Episode 39: Changing the Narrative

Kimberly talks to Luda Gogolushko, founder of Includas Publishing, about the importance of disability representation in media. They discuss the evolution of how disabled people are portrayed in media, as well as the possibilities and pitfalls of AI for the representation of people with disabilities in media.

Visit Includas Publishing’s offerings at Includas.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.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to [email protected]

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

Welcome to demand and disrupt the disability podcast.

Here we will learn to advocate for ourselves and each other.

This podcast is supported with funds from the Advocato press based in Louisville, Kentucky.

Hello everyone.

And thank you for joining us on demand and disrupt.

I am your host, Kimberly Parsley and I'm Lisa McKinley.

And today my interview guest is Luda Gogoluszko and she is the founder of Include Us Publishing, which is a publisher whose goal is to increase media representation of people with disabilities.

And she is from the University of Oregon.

So I'm very excited about that.

I'm excited because it's October, which is the beginning of my favorite season, which is pretty much the whole last quarter of the year, because I love Halloween and then I love Thanksgiving and I even love the holidays.

So it's amazing.

It's like the best month of the entire year.

It is it.

I absolutely agree.

It's like, I think it's because finally we're getting some fall weather in Kentucky.

At least we can be convinced that there might be some fall weather coming.

Yeah, I love it.

Are you a pumpkin spice person?

Are you anti that?

I mean, it's it's it's OK, maybe a little and some coffee, but all the pumpkin spice cereal and pumpkin spice, baked beans, all like pumpkin spice, everything.

It's like some of it's a little weird.

I'll give you that.

But I've already gotten my pumpkin spice cream cheese to go on my bagel.

So that sounds like it would work.

I got a got my new decor.

I got a well, I think crystal skull.

I'm sure it's just like glass, but it's a clear skull and it apparently has glitter in it.

So if you turn it on, the glitter sparkles and then there's a candle sticking out of the top.

If you want to go for a little spookier sort of thing, Michael thinks it's the absolute tackiest thing that he's ever seen.

But we love it.

We love it.

It can't be as tacky as what we saw at Lowe's the other day.

It was a 10 foot animatronic skeleton for your yard that was $500.

It was that Lowe's or Home Depot because the 12 foot Home Depot skeleton is like a thing.

It's like iconic now.

Maybe it was Home Depot.

No, it's like a thing.

I mean like people, and then they're so expensive that I've seen people like keep them out all year and put like, you know, like a Santa Claus hat on them in December and then like bunny ears, you know, but yeah, but I'm not paying for that.

I'm judging you right now.

I'm sure you are.

It's fine.

Hey, my tacky knows no bounds, none at all.

We have a little like two foot one to keep in the house.

His name is Trevor because the kids, you know, to thrill, his name is Trevor, you know, that kind of thing.

So the new, the new, the new school is his name is Bob because Bob is the name of a skull that is in the Dresden files, which is a series about a wizard in Chicago.

And there's a talking school whose name is Bob.

So the new school is named Bob.

So what, what do you have?

Do you, do you, I bet you do classy holiday decorations, don't you?

I have a brown hand spun pottery bowl with little pumpkins and, and pine cones in it, but you know, fall wreath, but that's about the extent.

See, you're like pottery barn and I'm like, I don't know, spirit Halloween just threw up in my house or something.

So I wish I was more into decorations, but I can set you up with some tacky Halloween.

I really can.

We did have this witch that would like it screamed and cackled and would like it was attached to the bucket with the candy in it, you know, and it would grab the candy out and it was so spooky.

I threw it away.

I thought it was demonic.

Alex brought it home.

I'm like, this thing is scaring me.

So we have outside, we have like the led lights around the back porch and not, not, not like holiday or anything.

Just, uh, there's just the led strip of lights around the, our screened in porch.

And Michael was out there doing something with the dog.

And because it's, you know, Halloween is coming, I, I turned them because they're Alexa enabled.

I had to whisper her name or else, you know, uh, I'll summon her, but so I changed them.

I had Alexa change them to crimson, change the color of the lights to crimson while Michael was outside with the dog.

He was like, he just, I heard him holler that's creepy.

Stop it.

Oh, Halloween is fun.

I miss how I miss taking the kids trick or treating.

It was my, I think one of my most favorite things to do with the kids.

So, uh, I like the candy, but I like, I like, I like the adult parts of Halloween taking the kids trick or treating with that was probably my least favorite thing because really I loved it.

Did you?

Oh, that's awesome.

Did they get into like, uh, dressing up his stuff?

Did they do that?

Yeah, they dress up, but I mean, they weren't like super, you know, it was like, you know, I'm a procrastinator, so this is well established.

We would always get the, you know, whatever costume was left the day before Halloween, but just walking around and, you know, listening to their excitement about getting the candy and, and everything.

That was always fun for me.

Did you ever do like homemade costumes?

Yes.

One year.

And this was my favorite Halloween of all David.

It was his last Halloween dressing up.

Um, he dressed up as a high C fruit box.

Oh, wow.

Okay.

My brother-in-law found a box that had the exact same dimensions as a high C fruit box, except bigger.

Oh, okay.

Uh huh.

Got the whole, and my niece, she, she painted it orange and she put the nutrition label.

She copied it verbatim off the box.

Patrick put a little hole with a PVC pipe for the straw.

Oh, cool.

I mean, people were throwing him fistfuls of candy because this costume was so cool.

That's awesome.

That is awesome.

So we have white cane day, which comes up October 15th and the white cane is symbolic for people who are blind to use.

It's to identify us as someone who's blind, as in we didn't walk out in front of you in traffic on purpose, you know, and so please don't run over us.

Uh, I think most Kings have a, most of them all have a, like a red reflective strip at the bottom.

Don't they?

Yes.

So, and I was thinking about this yesterday.

You and I were at a meeting and someone was there and she asked that there's something you could put on the end of a white cane.

It's called a marshmallow tip.

And you use that if you're, you know, if most of your travel is inside it.

So you don't like bang, bang, bang against every surface that you touch in the wall.

It's just kind of a softer tip.

And she said, does anyone know how to get gum off a marshmallow tip?

And I told her, just throw it away and buy it.

So not that expensive.

And you don't want to be playing around with somebody else's gum, somebody else's gum.

Yep.

Exactly.

But I mean, you know, that is a problem.

I was, I could, I went through cane tips when I was a cane traveler.

I went through cane tips like crazy.

I mean, cause you're just filing them down every second you're using them outside, like on campus.

And I walked really fast and I still walked fast.

So I was constantly breaking my cane because I would, you know, it's there to protect you in case you run into something, but when you're running into something at high speeds, they kind of sometimes snap.

So I've snapped a lot of white canes.

The snapper, they punch you in the gut.

Oh yes.

You know, yes.

When you're going too fast and the cane stops, but you don't and it's a sucker punch for sure.

Yep.

Exactly.

So, so, you know, I, I was a very confident traveler when I was in college, not so much anymore.

Now that I have the balance problems.

I feel the same.

Because, you know, you get out of the habit of it.

I mean, mine's not balance issues.

It's more so that I'm, I'm not in an environment where I'm traveling independently a lot anymore.

So I get out of the habit of using the cane.

I've used it, I use it a lot within the, you know, massage school, but even there I've, I'll lean it up against the wall and just walk around the place without the cane.

Cause it's not a very big place, but yeah, I don't feel as confident anymore.

And I wish I was because wasn't it kind of cool to just whip that thing out and, you know, whip the cane out and just like take off.

Like you're the boss.

I don't think I ever felt like a boss.

I never felt like a boss.

No, no, no.

I was always kind of an apprehensive traveler.

I loved having a guide dog.

I really did.

But the thing with having a guide dog is you've really got, I mean, to work them properly, you've got, you've got to have places to go.

And most of my travel, you know, living in here in Bowling Green, I usually have to get a ride because we don't have public transportation.

So I get a ride.

So, you know, it's not really worth it anymore to take the dog from a car to a building, you know?

I mean, that's, that's not really going that far, but on campus, I loved having a dog.

I wish I had the dog.

I never, I never went the dog route, but who knows?

But in college, when I had the cane, I almost had like this sense of blind entitlement, like this cane will open doors for me.

And literally it did.

If you, if you walked around and somebody saw you had a cane, you were always getting the doors held open for you until, you know, every once in a while somebody didn't hold the door and you're like, how rude, don't you see that?

And, and, um, once like my entitlement, it got so bad.

So I'm walking down campus with my cane and I'm, I'm about at my dorm and I get on the sidewalk to the dorm and I'm, I'm hauling like a, you know, walking fast and crash.

I crashed into something, my cane breaks in half and it's a car.

It's a car parked right in the sidewalk of our dormitory.

You know, you're not supposed to have a car on the sidewalk.

So I was like so mad.

I went inside and I called the campus police and I'm like, there is a car parked in the, in the sidewalk.

So they called me back about 30 minutes later and I'm like, ma'am, did you call about a car in the sidewalk?

And I'm like, yes.

And they're like, that was our police car.

We had an emergency.

So I called the police on the police.

They were in your way.

So white cane day, October 50.

So very exciting blind blindness awareness month.

And then also disability employment awareness.

So I was wondering, Lisa, what do you, if there was anything that you wished employers or prospective employers were aware of, what would it be?

I think it would be that for me personally, I would say I could, I can do the job just as well as anyone else.

It just takes some modifications and, and I would want them to know they don't have to come up with the modifications.

I will let them know what those modifications need to be.

And it's nothing that's going to break the budget.

It's nothing that's going to be time consuming or it's just a little, just, just a little thing.

And, and I can do the job just as well as anyone else.

You know, that, that's so interesting because mine is basically the exact same thing.

Mine is all I'm asking is just to have the tools I need to do the job.

It's just that my tools may be different.

You know, I mean, you wouldn't dream of giving another employee a laptop computer that doesn't have the programs on it that they, that the person needs to use to be successful.

Right.

So same thing with me.

I, I need the programs on there, like, you know, uh, text to speech to be successful.

So that it's, it's just the awareness part of it is just be aware.

I just need different tools.

That's all it is.

And do you think a lot of the apprehension with hiring someone with a disability, it's they think you can't do the job.

So saying no to the accommodations is a way of not hiring you at all.

Or what do you think?

Think that people think because they couldn't do the job without being able to see that there's no way we can do the job without being able to see exactly.

Nevermind the fact that we do all the things without being able to see, you know, I just think because people think, oh, I, there's no way they can do that.

And it's like, you know, accounting or some such like really.

Um, another thing employers should know is, you know, we've been living with these disabilities our whole life.

The world is not set up for us yet.

We have managed, we have come up with creative solutions and we are amazing problem solvers.

And I would speak for most people on that one, most disabled people, I would say are pretty darn good problem solvers.

And that's what you want on your workforce.

Yep.

People who are resourceful know how to get the job done.

Yeah, I absolutely agree.

But I don't think, I don't think any, I don't think any employer thinks of themselves as being ableist or thinking, Oh, I would never hire a disabled person, except they literally would never hire a disabled person.

You know, so just, I mean, you know, it's one thing to you were, you were talking about people, you know, holding the door open for you when they see you have a cane, you know, that's nice.

That's just manners.

That's just being polite.

That does not an ally make.

Right.

You know, I mean, just, just because you're nice to disabled people doesn't, doesn't mean that that doesn't make it okay that you aren't hiring somebody here.

You know, it doesn't mean you're a champion for us.

Right.

And there you go.

Yeah, exactly.

So, and I think that's important.

This is an important conversation that we, we can have, you know, this month about awareness.

And so listeners, if you'll have anything, you know, any, anything to add any about this topic, because it's an important topic.

I would even love to get employers talking about that, you know, And I'd love to hear your stories of maybe discrimination you've faced in the workplace or while trying to get a job.

I remember trying to get a job, a summer job at just like a, an amusement park.

And they told me that I shouldn't work there and couldn't work around the sodas because I wouldn't be able to see a bee that might sting me.

It's just ridiculous.

So yeah, so, you know, send us an email, let us know what you've faced in that front.

Absolutely.

We would love to hear that.

The more ridiculous, the better.

We would love to hear it.

So demand and disrupt at gmail.com.

Can't wait to hear it.

So, and now onto our interview with Luda Gogoluszko.

I'm joined today by Luda Gogoluszko.

She is the founder of Include Us Publishing.

Hello, Luda.

How are you?

Hi, I'm good.

Thank you for having me.

You are most welcome.

And I want to let our listeners know that Include Us is spelled I-N-C-L-U-D-A-S. Is that correct?

Yes, it is.

Excellent.

So tell me about Include Us Publishing.

Yeah.

So Include Us Publishing is really focused on bringing disability representation into books and also supporting authors, interns, staff, editors, and illustrators who may or may not have a disability.

But it's really rooted in just like showcasing disability in media due to the lack of that representation not being seen.

Over the years, right now, I think it's being pushed forward a little bit better.

But that is really where Include Us was born is to see more authentic, positive representation, especially in children's media, because there's just such a limited amount of that.

And if there are representations of disability in media, it always has a tendency to be very harmful or stereotypical and negatively impact disabled people.

So that's sorted in a nutshell of what Include Us is about and why it exists.

Awesome.

And so what happened to make you say?

I think that something needs to be done about this.

Was there any spearhead kind of moment for you?

Kind of.

I guess 10 years ago, I wasn't sure what I wanted to do with my career.

I was finishing college.

And it seemed that a lot of people were telling me what I should do.

But I didn't really ask myself what I wanted to do.

So I just decided that something with stories and something with books kind of brought me peace and joy and the sense of, I guess, safety in regards to world building a world that I wanted to create.

Because disability and reality and society, it's a really hard world to live in.

So I guess it started with one book and then it eventually evolved into shaping to be more of a small press, which led to really bringing on different members to be part of the team and authors and illustrators.

So it wasn't like one day I was like, I'm going to start a press.

It sort of evolved over the years and kind of grew in that respect over time.

And why a publishing company instead of like lots of people start non-profits or they go into a particular advocacy work?

What about the publishing field drew you to that?

Just the creation of books.

As a kid, I would always cut up magazines and pictures and reorganize them to have a layout or a feel or theme that I wanted to create.

So I would cut out all, in my time, the Spice Girls.

I would cut out all of them that I would see in magazines and create my own Spice Girls magazine.

And I used to love, gosh, what was it called?

I think it's called Disney Adventures Magazine.

And it was like really tiny or I guess like a pocket-sized magazine for kids that talked about Disney stars and movies and whatnot.

And they always had this page where it showed how the magazine was organized and all the different floors that it would go through.

And I just love the idea of putting together different things into each other.

And that creative side of me was just so confident that I would enjoy doing that with books as well, like piecing things together, moving this and that, and looking at the layout.

And so I just wanted to put together books and create books.

And it was during that time where it was starting to become a little bit more common to create small presses.

And I guess technology was also up for grabs where it allowed me to do that, where you don't have to be working with a big publisher to do that.

You can really create your own imprint and the books and the titles that you want to see in the world.

So I guess there's a lot of things that align with my passion, my childhood creativity and the technology and the age of books and digital content was also allowing me to do that as well.

It's been a very freeing.

The gates are wide open over the last 10 years in terms of publishing, haven't they?

Yeah, definitely.

Especially in the last five years, for sure.

Yeah.

It's been wonderful to see.

It really has.

So it's amazing what you've done.

So tell me about some of the titles that Include Us has published.

Yeah.

So we have a few picture books and I personally have two.

One is called Luda and Cherisie making friends.

So when I was a kid, I gave my wheelchair a name and it was Cherisie.

That's awesome.

Thank you.

It was just something that I kind of had to myself and I didn't really know a lot of other people in wheelchairs except those that I saw at the Muscular Dystrophy Association summer camp, the MBA summer camps.

And so I really wanted to foster this idea that friendships are friendships, whether you're in a wheelchair or not.

Even though it could be scary because growing up, even now I feel like with kids, they just look at those who might look different, quote unquote, maybe as unsure how to approach a person in a wheelchair.

And so I really wanted this book to illustrate that even if you feel like no one likes you or no one really knows how to talk to you, everyone's still a person and a human and you can be friends with anyone regardless of whether they are in a wheelchair or not.

And that was a couple of years ago.

I think a lot of the times it's really exciting to create a book and base yourself in that kid-like fictional character.

But recently last year, I also worked with Melquia Smith.

She was the illustrator for The Biggest Gift of All. And we really explored the idea of what is a gift that you can give that is so big to like your best friend that you bring to your birthday party when everyone else has the opportunity to bring even bigger gifts.

So that was a really interesting and fun aspect of friendship as well to play around with and the colors.

And that was really, actually really interesting and fun project to explore.

And I really wanted to make sure that we always see disability on the cover, especially disability representation that is not regularly seen.

So with this recent book, Melquia Smith, she designed a black girl, disabled girl in a wheelchair.

And we're like, we're putting her on the cover as I always try to do.

Well, I do always with all the books is to see that disability on the cover, because even if there is representation in media, it has a tendency to like hide or like not be existent or just not be disabled and proud.

And so we do that with also one of our, or actually both of our YA books where Good Morning Dinah, we show high school scene and it's the main character with her service dog.

And then The Pearls of Yesterday, we also include a wheelchair and the character along with her, I guess, love interests, but she has two.

And so that is really important for all the books that I make sure go out into the world is that people know and people see positive images of disability versus what is commonly stereotypically out there when it comes to media representation that is being created by non-disabled people.

If that makes any sense.

It makes perfect sense.

Yes, absolutely.

So the books that you mentioned, which do sound amazing, do people reach out to, I guess, your website to get those?

Are they available from Amazon and Barnes and Noble and all those retailers?

Yeah, definitely.

They are available on Amazon, bookshop, Barnes and Noble, any major outlitter or I guess retailer, book retailer, independent.

What is the indie?

I think it's called the indie bookstore, but they're definitely available.

And if they are not, feel free to let us know or reach out.

Yeah.

And if they're not available, you know, at your local bookshop, then go up and ask for them.

Yeah, you can ask for it.

Definitely.

Also, I would suggest libraries too.

Many times a library will take on an ebook or a physical book.

We're also happy to donate books to libraries too.

So if that is something that anyone is interested in, I am more excited to more than excited to offer that as well.

Awesome.

So are the books that you mentioned were kids books and young adult?

Are those the titles that you specifically do?

Yeah.

So we basically do more on the kids side and YA, and then we do a little bit of middle grade as well.

And I would say more, more maybe 70% is kids related.

We also have a coloring book that showcases different activities, disabilities, and just a collection of kid related material that also incorporates a variety of disabled characters in there.

That is so important.

It is so important to do those kinds of things.

And so one I have to ask about, cause this is just the best idea is the brides in wheelchairs wedding planner on your website.

Yeah.

Tell me about that.

Yeah.

So the brides and wheelchairs project is basically the same idea of showcasing disabled brides and love stories that are just not seen.

What if I've never gone or I, my background is in event planning as well.

I majored in that when I went to Cal State Northridge.

And so in studying that, I just never saw weddings and bridal and disability.

And it's a niche that I'm really curious to explore because I love taking a space that is not inclusive and being let's make it inclusive.

And so that's also a side project that has been in development for some time, but it's the idea of just seeing more representation of disability, especially in the wedding space because it's so important.

It's so important just representation in general, but overall the book is a wedding planner that is designed to be inclusive and disability friendly.

So for example, normal wedding planners, they will ask certain questions, but they won't ask, oh, is there a ramp?

Is there a ramp that you can rent out?

What are the tips for trying on wedding dresses when you're in the wheelchair?

So things that are never considered and wedding planners, because we don't see that representation.

And so that is really what that project is about is to bring that notion and awareness and say, put a stamp on the importance of being inclusive.

And that includes disability, which is one of the most excluded non-dominant groups that we see a lot, a lot everywhere.

True.

And such good ideas in there.

Like you talked about, in addition, just just making sure that the, the, the venue is accessible, but you also talk about like having extra pins to pin up the dress.

Yeah.

And I love this, the go-kart decorated with the just married son and stuff that such great ideas that I'm sure other people have have thought of smart things.

I am not one of those people.

I, I did not know what I was doing with my own wedding.

So, but this would have been great.

