louisville for a while. She's back in Morgantown now, but she still works with the Kentucky Lions Eye Foundation. She is the communications coordinator up there. And so she filled us in on, you know, the commendable services they provide and the rich history of the organization. They just opened up, and we'll talk about this, too, a brand spanking new low vision clinic inside the Charles McDowell Center in Louisville. Did you ever go to the McDowell Center, Kimberly?

Kimberly Parsley I did. I have been a couple of times. I went back, I think last summer where they had done post COVID, they had done some remodeling and had an open house and it's really, really nice.

Sam Moore So you went to the open house. [thoughtful]

Kimberly Parsley Uh-huh. Yeah.

Sam Moore Well, this low vision clinic is in the McDowell Center, and it runs twice a month typically, and they'll fill us in. But if you, you know, if you have a certain amount of vision still left to work with and you're trying to figure out how to preserve it, maybe, you know, maximize its effectiveness. You definitely want to hit it up and talk with the doctor and, you know, get her opinion. She is very good at what she does. Very professional. She actually, her main gig is up in Maryland, but she swings down to Louisville twice a month to help with this low vision clinic. She actually used to live in Louisville. So that's, I guess, how she got connected with with this opportunity. But yeah, for any of our low vision, large print listeners, shall we say this could be right up your alley.

Kimberly Parsley Yeah. Yeah. And if any of our listeners knows someone who fits that description, you know, please pass this along to them. Cause I know lots of people who are excited about it, very excited about getting their appointment at the low vision clinic. It's a kind of a big deal.

Sam Moore It is a big deal. They are very excited about it, Jennifer and her crew, and with good reason. In fact, something else the Kentucky Lions Eye Foundation has got going on. They are proudly affiliated with the Mr. and Miss Kentucky Basketball event, which is coming up on Sunday, March the 16th. So that is, you know, gosh, after a week from the Sunday after this podcast comes out, you can make your arrangements to go to Lexington and, you know, attend this event. Kimberly, this honors the top-rated high school male and female basketball players in the state of Kentucky.

Kimberly Parsley Huh. Top rated. Now, how did how did they determine that? Do you know, is it like a voting or is it like a point scored?

Sam Moore There's a committee, I believe. I'm not exactly sure how it's determined, but I'm pretty positive there's a committee and they get together and review nominations and that sort of thing.

Kimberly Parsley Of course, with the Mr. and Miss Kentucky basketball, I think what you're talking about is you're looking at your future Wildcats and Lady Wildcats, probably, right?

Sam Moore Yeah, and hopefully a few Hilltoppers and Lady Toppers—

Kimberly Parsley Right, there you go.

Sam Moore —in there as well. We wouldn't mind that either.

Kimberly Parsley We will just leave out the Cardinals, right? Is that what we're doing?

Sam Moore Yeah, I guess so. Yeah, no offense to our Big Red fans, the other Big Red. If it's top of the league. [laughter]

Kimberly Parsley The other Big Red.

Sam Moore Yeah, the other Big Red, you know, we still love you, but, you know, we got to give first priority to the Cats and Lady Cats, Tops and Lady Tops. [laughter]

Kimberly Parsley There you go.

Sam Moore Anyway, March 16th is the big day for this event, and March 14th, the Friday before, that is the deadline for purchasing your online tickets. So we will include here in the show notes a link to purchase tickets, and also something you might be interested in, Kimberly, they're also going to have an online auction the week leading up to the banquet for Mr. and Miss Kentucky. Really?

Kimberly Parsley Really? Uh-huh.

Sam Moore You can go and, gosh, they're going to have all sorts of different things.

Kimberly Parsley And the proceeds go to the...

Sam Moore Go to the Lion's Eye Foundation. Yeah, and there's a link to partake in that auction as well. It opens Monday the 10th at 7 a.m. Eastern, and it closes Sunday evening the 16th at 7 p.m. Eastern. So you've got plenty of time to investigate, scope out what's available. And, you know, I might have been wishful thinking on the Braille book slightly, but you never know, Kimberly.

Kimberly Parsley You never do. They may have got some donations of those from National Brill Press or APH or something.

Sam Moore And you're trying to sort of, you know, brush up your braille skills with the with the fingers that are still of service to you. [laughter]

Kimberly Parsley I am, and it's getting better every day, little by little.

Sam Moore That's what it's all about.

Kimberly Parsley Yeah. Tiny baby steps

Sam Moore Perpetual strides.

Kimberly Parsley Exactly.

Sam Moore But we will include in the show notes link to purchase tickets for the Mr., Miss, Kentucky basketball, and a link to partake in the online auction so that you can have that. Enjoy a little shopping spree from the comfort of your home, which we're all sort of accustomed to these days.

Kimberly Parsley Yeah. Yeah. And I mean, Lion's Eye Foundation, they do such great work, don't they?

Sam Moore They do. They are. And of course, they're affiliated with the Lions Club and the Louisville Lions Club was a very instrumental in getting that organization up and running many, many moons ago. And, yeah, they have traveling groups that, you know, travel across the state and offer services like vision screenings and things like that to people who are eligible. And, gosh, the list just goes on and on. So you will find you will find Jennifer Hunt Spurling to be a wealth of information, to say the least.

Kimberly Parsley Well, wonderful. I can't wait. So we are about to hear Sam's interview with Jennifer Hunt Spurling.

Sam Moore Enjoy, peeps! Well, if you or somebody you know has low vision or no vision, then chances are you or that special someone in your life will probably, if not certainly possibly, reap the benefits of services and programs offered through the Kentucky Lions Eye Foundation. They have a rich history that dates back a lot farther than you might think and a number of commendable programs and services that they have proudly offered for a number of years and continue to offer other new offerings such as a low vision clinic that just opened its doors in Louisville within the past few weeks or so. The official ribbon cutting is still yet to come, but they are open and ready to serve at this point. So here to talk about that as well as the other info concerning the history and the mission of the Kentucky Lions Eye Foundation programs and some other resources that perhaps we can benefit from is the communications coordinator of the Kentucky Lions Eye Foundation coming to us direct via Zoom from Butler County, Kentucky. It's Miss Jennifer Hunt Spurling.

Jennifer Hunt Spurling Thank you for having me. [chuckle]

Sam Moore Jennifer, it is great to have you with us. Quite a pleasure indeed. Now, we should point out that, of course, the new Low Vision Clinic is opening, actually has just opened in Louisville. And the Kentucky Lions Eye Foundation is also based in Louisville. You were yourself there for a while, but you recently moved back home to Morgantown there where you are originally from. How long have you been back home, Jennifer?

Jennifer Hunt Spurling Yeah, so it's been right at two years.

Sam Moore Two years?

Jennifer Hunt Spurling Yeah, so I was in Louisville for... Oh, 10 or 11 years. I'm losing track of time here, but worked there. And then after, you know, COVID, everything went remote—

Sam Moore Right.

Jennifer Hunt Spurling —and was able to move whenever my husband got a position down closer to home and live within, I'd say three miles of 90% of my family. So nice to be home.

Sam Moore How about that? It's great to be in close proximity to so many folks that you know. and love and grew up with in many cases. In fact, I think I read you're on the family farm, right?

