Keith Hosey and Carissa Johnson interview Carolyn Wheeler, who simplifies the complicated and often confounding world of disability benefits. If you ever wondered how working would impact your benefits, this is absolutely the episode for you!
Helpful links:
Kentucky Hart Supported Living Program
Community Partner Work Incentives Counselor
Disability Benefits 101 - Kentucky
Kentucky Office of Vocational Rehabilitation
Thanks to Chris Ankin for use of his song, “Change.”
The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.
Be sure to follow the Advocado Press Facebook page
Visit Appalachian Assistive Technology Loan Fund for assistance.
Visit Moving Forward, the Advocado Press blog.
Send comments and questions to [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.
Robotic Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.
Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I am your host, Kimberly Parsley, and I am here with two special guests today for our opening segment. Roving reporter Keith Hosey is with me. Hello, Keith. How is it going?
Keith Hosey Hi, Kimberly. I'm well. I'm cold on this day of recording, but other than that, all right.
Kimberly Parsley Yes, indeed. And I also have with me Carissa Johnson. Hey, Carissa. Carissa Johnson Hey, Kimberly. Kimberly Parsley And of course, Keith and Carissa have both been on the podcast. They are supporters of the pod and longtime guests and friends of our podcast. And they did a wonderful interview with Carolyn Wheeler. And Keith, why don't you tell me who Carolyn is and what you guys talked about?
Keith Hosey Sure. So Carolyn, I've known Carolyn for probably over a decade at this point, just having been in and around the small circles in Kentucky that involve various disability groups. Carolyn works for HDI at University of Kentucky and is just an all around interesting person. I tend to, there's a few people in Kentucky like Carolyn that I tend to refer as whenever you show up to a meeting, they're one of the smartest people in the room. So, you know, Carolyn, I just enjoy discussion with her. I think it helps that we're like minded on some things like employment and benefits planning. But she really, she definitely knows her stuff and I always learn something when I talk to her.
Kimberly Parsley I learned a lot listening to your interview with her about, oh my gosh, about the ABLE accounts that I was not aware of. Our listeners will learn all about that and about the whole thing about benefits. It's so confusing. And yet she gave us so much information, but made it sound so easy, didn't she?
Keith Hosey It did. And she's really good at making complex things much more digestible.
Kimberly Parsley Mm—hmm. And I appreciate so much you and Carissa stepping in to interview her. Carissa out there in Murray, Kentucky, do you get a lot of questions and things about benefits?
Carissa Johnson We do. The Center for Accessible Living, where I work, we get all kinds of questions. And the WIPA program, through the Center and through Goodwill in Kentucky, helps explain benefits to folks and how particularly their benefits are going to affect them. Because for everybody, it's different. I've had some personal experience with the WIPA. I would have never, in my wildest dreams, jumped off benefits if I didn't learn what she taught me about all the incentives that are out there and the safety nets that are out there for those with disabilities that want to try work. So it's amazing what people don't know, and knowledge is power. So I'm really thankful for the program and the opportunity for Carolyn to let us explain it.
Kimberly Parsley Yeah, yeah, it really was. It is very complicated, but trust me, our listeners will know so much more after they listen to this interview. And yeah, and anybody who wants to reach out to WIPA, which stands for something, I forget what it is. Do you know, Carissa, Keith?
Carissa Johnson I can't build that one, now I'm forgetting.
Keith Hosey Yeah, it's work incentives, planning, and assistance.
Kimberly Parsley Awesome. Look at Keith coming in there with it. Way to go, Keith. Thank you. So they will help you to make sure that you have all the information to make the best choice for yourself. And you can reach a WIPA benefits counselor through reaching out to the Center for Accessible Living, either through email or on the Web or giving us a call, whatever. And we will put you in contact with someone. And speaking of things that are complicated and messy, Keith, you brought to my attention more than a year ago now about the subprime minimum wage. So can you tell us a little bit about that? Because there's been some movement on that front of late.
Keith Hosey Yeah, Kimberly, I'm happy to talk about the subminimum wage.