And I mean, because I'm blind, you know, all those magazines like bride and modern bride and all those, they were, there was just not anything in them.

There was nothing there for me, you know, they're all glossy pictures and stuff.

So, I mean, I had to rely on other people's eyes so much.

So yeah, there is definitely a need in the disability space for that kind of thing.

And I'm so glad that you filled it.

Wonderful.

People should look that up.

Yeah.

I, you know, it's a very small little itty bitty project, but I do think you have to plant the seed of what needs to happen.

And then hopefully eventually it will grow in some capacity.

But if you don't start and you don't plant and you don't try, then it's not really, it doesn't really have the opportunity or chance to become something bigger, whether that rejects the project forward or someone else gets inspired or gets picked up somewhere else.

Those things just, they need to be out there.

Yeah, absolutely.

And it's, it's a little project, but you know, somewhere, somebody, maybe someone listening to this is trying to maybe, maybe it's a woman who's trying to figure out how big a wedding can she actually do.

And she's always wanted the big wedding, but didn't think she could have it.

And now she realizes she can.

So that's a big thing, you know, a little project, but a big thing for someone, you know, that is true.

Yeah.

So wonderful.

So in terms of media, in terms of representation, how has the media landscape changed since you started include us the overall media landscape?

I mean, film and TV and books and everything.

What would you say?

Yeah.

Well, I can talk about, this is my niche.

This is my expertise.

This is what I do research in.

So I had absolutely to absolutely talk about this for a long period of time, but I guess in summary, there is this push to create more positive, authentic representation now than there was, I would say 10, 15, a hundred years ago, because we're really seeing disabled communities and organizations push for that change.

And that is something that is always been happening.

It's disabled people coming together and advocating for change, like pushing for it so hard because everything is against us.

And when I say us as a wheelchair user, I see it, I experience it.

And so I can see a little bit of change, but also the patterns of stereotypes and stories media, that will be really hard to change unless there are disabled people in power.

And that is what makes it so hard is what we're really pushing is to have control of our own representation.

So a lot of times disability representation in media is created by non-disabled people.

And with that, they take certain images or a lens that really is very one-dimensional or like one characteristic or the stereotypical idea of what they think disabled people or disability representation should look like to appease the non-disabled audiences.

And so in that fight of disabled people fighting for their own representation, I just want to put the emphasis of like having someone else tell you how you should be represented.

That in itself is like such a problem that I have.

And I really hope, and I really do think that these little changes and these little organizations and groups and books and films that are starting to really pick up attention will turn the wheel slightly in having disabled people behind the camera in front of the camera and having accessibility, having access to that.

It is not just, I've heard this so many times, well, we just don't see disabled people in society, so they must not exist and they must not want to be out in the world.

And that is so, so not true because disabled people are forced into isolation.

They're forced into segregation, which plays a lot into media representation.

And that is accepted.

Like that kind of manipulation is so accepted into society that no one really empowered questions that because they benefit from this systemic oppression that disabled people face.

So I guess to answer your question, that will still exist.

But yeah, with technology and the way that the online community of disability has bonded and pushed change forward, I think will only grow.

I do have caution looking at AI.

That will determine the future of media representation, disability representation.

Because in a recent study that I did, a lot of the stereotypes came up when I asked like, Oh, can you create a story about disability for a child?

And the AI would create certain stories that would include the disabled person didn't have any friends or they were isolated, or the fact that they had to be an inspiration for the rest of the world.

So I think we're in a time where media and representation is like people and advocacy are just, we're changing and we're kind of evolving.

And so that is probably the biggest change that I've seen in the last just 10 years, or even honestly, in the last two or three years.

So I'm really curious how VR and these technologies will change the future of how we look at media, how we engage in media, how we understand media and how we understand representation through media with all of these changes of like AI writing books, AI creating music and film.

And that has been around for a long time.

But I think right now is on the crisp of what like, what is this going to look like?

Because essentially, you can manipulate manipulate so much data, and so much information to create the representation that is desired by basically at your fingertips and at your disposal and what you want to see or like what audiences want to wants to see, especially on social media, I do feel there's a there's a rise in that representation and fighting ableism, but also trying to be authentic and just that space on social media, I do think is also pushing certain narratives or media representations into people's existence to start talking about it.

So I feel like there's a lot of different layers to answering how has the landscape and media changed.

I do think that news and newsframing and journalism still still is a little bit outdated in how it frames stories about disabilities, and who writes those stories and what stories get picked up what stories do not.

But in regards to books and literature, I do think that will change that will sway because there's such an easier access to, you know, you can self publish a book as well, and it can really skyrocket.

So social media and books, I think will have a huge impact, and also AI on the future of representation.

And then who gets to control that is really up for grabs at this point.

Yeah, because I mean, AI, if you're talking about the large language model, it's, it's just, it's basing what it's doing on what's existing out there now.

Exactly.

Yeah.

And if what's existing is stereotype, and inspiration born, then guess what the AI spits back out.

Right, exactly.

Yeah.

But you know, places like Includus and your, your, your blog, your website, those kinds of things, we're putting the good stuff out there, too.

Yes, absolutely.

So, so tell me, Luda, where can people go to find more about you and about Includus Publishing?

Any social media, just kind of the at Includus, I-N-C-L-U-D-A-S. And we are, we're like faintly on TikTok and faintly on Twitter, but our presence is more on Instagram.

Instagram.

Okay.

Includus on Instagram.

Excellent.

And this was a wonderful conversation.

Thank you, Luda, so much for joining us today.

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

And you can find links to buy the book, A Celebration of Family, Stories of Parents with Disabilities, in our show notes.

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Episode 38: A World of Feeling

Kimberly talks with Danielle Burton, Communications Accessibility Editor for the American Printing House for the Blind. They talk sports, public transportation woes, and haptics, which is a standardized system for providing and or receiving visual and environmental information as well as social feedback via touch signals on the body.

For more about haptics, visit: Helen Keller Haptics Video Series.

iCanConnect, also known as the National Deaf-Blind Equipment Distribution 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.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to [email protected]

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:

Welcome to demand and disrupt the disability podcast here.

We will learn to advocate for ourselves and each other This podcast is supported with funds from the Advocato press based in Louisville, Kentucky Welcome to demand and disrupt a disability podcast.

I am your host Kimberly parsley and I'm Lisa McKinley.

Thank you for joining us Yes, thanks.

Everyone.

We are interviewing or I'm interviewing today Danielle Burton.

She is the Accessible communication accessibility editor for the American printing house for the blind and That's a mouthful but what it is is she's the person who they have a lot of people with people who are blind and deafblind and such in at American printing house and so she's the person who edits all the documentation and things they send out to make sure that it's accessible for screen readers and the like and I Want my own personal communications accessibility editor.

What about you?

So do I?

And I want I want every company to have an editor Like wouldn't that be cool?

Yes, that where they have to make sure that all the stuff they put out is accessible.

That would be yes That would be equally awesome.

So Danielle Burton is Wonderful, and she's amazing and you're really gonna enjoy my interview with her.

She told me something about a I Don't guess you call it a language but a form of communication called haptics.

And so basically what this is is where someone will will give you signals on the body to convey information about like the environment or social feedback or something like that like like if say your boss walk you're given in a presentation and your boss walks in and like that might be information that would be good for you to have but if you're blind you Can't see that right?

so a person like assisting you would be up there and would like Tap on your back in such a way as to let you know that hey, the boss just walked in Wow, that would come in really really handy, wouldn't it?

It would It really would and I I can't really figure out if it's I think there's an aspect to it That's formalized like I think there are certain things that mean certain colors or or things you know, I think there is a it's not formalized but standardized words that standard symbols and things and but some of it's not some of it's just cues or things that you would have worked out and of course it would she mentions like where they would like draw a thing or tap the signal or whatever on your back, you know, cuz that wouldn't interfere with what you're doing or I've seen this example of like I bet you've done this like where you're trying to get somewhere.

So you open your hand Flat and someone kind of draws like a map on your palm Yes, not not an ink but just you know, like with their finger, you know what I mean?

Yeah.

Yeah yeah, that would be so helpful in so many situations like, you know, like if I'm Talking about my kids and they walk in the room and I don't know it Your kids are in here.

Yeah, that's that's a perfect example exactly I'm sure it's used for much more important things but yeah, I could see how in everyday little circumstances and we were just talking about how quiet my husband is and Kind of when we're out in public, he's super quiet and he's super quiet.

Yeah.

Yep I can't even let me know when he's a real hill just kind of rub his finger on the back of my arm and I know that he's Rejoined me wherever we are.

So I mean, I guess that's maybe a form of haptic.

I don't know.

Yeah I think that that may be between you all that's kind of a non-standard form I know with me and Michael, you know if I'm walking sighted guide And I'm holding on to his uh, I'm holding on to his arm and let's say somebody says something Ridiculous, I guess he has this sign He'll kind of like he'll kind of like tap on my fingers where my hand where my arm My hand is on his arm and that tap means essentially What a load of crap, you know, it's like this secret eye roll It's like the ADA compliant eye roll you guys have Like because if I mean if people could see you know You look around and you'll give someone like yeah, like an eyebrow, you know, like you're giving someone a look like can you believe?

They said that or whatever, you know, so we can't do that So Michael just gives me a little tap on the fingers Which is you know, like that's one of my biggest regrets in life that I can't roll my eyes like oh my gosh I would be in trouble all the time haptics now we we have we have a whole new thing and I'm gonna I'm gonna put a link to the show notes, uh, it's the Helen can Helen Keller Center the National Center does a Training on stuff and they have some training videos And so I'm gonna drop the link to that in the show notes about haptics also this week the Olymp the Paralympics just wrapped up and I was wondering did you do you watch the Olympics or Paralympics or any?

Such sporting stuff.

I did when I was younger.

I used to love to watch Ice skating.

I don't know if they have Paralympic ice skating, but I don't even know How popular Paralympics was 30 years ago, but no I should watch it more but I know there was a picture circulating of a blind Olympian that won a medal for Track and field or some some sort of foot race and his guide was on the podium With him and I think it was really cool because it was captioned about how you know We all get where we are because of others because as his guide had to train Just as hard as he did and I thought that was really cool.

Um, we all of us disabled or not, we're all here because of You know the help of someone else so yeah, all of us.

Yeah, exactly.

That is cool.

Yeah, that's cool.

I Paralympics you hear a lot more about it now than you used to I mean used to I never I mean, I knew Olympics and I knew Special Olympics, but not Paralympics until you know, I was an adult I guess I assumed they had them long before then but I Was not exactly an athletic type person.

So what about you?

Did you ever do any sports or compete in any sports?

I did I competed in judo when I was in high school and then my first year in college and When I was in high school, I really enjoyed it.

It was kind of like fun just and we went to different competitions and then actually my freshman year of college I started training here in Bowling Green and They wanted me to train to go to the Paralympics But you know, that's just wasn't where my mind was at the time I was doing it for the socialization and the exercise and the camaraderie, but I didn't really have any interest in that and I think Kind of was annoying to them on their part, but you know, we all have our thing Yeah, I mean So I am impressed first of all also Tim explain what judo is.

Oh, okay, of course judo well I'm sure most people know what wrestling is judo starts in a standing stance so you have your two opponents and They come together.

I think you come together about two or three feet apart from each other no contact and then once the The whistle is blown or the referee Gives the signal.

There's some kind of Japanese word for the referee.

I don't really remember what that is right now, but then you will grab your opponent's lapel and they grab yours of Your gi which the gi is the little robe outfit that you wear with a little belt But you grab each other's lapel and then you kind of try to knock each other off balance and who hits the floor first the you know the person who put the other person into the floor, you know gets points and then you basically go into wrestling where there's you can pin your opponent or choke out your opponent and all different things that will get you points and Once your opponent taps out Then the match is over So do you still keep up your practice at all?

I don't but I'll tell you a funny story.

It has been very valuable because one thing you do in judo is one thing in practice is people throw you to the floor over and over repetitively as Part of the drills and you learn to fall in a way that you won't be injured and in college this was like a few years after I stopped practicing someone came over to the to the dorm and spent the night with me and I gave them the bottom bunk and I slept on the top bunk and I Was in the habit of keeping my talking alarm clock on the floor and to make myself get up I would just roll out of the bed onto the floor and then turn off the alarm clock Well, I did the same thing but from the top bunk Which was like, I don't know five feet or more and I just rolled onto the concrete floor But I instinctively fell into the judo fall position.

So I didn't hurt myself That was really cool.

You learn to protect yourself.

It's a it's a good sport for the visually impaired Hey learning how to fall.

Well, that's a life skill right there.

Yeah Metaphorically and literally learn how to fall Well, you learn how to break people's arms and choke people too.

So that's always fun What does Patrick say about this is he?

He knows I use my powers only for good.

Oh listen to that listen to that.

I love it.

That's awesome Better you have the bluff on him.

Yeah, that's probably it The Paralympians, I mean just all the training so much work Hey, they put so much work and effort into and they don't get as many of the big sponsorships and things like the Olympians get then you and I Attended an event together this past Friday.

We don't do much things together Should more we should we went to the Kentucky Department for Protection and Advocacy Who have we who we have had on the show Beth Metzger from there?

they did a training here in Bowling Green for disabled people about voting and we went and another person from the South Central, Kentucky Council of the Blind went and it was interesting and fascinating and You know, I think it's so important that well number one that they did that that they they're out there and that they're like Hey, you know, we want you to vote.

So we're gonna Answer your questions and you know, you may not know this you made the news who made the news you did me me I'm at least your face Yeah, the local television station was there.

No, I didn't know that Yeah, you and another One of our members you can see them in the background you and him in the background of the video sitting and having a conversation Really?

Yeah, so Okay, you know our voices, you know, we made our voice heard we we Represented and I think it was great that they came out and you know tried to give a little more education on accessible voting You know, there's progress to be made but there we're taking step forward and I think that's great Yes, and it's it's important that they were there doing the training and it's important that you know people showed up, you know And there were several people there that we showed up and said hey, we're interested we do not want to be we do not want to be ignored or have our Opinions or our needs shunted aside We want to have a voice and be heard and we showed up and did that and I think it's great I remember something David all good who works for the Center for accessible living He does advocacy stuff in our Louisville office told me was that When you you know when you're writing to your elected officials, they can look up They can't see how you voted but they can look up and see whether you voted in the last like I don't know Election to elections, whatever they can see whether or not you voted not how I'm not how you voted or who you voted for but that you voted so It's important that we vote because it it carries more weight when we want change when we go to our elected officials and say hey You know, I Have a problem with this.

I would like for you to work on my behalf for her this and One of our members from our local group said his daughter votes and you know, so a lot of times when the elected officials local officials are canvassing the neighborhood looking for votes, they'll knock on the door ask for her and she's not there, you know, he'll say he'll they'll say oh, well, are you a voter and he'll say no and Because he isn't usually and because of the trouble it is for people who are disabled to vote and he said the person always says All right.

Well, take care.

I'll see you Wow.

No No trying to figure out why he's a disillusioned No voter or you know, no kind of no if you don't vote If you don't vote, they're not interested.

But if you vote then they listen, I guess so Interesting, isn't it?

Yeah Just the way democracy works, right?

Democracy.

Yes, but it's it's an imperfect system It is our system, but I tell my children every day when they start complaining about things that you know, we may have our problems, but We really are blessed to live in a country in a democracy where our voices can be heard because so many Countries don't have that that is true.

That is true What we tell our kids when they complain about things dealing with this house is I don't know who told you this house is a democracy Because it's not And I own you I Don't really say that but I I have referred to myself perhaps as the supreme leader a time or two.

So You know they I'm not sure they find it amusing but effective and that's the point.

But no democracy very important that we We we vote we show up we'd be informed.

It's work.

Don't get me wrong It's work, but that's that's sort of the the social contract, right?

is this that's we put in the work and and We get the right to vote We do absolutely and if you are out there and you've had any problems with accessibility When trying to cast your vote, let us know shoot us an email.

We'd love to hear your story we would and closer to election day we will be probably talking about there's a Hotline in Kentucky Department for Protection and Advocacy has if you're encountering any problems at the polls Of course people from anywhere in the country can listen to this podcast.

So you might want to Here in Kentucky, that's the Kentucky Department for Protection and Advocacy.

It might be called something different in your state so you might have that the name of that organization and that number ready just in case you encounter problems on polling day, so important stuff and Now I think we will pivot to My interview are you excited to hear all about haptics?

I am very excited I think I'm going to learn a lot and Danielle Burton knows way more about it than I do.

And so here is my interview with Danielle Burton Thank you so much for joining us today Danielle, how are you?

I'm doing well and and you are Do you kind of define yourself as deaf-blind?

Is that correct?

Yes, I identify as deaf-blind It's a lot easier.

I have no vision I used to say have more the moderate hearing but I'm pretty sure that's gotten worse So I I probably say I have more of a moderate hearing loss nowadays.

I don't know It is what it is.

I haven't had a hearing test since 2020 and I kind of eh, whatever And you use you use hearing aids in both ears, is that correct?

Yes Yes, I use hearing aids in both ears right now I'm using headphones because sometimes the hearing aids like to give this echo thing going on and sometimes it Causes the recording to sound really echoey.

It's really weird.

I don't know.

I think it's the mic I think it's because it doesn't use the because it improvises to the hearing aids but then it uses the phone microphone and I think because of that distance it does sometimes there's like a feedback and the other end now tell me I was Watching some interviews that you had done and you decided you made the decision to learn tactile sign language Yeah So yeah, tell me how you came to make that decision.

Well No, I mean I grew up in it or you know, I grew up as The only deaf-blind person in public school and I was always around Individuals I was involved my teacher the blind was involved in the National Federation of the blind So I grew up around the NFB philosophy of you know Having good blindness skills and I did attend a blindness training center when I was in high school Really glad I did it did that first and I did have more hearing back then but at the same time I knew that it wasn't great.

And so when I went to Morehead State University, I was majoring in elementary and special education and I found it really challenging to know what was happening in the Classroom because I couldn't hear what was going on I could hear the teacher and I could kind of you know Like I knew it knew what the class was kind of doing but as far as like being able to serve students and sign conversations and things like that it just wasn't happening and I you know had just recently met more deaf-blind adults and they were talking to me about using interpreters and using support service providers and things like that and I thought You know at that point I really wasn't sure how I was going to student teach and I was like I don't Have the skills to know what I need to accommodate my hearing because that was never addressed going through school blindness to to the education world blindness was the more severe disability and Because I could speak and I made good grades.

I didn't I didn't have a teacher of the deaf So then I decided to go to the Helen Keller National Center to run ASL and while I was there like I learned some bases but I didn't really learn like enough to Be able to communicate.

Well, so I was there my former TV I again Was her she's probably the best best thing that probably could have happened, but she said, you know, why don't you?

You know look at the Deaf Studies program UK or Eastman Kentucky University and I said sure right now sorry I did and I called them and I talked to one of the first people I talked to was Kimberly Hale who was one of the advisors for the ASL department and she said and I was like, you know, I'm totally blind like I I want to take ASL 101 I had to enroll and you know, I would be tactile and like I explained that I had a progressive hearing loss and she said Yeah, that's no problem.

You know, you're just using interpreting class.

She literally Made it sound like it was no big deal.

And you know a lot of universities are telling blank people They can't take ASL classes because they have to see So really?

Yeah, I hear that a lot Really?

Huh that so I Know you said well, first of all, would you like to say your teacher's name so that she gets all the praise that she deserves?

Yeah.

Yeah Laura County Stevens She wasn't exactly my full TBI and she was actually my tech teacher on Saturdays and then now she's kind of basically family at this point I Those people are so important.

Aren't they?

Yeah And talk to her about every week, you know, so Awesome.

That's awesome.

So you said that in the in according to the public school Being blind is the the bigger disability.