Jennifer Hunt Spurling I am, yep.

Sam Moore Yeah, the same farm that you grew up on. What types of animals do you have there on the farm, Jennifer?

Jennifer Hunt Spurling So my dad and brother have a dairy farm, so we have lots of dairy cows. They also have some beef operations, so some beef cattle, chickens through Purdue. And then my sister and I have a small flower farm on the side as well. So we have... All kinds of things going on.

Sam Moore Quite the well-rounded family. And, of course, Purdue Farms is just up the road from you there in Ohio County, Cromwell. to be exact. So I'm quite familiar with that, too. [chuckle] Well, Jennifer, we have a lot of info for the valued patrons out there that I know they'll find quite interesting. Of course, you graduated from Butler County High School. Now, being a Western alumnus, I should know what Butler County is, but I'm a little fuzzy. Is it the Cougars?

Jennifer Hunt Spurling We're the Bears.

Sam Moore The Bears. Butler County Bears. You didn't play any sports in high school, Dixon.

Jennifer Hunt Spurling Oh, not well. I played volleyball for a brief period, but not well. [chuckle]

Sam Moore Oh, well, you know, you played and it kept you moving anyway. So you gave your feet something to do. [laughter] That's never a bad thing.

Jennifer Hunt Spurling Mm-hmm.

Sam Moore But anyhow, you graduated from there, made your way to Lexington. You became a Wildcat, studied at the University of Kentucky. So why don't you first talk about the knowledge and experience you gained as a student at UK and the means by which that equipped you to excel in your current capacity.

Jennifer Hunt Spurling Yeah. Well, I knew from a young kid that UK was going to be the plan for me. I was a third generation UK graduate. My grandfather was there in the 50s and my dad was there in the 70s and early 80s.

Sam Moore So it runs in the family.

Jennifer Hunt Spurling So it runs in the family. So I was excited to go to UK, studied communications and marketing and, you know, just kind of landed in this role and kind of grew the role that I have now because of the experience and knowledge that I gained at UK.

Sam Moore Absolutely. Both my parents went to UK, so I was sort of the rebel going to Western, but at least I stayed in state. And I'm still a Wildcat fan, so, you know, there's definitely... a special spot in my heart for the Big Blue. Now, while you were studying communications and marketing at Kentucky, did you do any internships or side work like that, maybe in the form of employment or maybe not exactly paid that transitioned into your ultimate career path?

Jennifer Hunt Spurling Sure. I had a couple of internships, but before that, I worked four years at the Singletary Center for the Arts as an event manager there and kind of stayed on even a little bit after graduation. And that's where I really fell in love with event management. And a portion of my job now is event management. So that kind of led me into realizing that I liked that.

Sam Moore When you were working for the Singletary Center, you probably didn't realize that that experience would serve you so well for so long, did you?

Jennifer Hunt Spurling Yep. Yep. I had an internship with the United Way of the Bluegrass, and that kind of introduced me into the nonprofit world and kind of opened my eyes to all of the possibilities there as well. So that also helped push me in this direction.

Sam Moore I see. So your your internship with United Way was sort of your first exposure to the nonprofit sector, shall we say.

Sam Moore Now, Jennifer, you've been a proud member of the Kentucky Lions Foundation staff since 2011. But let's back up a bit prior to that and after your your UK student days were over. And why don't you give us a snapshot of your your previous job titles that you held prior to the foundation?

Jennifer Hunt Spurling Okay. So just right out of UK, I got a job at Central Bank and worked there as a teller for a little over a year. Got a promotion shortly before I left there to come to KLEF, but started at KLEF just simply as administrative assistant. Had a friend who worked in the office at the time and got a really good recommendation from him and came in just not knowing a lot about it, but fell in love with the people. All of the Lions Club members embraced me. We had a great board. We're a very small staff. We had a staff of just three. So I came in as the newbie and kind of learned the ropes for a couple of years. We were later able to hire on a fourth staff member who kind of took over my role as administrative assistant and I moved more into the communications coordinator role.

Sam Moore So right along with what you studied in college.

Jennifer Hunt Spurling Mm–hmm.

Sam Moore So you had a connection in the office that's how you were first sort of drawn to it and became familiar with it and so you came to to Louisville from Lexington, and a few years later became communications coordinator. So you've held that particular title, I guess, for a little over a decade now.

Jennifer Hunt Spurling Yeah, I'd say so.

Sam Moore And as your role has evolved, you've been able to do more and more of it remotely, which of course gave you the freedom there to go back to Morgantown where you're from and handle your duties there. Although you do a fair amount of travel in your job, don't you?

Jennifer Hunt Spurling That's right. Yes, I am in Louisville fairly often to go back for certain events and things that are going on. But also just out and about in the state, visiting Lions clubs and different groups to talk about KLEF and what we do and to kind of help promote our events and just upcoming program needs.

Sam Moore Cool stuff. And, you know, it's worth mentioning, I'm sure most people have probably figured this out already, but yes, the Kentucky Lions Eye Foundation is indeed closely affiliated with the Lions Club. Now, how long have you been a Lion, Jennifer?

Jennifer Hunt Spurling Oh... [thoughtful] [chuckle]

Sam Moore It's probably all a blur now, but... [chuckle]

Jennifer Hunt Spurling It is. I probably joined in 2012 or 13. So it's been a decade or so of that as well.

Sam Moore So shortly after you became part of the Eye Foundation staff.

Jennifer Hunt Spurling Mm-hmm. Yes.

Sam Moore You became a... active in the Lions Club, and they've got a great chapter there in the Louisville area. I guess now that you're in Morgantown, have you transferred to the Butler County chapter?

Jennifer Hunt Spurling There's not currently a Butler County chapter.

Sam Moore Oh, there's not. Okay.

Jennifer Hunt Spurling I'm still technically a member of the club I was in in Louisville, I'm holding on to that until I get around to see the local clubs.

Sam Moore That's cool stuff so just because you're slightly displaced doesn't mean that you've lost your spot in the Louisville Lions Club indeed. So we mentioned your travel. You cover a pretty fair territory. In fact, what exactly does your territory encompass besides Louisville? I know you came to Owensboro to talk to the Support Alliance for the Visually Impaired group, which I personally am affiliated with. Do you do much travel in central and eastern Kentucky?

Jennifer Hunt Spurling We go to Lexington some, and then we will go to Eastern Kentucky. We'll really go anywhere in Kentucky that wants to hear from us. We have a really good group of trustees. We have over 30 board members who kind of represent all regions of Kentucky. So we're lucky that we have people kind of boots on the ground all throughout the state. And so a lot of our trustees will go out and visit clubs on behalf of KLEF. So they do a lot of work for us.

Sam Moore Bottom line, you and your peeps will go wherever it is that you're summoned. [chuckle]

Jennifer Hunt Spurling That's true, yeah.

Sam Moore For sure, which is certainly to be commended. So before it's all said and done, Jennifer, I have faith that you'll set foot in all 120 counties. So I think it's just a matter of time. [chuckle] So in addition to your travel and your... your speaking engagements and things like that. What other duties does your role encompass as communications coordinator there?