So do you feel like you had needs that weren't addressed in the public schools because your deafness was not Really considered it sounds like I'm a lot of incidental learning like, you know, I wasn't able to know Really what was happening, you know You a lot of people like, you know kids have conversations You know side conversations in class and you know when the teacher turns around things like that and like not being able to hear the students in the back of the room so just not really being able to like You know, you know go up to like a group of people and interact because I couldn't hear them so there was a lot of that social isolation that occurred because of Yeah, and I think I think sometimes people I mean we all Whether you're disabled or not, but especially blind people, you know, you you all have those we all have those instances where things you know, we're just not we're just left out of something or You know, but in a classroom setting you're looking at the beginning of the class knowing every day You're going to have to come and deal with that isolation.

That is tough.

I Read books.

So, okay, you know, I think I come bro.

I read birds and like I you know The people directly in front of behind me beside me I spoke to but that was about I did do swimming high school Competitively.

Yeah.

Oh Awesome.

Awesome.

That's that's wonderful.

Do you follow the Olympics?

Did you follow the Olympics this summer with the swimming and I did not I did not Okay, okay Me either don't don't feel bad me either I feel like I should be following the Paralympics I'm not doing that either.

I really So how did learning?

Tectile ASL help you to be more involved in classrooms and social settings I think the biggest thing is it's allowed me to have options and communication like especially in difficult situations like now For like my team meetings at work.

I don't use an interpreter I just pass my microphone around because we're in a smaller room and like I know everybody's voices, but for what the larger Department meetings and we tend to have it in this big open room.

That's I can read and stuff Yeah, so at those point and it's a larger number of people and so I used to have interpreters so that like I still can use my hearing I think for me it's allowed me to like This is gonna sound really weird and this is not how the you Technic was supposed to do this, but this is how I do it Is I I can kind of fill in the gaps like if I miss what I heard I can watch the person signing versus or if I Miss something that was signed I can so I kind of what flop it so it kind of helps that total communication and filling gaps Oh, I don't think that's not like yeah, I don't think that's cheating I think it's like, you know people who could see and hear they're getting visual information and audio information So, you know, it's yeah, you're you're you're getting audio and tactile information So that I think that's great.

Then are there any other things other things that you do?

I know someone was talking I saw in an interview about using haptics Yeah haptics, which is also known as touch the nose.

So sometimes I will use that like if I Presented to a group of audience in person.

I like to have someone, you know provide that information on my back But other people are nodding and people are laughing or you know, people are getting sleepy, you know Is that a is that an informal form of communication or is that formalized in some ways?

So it is In some way, yes but also There's a lot of wiggle room Like there, you know, there are some formal touch cues that was developed by people in Norway Really?

Yeah.

Yeah, so There is a book Haptic communication something Helen Carroll National Center, which is it?

I think it's on iBooks But there are four and I don't know I did at one point learn like colors and drinks and stuff like that But for me personally, I use some of the stuff for like presentations and then I use Sometimes I'll use stuff for like mapping if I go to a new environment I like like someone to draw it on my back or on my hand and they kind of map it out Uh-huh.

Yeah.

Yeah, I've also used it for other random things like Rock climbing like okay describe the wall to me before I climb it.

So that or I'm sorry Did you say did you say rock climbing?

Yeah.

Yeah, I did.

Okay.

Well, we're gonna talk about that next then so go ahead Go on then with the with your what you're tight.

What are you saying?

Like if I you know, like they gave it to to a fair once and I Am on a journey starts with this boys and he's like, okay so then he's like behind me on my back trying to show me where the balloons are and I'm like aiming the Doors at the boys and hitting the boys.

So, you know it works It does it sounds yeah, it I that's something I need to look into more.

That's that is awesome I think that would be beneficial for a lot of people, you know I think it would be even for human blind people but they you know, a lot of people don't think about how that could you know Be beneficial to someone who's just human and blind but I yeah Yeah, I think it would be yeah.

Yeah, it absolutely would be so now the rock climbing.

Let's go back to that So apparently you do a lot of outdoorsy and adaptive type stuff, right?

I do.

Okay.

I try my hand at a little bit of everything I was a spokesperson rock climbing when I was a student at blind Incorporated one of the NFB training centers and I was in high school they took all of us indoor rock climbing and at that point it was on auto boys and I Was bound in the tournament because one of the counselors well, he was actually okay travel instructor he was like climbing this wall and we were like Okay, we're gonna get to the top of our walls somehow.

So I you know, that was my first experience of Chop rope climbing is what it's called You know cuz you're in a harness and you had the rope.

I don't do bouldering I actually have a brittle bone condition.

So I don't because there's no harness and there's no rope and I Don't really want to fall and break something so that I don't touch but I do Do indoor rock climbing I prefer being belayed and then I put fur to hand in my FM my microphone and then they can Depending on the wall.

Sometimes I don't need it.

Sometimes if it's a really challenging law It's helpful for them to give me direction about where a good hold might be That's just out of my reach because I am short.

I am four six Yeah, short people and climbing sometimes has problems so anyway So is that something you get to do often I haven't been in a while.

I've just I've been super busy with various ways of stuff because I I'm in the midst of wedding planning and Congratulations.

Oh wow.

I've lost my mind So trying to do all of that and just And and doing some work on the side for the deafblind equipment distribution program that I can connect program I I recently Contracted with them to provide an instruction to deafblind individuals in the assistive technology that they get from the program Is that Kentucky only or is that so the program itself is Across all 50 states, but I am kind of the only trader that's actually based in Kentucky as far the Helen Keller National Center is running the program out and The person that's in charge of Kentucky has to fly in and things like that So like we don't have any can trainers based in Kentucky until I signed that contract.

So Okay, so and there's there's my Saturdays for you So tell me um, what's the name of that program again?

It's called I can connect Uh-huh.

Okay, and it is Tell me about it again.

Um, it is the it's Mandated by the FCC and it's to provide free talent distance telecommunication Equipment to individuals who are deafblind who meet the vision and hearing eligibility and the income guidelines Okay, okay, and so what and training and the training of that and using that technology And so what kind of equipment is this it can be like an iPhone?

It could be a laptop it could you know anything like email outside food?

It has to be distance communication like you know Like a CCTV isn't typically on the list because that's not distance communication like over the internet right so but refreshable braille displays Keyboards any of those like accessories that will help with that.

I think there's some Trying to think what else there is it's like some alarm type stuff, I believe cellphones mobile phones amplified phones Caption phones things like that.

Oh, uh-huh.

Uh-huh.

And you do that Yeah, when you're not wedding planning and stuff, right when I'm not running part in them working my 40-hour work So have you become a bridezilla already?

I'm sure my mother would probably say yes.

I Bet you're not I bet you're not And my fiance is just kind of like whatever Yeah, I asked him what he wants to do.

He goes.

I don't know.

I'm like, all right, I'm doing it and then Do that's what you want.

That's what you want someone who goes along with all your plans.

That's what you're looking for Yeah, that's what you're looking for.

I like that a lot and I know you'd move to Louisville and one of the things you are kind of I guess Sort of by happenstance got involved in doing some advocacy in relation to TARC the trend Transportation there in Louisville.

Can you tell me a little about that?

Yeah, so I I'm before I moved the level, you know I've been to the Kentucky School for the Blind and things like that here.

So I've been on the TARC.

TARC is our Public bus system and for those that don't know I think it's like Transit Authority of River City something like that So it's a public bus system and before COVID, you know, the buses were great They ran probably 15 30 minutes something like that Now after COVID they're on a weekend plus schedule.

So they run about every hour to 75 minutes, which is already a pain So I since I moved here and the buses are that way it's kind of like a ticket much but then we found out that Because of lack of funding and like a budget that they're looking for 2025 either cutting routes or Either they're gonna cut routes and do like a ridership They were like just more frequently in like high population like high Population areas available or They're going to do keep all the routes in like it's gonna be less frequent bus stops Which is probably gonna be less frequent than it already is So either way you look at it.

It's not gonna be good But at the same time, you know, if they're gonna cut routes, you know, that's part of the city that's gonna be completely cut off from people with disabilities or just not even that but people who rely on public transportation and it's also gonna the paratransit system because Paratransit, you know, the mandate is three fourths of a mile from the fixed route So if there's no route going to that part of the world, guess what?

There's no paratransit going there either that You know Transportation is just always gonna be an uphill battle It's very frustrating and thank you for doing the advocacy and what you're doing also thank you for telling me what TARC stood for because no one has ever told me that before and Transit authority I could pretty much figure out but the the River City thing I never got so thank you You have educated me well today Yeah, I didn't know what it was Looked it up.

So don't worry So so this will impact you Directly, right?

I mean your lifestyle.

Yeah.

Yeah You know when I get married that's true, you know me and I you know My fiance moves up here after we get married, you know, we were talking about you know Moving to a bigger apartment, you know things like that.

But now I don't know what to do because You know, are we gonna be able to find anywhere else to go?

This on a bus line even the not just a bus but the paratransit would go there too So I don't I don't know I which you know, we can make it work in my two Bedroom apartment now if we need to but at the same time I really really would have liked to have been able You know move about in its brain and have a washer and dryer in my apartment, but we'll see how that goes Mm-hmm.

Mm-hmm so aside from accessible public Public transportation what other supports need to be in place for you to be successful?

You know being able to walk places, you know sidewalks good you know, I don't like crazy Like crossing interstates to get the places.

I like to be able to walk in high pedestrian areas Especially being deafblind and not always being able to when I get to the curb.

I don't know Depending on my hearing that day that time or whatever I don't always feel comfortable making traffic judgment So like being in a high population area where I can be like, hey, I need some assistance you know, if I wait a few minutes some of the probably be by because people are walking and So that's really important to me so that I can go and wander around the city Yeah, I like going finding places to eat and coffee shops and ice cream shops and things like that a little too much Those are the things that make city life worth all the hassle isn't being able to go out and do stuff Yeah So that's important to me and you know being around I have a lot of friends that live in this particular area that I'm at So like I don't really want to move but at the same time, you know There are some conveniences I would like like I said, I my washer and dryer is in another building right now Which means I have to drag my stuff over there Which is you know, I've done it for two years, but I really would like to have my own washer and dryer in my apartment Yeah, yeah Definitely.

I know when I was shopping for house just having washers and dryer that was in a basement of a house was a reason For me not to buy that house.

So yeah.

Yeah It being in another building.

I can't even I can't even imagine so Maria Kimplin who now works for Center for Accessible Living who gives funding for this podcast she's the one who introduced me to you and she describes you as adventurous and fearless and I think that is true and So I'm wondering where does that where does that fearlessness and that can-do attitude come from?

I Would probably say my parents I I grew up on a farm in the middle of nowhere, Eastern Kentucky, so I even think of it like, you know in some ways and never got every shelter because you know real area but in a way I wasn't because you know, I was expected to Do things like, you know, it's expected to be successful in school.

I Got out and you know My mom would take me out to the garden with her the way, you know When I was real little I wouldn't touch the grass.

She knew she could set me on the blanket.

I wouldn't go anywhere but yeah, but anyway, you know, but they kind of persisted and Insisted to the point where I was like four or five by the time it's four or five I was running around the yard barefoot, you know says a kid who wouldn't touch the grass.

So But you know, I was expected to help You know I find it interesting when I would go to like camps for blind kids and stuff and they would take The kids to a farm like these kids have never seen sheep or horses or anything cows and they're like Oh, you want to touch it and I'm going in Uh-huh So I grew up with all of that stuff, you know, my papa had horses and so I you know been on a horse I You know, he brought me a Cap, you know, it was about I don't know nine or ten or something I thought so I grew up with you know, those kinds of hands-on Experiences, you know, my cousin would come down from Indiana and my dad would take us hiking over at Carter Caves and you know you know, I I did not grow up on a farm, but I grew up in a very rural area and Nothing makes you learn how to figure it out.

Like being raised in the middle of nowhere.

Does it?

I mean, yeah Try getting lost in your yard because sometimes I would get up in the middle of nowhere And even now like I go to my parents and I'm like wandering around it go take my dog out and I'm just like I really miss my little country grass outside my apartment world.

Like I can't get lost because the The black top is right there and then the building's right there and then I come go back and I'm like, um, all right, dog I hope you know how to find your way back to the stairs to the door because I don't Yeah, no, exactly.

Exactly.

You learn how to just figure it out.

Don't you?

Yeah, and that's one of the great things about Kentucky I mean is that we have we have urban areas, but also there's just a lot of a lot of Rural areas with farmland and just wonderful people, you know, I love Kentucky.

Everyone.

Everyone knows i'm I love the state that I come from.

So I love Kentucky, but Kentucky's transportation At the state is terrible That there there's definitely room for improvement.

There's definitely room for improvement.

I'm so glad that you Yeah, I I miss living when I was in when I was in, uh Minnesota blind ink I actually went back and worked there and it was so nice being just hop on a bus and go To random places and then even when I was at Helen Keller national center I could get the get a taxi into put Washington and then hop on a train into manhattan like You know, it was nice Oh, wow that that that stuff when you had it and then you don't have any more isn't it?

Yeah.

Yeah Danielle, what do you wish people knew about deafblindness?

I think the biggest thing is you know, people think that people who are deafblind are totally deaf and totally blind and that Is absolutely not true, right?

There's such a variety in Diversity within the deafblind community, you know some Identify with deaf culture some of them do not some You know primary use speech even you know, don't use braille some do it's very Very very diverse and the abilities are very diverse and people have various combinations of vision and hearing loss you know some some people have low vision and Some hearing and some had no No vision and some hearing and some have You know some low vision and no here.

It's sort of such a variety and there's a variety in communication So if you meet someone who's deafblind, you know Identify yourself, you know you speak if you know asl, you know sign but you might want to like You know touch the person on the shoulders so that they know that you're talking to them So just kind of kind of go by how they respond Um to you if they turn and speak or they put their hand up for tata, you know, just I I guarantee they'll show you how to communicate and if you don't know like asl like generally they'll find some way to communicate whether it's you know pulling out their phone or Something just be open to And just take that let them take the lead that they'll let you know Mm-hmm.

Mm-hmm.

That's that's that's a great a great way to end.

It's all people are different, but all people are people, right?

Yeah Excellent.

So danielle barton.

It has been wonderful talking with you and uh, thanks for hanging out with me today No problem If you like the podcast remember to follow or subscribe so you never miss an episode If you really like the podcast we'd love it if you could leave us a rating or review on apple Podcasts or spotify or wherever you get your podcasts that helps more people to find us If you really really like the podcast then please tell someone about it either in person or send them an email or just Share the link on social media.

Thank you all every bit helps and it makes a huge difference for us If you'd like a transcript, please send us an email to demand and disrupt at gmail.com And put transcript in the subject line thanks to chris unken for our theme music demand and disrupt Is a publication of the avocado press with generous support from the center for accessible living located in louisville, kentucky And you can find links to buy the book a celebration of family stories of parents with disabilities in our show notes 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 Yeah This war 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 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 Change Slowly but dice, then what will be will be Disregard for good to set us free Free There's just no way of knowing if love lives anymore 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 this need for us to Open up our minds and hearts to change Change Change you you

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Episode 33: Marriage Penalty

Kimberly talks with Allison Hayes about the marriage penalty and the perils and pitfalls of financial planning for disabled people.

Visit Alison’s website at: thrivingwhiledisabled.com

For coaching services, reach out to her at [email protected]

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.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to [email protected]

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 Welcome to Demand and Disrupt the Disability Podcast.

Here, we will learn to advocate for ourselves and each other.

This podcast is supported with funds from the Advocato Press based in Louisville, Kentucky.

Welcome to Demand and Disrupt a Disability Podcast.

I am your host, Kimberly Parsley.

And I'm Lisa McKinley.

Thank you for joining us.

How are you, Kimberly?

What's been going on?

I'm doing very well.

I am just...

The kids are home from the summer, so it's been busy.

We got the puppy.

I'm trying to relearn braille, which you...

Bless your heart.

You're so patient.

You're such a kind soul, Lisa.

Lisa came to my house to help me to figure out the NLS, which stands for National Library Service for the Blind and Print Disabled.

And she came to my house to help me use the e-reader, which is basically a braille display for books.

And it's great and it's awesome, except it doesn't have speech.

It's just all in braille, which is wonderful if you can read braille, which I can't, and...

Well, I can, and I used to could a lot.

And now I apparently can't anymore.

Are you figuring it out?

Well, you know, I'm trying and I'm working on it, and I don't know why I want to.

It's just a thing.

And now that I've started, I just can't make myself not.

And so this is interesting.

Tell me if you do this, too.

It's like I have this thing in my head that just because I know a thing intellectually, my body ought to respond accordingly.

Do you know what I mean?

For example, I know the code.

I know the braille code.

I know what an A is, a B is.

I know what all the letters are.

But in my case, it's my thumb.

What I read braille with, I know what it boils down to is a practice thing.

It's just keep at it, keep practicing.

But I just have it in my head that because I intellectually know how to read braille and I know all these things, like I could take a test over it and pass.

What's the sign for A and D or whatever?

I could do that.

I think I ought to be able to read braille.

And it's just sort of annoying that that's not really how life works, you know?

So it's not coming to you as your fingers or your thumb is not picking it up as fast as you'd like it to.

Do you think it's like just that neural pathway from finger to brain or what do you think it is?

I think it's probably that.

I think I just need to practice.

Like, I think I just need to practice and over time it will just come.

And it's kind of like it's like how we teach the kids to ride a bicycle.

Neither of my kids can ride a bicycle, by the way.

It's like, you know, when you're teaching a person to ride the bicycle, you tell them like this is the bike and these are the parts and this is what you do.

But there just is there's no shortcut between you just have to keep falling down and getting up until you learn.

Right.

Yeah.

So I think it's that it's very frustrating because I am sort of an overachiever.

And I really like once I decide I know a thing, I like to know a thing.

And this is just not working with me.

And so anyway, I think you also decide, you know, you think you're going to devote X amount of time and, you know, progress should be coming faster based on the time.

And it takes longer than you thought.

That is true.

And sometimes you stop with a thing and you're like, OK, is it worth devoting this much time to?

And, you know, I think with the Braille, you really want it to work.

So you're just going to keep pressing on at it, I think.

That's true.

And when you're, you know, everybody's life is so busy now and you have so many things that you have to do and to take, you know, however many minutes a day you I think you're constantly fighting.

That is, is it worth it?

Yeah.

Is it worth it?

Yeah.

With so many things.

That's that's true.

But you're so sweet to have come over and tried to help me to learn how to.

It wasn't that great of help.

But thank you for being nice.

It took you and also both of our husbands who are tech guys.

And we still only got 30 30 percent of the way where we need to be.

Yeah, it was a team effort.

It really was.

So what's going on with you, Lisa?

Well, I've been, you know, doing the whole massage school thing.

I'm home on break.

We're taking a little summer break.

But what's been really interesting is after class, I I go down to Circus Square Park and there's a bench in front of the waterfall or the water fountains.

And I wait for my husband to pick me up.

And I'm telling you, I've been meeting some very interesting characters, including last week a young man.

I believe he was probably late 20s, early 30s.

He came up and he asked if he could pray for me.

And no, you know, man, man, that's not the first time that's happened.

I'm sure it's it might have happened to you at some point in the past.

And here's the thing.

It's not the fact that someone wants to pray for me because, you know, heck, I'll take all the prayers I can get.

But the fact people want to pray for my eyes to be open, for me to be able to see, it's almost as if this is something that needs to be prayed away.

And I think we need to be careful about that.

You know, in the man's sister.

Yeah.

So when he asked me, my response was, you know, because I am a Christian and I do pray often.

And I said, you know, you can pray for me, but but not for that.

I said, you know, I think God uses me more effectively as a blind person.

That's what I told him.

That's what you told him.

Yeah.

Well, and what did he say to them?

He's like, oh, well, you know, the word tells us that, you know, blind eyes will be open.

And at that point, I just let him do his thing because he had a script and you weren't following the script.

Yeah, I kind of.

Yeah.

I busted the script.

Right.

A part of me appreciates boldness of a person and the other part of me.

You know, I don't want to be constantly reminded that society sees my disability as problematic and something that needs to be corrected.

Right.

Yeah.

Well said.

But I am, you know, I'm genuinely sorry that that happened to you because that is off putting and can really just ruin a person's day.

You know, so I just try to remember and remind myself at the end of the day, they are their intents are good.

You know, there is no what you know, and maybe they just don't know.

I mean, is there intent people who do that?