Jennifer Hunt Spurling Sure. We have a monthly newsletter that I send out that kind of does a recap of each month of our program numbers, people that we've served that month, as well as events that we've hosted, events that are coming up. You know, obviously our low vision clinic opening, that's been a big highlight in recent newsletters. We had a golf scramble back in October. So that's something that we highlight. In addition to the newsletters, it's social media, any kind of advertising for events or programs that we do.

Sam Moore Website management and that sort of thing. Between all that, it keeps you beyond busy enough. But it's nice to know that when travel is not warranted, you can do that stuff from the comfort of your own home. Definitely has its perks. Now, switching gears from you to the organization with whom you've been affiliated now for 13 years, the Eye Foundation, like we said, its history dates back a lot farther than I'm sure a number of our listeners realize. So how about a general outline, Jennifer, of the Eye Foundation's commendable history with maybe a few noteworthy examples of its growth and evolution over the years?

Jennifer Hunt Spurling Sure. So the I Foundation was started in 1954. The Louisville Downtown Lions Club started the foundation. And then in 1958, it became a statewide project of the Lions Clubs of Kentucky. So then we were getting Lions from all over involved. I will kind of flash forward to several years later, but in the early 2000s and more recent time, we started our vision van program in 2002. So we purchased a Ford EconoLine van. We have it housed with vision screening equipment. And that van was taken around to different health fairs and events throughout the state. It has provided a little over 230,000 free vision screenings to Kentuckians since it started in 2002.

Sam Moore That's awesome.

Jennifer Hunt Spurling Yeah. And a few years later, 2004, we started our KidSight program. Through that program, it's a pre-vision screening program for children ages six and under to try to detect problems early so that they can be treated, if at all possible. A little over 250,000 Kentucky kids have been screened through that program since it started.

Sam Moore Yeah, another impressive number. We'll talk more about the Kids' Side program here in just a few minutes, but the Vision Van program is something to get excited about for sure as well because not only has it made its way to a number of... health fairs and things like that. It has also appeared at the state fair, hadn't it?

Jennifer Hunt Spurling Yes. I'm not really sure when they started doing the state fair, but all of the 13 years that I've been there, except for the years that they didn't have a fair due to COVID, we have been there at the Kentucky State Fair, provided. Usually, the last couple of years, it's been close to between 2,000 and 2,500 people that will come through the booth at the fair.

Sam Moore Yeah, that's a great outlet to be of service to a number of individuals from a number of different counties. But I'm sure the Vision van has also made its way to a handful of county fairs across the Commonwealth as well. So if you've not seen it, folks, bottom line. Keep your eye open. You never know how close you're going to be to an accessible screening via the vision van. So anyhow, that gives us a glance at sort of the history of the Eye Foundation. Why don't you now tell us, Jennifer, about the longstanding mission that the foundation seeks to promote and fulfill on a daily basis?

Jennifer Hunt Spurling Sure. Our mission is kind of wordy, but I'll read it off here. So our mission is to provide vision services through education, detection, prevention, treatment, and empowerment.

Sam Moore It's wordy, but inclusive.

Jennifer Hunt Spurling Yeah. So through education, I'll kind of touch on all those points. We, you know, doing things like this, we're educating people about what we do. We have an Ask the Expert interview series that we do monthly that we post on YouTube that where I interview various experts on different topics. Last month, I talked with someone about diabetes because it was Diabetes Awareness Month. So we—

Sam Moore Okay, so it's about a once a month type of thing.

Jennifer Hunt Spurling Yeah, we try to provide some education through that. And then detection, obviously, with our vision screening programs, that's our primary goal is to find problems. Prevention, again, that's another thing with our screening programs. We're wanting to always educate people on how to prevent eye problems, eye injuries, eye diseases. Treatment through our patron program, we help with various surgeries and different types of treatment. And then empowerment. That's a big one that our low vision clinic is helping with because we feel that that clinic is serving people who, with the services that the low vision clinic offers. Can really empower them to live a more independent life.

Sam Moore Yeah, and sort of take charge of their future. And then we'll talk more about that here in a bit. But if they can't help you, chances are they can refer you to other people and resources who can. So that's a big part of empowerment as well. So great, great work that you and your small but mighty cohorts. A small but mighty bunch are performing there at the Eye Foundation. I'm guessing everybody's based in Louisville except yourself at this point.

Jennifer Hunt Spurling They are, yes. So, we are still, we're back down to a staff of three currently, other than we have the two professionals who are helping on our low vision clinic team. You know, they are new, but they're not full-time KLAF staff members. So, our full-time folks are, well, we have one in Louisville and then one in Southern Indiana, but just right across the bridge.

Sam Moore Okay, right across the border there. Yeah, I think we can lump that into Louisville for sure. [chuckle] So, yeah, you're not that far off yourself, about 100 miles or so. So it's definitely easy for you to get to the office whenever you need to. Now, before we speak of the Eye Foundation's all-new low-vision clinic in Louisville, I'd like for us to discuss further a few other invaluable programs under the umbrella of the organization, the first of which you briefly touched on a second ago, and that is the Kentucky KidSight program. But why don't let's expand a little more. You did say that it's designed to assist in providing screenings for those six and under, but talk a little bit more about maybe how that first came to be, as well as the personnel across the Commonwealth who helped to make that a reality.

Jennifer Hunt Spurling Sure. So KidSight started in early 2000s. There was a vision screening device that was very similar to a Polaroid camera. Lions Clubs kind of across the United States got involved with this. And fortunately, technology has just gotten better and better. We're now using a digital camera, which is kind of a point-and-shoot. You can hold the camera about three feet from a child's face. They just look at the little lights that are in the camera.—

Sam Moore Sort of describe what they're seeing.

Jennifer Hunt Spurling They don't have to describe anything. They just look at the lights and the camera kind of captures an image and then it sends us a printout that can tell us if they are nearsighted or farsighted, if they have astigmatism, if they have amblyopia, and a couple of other factors that could lead us to think that they need to see an eye doctor.

Sam Moore Okay, so these brilliant machines can sort of get a feel for how well kiddos are or are not seeing. the lights and things that are presented to them. And these are conducted by personnel in many counties all across the state, right?

Jennifer Hunt Spurling That's right. We have KidSight teams, mostly either Lions Club volunteers or we've partnered with the Kentucky Head Start Association. We have some Head Starts that have some of our cameras that they provide the screenings to their children. So you don't need any medical history to use this device. We train you on it. It's very easy. And then from there, we give the results to the daycare, preschool, places like that, and then they pass it on to the parents. If a child is referred, we ask that the parents take them to an eye doctor for a complete exam as ours is just a screening.

Sam Moore Just depending on what comes out. But it's great that anybody and everybody who's interested can become trained to perform these exams. And they are free to the recipients of their parents, aren't they?

Jennifer Hunt Spurling That is. That's right. Yes.

Sam Moore Yeah.

Jennifer Hunt Spurling They're just free screenings. A lot of the Lions Clubs will connect with different daycares and organizations in their communities. And it's just kind of a free service that they provide and a good way to connect with people in their communities.

Sam Moore So probably not in all 120 counties, but if you don't live in a county where those children's low vision screenings are offered, chances are you're not far from one. And that information can be readily available to you. Jennifer will let you know how you can email her with any questions you may have based on what we're talking about here before we wrap this thing up. Now, the lives of countless Kentuckians have undoubtedly been enhanced thanks to the Eye Foundation's patron fund program. You talked for a second or two about that a bit ago as well. But talk, if you would, more about its main objective along with the collaborative efforts that make it possible, Jennifer.

Jennifer Hunt Spurling And so our patron program is one of the programs that I work on personally. So on top of communications and event planning, I have two programs that I manage, patron program being one of them. So we have a committee from our board that helps to review the applications that come in. And so anyone who is not insured or what we call underinsured, they need help paying for any type of eye surgery. We help a lot with cataract surgeries. We've helped with cornea transplants all the way up to kind of significant surgeries that are uncommon, like iris transplants. We've helped with a lot of different things. but there is an application process. Applicants will submit their application as well as their financial information to KLEF. I, along with the committee, will review that, and then we have some really good surgery partners throughout the state. We work with the University of Louisville Department of Ophthalmology. Their doctors and the surgery center that we work with provide significant discounts to help us to be able to pay for these surgeries and kind of spread the money to as many people as we can.

Sam Moore So if you're if you're approved for these services, exams, what have you, then you will be referred to one of the partnering organizations.

Jennifer Hunt Spurling Correct.

Sam Moore Where they can receive these services and benefit after they've. been approved. But as far as the application process, that's online via the CLEF website, correct?

Jennifer Hunt Spurling Yes, there's a patron program page and that application can be downloaded from the website.

Sam Moore OK, from the patron page. So that's easy. Now, by the way, folks, when we say KLEF, that's to abbreviate Kentucky Lions Eye Foundation. It's sort of like an acronym there that I find myself using. And I'm sure a number of other folks do, especially those closely linked to the organization. Now, the next one I want to touch on here, Jennifer, is the Hollerin Trust Fund. It has been a godsend to many residents in Louisville and surrounding communities. So for those in our audience that happen to live in that neck of the woods, how about shedding light on the most common beneficiaries of the Holloran Fund, along with the forms of assistance available to these folks?

Jennifer Hunt Spurling Yeah. So our Holloran program is a unique program. It is the only program that we have that is geographically restricted. And that was because John Holloran, when he donated the funds to start this program, that was a part of his, kind of what he wanted.

Sam Moore Stipulations.

Jennifer Hunt Spurling Yeah. So it's Jefferson County residents and then any county that touches Jefferson, including three counties in southern Indiana.

Sam Moore Okay, so yeah, he wanted locals to benefit.

Jennifer Hunt Spurling Yeah. It's for people who are considered legally blind, so they do have to send us a letter from their doctor with their vision and stating that they are legally blind.

Sam Moore Yeah, sort of proof of their condition.

Jennifer Hunt Spurling And the assistance really ranges and depends on what that particular person needs. We've had some people apply for assistance with like bus passes and help getting transportation to classes or school. We've had some that need help with assistive devices like talking microwaves, talking clocks, things that just help them in their everyday life. And we've also had some that have needed help with rent on occasion, you know, just we're all humans. We all get behind on things sometimes and they're, the Holloran program is there to help if they can.

Sam Moore And I think I read even some people have used the Holloran program to assist them in covering the cost of like household appliances too, right?

Jennifer Hunt Spurling Yes. Mm-hmm.

Sam Moore Stuff that they may use that aren't necessarily Fancy or assistive per se, but they're essentials and they're necessary for independent living in their home. So it's pretty flexible, but you do have to. you know, send proof of your vision loss and get complete an application but there's no uh there's no certain age range in order to qualify for these services that people have to follow within, correct?

Jennifer Hunt Spurling Not for the Holloran, nope.

Sam Moore Not for the Holloran, no. Okay.

Jennifer Hunt Spurling Any age, you know, they... We do ask for financial information, so a lot of it is based on financial need. So we're, you know, obviously not giving out brand new cars or, you know.

Sam Moore That's not exactly urgent or... totally a necessity. So, you know, they got to draw the line somewhere. But, but you can, I do believe there is, I noticed the Holloran Fund link on the website. So I'm guessing the application and all the other info that we need is available right there.

Jennifer Hunt Spurling Yes, you can download that application on the website on the Holloran page.

Sam Moore Easy enough. And if you have any questions, you can definitely contact Jennifer or one of her co-workers and they'll be glad to assist in any way possible. Now, we can't let this insightful conversation end without highlighting the Eye Foundations, and we sort of have already, but the brand new low vision clinic, which just opened its doors inside the Charles McDowell Center for Independent Living in Louisville just a few weeks back. I believe it was the second week of November, Jennifer?

Jennifer Hunt Spurling It was, yes.

Sam Moore That's what I thought. I know it kind of runs together, but it's going strong now. I guess we're about four weeks in. The official ribbon cutting is in January, but before we get into specifics in terms of services offered by the Low Vision Clinic, how about a rundown of the team members on hand to serve the clinic's valued clientele, Jennifer?

Jennifer Hunt Spurling Sure. Yeah, this is something we're really excited about. The low vision clinic has really been in the back of our staff's mind since 2019. So it's been about five years of thinking about it, trying to figure out how to make it happen.

Sam Moore The culmination of a lot of planning.

Jennifer Hunt Spurling Yeah, and without these two ladies who joined our low vision clinic team, I don't think it would be possible. But our low vision doctor is Dr. Andrea Smith-Gray, and we have a low vision occupational therapist, Jennifer Gindeman, both of whom previously worked at the low vision clinic, which was operated by the University of Louisville before it closed in 2019.

Sam Moore Okay, so they both work with the U of L. Low vision clinic before that closed. They have both since relocated, haven't they? Neither one of them are right there in Louisville, right?

Jennifer Hunt Spurling Correct. Yes. Dr. Smith-Gray is in Maryland and Jennifer Gindeman is in Chicago at this time.

Sam Moore All right, but you can still meet with these people in Louisville, at least Andrea, because Andrea comes to Louisville to see patrons at the clinic. What about once or twice a month? Is that how that rolls?

Jennifer Hunt Spurling Yep, she's there. We're going to have clinics two days a month, and so back-to-back days. So our first days were November 14th and 15th, and then our December days are December 12th and 13th.

Sam Moore Okay, so that'll be here shortly after this happy little podcast comes out.

Jennifer Hunt Spurling They'll be there visiting with the patients. Currently, Jennifer Gindeman is mostly remote work and she handles a lot of the scheduling and just helping patients over the phone and through email. So she has put in a lot of work over this planning process to kind of build out the business plan and provide details that our team weren't aware of because of her experience. And she's been a tremendous help.

Sam Moore For sure. And she's good at assisting people electronically or on the phone, even via Zoom if it were needed. I'm sure that if she hasn't done that a lot yet, she no doubt will be. a fair amount as we go along. Now, Jennifer, if a low vision eye exam is deemed appropriate, there is absolutely no better source than this all-new clinic. So first off, what qualifications must be met in order to receive this eye exam?