And I've talked to several disabled people and, you know, many, many of us have had that experience.

Is the intent to actually pray for someone and hope to change their life or is the intent like a virtue signaling?

You know, like I am so much of a Christian.

I'm going to do this right here in public in front of everybody.

You know, yeah, I don't know.

That's an interesting question.

Sometimes I think they might do it because they really want to test the powers and just that they would just be absolutely blown away if somebody's eyes were opened and could see.

Maybe they're now the next time it happens, you have got to jump up and say, I can say, you've got to do it.

I've been healed because if we can't laugh about it, y'all, you know, then we just can't get through it.

That's the only way is just to laugh about it.

So along these same same things, did you know that July is Disability Pride Month?

I did know that.

Yeah, I, you know, I know it and then I forget it until like July.

Usually, hey, at least this year, at least this year, it came to my attention at the end of June instead of the end of July, which last year I think was.

I only knew it because you told me earlier like 10 minutes ago, but it started recording.

So, yes.

Well, you don't have to tell them that part, Lisa.

But yes, so Disability Pride Month, and it makes me wonder how if, you know, I don't, I don't not celebrate Disability Pride Month, but I also don't celebrate.

So I wonder what would be a good way to celebrate Disability Pride Month?

I mean, I will definitely be on the lookout for celebrations that people are having or things that are happening, you know, public events, that kind of thing.

I'll definitely be on the lookout for those, but like individually, if you were going to like celebrate Disability Pride Month, what would you do?

That's a good question.

I don't know.

Do we have a parade?

We ought to have a parade with not us leading it.

No, no, no.

About a nighttime parade of blind people because we don't really need to see.

Or a big float that's in the shape of a wheelchair.

Now that would be cool.

Yeah, we should, we need a parade.

A parade?

There aren't enough parades if you ask me.

We should have a parade.

I'm sure there probably is one somewhere.

A parade is always good.

I don't know.

I'm trying to think in my mind, you know, is there a separation or difference between bringing awareness and celebrating pride?

I mean, I think that there is or there should be.

Yeah, I think it should be for us.

Celebrate our pride.

Yes, exactly.

That's what it was.

Yeah, it should be for us.

Yeah.

Like, like I think like all the restaurants should have like, I don't know, dollar margaritas for all the disabled people or something.

Yes.

You know, stuff like that.

A celebration should be about us, us enjoying it, having fun and also, you know, being with other disabled people because I think that is important.

Yes.

And it should be a celebration of just how like the rest of the world we are and not we are different because of X, Y, and Z disabilities, but that would celebrate just how much we are all the same and can we do things, but we might do them differently, you know?

Yeah, that's what needs to be celebrated because I think we get can get down on ourselves about all the things we can't do just like the rest of the world does.

But dang it, we find a way to do what we need to do and we have fun in the process and that's what we need to celebrate.

That is, I think that's very well said, Lisa, as always.

And you know, if I find information about celebrations or things going on, or if anybody wants to, you know, write up something about this topic, the Advocato Press, who is supports the Demand and Disrupt podcast, they have a blog, it's called Moving Forward.

And I'll put a link to that blog in the show notes for people to look at and great content on that already.

They've been going I think about a month or so now.

So some wonderful content and Tina Jackson is the person who is editor in chief of that blog and she creates a lot of content.

So I'm sure she would love it if you wanted to reach out to her through the blog page and maybe submit something.

If you have ideas about Disability Pride or Disability Pride celebrations, any of those things that I'm sure she would appreciate that and continuing on the theme of stuff we don't know.

Also, this week when we're recording this is Learning Disabilities Week.

So by the time listeners hear this, it will already be over, but I never want to be constrained by time limitations.

As the length of my interviews can sometimes show, I want to go ahead and talk about that learning disabilities.

So you know, I working at the Center for Accessible Living every encounter I have with anyone with a learning or developmental disability shows me something new, tells me something new, teaches me something every time.

So if you're a listener and you have a learning or developmental disability, I would love for you to reach out to us at demandanddisrupt at gmail.com and let us know maybe what do you wish people knew.

What kinds of things do you wish people knew about having a intellectual or developmental disability?

That would be great.

I would love that.

Absolutely.

And that's what will make our program successful and helpful to more people.

If you all can write in, let us know and then maybe in the future we can interview someone on that topic.

Oh yeah, that would be great.

Yep.

That would be great.

I actually have someone coming up.

I think I haven't done the interview yet, but I've got a contact, but you can never have too many contacts for interviews, right Lisa?

No, no, not at all.

Our next interview, our interview guest this week, I interviewed Alison Hayes.

She does a website called Thriving While Disabled, where she talks about financial preparedness and planning when you have a disability.

So lots of good information there.

Everyone stay tuned for my interview with Alison Hayes.

Hello everyone.

I'm excited to be joined today by disability writer, advocate, and coach Alison Hayes.

Hello, Alison.

How are you?

I am doing great and it is so nice to be here.

Wonderful.

I'm so glad you could make time for us.

You've got a lot going on these days, huh?

Yes.

I've been very busy with my book.

Excellent.

And we're going to talk to that.

So talk about that because that would tease that out there.

There's going to be a book full of information coming up for our listeners.

So in the book, A Celebration of Family, I am chapter 23 in that book.

I may have mentioned that time or two, not that I'm bitter to be so far at the end, but not far enough to be like, like the last, like you're the last chapter, like the final, isn't she awesome chapter.

See?

So it's, it's kind of unfair.

I'm telling you, but you are chapter 26 rounding out the book right before just the conclusion and your chapter is about something called the marriage penalty.

So can you tell me about that and how you became interested in this topic?

Okay.

So the marriage penalty basically is the fact that people who are on SSI, Supplemental Security Income, if they get married, they're actually penalized for it financially by social security.

One person getting SSI benefits has Medicaid coverage and can have up to $2,000 in assets.

However, a married couple on SSI can only have $3,000 of assets.

So what happens is the couple loses access to $1,000 worth of assets if they get married or as SSI puts it are living as married, which is a very vague and open to interpretation statement.

And it's kind of intentionally that way.

So what the way it works is people in SSI have very limited incomes and very limited assets.

And so it's just, if they go over that magic number, and for one person, it's 2,000, for two people, it's 3,000.

They're no longer eligible for SSI, which means no Medicaid, no checks.

They may lose their eligibility for additional financial based programs as well.

And these are all the things that somebody on SSI needs to survive.

And the other bit and the other thing that people don't always realize is anything that's shared between them can be counted twice, not just for one person but for both, and they can both be penalized for it.

So basically, if you have a shared bank account, that money is counted towards that total.

And so as soon as the couple is over the number, they lose everything.

And so just because you're okay with each person on SSI getting married, having the same amount of assets, they can lose everything.

And this just isn't well explained anywhere.

And it's something that generally isn't talked about.

And so people on SSI get married or are viewed as living as married and then can lose all of their benefits.

So what inspired you to start Thriving Well Disabled?

Well, okay, so I have a condition called functional neurological disorder FND, which is a stress responsive neurological condition.

So basically, whenever I'm dealing with any certain level of stress, I have muscle movements and few other symptoms.

I've actually grown up with the disabled identity that I didn't think about it that way for a long time.

When I was very little, I had like a gross motor disability, I was able to kind of get that down to fine motor issues, which I still have.

It translates into sometimes I grip, you know, pencils and utensils a little funny, and my handwriting is terrible.

But you know, I've learned I learned quickly how to kind of navigate around those things.

I've also got a history with depression and anxiety.

And all of it together led to me applying for disability when I was only 23.

And my symptoms had actually started while I was in college.

So I had a lot of like rebooting that I had to do with my life.

In that process, I started this is my second business, and I've worked part time a lot.

And so I've been on and off, I've never been completely utterly off of SSDI.

But I've had a lot of times that I've made decisions that put my benefits a little at risk and figured out how to backtrack that.

Yeah, yeah.

And and so that whole process had me learn a lot about the systems.

My partner, we've now been together 13 years, but the year before I started Thriving Well Disabled, and the reason I started it was he fell and shattered his acetabellum, big hip bone joint.

Oh, my goodness.

Yeah.

And it took us about a year to get down to what caused it.

And he was watching me take care of all of his medical stuff, and just talk to the doctors, talk to the insurance, figure all that out, get him the coverage he needed, you know, get him on temporary disability, all of the different pieces that we needed to go through.

And he was like, Oh, my god, you understand this so well.

I don't know how many other people do.

I know I would have been completely lost if you hadn't been here and, you know, carrying all this and knowing who to call and what to say and how to make it work.

And I was, you know, trying to figure out what I was going to do next with my life.

And so after some conversation, Thriving Well Disabled was born as a way for me to share what I knew with other disabled folks so that people have a better chance of success with all of these different barriers we face.

And so that folks would have, because so many of the supports that are out there are able people who are doing it because it's a bureaucratic job, not somebody who's been through the system.

And so I wanted to come in as a person who's been there and done that and gets how it works and why so that I can give like, guidance and help in navigating it.

And I don't have a dog in the game, so to speak.

I'm not beholden to anybody.

I don't have to talk nicely about what they're doing or try to make up for their lacks, but I can say straight up, this is what I saw.

This is how it worked.

And here's my understanding of why this happens this way.

Having a supportive partner is amazing, isn't it?

It's wonderful.

That this marriage penalty situation has the effect of depriving people of that really pisses me off.

Yes, there are ways to work around it, which are interesting too, but it's all very frustrating because we have to figure out how to work around it.

My partner and I are not married basically, in part in solidarity too, with the people in SSI who just really can't with being an SSDI.

I don't have as much to worry about there.

But one of the big things is that it's about money and sharing money.

And so I would always advise folks on any of the disability programs to keep their finances separate from their partners, unless you are legally married and then everything is everybody's.

But my partner and I keep separate bank accounts, pay bills somewhat separately.

We're each paying about half of the household costs.

So we can be what we need to be as the situation requires.

So if I need charity care to help offset a medical bill, I'm a household of one.

And then we don't have to worry about what his financial situation is.

And I don't have to turn in his paperwork and I don't have to, you know what I mean?

There's a lot of extra headaches that come with having another person legally in your life.

And so for that reason, think about that too.

And you technically can be married on SSI, but you have to live separately in order to keep your benefits.

Yeah.

I got married and didn't know any better.

And immediately his minimum wage job was, wow, we were just loaded.

So I lost my SSI.

So, yeah.

Oh yeah.

And that's the thing.

Too many people don't know or don't understand what it means.

And they don't explain it to you.

They do not explain it at all.

And it makes for so many problems and so many headaches.

And yeah, so like my partner and I talked about it and we're like, we're not going to get married to protect ourselves.

And after he broke his hip, we actually had a little while where we didn't know if he would be able to return to work.

And we discovered the only program he might have been able to be eligible for because he'd had a brain injury a few years earlier that kept him out of work for a year.

And he'd lost a job.

He'd lost employment for a while.

When the bubble burst in 2008, he would only be eligible for SSI if anything.

And so the fact that we weren't married was the only thing that gave him a chance of having any support whatsoever given his work history at that time.

And so in that moment I was incredibly grateful that we'd never gotten married because at least he could have had something if worst came to worst.

You know, it strikes me that when people who are rich try to protect themselves, protect their futures, protect their assets, society just deems that as normal behavior.

But when poor or disabled people try to do the same thing, it's somehow looked upon as though we're trying to scam a system.

Yep.

That's a common accusation, which goes back to the idea of we're living off the taxpayers because we're getting benefits.

But the point of the benefits is to allow for a functioning society by having us have money to live on.

And the money that we're provided is completely inadequate.

Another thing I've got in my book is I'm talking about the basis for the federal poverty level, which is that amount that they want for every application for every financially based support program.

That amount, the federal poverty level is still the very basis of it is what it cost for a family of three to not die of starvation in 1955.

Wow.

That's still the number?

That's still the equation.

The number changes every year.

But basically, it's three times the value of the minimal amount of food to survive.

Right.

The minimal amount.

Yes.

Right.

So like you're saying, there's like, yeah, like basically, the Department of Agriculture has created like nutritional assessments and said these are the foods that say like, basically, it's nutritionally adequate for the short term.

And so they take the value of a nutritionally adequate diet, what it would cost for a month and multiply that by three.

And pretty much that's your federal poverty level.

Right.

Which is truly absurd to think about because what did people in 1955 spent, I mean, it was less than 10% of their household budget was food, right?

I mean, it's something like 5% or something.

Well, it was larger.

But the thing about it was at that time, they didn't have a lot of what we consider essential supplies.

Like, there weren't, you know, now we have to pay for cell phones, now we have to pay for internet access.

Also, food at that time was almost entirely the raw ingredients that then the housewife did the unpaid labor of preparing.

Right.

And the housewife did the unpaid labor of caring for the kids.

And, you know, the other part is, okay, you can cut how much you spend on food, but your house is still your housing is going to cost the same as it did before.

And so the woman who created this calculation was not trying to do anything like what they've used it for.

She was trying to get basically, she was like, we can't agree on how much is enough.

Let's at least agree on how much is too little.

And this was her conservative underestimate of how much was too little.

How much was too little.

Right.

And someone on SSI is not even making it to that level today.

Right.

Yeah.

Okay.

All right.

So yeah, so like that's just so you see what I mean.

The background is, yes, it was like, this is how much is too, she made a lot of other calculations and they use none of them.

This was the cheapest one.

And there have been two studies done since then, but neither of them was brave enough to put out like an actual equation.

So nobody adopted any changes.

So this calculation was created in 1965.

And other than being simplified a couple of times, no major changes have occurred in how they make these calculations.

Wow.

Is there any way to interpret this law and these rules as being other than just an attempt to keep disabled people living in poverty?

Not really.

I mean, it's the idea of it in theory is that it's part of marriage equality.

Once people have access to assets, when they're married, everything belongs to both people.

But it's just, as a disabled person, we deserve to have basic rights.

And SSI itself is just a financial based program.

That's the other part of it.

It's a entitlements program.

Yeah, sorry.

We're just covered by it.

Yeah.

So how did this become, how did this become a topic of interest to you?

Well, I'm really interested in how the entire social welfare system works.

I've been living on SSDI for most of my life.

And I remember as a young adult, because I went on to SSDI when I was 23, I was suddenly facing these ideas of maybe I couldn't get married, maybe that wouldn't make sense, what was going to be necessary for my financial future.

And so I looked into all of these things.

I also just generally investigated how social security works and really have gotten to know the system pretty well.

So for me, the marriage penalty and SSI is just, the disabled community is one of the only ones, one of the only communities out there that were penalized for getting married as opposed to rewarded.

And this SSI is like the biggest symbol of that.

To me, it's more signs of the structural ableism.

We're assumed to be incapable and we're assumed to be someone else's problem.

We're our spouse's problem, we're a parent's responsibility and so on.

And this decision to have our marriage assets counted against us is just more proof that the assumption is disabled people who are on SSI benefits can't and won't get married.

And SSI primarily is covering the folks who have been disabled their entire lives, who have never been able to have a work history.

And yeah, it's one of the more identifiable classes of disabled folks in that sense.

Right.

And I know you'll agree and it's worth pointing out that when you say has no work history, often not because of anything to do with us, the disabled people, but because people won't hire us.

Absolutely.

There's a lot of bias and discrimination involved.

So like for any disabled person, our first question may be what can I do?

But once we figure out what we can do, we're then faced with society's assumptions of what we can and can't do, which are often much, much more limiting.

And every step of the job application process, the society's bias against disabled people makes it that much harder for us to get the interview, get the position, get to the next step in the hiring process.

So yes, I'm not saying people in SSI are not capable of working.

SSI, just a lot of the people who are on it have been living with disabling conditions since childhood, or have just not been able to reliably find or keep work.

I knew that's what you meant.

I just wanted to point that out.

I think it's important to point those things like that out, that the deck is so stacked against people with disabilities.

It's just not a matter of, well, if they wanted to, they could.

Oh, no, it absolutely.

I have never met a person for whom that was the case.

Oh, absolutely not.

And it's interesting with having the differences between like looking at all the differences between SSI and SSDI.

There's so much in there that's these assumptions of failure in both parts, but everything about the social security process is just painful and ableist and difficult.

By design, I think some might say, right?

I would argue that it's not malicious design because they didn't bother thinking about us that way.

No, I'm serious.

Because basically what it is, is everything's written from an abled perspective.

And they're building on these abled assumptions.

And so those of us who are disabled who are applying are having to contort ourselves in different ways and are handling an ablest bias for every single step of the process.

Everything needs to be done exactly, just like any other bureaucracy, things have to be done exactly the way they want it done, using the words they want, in the format they want, even though the questions themselves are poorly worded, not well defined, and make assumptions that may not be true in your particular case.

Like every piece of this.

The other big thing is the laws themselves have pretty much not been, they've not had any major adjustments since very early in the process, like very early in the history of social security.

And so a lot, there's been small changes.

But the large, but the, there's been no large scale change.

I mean, the asset limit for SSI is $2,000.

Now, now there, yeah, right.

That's laughable nowadays, isn't it?

Exactly.

I keep hearing rumblings that that was going to go up.

Did that ever happen?

It has not happened, to my knowledge.

There was a push to bring it up from $2,000 to $10,000, which would make more sense.

That would be, yeah.

But to my knowledge, that change hasn't happened.

And I'm not sure where that is.

I just know I haven't, I heard the rumblings too and I haven't heard anything since either.

Ah, okay.

Okay.

Yeah.

It's the, in fact, there's only one program out there that acknowledges that being disabled is more expensive than being abled.

Really?

And that is the ABLE Accounts, Achieving a Better Life Experience.

Are you familiar with them?

I'm not.

Can you tell us some about that?

Absolutely.

So ABLE Accounts are, they're a program created by the federal government that allows disabled folks to put away money and not have it count towards any of the asset limits.

You as an individual can create an ABLE Account or a person's family can create an ABLE Account for them.

But it's especially useful for people who are on SSI, but it can be used by people on SSDI and people who haven't applied yet but became disabled.

It used to be earlier in life, but actually that rule is about to get changed too.

It was originally put together, I think, mainly for the wealthier family members of people with developmental and intellectual disabilities who would need supports for their entire life and might not be able to live independently.

But at this point, these accounts are basically bank and sometimes investing accounts that you can create that are, structurally, they're similar to like a school savings account you might start for a kid that you then would keep going as they grow, as they age.

And then you've got money at the, you know, when they go to college that they can use for college.

It's a tax protected account.

And you can have up to $100,000 in that account and still be eligible for social welfare benefits.

Okay, okay.

Including SSI, including Medicaid, all of it, all the financial based ones.

The money that's inside your ABLE Account just doesn't, isn't counted, as long as it's under that hundred thousand mark.

So I think a little more than that now.

Okay.

So basically, it's a way to save money and it can be used as a retirement account as well.

And the money in it just has to be used for anything related to your disability.

But that includes like housing and food.

Oh, okay.

Uh huh.

Yeah, exactly.

So basically, it's yeah, it's a way to protect yourself financially from losing out on the different, you know, from losing out on the care you need.

Because a lot of people, you know, have to stay eligible for Medicaid in order to get the community based waivers and things like that.

So this way they stay financially eligible for Medicaid, but they've got some money put aside to help them actually have a reasonable life.

Yeah.

If everyone I think knows that when we start talking numbers and money, Kimberly gets well and truly out of her depth here.

So, but fortunately you have a website that is very thorough about this and other topics relating to disability finances.

So can you tell me what that website is?

And I will of course drop a link in the show notes, but just just in case there are people grabbing note taking devices trying to jot things down, I want them to have where they can be able to, I want to, I want people to rest assured this information is not going to have to be filtered through me.

You can go get it from Alison.

So what's your, what's your website?

Okay.

So my website is thriving well-disabled www.thrivindg.com.

And basically I've got a, I've got a blog on there.

The book contents were taken from one of my blog posts and I've got close to 200 blog posts up all about disability, living with a disability, different angles on medical care and healthcare, and a lot of stuff on how social security disability, supplemental security income, and other programs that we survive by work as well as how to use them.