Jennifer Hunt Spurling Okay. So we are pretty open. Anyone in Kentucky and then surrounding areas, Indiana, Ohio, I know there are not a lot of low vision doctors in our region. So we realize that people from surrounding states may come in as well to seek assistance as we might be the closest.

Sam Moore Sure.

Jennifer Hunt Spurling But the main thing is we do have to receive an eye exam or report from their doctor that they have been to the doctor within the last three years.

Sam Moore Okay, so that's the bottom line. They have to have a referral. Of some sort.

Jennifer Hunt Spurling They do. Yes. So their referral form is on our website, there's one that can be downloaded or there's one that you can just type directly into and hit submit and it sends it to us. But we do. A patient can refer themselves and attach doctor's notes if they get the notes from their doctor. But we do need that report from the doctor where they've been there, you know, within the last three years.

Sam Moore Right. So the doctors do have to, to an extent at least, be involved with the referral process. For sure, in order to receive those services and exams from the low vision clinic. Now, what exactly, for those that don't know. Does an eye exam of this nature entail, Jennifer?

Jennifer Hunt Spurling So it's a little more detailed than just a regular eye exam. You know, Dr. Smith-Gray will kind of get a lot of information from you before the exam and then talk to you during the exam just about your goals and what you're wanting to be able to do. And then she will assess kind of how we can maximize the individual's remaining vision and improve the quality of life. So a lot of times she will talk to you about your history, about visual acuity, your visual fields, contrast sensitivity, different optical devices that might be available, visual aids, lighting is a big thing. How to provide the best lighting to get your vision to be the best that it can be and then functional vision as well and kind of assess all of your goals, what you're wanting to try to be able to do, and then recommend different devices or training or any other resources that might help with that.

Sam Moore Okay, so a lot of ground is covered, obviously, during this exam. It's very thorough about how long does it normally take.

Jennifer Hunt Spurling We say it can take up to two hours.

Sam Moore Okay, so allow up to two hours always. Just to be on the safe side because, you know, certain questions may lead to other questions once they're answered and, you know, other referral possibilities. So, you know, don't be in a hurry when you go in there and make sure you keep an open mind and open ears to all the information that Andrea Smith Gray has to. offer indeed. It's very useful and it definitely educates you a lot on what you may need. and what's out there. And we can't neglect to mention that the clinic offers other additional services to supplement the eye exams. Of course, you mentioned the therapist, so some of these are going to be in her ballpark, no doubt. But in conclusion, why don't you give us a brief overview of the other resources and benefits accessible to patrons visiting the clinic?

Jennifer Hunt Spurling Sure. So as I mentioned, you know, everyone that comes through the clinic stores is going to have different goals from whether they're wanting to be able to continue to sew or to read or to write or, you know, just to watch TV. Some may even be in the position to, you know, want to continue to drive. So all of these goals will be discussed. And then from there, you know, there could be technology that's recommended, assistive or adaptive devices, you know, during our Holloran talk. I mentioned like talking microwaves, talking clocks, things that are just helpful for people who are experiencing low vision that might just make certain tasks a lot easier. So, specialized glasses, talking devices, and then there's also independent living skills training that can be recommended, orientation and mobility through the Department and Office of the Blind. Those are things that might get recommended. And then just other community resources that the patient might not be aware of if they're... new to the low vision community.

Sam Moore The important thing to remember is, you know, the clinic itself may be able to provide some of these. And if not, they can refer you to other resources and individuals who can, which is great, especially that therapist. You know, if that's deemed necessary or, you know, recommended for you to work with her, I'm sure that she'd be glad to do so with you via Zoom, short term or long term, perhaps.

Jennifer Hunt Spurling Yeah.

Sam Moore So there's definitely a lot you can learn and potentially benefit from based on what you learn during your vision exam. And again, that is located inside the Charles W. McDowell Center for Independent Living in Louisville. For those who don't know, why don't you tell them where the McDowell Center is located there in Louisville?

Jennifer Hunt Spurling Yeah, so it is easy to get to off of the Watterson. It's on Westport Road near the intersection of Westport and the Watterson. So the address is 8412 Westport Road in Louisville, Kentucky. 40242 is there.

Sam Moore So you can plug that into your GPS and it gets you right to it. She even gave us the zip code there. And like I said, two days a month, they will have clinic days scheduled. And I'm guessing those, you know, access to that schedule is available through the KLEF website too, right?

Jennifer Hunt Spurling It will be. [chuckle]

Sam Moore It will be once more of a schedule is established. Yeah, we know when it's going to be, obviously, this month here in December. And I think next month, one of the people in my group from the support alliance for the visually impaired said she was going to go up there next month. So I guess January's dates are ironed out as well. But as more dates are ironed out, you can check the website, gain access to that schedule, and plan your trips and appointments accordingly. So like I said, check out their website. It's kylionseye.org, all one word, lowercase, all that fun stuff. And from the website, you can gain access to KLEF's social media outlets. There are links for those right there on the web page. You can email Jennifer at, let's see, it's at Jennifer.Hunt, right?

Jennifer Hunt Spurling No dot.

Sam Moore No dot. Okay. Okay. I couldn't remember if there's a dot there or not, but just jenniferhunt, all one word, no caps, at kylionseye.org. And so you can email her that way with any questions you may have about what we discussed today regarding the Eye Foundation, the Low Vision Clinic. Also via the website, you can find out more about how you can support the organization and contribute to its very worthy cause as well. I know this has been very educational for us, Jennifer. We've learned a great deal and had a bunch of fun doing it. I hope you've enjoyed yourself here today.

Jennifer Hunt Spurling Yes. Yes. It's been great. I do have one additional plug that I want to throw out here.

Sam Moore Oh, sure.

Jennifer Hunt Spurling I didn't run this by you before, but we have a large event coming up in March. I failed to mention earlier that we host the Mr. and Miss Kentucky Basketball Award Ceremony each year. And so that is coming up March 16th. So if we have any. high school basketball fans listening, you can see some of the best talent in the state there at that event. And that's something that we raise funds to help support our mission during that event. So just wanted to. Throw that out and invite anyone to look into that to learn more about Mr. and Ms. Kentucky basketball and how it supports the Eye Foundation.

Sam Moore Yeah, I know there are plenty of high school basketball fans, given that we're in such a big basketball state. So make your plans to attend. I've not attended it yet personally, but I know I would enjoy it and really get a kick out of it. So, you know, make plans, keep your eyes open, ears peeled for additional details about the Mr. and Miss Kentucky Basketball event coming up in March. And where is that event held, Jennifer, did you say?

Jennifer Hunt Spurling It's in Lexington at the Griffin Gate Marriott Resort, and it's March 16th. It's a Sunday evening. It's usually held in conjunction with the KHSEA state tournaments. So this year, I believe we're around the girls' state tournament. We're the Sunday after.

Sam Moore Yeah. Cause the, the girls, usually ladies first is generally how it works. And then the, uh, The boys' tournament is usually the week later. Are you going to be emceeing that event, Jennifer?

Jennifer Hunt Spurling We have a much better emcee than me. We have Christy Thomas from the UK Network.

Sam Moore Oh, yeah. Also from WKYT, I believe.

Jennifer Hunt Spurling Yeah, so she is our emcee the last couple of years and does a great job, keeps us on track and really does a wonderful job recognizing all of the student athletes that we have from across the state. We have a little over 50 student athletes from all regions in Kentucky represented during the event, so it's a really fun time.

Sam Moore And many of you have no doubt, like Jennifer said, heard Christy during UK pregame. That's in football season. She handles those duties. and does a great job along with her cohorts as well. So we look forward to that in March. And we also look forward to a number of you folks getting involved and becoming even more acquainted with and acclimated to the Kentucky Lions Eye Foundation. Jennifer, thanks so much. You rock.

Jennifer Hunt Spurling Thank you. Thanks for having me on.

Kimberly Parsley Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley, and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Ankin for the use of his song, Change. Don't forget to follow or subscribe so you never miss an episode. And please consider leaving a review. You can find links to our email and social media in the show notes. Please reach out and let's keep the conversation going.

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Transcript

Robotic Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley.

Sam Moore And I'm your co-host, Sam Moore, here in Henderson, while Kimberly is in Bowling Green. How are you, dear? 

Kimberly Parsley I am doing very well, Sam. How are things going in Henderson? 

Sam Moore Oh, we're thawing out slowly, but surely we like pretty much everybody else in the Commonwealth of Kentucky is dealing with some, the aftermath of another snowfall.

Kimberly Parsley It has been a very interesting couple of weeks weather-wise here in Kentucky, hasn't it?

Sam Moore It sure has, because before this snow, which for me was about four inches, and I know for you was about four inches, prior to that, we were dealing with flooding.

Kimberly Parsley We were dealing with flooding, and I think we want to send our thoughts and prayers and heartfelt wishes out to, I think it's 15 people so far in Kentucky have lost their lives from the floods that were just horrific in so many places. So our thoughts are with those family members.

Sam Moore Most of those fatalities, if not all of them, were in the eastern part of the state.

Kimberly Parsley It was, the poor Eastern Kentucky. I mean, they just keep getting battered, don't they? 

Sam Moore They just can't dodge a bullet because I know just a few years ago, 2022, I believe it was, they had the big flooding.

Kimberly Parsley The big flooding, and then I think they got even some with Hurricane Helene, right?

Sam Moore Oh, yeah, because, you know, a lot of the mountainous areas like in western North Carolina and East Tennessee got that. And I think the far eastern part of Kentucky was a part of it as well.

Kimberly Parsley Yeah. And then now hit again. So our thoughts are certainly with those people. 

Sam Moore We hope that Demand and Disrupt brings you good therapy while you're... while you're trying to recover. 

Kimberly Parsley I hope people can listen and I hope things are improving for people in those affected areas. And here I live in, of course, Bowling Green, not, you know, flash flooding can happen anywhere.

Sam Moore Sure.

Kimberly Parsley So that's an issue. Right here in my little part of the state here in Bowling Green, I don't have any kind of aerial flooding where I am. What about you? 

Sam Moore Aerial flooding, you know, obviously depends on where you are. Where I'm sitting in this happy little corner of Henderson, it's not a huge deal, but, you know, it can occasionally happen. And one thing I know from having been a college student in Bowling Green for, I guess, six years counting grad school, you know, you can go weeks, even months without anything huge happening weather-wise, but when it rains, it pours. 

Kimberly Parsley That is true. They used to say they called it the Bowling Green effect. Like storms and stuff would just go around Bowling Green. 

Sam Moore It's almost like a black hole effect. 

Kimberly Parsley Something like that. Yeah. But I think that. Those days have passed, sadly. Those days have passed. [laughter] So my house sits on, the side of the road my house is on. Things don't flood because it's kind of up a little bit. But on the other side of the road, there's a sinkhole situation. And a couple of the houses just across the road did, like, the water got up to the foundations of the house. 

Sam Moore Oh, that's always dangerous.

Kimberly Parsley Yes, yeah.

Sam Moore Just goes to show there are more sinkholes in Bowling Green than just the famous one that emerged in the floor of the Corvette Museum in 2013.

Kimberly Parsley The Corvette Museum. Yes. Oh, was that that long ago? I didn't realize it was that long ago. 

Sam Moore Yeah, I was in grad school at the time, and yeah, I'll never forget. It was 2013, and that was all I heard about. 

Kimberly Parsley Wow.

Sam Moore From, of course, WBKO, the local media, because thankfully it emerged at like 5.30 in the morning when nobody was there.

Kimberly Parsley Right, right. Just the fancy car.

Sam Moore There was some car damage, but that's a heck of a lot better than people damage.

Kimberly Parsley Yes. Yes. It's just so weird that we had like flooding and then there was like snow on top of the frozen, you know, on top of the water that flooded here.

Sam Moore Yeah, yeah, we had, and then when that snow melts that's going to cause flooding.

Kimberly Parsley Yeah, you're right. It is. So I guess the question here is, Sam, when you're stocking up, when you know you're going to be stuck in your house for a couple of days, what are the things that you have to have? What do you stock up on?

Sam Moore [chuckle] You know, most people tell you bread and milk, but for me, it's more like bacon, eggs, stuff like, you know, easy to prepare items like frozen pizzas. Can't ever have too many of those when the weather gets bad because you never know how long you're going to be stranded in the house. When I was in college, I would have told you cornmeal chili and stuff that you could easily heat up in the microwave. 

Kimberly Parsley Yeah, yeah.

Sam Moore Those were crucial as well. I went through a phase where it would have been ramen noodles but…

Kimberly Parsley Oh yeah. Ramen noodles and pop tarts. That's the college diet, right?

Sam Moore Pop tarts, too, red beans and rice. I'm a big red beans and rice fan because it's so easy to prepare and you can just, you know, put sausage in it and you've got a meal there so just blah, blah, easy to prepare stuff that you enjoy and that's easy to eat.

Kimberly Parsley Yeah, and here it's, strangely enough, bacon and eggs, same thing.

Sam Moore I'll say brilliant minds think alike, Kimberly.

Kimberly Parsley Yeah, exactly. I guess it's because it is easy to prepare bacon and eggs, and you can do a lot with bacon and eggs.

Sam Moore Yeah, plus you can do BLTs, you know, but bacon is, bacon serves multiple purposes and it's good for plenty of dishes.

Kimberly Parsley Right, right. Now, you don't want my kids stuck in the house without cereal.

Sam Moore So cereal. Yes. I haven't eaten cereal in forever. Maybe I should eat more cereal. But if you're, but if Ian and Sarah go for several days without cereal, they get cranky. 

Kimberly Parsley Yeah. And they ate the terrible cereal. I mean, they ate like Reese’s Puffs cereal.

Sam Moore Oh, like the candy type.

Kimberly Parsley It's candy. It's basically candy cereal like Lucky Charms and stuff; yeah, that's what they are.

Sam Moore Cinnamon Toast Crunch.

Kimberly Parsley Yes. So, yeah, but you don't want them to be in the house without milk.

Sam Moore Oh, and coffee. As I take a sip of coffee right now, I've got to stock up on coffee before it's no storm.

Kimberly Parsley Oh, yes.

Kimberly Parsley That is the number one thing that, yes, you're right, is the coffee. And because I am a grownup, I also do make sure we have things like Tylenol in case someone, you know, were to spike a fever. 