I offer coaching services to, to help people apply for disability and get on it or to figure out how to really think about working while on disability so that you have control over when, if, and how your benefits, because when you talk to people at like workability and other, if you talk to, when you talk to people at a lot of the programs they're supposed to support you, take it to work, they make it sound like if you're thinking about work, that means you're going to get off benefits.

And that doesn't have to be the case and it's something that you want to be thinking about carefully.

And they're not always good about explaining what the rules actually are or how to work within them.

Wonderful.

Yeah.

You're, you're definitely right about that.

So that's thriving while disabled.com.

And again, we'll put a link to that in the show notes.

And again, in the book, A Celebration of Families, the, your chapter is chapter 26 where you talk a lot about this, but since we're talking about books, you have some exciting things coming up.

So can you tell us about that?

Absolutely.

So I'm writing a book now, Disability Finances, Budgeting Your Money and Energy While Navigating Broken Support Systems.

I know that's a mouthful, but just search for disability finances.

It should pop.

I love it.

I love it though.

I really do.

I love it.

Yeah.

Because the thing about it is having a disability is expensive and not just in terms of money, though it definitely is financially expensive.

It's also emotionally expensive.

It's also expensive on the energy level.

It also can be socially expensive in that we have friends and family and strangers who don't understand and the ableism and bias is really baked into our society.

And the time expense.

Yes.

The time expense is huge.

And we're doing all of that with fewer usable hours in the day because that's part of what comes with having a disability.

The exact reasons are going to vary from disability to disability.

But for a variety of reasons, the things that able people tend to take for granted take us longer or we're less able to do them.

So as an example, some people need 10 or 14 hours of sleep just to function instead of being able to function on six or seven or eight.

Others of us that just activities of daily living take longer.

A lot of us dealing with invisible in non apparent conditions like dealing with mental health stuff.

For us, it might be processing time or it may be building up the energy to do things or, you know, that self-regulation that needs to happen that takes extra time.

But all disabilities, we end up with fewer usable hours in the day.

Fewer hours where we can just do what we really want to do.

And so my book acknowledges that and helps people recognize that that's happening and what they can do to help manage it.

My central focus is the meat and potatoes of the programs to survive on like social security disability.

But I want to make sure people are also thinking about what we're a part of, how society itself is ableist and how we can take care of ourselves while we're working on taking care of ourselves.

Yes.

That's very well said.

And you're right.

Disability is expensive in so many ways.

And so the marriage penalty and those kinds of things, that's going to be all talked about in the book?

Absolutely.

Yep.

I'm going to have a section talking about the marriage penalty.

I talk a bit about taxes, banking, talk about the community development finance institutions and other ways to get financial support.

I've got a lot about working and thinking about work while disabled.

And like I said, the goal with this is for it to be a guide with lots of resources that you can go to to get more information or know where to apply and so on.

And just have a sense of what to expect with each of the options that are available.

Most of what I talk about in the book are things that I've personally explored, applied for or utilized.

And I'm sharing what my experience was while I was doing them as well.

So people can have a sense of what to expect and why.

And Nanou, you said when we were talking earlier, you mentioned that you're scrambling trying to make sure that you get the most up to date information in the book as possible, correct?

Oh, absolutely.

The other part is most of the information that changes, what changes are the numbers, not the concepts.

So a big part of my focus and how I'm writing this is making sure that my readers know what the terms are that describe the rules.

And so they can always double check the particular piece.

Because when you do, like for example, within working, substantial gainful activity is a term that comes up a lot, SGA.

It's a number that changes every year.

But if you know that you need to be under SGA, your income needs to be under SGA, you can always look up what SGA is this year.

Once you have the acronym, getting the details are easy.

That's my focus with this.

And when is the book coming out?

Our publication date is October 8th of this year.

So I am very excited.

Yeah.

Are you nervous?

Yes.

I've been I've been working away on it.

It's over 200 pages long.

And it's I've got a lot, a lot crammed in there.

And basically have taken good chunk of information from my blogs, plus a lot of extra details that as I was writing, I was like, Oh, I need to talk about this too.

And so my goal is for anybody who's disabled, who's living with a disability to have this as a resource so that they can check or double check what they're what, how to find what they may be eligible for, how to think about the processes that they might have to go through and how to make sure they're as protected as they can be as they move forward to the next step of their life.

Okay.

And that's disability finance, finances, finances, disability finances, disability finances, and shoot me that subtitle one more time.

Absolutely.

Budgeting your money and energy while navigating broken support systems.

It's long, but it's thorough.

It covers it.

It hits it right on the head there.

So that's Alison Hayes.

And anyone, like I said, I'll drop a link to her website in the show notes, and then I will drop a link to her in the show notes.

And if anyone is interested in reaching out to her for coaching services, if you are going through some of these big financial changes, they can reach out to you from that website, correct?

Absolutely.

Also, my email for this is Alison at thrivingwelldisabled.com.

Excellent.

And that's Alison with one L, correct?

Correct.

A-L-I-S-O-N.

Awesome.

Thank you very much, Alison.

We appreciate it so much.

Thank you.

If you like the podcast, remember to follow or subscribe so you never miss an episode.

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Thank you all.

Every bit helps and it makes a huge difference for us.

If you'd like a transcript, please send us an email to demandanddisruptatgmail.com and put transcript in the subject line.

Thanks to Chris Unken for our theme music.

Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Connecticut.

And you can find links to buy the book, The Celebration of Family, Stories of Parents with Disabilities in our show notes.

Thanks everyone.

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Episode 30: Getting Around

Lisa talks with Kevin Kline with Good Maps, an inclusive navigation system that helps people with disabilities move around those tricky indoor spaces safely and with confidence. Speaking of travel, the United States Department of Transportation is seeking input from people with disabilities about a proposed new rule that could be a game changer for people traveling with wheelchairs and other mobility devices. And Lisa tells us about her experience of the April 8 total solar eclipse.

Read the proposed Department of Transportation rule change

• Online: Federal eRulemaking Portal

• Mail: Docket Management Facility U.S. Department of Transportation 1200 New Jersey Ave. SE, West Building Ground Floor, Room W12–140 Washington, DC 20590–0001.

• Fax: (202) 493–2251.

Visit Good Maps

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.

Send comments and questions to [email protected]

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

Transcript

Welcome to Demand and Disrupt, the Disability Podcast.

Here we will learn to advocate for ourselves and each other.

This podcast is supported with funds from the Advocato Press based in Louisville, Kentucky.

Welcome to Demand and Disrupt.

I'm your host, Kimberly Parsley.

And I'm Lisa McKinley.

Today we are speaking with Kevin Klein.

He is a Community Engagement Representative with Good Maps.

Good Maps is an inclusive indoor navigation system that you use with an app on the phone.

And Kevin travels across the United States sharing the product with others and kind of showing them how to use it.

It was an excellent interview.

I enjoyed speaking with him so much.

He lost his vision quite suddenly.

And he's going to tell us about that and how transitioning from a totally sighted man to a blind man and learning the mobility, how it kind of all led him up to this career with Good Maps.

And we're going to learn how Good Maps can help people with all different types of disabilities navigate independently in indoor spaces like airports, stadium halls, schools, universities, really anywhere that a company decides to set up the infrastructure for Good Maps.

So that's going to be really neat.

That is amazing.

And did you say he's based here in Kentucky?

Yes.

Well, actually, the company is based here in Kentucky and he was living in Kentucky for a while, but he's recently moved to Nashville and he'll tell us about that in the interview too.

Awesome.

I can't wait.

Good Maps makes a lot of things more possible for people, a lot of navigation help with that.

Yes.

And I told him I'm usually turning down concert invites because I don't want to spend the money, but Good Maps is set up in Yum Center, in the Yum Stadium in Louisville.

I'm like, now I'm not going to turn down the next offer because I want to go check out Good Maps.

I went there and had such fun and I didn't think I was a concert person because, you know, noise and stuff.

But I went to a concert there in November and it was, I mean, it was great.

And they are very, the Yum Center is so good with people with disabilities.

I mean, they really work great.

There was a whole section for us and it wasn't like far away.

Well, I mean, it was, but that was because I didn't pay for an expensive ticket, you know, but yeah, it was, I mean, it was great.

There were people there.

Some people came up.

They were like, look, when I bought the ticket, I was fine, but now I've broken my leg.

So I need, you know, a different seat.

And they had no problem with that.

They were really great, really great.

And on the way from that, that accessibility desk to the, um, place where, uh, accessible seating, I think we passed maybe 10 bourbon vendors.

So, Oh, wow.

There was that.

Who did you, who did you go see?

I saw pink.

Pink.

Oh, I hear she does a really good concert.

She flew.

I was going to say, I guess you didn't get, I mean, I, you still got to experience that in your own way.

I did.

And, uh, you know, yeah, it was fun.

I went with a friend of mine and our daughters are, uh, best friends.

So it was, uh, four girls and if there was, it was really great.

It really was nice.

I bet they really loved that.

Let me tell you what we did recently and people will think it's completely crazy.

At least for me, um, as you know, we had a partial solar eclipse here in Bowling Green.

Right.

Yeah.

April 8th.

Right.

Uh huh.

Yes.

And for everyone who has seen both a partial solar eclipse and a total solar eclipse, they will tell you a partial eclipse does not at all compare to a full total solar eclipse.

So we put the boys in the car and we took them down to Indiana to a little town called Mount Vernon, Indiana, where there was full totality for almost four minutes.

Oh, wow.

I'm telling you, yeah, it was the neatest experience, even though I couldn't see it.

It was just, well, I'll take that back.

The actual moment of totality was pretty cool, but we were down on the river and there was a band.

They hired a band to play and they had bouncy houses and snow cones and all this stuff, but they hired a heavy metal band and it was terrible.

I'm like, why, this is a family friendly event.

Why?

Why heavy metal?

It was, oh, so I was, I was fuming inside because I'm like, I hope they stop for the actual eclipse.

Did they?

Yes.

Oh good.

A few minutes before totality, I hear the leader of the band say, and now we're going to take a break and look towards the skies and I was like, yes, thank you.

I was so, I was so happy they stopped.

So if you couldn't see it, tell me what you experienced with it.

Okay.

So we got there about an hour before totality.

And so basically an hour before and an hour after is, is when you're experiencing the sun moving or the moon rather moving in across the sun and then the moon, then there's the moment of totality and then the moon moves away.

So as the moon is moving in, the skies get darker and darker.

Of course, I could not experience that, but what I did notice was the temperature.

It started to drop and the winds started to pick up.

And wow, I don't know if you've ever noticed this and, and I've never heard anyone else talk about it, but as a blind person and really paying attention to the sounds outside, I can tell when the birds, I can tell the time of day by the sound of the birds, they have a morning song, they have an afternoon song and they have an evening way of singing and they're all three different.

And so as the moon was coming in that hour, as it was slowly coming in to cross over the sun, I heard the birds go from afternoon song to their evening song because the skies were mimicking or not mimic the skies were doing basically what they do as it's turning dusk.

So the birds started to calm down a little and their song was a little softer.

And then when it reached totality, there was more of a chill in the air.

The birds completely stopped.

There were frogs.

The frogs started going because we were on the river and I'm so cool.

That is cool and then as the, as the moon started moving away, the birds started singing again, but it sounded like 5 a.m. in the morning, the way they were singing and you know, within 10 or 15 minutes they were back to normal and that's, to me, it was really cool noticing all of us, all of that, that it's like time lapse audio.

Yes, it was time lapse audio and I also enjoy just listening to my husband and my two boys, their reactions and them describing it to me.

It was, it was just, it was super neat.

Yeah, that is true.

That is true.

That does sound like fun.

That way more fun than I had.

We walked out in the back door of my office and my coworker was like, yeah, getting kind of dark and that was about it.

So you, that sounds like such a cool experience, but yeah, I go to the zoo with my kids and of course I can't touch any of the things and you know, rarely do you get to, I mean, you can hear the birds, but you know, most of the animals aren't making a noise, but it's their reactions.

You know, it's them telling me about stuff and you know, that kind of thing is fun.

So I guess, oh yeah, it's just listening and hearing their reactions.

Like at Christmas, I love hearing them open the presents and saying what they got when they were little, but yeah, it is fun to do stuff.

Even stuff.

I mean, I think disabled people do more stuff than people think that we enjoy more things than I think they think we can, you know, yes, absolutely.

And I hear you have some news from the Department of Transportation.

I do.

I'm going to, there's a new rule proposed about airlines and how they handle wheelchairs and mobility devices and I want to share that with our listeners.

The U.S. Department of Transportation is seeking public comments on a new proposed rule designed to ensure airline passengers who use wheelchairs can travel safely and with dignity.

An estimated 5.5 million Americans use wheelchairs and many encounter barriers when it comes to air travel.

In 2023, over 11,000 wheelchairs and scooters were mishandled by carriers required to report data to the Department of Transportation.

The proposed rule would set new standards for prompt, safe, and dignified assistance, require enhanced training for airline employees and contractors who physically assist passengers with disabilities, and handle passengers' wheelchairs and specific action that airlines must take to protect passengers when a wheelchair is damaged during transport.

Notably, the proposed rule would require airlines to provide passengers with two options to repair or replace their wheelchairs if mishandled by the airline.

The two options are, the carrier handles the repair and replacement of the wheelchair with one that has equivalent or greater function and safety within reasonable time frame and pays the associated cost, or the passenger arranges the repair or replacement of a wheelchair with one that has equivalent or greater function and safety through their preferred vendor and airline pays the associated cost.

In addition, the proposed rule will make it easier for the Department of Transportation to hold airlines accountable when they damage or delay the return of a wheelchair to its owner by making it an automatic violation of the Air Carrier Access Act to mishandle wheelchairs.

As part of the notice of proposed rulemaking, the Department of Transportation is also requiring input on two topics not currently included in the proposal, lavatory size on twin aisle aircrafts and reimbursement of fair differences between flights someone could have taken if their wheelchair fit in the aircraft and the more expensive flight they had to take instead.

Summits can be submitted online, by mail, or fax, or hand delivered through Monday, May 13th, 2024.

And now here is the amazing, fabulous Kevin Klein.

Thank you for joining us today.

Today I am speaking with Kevin Klein, Community Engagement Representative with Good Maps.

Good Maps is a company providing indoor navigation to the blind and visually impaired.

It is an amazing company and not only does Kevin get to represent this company and travel around the US, he also has an amazing story of triumph.

I know a lot of people would have not been as tenacious as Kevin under certain, under similar circumstances, but Kevin has overcome and he is here to tell us more about that story and a little more about Good Maps.

Thank you, Kevin.

Thanks for joining us today.

Thanks for having me and thanks for the great introduction.

Hopefully I can set a little light on my past life, if you will, and then what I'm doing now.

Yes, when I first heard your story and heard about the things you were doing, I was like, wow, I've got to talk to him more in depth sometimes.

So I'm so glad you joined us on the program today.

So if you would, start by telling us a little bit about yourself.

Yeah.

So, like you said, I'm Kevin Klein and I work with Good Maps and the Community Engagement role, which we do accessible indoor navigation for anyone now and I'll get more into that later.

But I now live in Nashville, Tennessee, lived in Bowling Green, Kentucky for a few years and was raised in Western Kentucky.

So kind of stayed in this area for most of my life and I'm 28 and I lost my vision about five and a half years ago now, I guess.

Wow.

If you don't mind, share a little about that with us.

Yeah.

So up until, you know, 23 years old, I had 20, 20 vision, lived a relatively normal life, you know, played sports and went to college and, you know, had multiple different jobs and careers, but on what I was going to do for the rest of my life, I was, when I was in Bowling Green, I was working at UPS and the goal was to become a driver shortly after working there and, you know, things like that, everything was somewhat figured out.

And then the, I guess it would be August of 2018, I was watching a game in a restaurant there in town and realized the score was looking a little blurry, but didn't think much of it.

I was like, well, I haven't been to the optometrist in about 10 years.

So I guess it might be time to go get glasses or something like that.

So a little time goes by and I, you know, was driving there in town and I went off the road just slightly, didn't crash or anything like that, but that wasn't normal for me.

And so I made an appointment with an optometrist there in Bowling Green and within about an hour they said, you need to go to Nashville, we can't help you here.

And you know, immediately I'm like, well, that's very odd, I've never had any type of eye issues, no major health scares or anything like that.

So I went down to Nashville, actually went to the wrong, they sent me to the wrong doctor.

It was, they sent me to a retina specialist, which I don't have a retina problem.

I have a optic nerve issue, it's Leber's hereditary optic neuropathy.

And so basically they were running tests at this other doctor and they, you know, were, kind of, I found out a couple months later as I was losing my vision over the next six months that they were kind of waiting to see if I could be a guinea pig for them, you know, run tests, things like that.

Well, once I figured out that I did some research and got recommended to go to Vanderbilt.

And about, you know, by the fifth month out of six months of losing my vision, I got into a clinical trial in maybe December of 2018, maybe January, but of 2019.

But it, and it helped me slightly, but everything with LHLN is still in trials.

There's no, you know, cure, if they catch it quickly, then they can kind of reverse it somewhat with some of the trials.

But you know, I wasn't that lucky because I was waiting around for multiple months.

But by January, 2019 into February, I was probably at my worst vision wise.

And then, you know, the shots helped me regain slight contrast, but not much.

I could still see light, but other than that, nothing.

I like to tell people I'm pretty, pretty blind, you know, pretty much blind.

So you get into the low vision and the blindness and people will ask what's your level of sight and all this.

And I didn't really get that because I went from 2020 to, you know, blind in the course of six months.

So they're always asking me, QD and things like that.

And I'm like, I got no idea.

I don't see much.

How about that?

So, you know, from 2019, it was kind of a lot of, you know, hoping, well, it's going to come back at some point, but, you know, it never did.

And the first year or two, it was pretty rough to go through that at my age and while everybody else's lives continue the same, you know, continue their regular course, if you will.

I can only imagine.

So this just came on very suddenly with no warning.

I take it there was no one else in your family that you knew of with this disorder?

No.

And that's funny thing is I'm adopted, actually, so didn't even know which we ended up my family reached out to my birth mother and come to find out she had no idea she was a carrier.

The diseases normally passed on from a mother to a son, or I'm pretty sure I have two birth brothers and neither one of them were affected.

And so I just got lucky, you know, or however you want to put it, unlucky.

But I was, I guess, chosen to get this.

But yeah, there was no signs of it ever going to happen and had no no clue it would ever happen to me.

So it was very surprising.

I can only imagine and at such a young age, but you still had so much life and you still have so much life ahead of you.

And do you think that in some ways helped propel you forward to continue, you know, striving to understand and to adjust to life as a blind person?

Yeah, it definitely did.

But it took time to get to that point.

Probably, like I said, about a year and a half, I was in a pretty dark mental state and, you know, didn't really, I didn't even know how to learn to be blind, didn't have a cane and nothing like that.

I was just holding on to people walking around town if I ever left the apartment and, you know, didn't really, wasn't taking care of myself and all that good stuff that comes with the darkness.

And so I don't know what it necessarily was.

But within that year and a half to two years kind of hit a point where I was like, I need to change things.

I've still got a lot of like, this isn't going to get better.

The hopes and prayers are nice, but it doesn't mean that it's going to change.

And so I kind of hit a middle point where I had to change some stuff and learn to be blind and then learn what you can do as a blind individual, which I'm still learning that as I go on.

But yeah, it took it took that and then like you said, the age, you know, being at this point probably 24, maybe 25 and knowing, you know, you still have a whole life ahead of you.

I was at 24 years old, you most people hope to have a whole another, you know, 50 to something years left to live their life and have children and get married, all that good stuff.

So kind of took a toll on me at the beginning, but you know, you got to not everybody hits that mental point of changing because it just takes time and everybody's different.

I just I got lucky that I did it within a couple of years instead of waiting any longer.

Right.

It's such an adjustment period for everyone.

And there are definitely dark days and when I talk to a newly visually impaired person, it's kind of challenging because, you know, I tell them you have to go through this.

It's kind of a depression and there's no way to rush it and you don't want to rush it.

And sadly, sometimes people get stuck there, so I'm so glad that you didn't get stuck there and you know, you decided, OK, there's there's life to live.

I got to get out there and figure out how to live life blind.

So can you tell us a little what that was like really making that adjustment?

Yeah, so fortunately, when I decided to, you know, really go full force into learning how to be blind and live that type of life, Covid hit.

So that was fun.

You know, there's all this information and assistance and trainings that I didn't know existed, but I was excited to try and learn.

And then everything shut down and they wanted to, you know, trying to learn a computer over the phone with seven other people through Zoom was not ideal for me.

You know, learning Braille over the phone was not working for me, things like that.

But I was able to learn the phone pretty well by myself and with a little bit of assistance from instructors.

But that's kind of what helped that and mixed with the mobility skills that I've learned to still learning, but I've gotten pretty well with, you know, walking anywhere that I feel necessary, you know, traveling, things like that.

But if you're able to use that phone to your complete ability, that's a game changer.

You know, I'm currently still learning the MacBook now that every week I get a little bit of training.

But it's, you know, it took time, but it was one of those things that I joke with people saying in high school, I didn't do great at Spanish because I didn't want to learn Spanish.

But you know, if you want to learn something, it's a lot easier when you have that interest and you know, your life depends on it, if you will.

Yes, and the mobility thing.

Learning how to use the cane and the apps on the phone for navigation, that's kind of what got you into this position at Good Maps, isn't it?

Yeah, somewhat.

So, you know, I couldn't even walk a straight line when I first saw some vision, I still run the walls, that's just because I don't pay attention.

But you know, the cane is a life changer.

You know, as I was getting mobility instruction, I was learning of some applications and, you know, once you hear about it, you want to kind of go try it out.

And I guess I'll back up a little bit to see how I get, you know, to where I am now.

But I was, you know, in some of the organizations, which are very helpful, no matter where you are, you're going to be able to find an ACB or an FB organization in your city or region.

They're all throughout all 50 states.

So they're great to, you know, get ahold of because they can tell you at least where the resources are, show you people that are successful as a blind individual, which was a big thing for me was finding people that are living life, you know, the way I kind of want to.

And so my girlfriend at the time, my wife now, she had moved down to Nashville.

And you know, I was, I had some instruction under my belt and some training, but I was like, man, if I could get in a big city where there's even more opportunities.

So I moved down here to Nashville and there I joined the ACB and FB and just tried to meet as many people as possible and also getting technology training and mobility training here too in the big city environment is a big difference too.

So I did all of that and I come to find out there's, you know, I'd never been to, at this point I hadn't been to an FB meeting or anything like that in town, but I saw that there was a career fair in New Orleans at the FB convention and it happened to be over my birthday.

So I called up a buddy and I said, Hey, let's go to New Orleans.

And I'd never been, I wouldn't suggest going in July, pretty hot, pretty humid, but it was a good time.

But what was the best part was I met people from Nashville that were, you know, very successful in their own rights.

And also I went to the career fair where I met my boss, Evelyn at Good Maps.

And you know, I met a lot of people there and I actually, we ended up going to, we had been at the same university near the same time, which was just a coincidence and you know, we had mutual friends, things like that, but had good conversation and that was about it.

And that was in 2022.

So I didn't hear anything from anyone at the career fair then, this was in July.

So I was working with the state here in book rehab and I ended up getting a job in a warehouse in September.

And you know, I don't know if this is coincidence, but it seems like, you know, there's always something that happens mad in your life, but good comes out of it.

And you know, right around that same time, my mother had passed in September and then I started a new job like a couple of weeks later.

So, you know, and same with the blindness, like, you know, there's always, it's not a good thing.

It's not fun.

It's not something you look forward to, but good can come out of it.

So that, you know, that happened and I was like, well, warehouse work isn't necessarily what I want to do, but I want to make my own money again, like having some type of independence and contributing to the household is kind of my internal goal.

So I did that and it was going okay and, you know, working in a semi-trailer for eight months, give or take, and then come June of 2023, I got reached out to by a couple of people saying, hey, this lady's looking for you, like trying to find who you are.

She works for Good Maps and she remembered you from the career fair.

So luckily after a few interviews and meeting up, ended up being able to quit that warehouse job and take on the community engagement role at Good Maps and it's been a life changer in multiple ways, but just being able to communicate and network with a lot of people with the same interests as I do, you know, visual loss, blindness, I've even been in contact with, you know, deaf organizations, things like that, just a whole lot of other people that I never thought I'd meet and travel and all that good stuff.

So it came full circle and, you know, I kind of preach about every bad thing has something good on the other side.

So this is definitely, I wouldn't have been in this position, I joke with everyone at Good Maps saying, well, you know, it's because I'm blind and I can talk to people, right?

That's why you hire me, but it might not be a hundred percent true, but it probably did have some effect and, you know, if I wasn't blind, maybe I wouldn't have this job.

So, you know, it comes full circle.

Well, you saw that there was the career fair, you know, it's kind of far from Nashville.

You took that chance.

I think that's important to, you know, point out to listeners, we have to take the chance, you know, sitting around isn't going to get us very far, but you took that chance.

You went out, you found the career fair.

And the fact that they reached out to you, I think that just goes to show, speaks so much about your character and confidence at that event.

You must have just, you were someone they wanted on the payroll, so I think that's so great.

Yeah, I was surprised too.

It was, it was a great, great opportunity to be able to, you know, have someone reach out to me instead of, you know, like, we know, we all know how it is trying to find a job when you don't have one or trying to find something new, just, you know, constantly reaching out to everybody else, well, it's, you know, it's a game changer when they reach out to you for the first time.

Absolutely.

And if you would kind of tell us about Good Maps and what is it that, what kind of services do they provide?

Yeah, so Good Maps, it's been evolving, but it's, you know, to where it is right now, it is now an inclusive and accessible for all application when it comes to indoor navigation.

But we started out of American Printing House for the Blind about 2019, and, you know, the goal was to make indoor navigation accessible for the blind and low vision, you know, with American Printing House being our parent company, that's, of course, main goal is, you know, blind and low vision, which was great.

And we exceeded with that with our previous app, Good Maps Explore.

And we, you know, as we were expanding, they were getting questions like, well, if you can do this for the blind and low vision, why can't you do it for everyone?

Or why can't you do it with the deaf or the wheelchair users that might be around or neurodiverse, things like that.

So, you know, we, we worked on that, I say we, the people that are smarter than me in the development team, the mapping team, they, they worked on a, on new app, which now was released in end of October of last year, it is, like I said, it's an inclusive app now and accessible for blind, low vision, deaf, neurodiverse wheelchair users, you know, people who just get lost.

I joke with people when I had 2020, I still couldn't find my classes on my college campus.

So, you know, it helps everyone, but it has an augmented reality aspect now.

So it's got the arrows as you're walking through, it's got a visual map, you know, full directory of whatever ports of interest, locations you want to go to in that venue.

And you know, it's free to the user, the venue will pay towards getting the application in their, you know, building.

But yeah, it comes with unlimited usage, say in an airport or things like that.

So you know where we are, we're in about seven different countries at the moment, and I think it might be eight soon, but a lot of transit, such as, you know, Portland International Airport Network Rail in London, all of their stations, we've got a Bolivian airport, we've got Sound Transit up in Seattle, the BART in San Francisco, and then, you know, universities such as Michigan State University, Louisville, Wichita State, and a few others.

Schools for the Blind, of course, we have about seven partners there, museums, and we're starting to talk to some arenas and stadiums, hopefully that will happen soon, we will see.

And we've got already arena-wise, we have the KFC Young Center in Louisville, a large basketball arena and we're talking, there's a couple of large airports in the US that are, might be coming on board very shortly, so keep your eyes out for that.

And then, you know, we're growing in Canada in the corporate space, like Deloitte, we've got, I was able to go up there in Toronto last fall when I first started and, you know, we're looking to just make any space that's not available for, you know, anyone with a disability to walk through by themselves, trying to make it as accessible as possible and, you know, luckily it's starting to look like a lot of businesses and corporations and universities want that as well.

You know, the focus, I think even in transit in the UK area, they're starting to put it into some of their, you know, writing that it needs to be, there needs to be, you know, accessible wayfinding through the facilities and things like that, whether that's good maps or not, it's still good that, you know, people are focusing in on it, because I mean, for instance, I was at CSUN Assisted Tech Conference a few weeks ago in Anaheim, California, and we had the, Mary out there, their lobby mapped out, I was able to, you know, walk through from my room, I'd take the elevator and open good maps at the bottom, and I'd walk to the Starbucks every morning and then walk to wherever I needed to go in that area by myself and then call my coworker and say, I'm here if you want to come meet me.

Could you explain how good maps would work in particularly for a visually impaired user, how they would use the voiceover option on their phone, because I think that probably messes with a lot of people's mind.

How can a blind person use a phone and see a map, because they're not actually seeing the map, correct?

Right, no, so, for instance, I can kind of run through a little bit of different features for each type of person, but, you know, voiceover is what we use on the phone to swipe through, it announces everything that's on the phone, well, our app actually will announce without you having to type, you know, if you click a route that you want to go to, for instance, if you want to go to the water fountain, it'll give you turn-by-turn directions, audio-wise as well for the blind, you know, it'll say you're approaching a left turn in 13 feet, and then it'll tell you when to turn, and it'll say, you know, a slight left here or, you know, things of that nature without, you just have to hold that phone up, because our app, I will say this, I've kind of skipped over, our app works off the phone camera, so I know a lot of people have heard about the Bluetooth beacons and GPS, well, we use LIDAR technology, which is kind of a 360 imagery, and we go in, we scan a building, and then your phone camera will, like, I always use the word compare, but basically compare what it sees to our previous scan, and this helps with the accuracy, Bluetooth beacons are anywhere from 18 to 40 feet accurate, give or take, some better, some worse, but there's installation, there's facilities, you have to install things, replace batteries, all that good stuff, and then, you know, we, there's no installation for the facilities on our side.

We go in, we scan, we leave, and we put it on our app, and we get to you within a couple of feet of your destination, and, you know, GPS, as we all know, that's great outdoors, it's a great tool, but, you know, you'll still be in an Uber sometimes and get dropped off down the street, you know, it's not the driver's fault, it's just there's a little inconsistency with that system, but that's a side note on how it works, so I kind of ran over that earlier and forgot, but, so that's kind of how the, you know, with the blind low vision, you know, you can use voiceover that the phone comes with, or talk back on Android, and swipe through to go over the tabs and, you know, click where you want to go and things like that, but there will be audio directions without you having to touch anything once you've started the route, you'll just hold the phone up and start walking, and it'll announce where you want to go, or like how far you will go until you turn, and how far you are from your destination, and things like that, and then when it comes to, you know, the deaf and low hearing and things like that, so we've got, like I said, the augmented reality, and also, you know, it'll text at the top to show you, or to tell the user where they're going, as they're going, so they don't have to try and go communicate with someone who may not know sign language, or may not know how to communicate with a deaf individual, you know, and that's a, that's a large thing with the neurodiverse community as well, it may not be that they can't hear, they can't see, or anything like that, they just may not be comfortable speaking to someone that they don't know, or just, you know, sometimes people just don't want to talk to you, you know, and that's fine too, so we can help facilitate that, and when it comes to the wheelchair users, we have a feature that's called step-free routing, so we go into the, you can go into the settings and click step-free, and any route that you're taking, whether it's, you know, from the first to the third, or whatever floor, it'll take you, you know, if you're in the airport, it'll skip any stairs, escalators, and take you straight to the nearest elevator, and, or the correct elevator on your route, but I can't imagine how frustrating it would be to try to navigate a building, and you get to where you want to be, and then there's steps, and then you have to turn around and reroute, you all are saving people from, from that hassle, and it must be a great time saver, I would imagine.

Oh yeah, I mean, I can't, well, I guess I can't imagine in a sense, but never, always have been trying to find the elevator when everybody else is able to take one route down the stairs quickly, and things like that, you know, you're already having to go slower than everyone else while waiting on the elevator to come up, but no less trying to find it, you know, so, and that's, that's kind of our biggest thing right now is, it's, it's great that we're helping everybody at once, you know, of course, that's our main goal is the accessibility for all, you know, the blind vision was our main thing, we've already got that taken care of, let's do it for everybody else, but also it helps when speaking to venues and organizations, you know, everybody wants to help the blind vision, but say there's only three blind people that come in that venue, every, you know, six months, you know, trying to get the, those people to buy into the app, if it only helps a few people, but if you say, Oh, we're accessible for everyone, and you'll have a map of your location that you may not have had before, or if you did looks, for instance, a shopping mall, a lot of those maps are out there, but they're not accessible.

And so, you know, we're able to say we've got a map of your location, and it's accessible for anybody walking or rolling into your spot.

That's great.

Absolutely.

You need to give it as much broad appeal as possible.

And that's what will help the technology get into more places.

So what is in the future for good apps?

Is there anything new on the horizon that you all would like to do?

I mean, I think right now, or, you know, we've been focused in on transit and airports because they honestly made the most sense, but they also been interested in us.

But, you know, like I said, we're in all types of places, we're going to continue to try and be in universities and museums, all that.

But I think kind of a cool side of things for me, because I'm a huge sports fan, is trying to get into some sports venues.

Why not?

You know, even if you don't have a disability, I know when I wanted to run to the restroom or something, when I had vision, I wanted to know where it was so I could get there quick and not miss a big play or miss part of a concert or, you know, something like that.

And a lot of big places like that, they want the maps in general.

And coming to find out it's helpful for everybody too.

So it's just a plus.

So that would that's a cool thing that we're in talks about right now is, you know, sporting venues, concerts, things like that, but also, you know, just continuously moving across the world, but also state by state too.

So, and you know, as my title Community Engagement, I'm here to kind of spread the word and, you know, let people know across the US specifically for me, you know, where are you at?

Where might you want this application?

You know, it's and, you know, we can't go map out a Starbucks or a subway because it just doesn't logistically make sense for us or the venue.

But, you know, if there's anything like that in your area, you want to advocate for and whatnot, just reach out to us.

We're, we're open to talk with anybody, whether it makes sense or not, we'll find out for you.

So, Kevin, we spoke about your transition from having vision to the vision loss, the transition of you learning to live as a quote unquote blind person.

And it seems mobility and having freedom to move around your environment really helped you really regain your confidence.

And I wonder if you would kind of tie the two together with Good Maps and other similar programs.

How important is it for a disabled person, be it them in a wheelchair or, or visually impaired or hearing impaired?

Tell us how important do you think it is to be mobile and stay mobile and really try to achieve that in your life?

Oh, yeah, I mean, it's, you have to.

And it's one of those things I always tell people.

So Good Maps, we call it a tool in the tool belt.

Have as many tools in your tool belt as possible.

Don't be scared to leave the house like I was for that little bit of time.

You know, I'll, I'll be, I'll be testing with people with the app and, you know, they might be scared to hold their phone up because people might steal it or something like that.

I'm like, well, you're out and, you know, you're out and about, you're doing pretty good right now.

I wouldn't worry about your phone being stolen.

You're doing great.

You can just have the confidence and, you know, be able to walk around, you know, like I was in Seattle a month or two ago, and I'll be able to walk around the station by myself, whether I was using the app or not, is just a life changer.

Get back.

There's no, nobody's normal, but get back to a normal sense in your mind that you can go to the grocery store by yourself.

You can, you know, continue education.

You can go to a concert or, you know, things like that where you're still living your life in the way that you want.

It's not going to be the same as before.

You know, when you lost your vision, it's not going to be the same when you had sight, but you can still do the same things that you did before, just in a different way.

And, you know, having the confidence to do so is the biggest thing.

You know, I'll shout that to the rooftops with confidence because that's the main thing that helped me with mobility is, you know, I could, you know, at the beginning, when I started learning a cane, I knew how to use a cane, but I didn't go out and do it because I was scared or I had fear or nervous, which are all understandable, but taking that first step out the door, you know, walking around the neighborhood or, you know, getting an Uber down to the city and being able to just walk around to a restaurant that you like, or, you know, things like that.

Once you start doing that, you'll get more comfortable.

People, you know, you'll realize people want to help you if you need it.

Sometimes it's too much.

Sometimes people don't know how to help that.

That's okay, too.

At least they're trying.

And, you know, once you start doing that, you'll realize there's a lot more good in the world than being worried about, you know, walking around with your phone or whatever to be stolen.

You'll realize there's a lot more good than bad when it comes to people seeing you out and about with that white cane.

There's some advantages of the cane, not to say that.

And I don't know if you were anything like me, and I want to kind of speak to listeners out there who might be in that transition where they're not using the cane yet.

I remember when I was losing my vision and going from the point where I could no longer walk safely without assistance, and I had to use the cane.

I didn't want to identify.

I felt the cane made me identify as a blind person.

And you fight that for a while, and you don't want to take out that cane.

But once you take out the cane and start to use it, and you realize, oh my gosh, I was trying to depend on something that wasn't dependable for so long.

Now I have this cane, this tool, and it just provides so much freedom.

And before you know it, you're just whipping out that cane with confidence.

You know how the cane folds.

And do you ever just take the elastic off and you just whip it out because you know people are watching.

And it provides this sense of confidence instead of this sense of shame that you might've felt in the very beginning.

Yeah.

And it's, I mean, it's almost funny because I do understand, you know, I went through that whole stage and it took me a long time, like I said, a couple of years.

But now looking back, it's funny because I cannot imagine what I looked like when I was trying to walk around without a cane.

Because I do know I was in my small town and hometown in Kentucky about a year into losing my vision, didn't have a cane or anything like that.

And I was just walking around, I think there was a small concert or something downtown and people thought I was just hammered drunk.

And I was like, I get stopped, like, are you okay?

And I'm like turning around and I'm like, I'm fine.

Like, it's over.

What is, you know, what is going on?

And people look at you that way because they don't know your blood.

And, you know, I have a, sometimes a joking, I guess, way I talk.

And so I'd say to people, I don't know, like in the tone of my voice, it sounded like I was joking.

And I wasn't, you know, it was hard to explain.

Yes, I am blind.

How are you going to prove it?

Nobody asks questions when you got a white cane.

They get it.

I joke, I'll be walking around with buddies at an airport or, you know, at a sporting event and people part like the Red Sea.

And if they don't accidentally run into you, they say, sorry, like, you know, and that's, and it's good.

And it's funny.

Like it's, but people are almost amazed at you.

And, you know, and, you know, it's, it's kind of cool to see that, but also cool to prove them, Hey, this shouldn't be amazing.

This should just be normal.

And, you know, just living your life should be normal.

But, you know, it's, it's getting those people that don't understand to understand.

And also, you know, that goes from the sighted or the blind individuals who don't understand what it's like to use the cane and be mobile and just have confidence while doing so.

Well, Kevin, you have an amazing story.

You've went out there, you've made a way, you're making things more accessible for lots of people across the nation and hopefully across the world.

And I commend you for it.

And I thank you for being on the program.

It's been an absolute pleasure.

So thank you so much.

I appreciate it.

And hopefully everybody that listens to this will look up good maps and see what we're about.

Absolutely.

And we will link it to the show notes.

Thanks again, Kevin.

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If you'd like a transcript, please send us an email to demand and disrupt at gmail.com and put transcript in the subject line.

Thanks to Steve Moore for helping us out with transcripts.

Thanks to Chris Unken for our theme music.

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

And you can find links to buy the book, A Celebration of Family, Stories of Parents with Disabilities, in our show notes.

Thanks everyone.

I think I would agree We both know there's a difference We've had our curtain call And this time the writing's on the wall This wall of words we can't defend Two damaged hearts refused 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 Prepare and rearrange things But each and every letter Spells out defeat for us to Open up our minds and hearts to change Change Provertize them what will be will be Disregard for good to set us free Change There's just no way of knowing If love lives any more Turn off the light then close the door Change We try to make things better Prepare and rearrange things But each and every letter Spells out defeat for us to Open up our minds and hearts to change Change you you Episode 30 Kevin Kline.txt Open with Google Docs Displaying Episode 30 Kevin Kline.txt.

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Episode 21: That’s Not Cool

This week, Kimberly expresses her frustrations at the voting process, and later talks to parent activist Lindsay Brillhart about parenting with a Disability and advocating for a child who also has a disability.