Sam Moore Oh, yes. Good thought, medicine. Because you never know when that headache's going to pop up.

Kimberly Parsley Right. So I always make sure we have the right over-the-counter medications, make sure that our prescription medications are all filled up.

Sam Moore Absolutely. That's a definite must.

Kimberly Parsley Yeah, exactly. You know, people with disabilities have, they have so, we have so much more to think about when you're talking about emergency preparedness, you know? 

Sam Moore There are other aspects that people without disabilities don't think about and don't necessarily have to. For one, if you're getting your groceries delivered by, like, say, Walmart or, you know, Kroger has a special program now where they can deliver if you live in a community where there's a Kroger. And those folks aren't necessarily going to be able to get to you if the weather's bad.  So you do have to think ahead there. 

Kimberly Parsley You do, and I actually did that because I had to get groceries before my normal grocery-getting day, you know? I do have, I do have groceries delivered and I had to do it a couple of days early because I just, and well, I mean, it's, I appreciate those people who do go do your shopping for you and deliver. And I don't want them to be out, you know, when it's dangerous or even when it's just pouring down rain. So I did that. 

Sam Moore Yeah, it's harder to plan for rain, but at least, you know, when it snows, even though the forecast may not be accurate, you do have to sort of heed those warnings two or three days in advance when they have a pretty good idea that snow is coming. Yeah, if that's the case and you need groceries, you might want to go ahead and order. 

Kimberly Parsley Yeah. And then Michael does things like for us, like he salts the steps, you know.

Sam Moore Oh, yes. Just to prevent slipping just as much as possible when you go out there. 

Kimberly Parsley Right. To prevent me from falling, my balance isn't good anyway. So, you know, there's that. I know a couple of weeks ago we had Carissa Johnson on the show and she was talking about how she had to put a roof over her porch because when it would get slick, you know, and it would freeze, she's a wheelchair user. So she would be up at the top of her porch and she couldn't get, she would just slide back down the ramp when it got slick. So she needed that. And that's something I had never even thought about. 

Sam Moore I hadn't either, but the roof would definitely, obviously, it might not control the temperature, but at least it would keep out the... the snow and sleet, you know, all of those types of elements so she'd at least have a dry ramp.

Kimberly Parsley Yeah. Yeah. And I know there's for, for people who depend on things that are battery charged, it's like, I don't know anything about how that works. Like if, if you have a, like you use a power chair, I guess you really worry about if the power goes out and you can't charge your batteries. 

Sam Moore batteries. Yeah. And you don't want to be without a battery. That reminds me. My dad was at UK during the historic blizzard of 1978, which I was not born yet, obviously, until 10 years later. But I heard all kinds of stories about that. One of them dad used to always tell me was he was walking between classes one day because they hardly canceled class at all. I think one day he said they canceled, but that was it. But the elements were not favorable. A lot for like a month during the blizzard of 78 because snow just kept falling and falling before they could get it cleared off. So dad was between classes. He saw this guy stranded in a wheelchair out in the cold, blustery conditions. And he was like, what are you doing? And the guy in the wheelchair goes, my battery died. 

Kimberly Parsley Oh no, that would be so horrible.

Sam Moore It's the least opportune time for your battery to die. And it was snowing. Of course, there was already snow everywhere. Dad managed to assist him into the nearest building. Oh, that's great. make a phone call, do what he had to do to get the battery situation resolved. But I cannot imagine being out in those conditions with a dead battery.  That's just ultimate bad luck. 

Kimberly Parsley Yeah. Oh my goodness. Yeah. And there's so many things you don't think about. Like, you know, I know it's in cities when there's a plow in the roads, the snow ends up on the wheelchair ramps.

Sam Moore Oh, yeah, when they push it off to the side.

Kimberly Parsley Yeah, when they push off the side, which, you know, that's an inconvenience and a hassle for people who can just walk over it or walk around it. But for someone in a wheelchair, that's, I mean, that's a game-stopper, right?

Sam Moore It is a game changer. You know, you're going to have to do way more work. You're going to have to take more of a detour, way more of a detour than most people to, you know, navigate where you need to be around the snow. 

Kimberly Parsley Right. So, so many things that people have to think about. And so, our interview today.

Sam Moore Another drum roll. [laughter]

Kimberly Parsley I know, right? People doing cool things, like people doing cool things, just, well, number one, it exhausts me, people who do a lot of stuff, but also it just impresses me so much. People who meet these, do these milestone things.

Kimberly Parsley Our interview guest today is a model. She's an actress. She is in a pre-law program, interning at a law firm. And she, well, she's written a book and she's only 23 years old.

Sam Moore That's it? That's all she does? [chuckle]

Kimberly Parsley Yeah, I know. Right. At 23, 23 years old. That makes me tired. It just does. 

Sam Moore Yeah, that's... It wears you out just hearing about her. 

Kimberly Parsley It does. It does. And she was a delight to talk with. Her name is Jessica Frew. She uses something called a Tobii eye gaze camera. She'll tell us all about how that works and let us know. But I mean, just so many things I was looking up. She's actually in a movie that you can watch on Amazon Prime. It's called Crispy.

Sam Moore When you're on Amazon Prime, that's how you know you're big time. I just rhymed and didn't intend to. I'm a poet and don't know it, Kimberly.  Didn't know it. [laughter]

Kimberly Parsley So I looked up her movie. She's also in, I believe, a TV series on Amazon Prime. So she's done lots of things. She's done some modeling. And then she wrote a children's book. Jessica is nonverbal and she wanted in everything she does, she wants to open people up to the possibilities, people with disabilities. And so her book is called The Nonverbal Princess. And she is going to tell us all about that. fascinating interview with her. 

Sam Moore Non-verbal princess. Such an appropriate and catchy title for sure.

Kimberly Parsley Isn't it, though? Isn't it, though?

Kimberly Parsley So now... We will hear my interview with Jessica Frew. 

Sam Moore Enjoy!

Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I am pleased to be joined today by Jessica Frew. Jessica is an author, an actress, a model. She's so many things, y'all. So I am going to let her tell you all about herself. Jessica, welcome to Demand and Disrupt. And so tell us about yourself. 

Jessica Frew I'm 23-23 years old. I have cerebral palsy and communicate with a Tobii gaze computer. I'm a model, actress, children's author, and full-time student majoring in pre-law and criminal justice. I was a teacher-slash-counselor student volunteer for children and adults with disabilities in the center. I used to counsel this boy one-on-one on his behavior and train him on using the TDI series for a year and a half before I started college. In my first semester of college, I mentored a group of individuals with all types of learning, behavioral, and cognitive disabilities. Also, I'm interning at a law firm. 

Kimberly Parsley Wow. That is a lot. Thank you for sharing all that. So now I understand that your children's book is called The Nonverbal Princess. What made you want to write a children's book? 

Jessica Frew I wanted to write a children's book because people have treated me differently since I was young and thought I wouldn't know anything because I was non-verbal. Hence, people used to say very mean stuff right before me without realizing I could understand everything they were saying, making me feel worthless. I didn't even have the confidence to communicate with my computer in public or even with my family. I just used it for schoolwork until I found the confidence in myself. I want to teach children worldwide that people with disabilities or differences who look or act differently are humans with emotions, too. 