The nonprofit group Lindsay mentions, TASP, can be found at Achancetoparent.net

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.

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcription

Kimberly Parsley 00:03 Welcome to Demand and Disrupt: The Disability Podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Advocato Press, based in Louisville, Kentucky. Kimberly Parsley Welcome to Demand and Disrupt: The Disability Podcast. I am Kimberly Parsley and I am here with Lisa McKinley. Hey, Lisa! How are you doing? Lisa McKinley 00:26 Hey, everybody! How is it going, Kimberly? Kimberly Parsley 00:30 It's going. Like, it's just sort of going. I was gonna say it's going good, but it's really not. Lisa McKinley 00:38 Well, that happens. I know it's been one of those weeks. Kimberly Parsley 00:42 It seems like it has. It seems like it has for lots of people, not just me. We’re recording this on election week here in Kentucky. We have off-year elections. No spoilers here – we re-elected governor Andy Beshear. I went to vote nearby, just down the road. Lisa McKinley 01:06 How was that? Kimberly Parsley 01:10 I'm trying to think of how it was that won’t make me have to have an explicit warning on this podcast episode. It was not good, Lisa. It was not great! Not great. Used to love where we used to vote. Before the pandemic, we’d go down to the fire station in our neighborhood or our community and they knew me. They would have the electronic voting machine ready to go; it would be up and running at the fire station. So, the kids would get to play on the fire truck while Michael and I voted. It was nice. It was great! That has no longer been my experience since 2020. This week, I go in to vote. Now, these were not volunteers working in the poll, okay (because I'm very respectful of volunteer coworkers), but these were not volunteers. They were actual employees of I don't even know what, but something. When I finally asked someone said she was an employee of the DMV. I was like, “Well, that explains why you don't know how to deal with blind people, I guess!” Lisa McKinley 02:21 So, people who should know; who should have their act together. Kimberly Parsley 02:25 Well, there should be training. There should be training and I will complain to the proper authorities. If anyone knows who I can complain to, please let me know. So, here's what happened. I go in and they're like, “Do you have your ID?” “Yes.” Michael shows them an ID, Michael and I together, and she says, “Does she have an ID?” I say, “Yes, she does.” So, I hand her my ID. So, Michael signs the thing and she says, “Can she sign her name?” Then, I start waving and I'm like, “Hey, look! Yes, she can! She's good, thanks!” So, I sign my name and then they hand me a paper ballot and give me a pen. I'm like, “No. There should be an electronic ballot or a machine that I can use for that.” And she says, “Oh. Well, if you want to do that, then we have to go through the process of spoiling this ballot or he could just (he being Michael, I guess) he could just help you.” So, I am like, “No. It's my right to vote independently and I want to exercise that right.“ She audibly sighs, “Okay.” I'm like, “Gee! Sorry I put you out, lady who's supposedly getting paid to be here!” So, then we go over to the electronic voting machine and it wasn’t even plugged in. No one knows how to work it, except… wait for it… my husband! He turns on the machine. Yeah! He turns on the machine and everything. Then, the woman says, “Okay, there you go.” I was like, “There should be headphones. This should be talking, that's sort of the point.” She sighs again. She goes looking all around, “Where's the headphones? Where's the headphones?” Now, keep in mind I've already been here over half an hour. There wasn’t a line, but I've already been here over half an hour, right. They find the headphones but they can't find where it place in at. So, Michael, again (thank God for my husband – I do love him dearly) finds the headphone port. He's like, “I think it's here, where this picture of a headphone jack is. I think this panel has to come up.” She was like, “Okay.” She does nothing else, though, so Michael’s like, “Okay, I'm taking it off!” So, he takes it off and he gets it and we plug it in and I use the machine and I vote. It’s so stupid, because now it has to print out a paper ballot. So, now I go to scan the ballot and it says, “Ballot cannot scan, because this is a provisional ballot.” The woman says, “Why did you cast a provisional ballot?” I'm like, “You set it up!” [frustrated laughter] So, to the poll lady who’s acting put out, the others were like, “You must have hit something when you turned it on or something, because it's a provisional ballot.” “Well, I guess we're gonna have to spoil this one!” she says in a particular tone. So, this is a second spoiled ballot. Lisa McKinley Was she annoyed? Kimberly Parsley Oh, yes! It’s all my fault! How dare a blind person come in and try to exercise my right as a citizen to vote! This was just really putting a cramp in her bag; she was not impressed. Not impressed with me being there at all. And Michael and I are sitting there waiting for them to spoil the second ballot and looking at all the different things and all the different ways no one who's disabled can vote in this place. Like, in order to get in, we saw them helping an elderly gentleman in a walker up the step to get into the place. Really? That’s not cool. Not cool! There is a ramp into the building, but that's not where they set up the voting machines. They're not trying to be helpful for people with disabilities at all. Then, I hear them telling someone, “You got to make sure you don't get out of the lines when you're filling that in; you can't get out of that line.” So, I'm like, “What about someone who has Parkinson's and has tremors or other disabilities where manual dexterity is challenging?” That's not cool! God help them if they've got to go to the electronic voting machine! So, what I ended up doing was just saying, “Okay, forget it! Michael will fill out my ballot!” Lisa McKinley But, that's never gonna do. Right? Kimberly Parsley No, that's not what I want to do and that's not cool. And what pisses me off the most about this? I, when I was 19 years old, the ADA had just passed and there was a whole, can I say shitstorm? Lisa McKinley 07:32 [laughter] I was going to say, “Ladies and gentlemen, this is Kimberly trying to decide whether or not to bite her tongue!” Kimberly Parsley 07:38 [laughter] Yes! That's what this is. There was a whole shitstorm in the small town where I lived about having to move polling places away from where they'd always been into the schools because of ADA, “So all these disabled people could have their ramps and get in to vote and how dare they mess up our politicking and all our fun and our traditions!” More than 30 years on, I'm still fighting this fight. When I was 19, I wrote a letter to the editor of the paper, I went to Frankfort to talk to the Legislative Research Committee. Yet 30 years on, this still! Lisa McKinley 08:19 I'm kind of torn in the sense that it should not be this way. Right? But at the same time, I realize that we as disabled people are not top-of-mind awareness to whoever is setting these things up. But then maybe we should be, but how do we do that and should we have already arrived there? Kimberly Parsley 08:48 I would love to have just been an afterthought, but I don't think I was thought of at all. I mean, it's annoying to me that everywhere you go in the course of your day, you're always reminded, “The world isn't really set up for you. We'd really rather you not inconvenience us with your presence.” And I am totally fed up with it! So, I needed to take a couple of days to figure out how to channel this rage into something that can maybe bring about change and not just raise my blood pressure. [aggravated laughter] Lisa McKinley 09:33 Well, I'm sorry that happened! That sucks! There’s no better word. Yet, we deal with that stuff all the time. Example: when they asked Michael, “Can she sign this?” Kimberly Parsley Oh, yes. Lisa McKinley “Can she do that?” I was just somewhere the other day and the lady I usually walk with wasn’t there. So, another lady goes up to my husband and says, “So-and-so is not here today, so I'm going to walk with her if that's okay.” Duhhh! You can address me!“ And I've said that before. I used to be really snarky about it when I was younger. Kimberly Parsley 10:29 When you had the energy for it? Lisa McKinley 10:33 Yes! I’d be at a restaurant for instance and someone would ask, “What would she like to drink?” to somebody who was with me and I would answer, “SHE would like a Sprite!” You know. Kimberly Parsley 10:39 Yes. It gets so old! One of the things I think is particularly dangerous about this kind of thing (maybe dangerous is too harsh a word): the more that people try to erase you the more you feel erased. And that's not cool! That's not cool for us. That's not cool for our kids! That's not cool for… I mean, people with disabilities are the largest minority; we keep hearing that. So, it’s not just a few of us; there's a lot of us and we can't risk being erased! We've got to stand together and make sure that we're seen and that we're heard. Possibly loudly and with expletives (but maybe that's just me)! Lisa McKinley 11:34 Yes. I'm starting to embrace this “respect me” attitude, because I've always been the type of person to just get along. “I want to make myself small and not inconvenience anyone.” But, you know what? In 2023, I am gonna take my space… Kimberly Parsley There you go! Awesome. I love it! Lisa McKinley I am here! You're gonna see me, you're gonna listen to me! If that inconveniences you, so be it. Kimberly Parsley 12:07 Yes! I love it! I love it! That makes me happy to hear you say that. It really does. It makes me happy! Speaking of being heard, I'm going to stop ranting now. Well, I mean, I will still rant, of course. I'll just not do it on this particular episode anymore or this subject. But speaking of being heard, Lisa, how do you listen to podcasts? Lisa McKinley 12:29 Well, I do not subscribe to podcasts which I what I hear is what most people do. They find a podcast they really like and then they subscribe so that they are aware when new podcasts come out. But I basically ask my Alexa device to play the podcast that I'm interested in. I will say, “Play the latest episode of Dateline” and I can do the same thing with the iPhone. I can ask Siri, “Play the latest episode of Demand and Disrupt” and she will start playing it for me. If I want to find a new podcast that I… The thing with subscribing, I guess – correct me if I'm wrong – you can kind of browse and see what kind of podcasts there are that you might be interested in. Right? Kimberly Parsley 13:28 You can with a podcast app, like on your phone. I assume on the computer, too, although that's not how I do it. I mentioned to one of my friends that I was going to be recording for the podcast and she was like, “I need to listen to your podcast. How do I do that?” I was like, “Oh, okay. You have a podcast app on your phone.” And she says, “I don't think I do.” [laughter] I'm pretty sure you do! I'm pretty sure you do. So, I thought, “It'd be good to just walk people through. Maybe unawareness of podcast apps is a common thing.” Maybe some people would like the way that you do it. That would be cool when I'm moving around the house to be able to listen to a podcast that way. That's not usually how I do it. So, certainly the Echo devices and I assume it's the same way with Google Assistant. What are the others? I assume it works pretty much the same way. The way I do it is I use a podcast app. The one I use is called Downcast. It's very blind-person friendly, it’s very voiceover friendly on the iPhone and I think they have an Android app, also, but I'm not totally certain about that. But that's the one I use. There are some others. There's one called Overcast. There's one called Castro. There are lots of podcast apps. Whatever phone you have, if you just search for podcasts, it'll tell you. I mean, all phones come loaded with an app. Then, once you're in that app you would say, “Search for Demand and Disrupt” and it would come up. Then, once you click on Demand and Disrupt, there's usually (I think visually) a symbol or icon. I'm told it's represented as like a plus sign for add. Usually up in the right hand corner, I think, or it'll say, “Subscribe” or “Follow” or such. Follow one of those and then you'll just tap on that or double tap, then you're subscribed. Then, you’ll just go to your podcast app and go up to the top usually and you can tap on something and it'll refresh your feed. You'll get the newest episodes in there. That’s how I do it. And now I'm going to try the Echo device way. Lisa McKinley 15:55 It is convenient. You can also ask her (Alexa) for podcast recommendations. Now, in the last week or so I've noticed it’s started giving me updates. I'll get this little “Do-Do” sound tone on the Alexa, which means there's a notification. It will say, “A new episode of Demand and Disrupt has posted. Would you like to listen?” Kimberly Parsley 16:29 Really? Wow, that's cool! What if you say no? Will it just hold it for later? Can you just get it later? Lisa McKinley 16:34 I have said no, because I wasn't where I could listen at the moment. I don't really know what it did with it, but at least I know it's available. It's there; you go and ask to hear it later. Kimberly Parsley 16:47 Well, that is cool! So, we hope that people have found this useful; this walkthrough of how to subscribe to podcasts and different ways to listen to podcasts. If you use a different app that we haven't mentioned and you want us to mention it, I mentioned it or you listen to podcasts in a totally different way, let us know. Send us an email at [email protected]. We would love to hear from you! Speaking of hearing from people, we are going to hear my interview with Lindsey Brillhart. She is one of the parents featured in the book, A Celebration of Family: Stories of Parents with Disabilities. I was privileged to get to talk to her. So, here’s my interview with Lindsay. So, where here today with Lindsey Brillhart. Hello, Lindsay! Welcome to Demand and Disrupt: The Disability Podcast! Lindsay Brillhart Hi, Kimberly! Kimberly Parsley How Are You Doing? Lindsay Brillhart 17:48 I am awesome! I’m glad to do this. Kimberly Parsley 17:55 Excellent! I'm so glad to hear it. Now, you live where? Tell us where you are from, again? Lindsay Brillhart 18:02 I live near Cincinnati, Ohio. Kimberly Parsley 18:04 Okay. Are you on the Ohio side or the Kentucky side? Lindsay Brillhart On the Ohio side. Kimberly Parsley 18:11 Okay. All right. Well, will you go ahead and tell us about yourself and about your disability, Lindsay? Lindsay Brillhart 18:17 Okay. I have a partner that I've had for 14 years and I have a almost 13 daughter and a 22 year old daughter – two girls. Julie is 22 and Sarah is almost 13. I talk more about Sarah. Sarah has a more significant disability, so it’s more about her, but I love to include my other daughter in everything as well. I have Asperger's Syndrome. Kimberly Parsley 18:55 Okay. Tell me about some of the supports that you need for daily activities due to the Asperger's Syndrome. Lindsay Brillhart 19:04 A lot of the supports I need are to just have reminders and keep organized. I have a calendar and everything else, but still some days (we all have them) I need reminders about things. For example, my people that come and help me out, they remind me to make sure that I have everything together for the next day for my family. They make sure I get healthy meals. When my daughter, Sarah, was younger, I didn't have the best of healthy meals and I have healthy meals now. So, I can make sure that my Sarah has everything that she needs, because she is autistic, nonverbal and she has cerebral palsy and she doesn’t speak. But we have a PECS communication system, which basically means we have a book of things that she likes and she can show me a picture. For example, there's a picture of mashed potatoes and it says, “Mashed Potatoes” on the bottom. She likes mashed potatoes, so she can hand me the picture to say, “Mom, I want mashed potatoes,” in that type of way. She does make noises and things and we're learning with her videos. She loves to watch cartoons and stuff like that, but they’re smart cartoons. For example, one of the cartoons asks, “Do you know this letter?” and my Sarah makes a particular noise, “Ummm.” It's something close to that. So, we’re like, “Good! You know what that letter is!” She knows her letters. She's in seventh grade. So, she's learning a lot through the videos and things that she watches. Kimberly Parsley 21:10 I see. What other things have you had to do to adapt to Sarah? Lindsay Brillhart 21:15 I've had to learn how to parent her. When you parent a daughter that is autistic nonverbal, you don't know how to parent them at first. With my Julie, my Julie is totally verbal and can be on her own. She lives with my mom, because my family went through some rough times. We're doing better now, but we went through some rough times and Julie decided to stay at my mom's house. She has a bedroom at my house, but she prefers to stay with my mom. But I get to see her a lot. Example: yesterday. We went to lunch yesterday before I took Julie to work. I drove her, but she took me to lunch. And other things like that. So, we do get to go out. But I get a lot of the extra supports for doing things with Sarah, because I have never been with a child that is nonverbal. So, I get some extra supports with her. Kimberly Parsley 22:17 Well, that’s great! So, tell me about Sarah. Does she go to public school? Is she in a different program? Lindsay Brillhart 22:24 Sarah goes to a special school. In the beginning, Sarah went to a public school that had an autistic program and they had different things. I've learned recently that Sarah is a level four. Basically, it means that Sarah's in school with about 30 kids that have different kinds of special needs. It’s all special needs and they're integrated in different ways for those kids. Kimberly Parsley 23:01 I see. Okay. And she's doing well there and thriving? Lindsay Brillhart 23:05 She is doing well and thriving. Kimberly Parsley 23:08 Excellent! I'm glad to hear it. Now, you are featured in the book, A Celebration of Family: Stories of Parents with Disabilities. One of the things you talk about is when you were pregnant with Julie, your first child, you were afraid she would be taken away from you. Do you want to talk a little about that? Lindsay Brillhart 23:32 Yes. I have a dad and a grandfather who were in the medical community and they thought that I couldn't parent Julie. So, what I did before I had her: they wanted me to go through a parenting course of a pretend, fake baby – a doll – for about a week or two weeks. When I got this pretend baby, I got diapers, I got bottles, I got everything to take care of this baby and I had to learn to take care of her. It was all recorded, everything I did well with her, everything I did well with that baby and I did very, very well. So, I got to prove to my family that it was something good for me. Kimberly Parsley 24:25 And the reason you were worried about that is because there was a law on the books in Ohio that the state could take children away from parents with disabilities. Right? Lindsay Brillhart 24:41 Absolutely. And they have worked [on changing the law] since that and that was, oh my goodness, a while ago – almost 20 years ago! They're working on making it better. Dr. Kara Ayers (she’s in the book as well) has done a lot of work. I haven’t done as much work with that, but I've done a lot of other work. The work that I do now to do with that is to talk to people that are going into the system – talk to professionals that are coming into the system – to learn about people that have disabilities, because a lot of the people, when they come into the professions, when it comes to this system, they don't know what it's like to work with somebody with a disability. So, I do and I've trained probably about 2000 people in the past few years just to get them learning about people with disabilities: that we are real and we are out here. And the successful stories? Yes, we've seen some not successful stories, but I like to let them know that we have some successful stores out here. Kimberly Parsley 25:57 I read in the book where you mentioned a group called Partners in Policymaking. Is that correct? Tell me about that group. Lindsay Brillhart 26:05 Yes. When we came, I got involved with that through the county. I got involved with that, because I wanted things to be done better. Right before I had my little girl, there was a case (it’s all in my story) about a little boy named Marcus Faisal who actually lived in Ohio. He had family in Kentucky. He had autism and he went for a long weekend with his foster family. He had family, but he was adopted into the system and he had a foster family. Well, long story, sad story: the little boy got burned in the fire. The foster family left him in the closet for a weekend (it’s how he got burned in the fire). They didn't want them (the authorities) finding his remains and things like that. So, they’ve made it harder for people with disabilities. It makes me sad, because I don't want anything like that to happen to anybody. I think that people with disabilities should be out there and be known/to be known. We all have struggles, nobody's perfect in this world. I just want people to know that, “Hey, there are people out here that have kids with disabilities, but they have extra help and they can do things better for their families.” Kimberly Parsley 27:35 Yes! That was a truly, truly tragic, horrific story! Tell me about your work with TASP. Lindsay Brillhart 27:48 TASP stands for The Association for Successful Parenting. The website is attached to parent.org. I have worked with them for, oh my goodness, since right before my Sarah was born. I got involved with them, because of Partners and Policy, actually. Because of Partners and Policy, I had a lady that lived in Columbus, which is about two hours from me, say, “Do you want to go to this conference with me?” So, I went with the lady. I met her in the area where she was and I went with her to this conference. [As a result] I have been involved with this organization for 15 years as a part of my life. So, we help make sure that families get their stories known, because a lot of the families don't get their stories known and we want families to be out there and living successfully. Kimberly Parsley 28:58 Okay. What can people with disabilities do to advocate for themselves? Or what can people do to advocate for their children with disabilities? What are some things that people can do? Lindsay Brillhart 29:10 Let me give you some examples of a few things I've done. Telling my story in the book. I think that helps get disability awareness out there. Talking to people. Not just people in the book, I talk to people weekly about my story with my Sarah just to make sure that things are getting taken care of. For example, we're still working on my said medical doctors about things they don’t understand. With Sarah, some of her medical doctors are fellows, which are basically people going into medicine from college to be doctors and things like that. I still have issues, because they don’t understand people with disabilities. So, advocate, advocate, advocate for your kids! That's one big thing. We're working on making it better for them. Kimberly Parsley 30:02 Yeah. Do you find the medical system challenging to navigate? Lindsay Brillhart 30:09 Yes! Even when I have a dad and I have a grandfather [who were in medicine]. My dad is retired and my grandfather's not living anymore, but I still have family nurses and stuff like that. Even with that, yes, absolutely! I have learned to talk to them and just tell them about Sarah and make sure that my Sarah comes first, make sure that person comes first always. Kimberly Parsley 30:36 Did you get better at that over time? Was that hard for you to do in the beginning? Lindsay Brillhart 30:40 There are sometimes I have struggled with it [nervous laughter]. But yes, I'm always getting better at doing that. Kimberly Parsley 30:47 So, would that be your advice to other people? Just start and it'll get easier and better over time? Lindsay Brillhart 30:53 Yes. And your stories can always change. They are not gonna stay the same. They will get better every time you tell your story. I have people that I have told my story to 20,000 times, maybe (a lot of times) and they learn different things about me every single time that I present with them. Kimberly Parsley 31:16 Great! Well, thank you for sharing your experience with us, Lindsay. I’ll link to the organizations you mentioned in the show notes. I appreciate you joining us today! 31:27 I appreciate you interviewing me. I hope everybody has a good day! Kimberly Parsley 31:31 Thank you! If you like the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts. That helps more people to find us. If you really, really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all. Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put “transcript” in the subject line. Thanks to Steve Moore for helping us out with transcripts. Thanks to Chris Onkin for our theme music. Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Kentucky. You can find links to buy the book A Celebration of Family: Stories of Parents with Disabilities in our show notes. Thanks, everyone!