Kimberly Parsley I get that. Being blind, people often think they can make hand gestures and things to each other that blind people don't intuit that there's a conversation going on, a non-visual non-verbal conversation going on that we won't know that's happening. And it is extremely hurtful. And I am sorry that you had to go through that. You're 23. I guess I'd sort of hoped things wouldn't be that way for people younger than me, but apparently they still are. So tell me, how did the idea for the non-verbal princess come about? 

Jessica Frew Well, I thought, what would make a kid interested in learning about disabilities? Then I thought about Disney. I thought there was an ever-disabled princess. So I thought, why not make a first non-verbal disabled princess in history? 

Kimberly Parsley Great idea. Great idea. Definitely. And we will link to the book in the show notes of the podcast. And you use an eye gaze computer to communicate. So can you tell me about that computer? 

Jessica Frew A Tobii Eye Gaze is a computer controlled by your eyes, and the way the Tobii Eye Gaze with Microsoft Surface Pro works is that an Eye Gaze camera tracks the person's eye movements, which then moves the mouse on a computer screen. The person selects items, either by holding their Eye Gaze for a specific time, referred by blinking, or by clicking an external button, but with all of technology, sometimes it acts up and has errors. So I just need to wait or restart the computer when it is acting up. 

Kimberly Parsley I hear that about technology. It happens. It is both a blessing and a curse. And you were initially, in the bio I read of you, it said you were initially hesitant to use your communication device in public. And I'm wondering what helps you get over that hurdle? 

Jessica Frew I got my Tobii when I was nine, but I never used it to talk to anyone, not even my family. I kept my computer in my bag when I was at home. I only used it at school for schoolwork and communication with my best friend. I never used it with anyone else. Because, as I already said, people were looking at, talking about, and judging me differently during this time, I decided not to use my computer to talk to anyone outside of my family or in public. I felt really useless and not aware of myself because of other people. So much so that I didn't think I was worth enough to use my computer to talk to anyone. I regret that I never got to have a full chat with my dad on the computer before he died. It didn't matter that we had our own way of talking to each other and that we fought a lot through my eyes without using my computer. The thing I regret most in life is that I never talked to my dad on the computer. Now I'm wondering what the hell was wrong with Jessica and how I let that go. Even on his hospital deathbed, I knew he was going to die. That would have been the perfect time to finally talk to my dad on the computer, but I didn't. It still hurts me that I didn't have the courage to talk to my dad on the computer before he died. Like how I could let other people make me feel so useless that I couldn't even use my computer to talk to my dying father. I still don't get how I let that happen, but I still didn't talk to my computer in public for a few years after that, and the way I talked to it got worse when I stopped talking to my best friend on the computer. Then, when I was 16, I continued to talk to my best friend on the computer. I began to talk to the school's helpers on my computer a little more. But not a lot, and not in public or with my family either. My best friend and I had a fight the following year. I talked to my computer a lot more with the aides and my mother a little, but that was all I did at the start of that year. As the year went on, I got better at using my computer to talk to my mother, the school's aides, and two close cousins. Even though I made friends online while I was at home, I still didn't talk to my computer in public. In the fall of that year, I started hanging out with someone I had known for a long time but had never met in person. We met up in person and started to talk and hang out. Someone gave me the courage to speak in public, but that person is no longer in my life, and I never get the chance to talk to them again, but that's a story for another time. My point is that one person can make a big difference in someone else's life by being kind and treating them like a person. 

Kimberly Parsley That is heartbreaking, Jessica. I mean, I'm glad you ultimately did get past your hesitation. And I think that just goes to show just how much internalized ableism we all suffer from. So your bio that I found also refers to you, and as you said, as a model and an actress. Will you tell me about your work in those arenas? 

Jessica Frew Yes, I acted in a series on Amazon Prime called Surviving the Cartel and a movie on Amazon Prime as well called Crispy. I model in the runway of dreams for Victoria's Secret Adaptive and Tommy Adaptive. I decided to go into this industry because I want to make a difference in it for people with disabilities. When I'm reading, pre-programming my lines into my eye gaze computer, or modeling for a brand, I realize I can make a difference in the entertainment and fashion industries. There's a tiny percentage of disabled, non-verbal actors and models in the industry, and I dream of opening opportunities for other non-verbal actors with communication devices. I want to show producers we can act like every verbal actor slash model in this industry, but they need to give us a chance to prove ourselves. Unfortunately, I took a break from the industry for two years to focus on school, but now since I'm all settled into school, I'm starting to get into the industry full speed ahead and hopefully, I will book projects very soon. 

Kimberly Parsley Well, best of luck and I will keep my fingers crossed and we will definitely be looking out for those movies on Amazon Prime and I will drop a link to those in the show notes. If I can find a link, we will drop a link to those in the show notes for everyone. So what is the state of representation for people with disabilities right now? 

Jessica Frew All I can say is that media representation for people with disabilities has improved over the years, but it has a lot of improving to do before it can be considered as equal media representation because we see less than 15% in the media and 70% is inspirational porn. Also, 60% of individuals with disabilities are victims of violence daily, but we never hear or see that in the media. 

Kimberly Parsley That is true. Those are stark statistics.

Jessica Frew I benefited so much from reading people with disabilities comments and messages about how I changed their lives on social media. It is the best feeling in the world to change people's lives. It reminds me why I work so hard to prove people with disabilities can do anything as non-disabled people. 

Kimberly Parsley How have you benefited from the advocacy of other people with disabilities?

Jessica Frew I benefited so much from reading people with disabilities comments and messages about how I changed their lives on social media. It is the best feeling in the world to change people's lives. It reminds me why i work so hard to prove people with disabilities can do anything as non-disabled people.

Kimberly Parsley And how is it, how important is it for you to be an advocate for other people with disabilities? 

Jessica Frew It means the world to me to be an advocate for people with disabilities because I can change so many people's lives as that one person did for me. Although we are not on friendly terms anymore, and I would highly dislike to give them credit, I don't know if I will be doing things or even communicating today if they didn't give the confidence and treat me as everyone else. 

Kimberly Parsley People come into our lives for different reasons, don't they? There's a season for all relationships. So I am definitely grateful that that person did come into your life. Jessica, I wondered, I didn't ask you anything about your talk show, and I wondered if you wanted to be writing something about that. 

Jessica Frew It's a new talk show where I interview people who have amazing story, and people in the industry, but I didn't have time to focus on it as I like hopefully soon I will have more time, to get really started.

Kimberly Parsley Sounds great. Jessica, it has been wonderful talking with you and we've only touched the surface. We didn't even talk about your adventures as a law student. So next time we'll have you on 

Jessica Frew Thanks so much for having me on. I truly appreciate it.

Kimberly Parsley The pleasure is mine. Thanks, Jessica.  Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley, and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Ankin for the use of his song, Change. Don't forget to follow or subscribe so you never miss an episode. And please consider leaving a review. You can find links to our email and social media in the show notes. Please reach out and let's keep the conversation going. Thanks, everyone. 

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