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Episode 20: The Business of Care

Steve Moore talks with Kimberly about the challenges of finding quality personal care attendants and offers tips to anyone in need of personal attendant care. And Lisa and Kimberly talk about Medicare scams, accessible Halloween costumes, and disability friendly underwear. Oh yes, they really do.

Below are links to the items mentioned in the podcast:

Federal Trade Commission Fraud Reporting

New Adaptive Costumes for Halloween

Victoria's Secret & Co. Takes Strides to Support Women 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.

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:03 Welcome to the Demand and Disrupt, the Disability podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Avocado Press based in Louisville, Kentucky. I'm Kimberly Parsley, and I'm here with my co-host, Lisa McKinley. Hey, Lisa, how you doing? Lisa McKinley 00:23 Hey, good, how are you? Kimberly Parsley 00:25 I'm doing very well. So tell me, Lisa, tell me if this has ever happened to you. You go, you're going to sit down to do something very important. Let's say you're going into the meeting, or you're going into church or I don't know, maybe you sit down to record a podcast, and your phone rings. And what is it? But a scam phone call? Does that ever happen to you? Lisa McKinley 00:50 All the time, all the time. Kimberly Parsley 00:53 And lately, those scam phone calls, though they've been more than petty annoyances, haven't they? Lisa McKinley 01:00 They really have. And so we're coming to you today with a warning. Scammers are really targeting persons enrolled in Medicare and Medicaid. So we've got a lot of Medicare and Medicaid phone call scams going on right now. And one reason being is open enrollment for Medicare. And so what scammers are doing, they are calling folks. And oftentimes it will start with a robo call, where you're getting an automated call, telling you to press one for more information, or press two to be removed from the call list. So what happens, you press one for more information and you get connected to a live operator. And this is where the scam comes in. They will try to get sensitive information like your bank account number and your credit card number. Medicare will never ask you these things over the phone. You may get a call text or email from your from your state agency telling you it's time to enroll. But they won't ask for credit card numbers or bank information. So that's the number one red flag. And if that happens, you need to hang up immediately. And you can report the scam to the FTC. Some of the red flags to look out for are asking you for money, asking you for your credit card your bank accounts, threatening you saying if you don't act within a certain timeframe, you're going to lose all your benefits. It's really it's really scary. I don't know if you've received any of these calls. Have you Kimberly? Kimberly Parsley 03:00 I have Yeah. And it is scary for those of us, especially for whom our healthcare is so important. You know, even if we know better, we know this is probably a scam. But my gosh, we're all so afraid of losing our health care that we're like, well, maybe I'll risk it. I don't know. Lisa McKinley 03:24 It's really - it's not even just phone calls. There's a lot of mail scams even going on with Medicare. We just received a letter in the mail saying my mother's benefits were going to be decreased, like by two thirds. And it's like there's no reason for this. And of course, they give a fake number but you know, it looks legit. So anytime you are in doubt, contact your, you know, your state agency, contact your local office, take the letter in or tell them about the phone call you received and make sure things are really legitimate before you act upon any kind of letter or call you receive. Kimberly Parsley 04:12 Well, that's good advice. And number one always, never give out personal information over the phone. Never give out your bank account information over the phone. Is that right? Lisa McKinley 04:21 Never Never, never never. FTC says if you are asked either your bank account information or credit card and information, that it is a scam and to hang up immediately and to report the call. Kimberly Parsley 04:40 And how do they do that? How do people report? Lisa McKinley 04:42 You can simply go to report fraud.ftc.gov And there will be a place there where you can fill out the details of the call and the fraud. Kimberly Parsley 04:55 Excellent, excellent. That's very important. That's a step I don't think I mean that's a step I've never taken. I bet a lot of us haven’t, you know, so great information. Lisa, thank you so much for that. Um, something since we're talking about scary things, it is October, which means Halloween is nearly upon us. And one of the things I have been looking into is Halloween costumes for the disabled. And I looked up a wheelchair like additions to costumes for wheelchair users in particular, like for your little one. Apparently one of the most common costumes is Batman. And for wheelchair users, there's like a Batmobile you know, edition that you can buy so that the wheelchair is covered in like a Batmobile costume? Isn't that cute? Lisa McKinley 05:51 Oh, that is cute. Kimberly Parsley 05:53 I thought that would be great. The princess thing you could be Cinderella in the, you know, the awesome Cinderella carriage. There were all kinds of these and they are sold at Amazon. Disney makes a bunch of them. And I'll have a link to some of those in the show notes. For anyone who's interested, I think there may still be time to get the costumes. And, you know, I was thinking about this when I saw it. And I thought, you know, I wonder if this is the kind of thing where like people who use wheelchairs, maybe they've known this, maybe this has been around for years and years. And I'm just now figuring it out that way. And I think it's cool. And so I wasn't even sure if I was going to talk about this topic today. But then I thought, you know, our roots in this podcast are as an offshoot of the original Disability Rag. And one of the things the Rag did was to educate people with disabilities, educate them about people with other disabilities. So, I mean, I think I would like to continue that. What do you think? Lisa McKinley 07:14 I mean, I think you're right, I think it's really important. We don't always know, crossed disabilities, you have your certain disability, that's familiar to you. I mean, for us, it's, it's blindness and but you're not always aware of the struggles or, or the things other people might be going through or the equipment that's available to them. And I think it's important to educate ourselves and, and to be open to, to hearing about other disabilities and what might be available. And not to get offended. You know, it's, it's easy. When you've been, I don't know about you, but it's really easy. I think when you've been walking in a certain disability for so long, to kind of expect that everybody knows exactly what you deal with on a daily basis. And to get offended. I sometimes get caught up in that. I don't know if you do but I think, you know, by talking about other disabilities, it might help. Kimberly Parsley 08:31 Yeah, I think so. I think so. And you know, also that, unfortunately, just because you have one disability does not, does not make you immune from getting another one. As I know, all too well, you know, so. So I just think we can't ever stop educating ourselves. And then sharing information because, you know, sharing, let's share stuff with each other, you know, let's share information. And since we're sharing, so I gotta tell you, there's something else because I went down an internet rabbit hole, like you do, and also found out this great thing, sort of dealing with costumes, sort of not, but Victoria's Secret is now making, they have a line of clothing for people with disabilities. A line of bras and panties. Isn't that exciting? Lisa McKinley 09:28 That really is, but tell me about them. Like how does that work? Kimberly Parsley 09:32 Well, the thing that I found exciting was that they have magnetic closures. So you know, there's like the, you know, the hooks for brawls and things that you can't do one handed, you know, you just can't. Magnetic closure, that seems more doable, you know, so Lisa McKinley 09:54 I mean that can like revolutionize certain people's lives. I mean really like I mean, even for us that are getting a little older, I mean, I've pulled a muscle just trying to reach back there and clasp the little hooks. So you know, and I'm not the only one. I've heard lots of women, apparently you get 40. And things just aren't as flexible anymore. So there you go their uses and purposes. Kimberly Parsley 10:24 No, no, right. None of us are getting younger. So I'm very excited about this. I wanted to share that information with everyone. Do with it what you will, that's what I say do with it what you will. Lisa McKinley 10:37 So who are we interviewing today, Kimberly? Kimberly Parsley 10:40 Well, today, I had the pleasure of interviewing Steve Moore. Steve does our transcriptions for us. He's so kind to do those for us. Steve is a wheelchair user. And he's also going to talk to us about the Personal Care Attendant Program. And the changes that that program has seen over the last year, the pros, the cons, and just tell us some about that. So a really, really positive really wonderful person. So I was thrilled to get to talk to Steve. Lisa McKinley 11:10 Oh, how exciting that we get to hear from Steve and he gets to transcribe us talking about bras and panties. Kimberly Parsley 11:18 I know. Oh, you're right. While I should, I should maybe apologize to him in advance. So is it really an apology if he has to type it up, though? Seems unfair, anyway. And now for my interview with Steve Moore. Hello, so today we are joined by Steve Moore. He does our transcriptions for us. So thank you for that. And welcome, Steve. Steve Moore 11:47 Hello, Miss Kimberly, it's great to be here. Great to see you. Kimberly Parsley 11:51 So tell me a little about yourself. Steve Moore 11:54 Well, I'm a quadriplegic from a motor vehicle accident, been doing this for a while. It happened back in

I quickly realized after rehab and, and getting physically as far as I could, that I wasn't gonna be able to do the same old hands-on manual types of labor that I used to do so. And I wanted to do something with my life still. So went back to school, and I got my bachelor's degree in business, finance major, and worked for Chase Bank for 13 years full time till I got that to where I couldn't work anymore because of pressure issues and ulcer issues so I had to retire. But I've tried to stay occupied and stay healthy. And that's the biggest job I have now. Just turned 60 Thursday of last week. Kimberly Parsley 12:58 Oh, happy birthday. Steve Moore 12:59 Oh, yeah. Thank you for the condolences. I appreciate that. That's about that's about the gist of it. Kimberly Parsley 13:08 Well, you know, they say the thing about humans is that we're adaptable, right. And so it sounds like you adapted and went on to, to do things. So that's a, that's great that you were able to do that. Steve Moore 13:22 I was fortunate to realize, early on that life goes on. And if I didn't do something with myself, I was never going to be happy. So I just, I just pulled up my big girl panties. Kimberly Parsley 13:39 There you go. So tell me about your experience with personal care attendants. Because I assume that's a big part of your life. Steve Moore 13:46 Yes, it is, you know, being a quad, you know. Of course, you know, quads vary. All of our disabilities vary so wildly. Totally dependent on all of my ADLs (activities of daily living). So it's vital for my well- being and function. And early on, of course me so long ago and of course being a new challenge. It was really difficult. Resources weren't available then that are now, not that it's a piece of cake now, but nothing used to be available. You know, and I ended up going to, whenever I started in the school, you know, I had was living back with my parents here in Louisville. And it was really so difficult to not only to get care but to get transportation to and from school. So I had found out about a Voc Rehab Center down in Eastern Kentucky, southeastern Kentucky, Paintsville, the Carl D Perkins Center. So I went and toured that and decided to stay there and I was the first person there that that they started the program of taking out taking students to, or transporting students back and forth to and from Prestonsburg to the community college for classes. And so I lived there, I lived there for about three and a half years on the medical unit and got all of my physical and occupational therapy, and earned all of my credits that I could that would transfer back to Louisville. And, and then, at the time that I got all that done and had to move back to Louisville, I had been on the Personal Care Attendant Program waiting list for a while. I don't recall the length of time, but it came open for me soon after I got back to Louisville, moved back to Louisville, and I was able to utilize that to start getting care. And before that, because I was in college, voc rehab helped me cover home health. So they worked out that way. And especially with the personal care attendant program, I was able to hire and schedule my help my caregivers, and keep a good class attendance and so on so forth and finished college and then set out on my job search. Kimberly Parsley 16:28 Now, recently, there have been some changes to the personal care attendant program, can you can you tell us a little about that? Steve Moore 16:35 Yeah, I can probably give an overview, the program itself was had always been coordinated and administrated by the Center for Accessible Living offices. I don't know exactly get all the nuts and bolts work exactly, but, you know, someone at each of the offices had their areas and their scope of responsibility, you know, for administering the program. And then, you know, bi weekly, like consumers will turn in their paperwork for their caregivers, and then those offices process it with the basically, finance in Frankfort, you know, what, to, what to pay who, and those funds, you know, would come to the care to the consumer, and then go, you know, from the consumer to the, to the caregivers. The state decided that if they could take it in house with the Department of Aging and Independent Living in Frankfort and do it from there, centralize it, that they could save a lot of money doing it and thereby provide consumers with more funding to hire caregivers. So that's what they did and they had to transition over at what at the beginning of the year, or the end of the year, 2022. And for me it's been fairly smooth. I haven't really had any trouble Yeah, so that's been a relief because you know, you always have those worries anytime there are changes and it's so vital. The assistance that provides us is so vital to most everyone as far as retaining assistance so that's been a blessing. Kimberly Parsley 18:42 So what have you heard from other people? Has the transition been as smooth for others as well? Steve Moore 18:49 I really don't know I haven't. I don't know anybody else personally who benefits from the program so I really can't comment. Kimberly Parsley 19:00 But when those big changes come and you know they're coming up at It is terrifying, isn't it? Steve Moore 19:04 Oh, it can be it can be because especially you know when you've experienced dead spots before you know, Oh, no. What am I gonna do now? Yeah, I was really fortunate. As I went through the process after moving back home, I had super supportive parents and family and thankfully I didn't have difficulties but for the most part, things fell into place. Pretty good and I was I was an oddball. I wasn't I wasn't, I was a statistical, what do they call it a statistical - Kimberly Parsley 19:42 Anomaly Kimberly Parsley 19:49 So many of us are statistical anomalies Steve Moore 19:53 Really are if we think about it. Kimberly Parsley 19:56 So what kind of changes would you like to see going forward for a personal care attendant program? Steve Moore 20:03 Oh, I'd love to see it expanded to become available for more disability, disabled Kentuckians, the need is so great. It's not like I said, you know that things have changed a lot over the past 39 years to what they were. But, and there are comparatively a lot of other resources available and helpful, that is still not enough, there are just so many people who are affected with their well being and independence and so forth. And to provide, you know, even a little more funding so that we could actually attract and retain assistance more easily. It's really difficult when you lose a good attendant. Because it's usually a process of hiring, and trying different people over time to find someone that's this really good again. And so you know, that's the thing. That's one of the, that's one of the things that might would help, you know, if you were able to pay to attract more qualified or more motivated, folks, Kimberly Parsley 21:19 So you interact with these people constantly, right? I mean, the quality of your life is in, in a lot of ways dependent on the quality of your personal care attendant, would you say that's correct? Steve Moore 21:34 That's absolutely right. You know, you can't leave the, whenever you have anybody that's not thorough or not reliable or not sufficient in their, in their care. Then you know, that that really takes away from your, from your attitude, from your, your personal sense of well being and your worries, lows and so forth, to have caregivers who are who are responsible and know their jobs and are motivated. It's just, it's makes life so much easier compared to the alternative. Or even you know, compared to an institution or a nursing home one time I had about a 30 day stay to recover from surgery, I swore then that I'd never go back to one. I don't know that I won't never know about your future, likely. But to be able to have your own care at home, to be able to decide it yourself, to direct it yourself. And to hire your own people, or replace your own people, et cetera. There's just no, there's just no comparison. There's nothing like it. Kimberly Parsley 22:49 We all want that choice, don't we? Steve Moore 22:53 We really do. It’s incredible, the difference it makes in your life. Kimberly Parsley 22:59 Yeah, same, same here. Same here having, having choices is well, it's critical to your well being You're right about that. So it let's say it, there's someone listening, and they are at that point or on the cusp of needing personal care attendants. What do you advise? What do they need to do? Steve Moore 23:18 Well, don't give up as for sure. Try to think of all the resources possible, you know, be in contact with your local Center for Independent Living or the Department for the Aging and Independent Living, talk to other people too, especially if you know anybody that is in, you know, the same boat or has had the same experience for ideas, you know, do brainstorming with other people, you know, look online. There's a one website that I'm that I'm aware of is called care.com. And you can advertise there for help, you know, you can even get on get on PCAP list as quickly as possible. If you're already on that list, you know, you can use those funds to pay somebody you know that you hired to care.com or you know, general health one at as long as that waiting are difficult but expensive, but I don't even know what the Run Now fortunately, I haven't had to look for anyone for quite a while. Kimberly Parsley 24:20 How long is the waiting list right now? Do you know, you know that? Steve Moore 24:22 No. I'm not familiar. I know. It's too long. Yeah. Yeah. You know, the brainstorming with others, you know, I think is an excellent idea of coming up with solutions with alternatives. Kimberly Parsley 24:37 It's just simply nothing that compares to having someone who's well compensated to help you out for those kinds of things, though, is there? Steve Moore 24:48 You know, you don't want somebody to be just totally motivated by money. But, you know, it does help with the recruitment and retention of some, you know, a lot of us, you know, we don't need somebody around the clock or for multiple hours stretches, you know, like, like half a day or six or eight hours a day. You know, so sometimes it's really difficult to get somebody that can just come for two or three hours, you know, for your, for your morning cares or your night cares, etc. So, you know, being able to pay you more is more attractive to for somebody that, you know, looks at the hours and says, Oh, gosh, I need to earn more than that, you know? Kimberly Parsley 25:40 Well, what else? What else have I missed that you think's important for our listeners to know? Steve Moore 25:45 Just know that your efforts will pay off. Sometimes you, you know, may have to do repeated hirings. And, you know, that involves interviewing folks, talking to folks on the phone, and, you know, screening. Another good idea is to, you know, come up with decent questions to interview folks so that you can get an idea of their skills and one helpful tool is to come up with good screening questions, for your, for your folks that you're looking into possibly hiring hire. You're gonna need to talk to folks on the phone and set up interviews sometimes with folks and good questions can give you a good idea as to how the person feels about such a job, and the requirements of the job and so forth. The Center for Accessible Living has a great employment package that, you know, if you are on the personal care attendant list, but you know, they can provide you or they might even provide you one, I'm sure they would provide you one, even if you're just on the waiting list, whether you're on the list at all, it's just a good idea to do that. And, and just keep trying, keep trying. And the more you try, the better you're going to come out. Sometimes you're going to have to hire people and let the same people go in a short time because you’re really not satisfied with them, or are they don't work long and they leave. It really takes a special person to do this kind of work and to care what about they're doing and, and be really motivated, you know, other than financially, but you know, it pays off. It pays off in dividends all the way through as long as you stay with it. Kimberly Parsley 27:56 Alright, well thank you very much, Steve, for educating us about the personal care attendant program and your own issues with that. And thank you very much, and everyone else. Thank you for listening. We will see you again soon. Bye bye. If you like the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts that helps more people to find us. If you really really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to demand and [email protected] and put transcript in the subject line. Thanks to Steve Moore for helping us out with transcripts. thanks to Chris Onken for our theme music. Demand and Disrupt is a publication of the Avocado Press with the generous support from the Center for Accessible Living located in Louisville, Kentucky. And you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities” in our show notes. Thanks everyone.

Find out more at https://demand-and-disrupt.pinecast.co

Episode 40: Unity is the Way Forward

Episode 39: Changing the Narrative

Episode 38: A World of Feeling

Episode 37: Making a Way

Episode 36: Disability ambassadors, we salute you!

Episode 35: Federal rule change increases protections for people with disabilities.

Episode 34: Proud of Our Disability Allies

Episode 33: Marriage Penalty

Episode 32: How Dare You Even Ask That

Episode 31: Finding Purpose

Episode 30: Getting Around

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Episode 29: Help is out there, and it’s available at 0% interest!

Episode 28: From Dancing to Disney

Episode 27: We’ve Got This

Episode 26: I am Alive

Episode 25: Empowering Parents

Episode 24: Rerun: Still Marching!

Episode 23: Wrap It Up!

Episode 22: When Government is Part of the Solution

Episode 21: That’s Not Cool

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Episode 20: The Business of Care

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