Kimberly Parsley —Subprime. Yeah, did i call it subprime like subprime mortgage? Yeah, sub-minimum wage—
Keith Hosey Right, right. That's all right. So for those who may not be aware, a long time ago in 1938, there was a Fair Labor and Standards Act signed into law. It did a lot of wonderful things. One of the things it did at the time was make a provision where people with disabilities could be paid lower than minimum wage. And the idea at the time was to be helpful. The prevailing view of disability was that people with disabilities could not do or work at the same level as individuals without disabilities. Of course, now we understand that that is not true. There are people with disabilities out there in all types of careers and fields doing all types of work. Yet, this Section 14C of the FLSA is still in existence in 2025 as we're recording this. So what happened a couple years ago is the Department of Labor said, we're going to take a look at this. And they did. They did some analyses. There are already several states on the state level that have gotten rid of sub-minimum wage for people with disabilities. So those, I believe Delaware is one. Vermont, possibly. There's a number of them, several on the West Coast as well. And what they did was phase it out. They just didn't just say, hey, we're done tomorrow, right? Because there's lots of systems in place that we have to look at and we have to support the individuals that might transition. But what did happen is the Department of Labor came out with a proposed rule. And proposed rule sounds to the normal person, to the average Joe, that this is an idea that we might want to float. But when government departments get to a proposed rule, they're saying, this is what we're going to change the law to, but we want public input. So they released a proposed rule late 2024, and they opened up just earlier this month. From about December 20-something through, for about a month, through about January 18th, for this comments period, for individuals to comment. And plenty of people did in different ways. But what the proposed rule says is that based on its effective date of a final rule, which is the next step after you get a proposed rule, they got input. And so they didn't come up with this out of a vacuum. I want to make sure people understand that. They got a lot of public input before the proposed rule. So now they're submitting the result of that public input for more public input. And then when they take that, that's very government, isn't it? Kimberly Parsley It is. [laughter]
Keith Hosey So when they take all that together, then they'll form a final rule, which will look very much like the proposed rule. So they are proposing to cease any new Section 14C certificates from the federal government. That means no new organization can get a certificate to pay people with disabilities sub-minimum wage. And then they're going to have a three-year period where they're going to phase it out. So they're going to have supports for agencies that may do that work right now to be able to transition their business model to an agency that does employment on a competitive level instead of the sub-minimum wage. So it's really exciting news for the Disability Advocacy Committee, community, I'm sorry. And so hopefully we'll see that come to fruition. You know, oftentimes with changes of presidential administrations, regardless of your political preference, if it is a change, then those new people will have new priorities. So this was a priority of the previous Biden administration. That doesn't mean that the current Trump administration won't follow it through. It just means that, you know, it's not as certain as it would have been if it happened a year ago. But I'm still pretty hopeful. You know, disability has consistently been a bipartisan issue. You know, Republicans and Democrats alike have family members with disabilities, know people with disabilities and in general support good disability policy. And so I'm still hopeful to see that happen.
Kimberly Parsley Yeah, absolutely. And of course, here on Demand and Disrupt, we will keep everyone informed and aware of how this proceeds. And I'm glad, Keith, that you gave us some background on the law because, you know, I think it was good intentions, a good idea that vastly outlived its usefulness, don't you?
Keith Hosey That's a great way to put it.
Kimberly Parsley Yeah, so...
Keith Hosey Good idea at the time, and yeah, you said it perfectly.
Kimberly Parsley Yeah. So great. Good stuff to report here on this cold January day. Good things to report and a great interview. You all are going to learn a lot when you listen to our interview with Carolyn Wheeler conducted by Keith and Carissa. Thanks guys.
Keith Hosey Keith Hosey here, along with Carissa Johnston. We're here with Carolyn Wheeler. Carolyn is a native Kentuckian with over 40 years of experience in program development, training, and advocacy on behalf of people with disabilities and their families. From 1990 to present, she's been employed in a variety of projects with the Human Development Institute at the University of Kentucky. She was instrumental in developing the Kentucky Heart-Supported Living Program, which we'll put a link in this podcast, and the promotion of person-centered planning practices. She's a founding member of Life Plan Kentucky, which we'll also link in this podcast, which is a pooled special needs trust. Carolyn is certified as a community partner work incentive coordinator, and we'll put the Choose Work website on there as well. And provides training on the positive financial impact of working for people who receive social security disability benefits. She was also involved in planning efforts to implement the ABLE Act in Kentucky, which is known as the STABLE Accounts, which we will link as well. Since 1980, Carolyn has voluntarily served as a legal guardian and power of attorney for three different individuals with intellectual disabilities whose parents were deceased. In this role, she's helped each of them to live a good life in the country. Carolyn, welcome. Thanks for being here.
Carolyn Wheeler Well, Keith and Carissa, thank you all for the invitation. It's an honor to be with you this evening.
Keith Hosey Thank you. So I want to touch on just a couple things that I read out. Heart Supported Living, named after Hannah Hart, of course, is a huge program, a hugely beneficial program in Kentucky for individuals with disabilities and just a wonderful resource for Kentuckians with disabilities over the years. And then I want to talk a little bit about the ABLE account. When we passed the STABLE law here in Kentucky, I was serving on the Commonwealth Council for Developmental Disabilities, and we advocated for that as well. Oftentimes when our listeners hear about advocacy here on the podcast, we talk about how it's not just a one-person thing. While one person can absolutely change the world, oftentimes it is a group effort to get these things. And that's a wonderful resource for Kentuckians who receive Supplemental Security Income, SSI, the STABLE Counts and ABLE Act have allowed for those individuals to really be able to get out of poverty a little better while in those programs. Carolyn, I wanted to ask you about being a guardian and power of attorney. And how did you kind of get into that for these individuals?
Carolyn Wheeler Well, thanks, Keith. So I guess like many things sometimes in life, they came into my life. The people came into my life. So when I was in graduate school in Syracuse, I was introduced to a man whose first name is Gary, who was virtually, I guess, or basically his parents had not been able to care for him at home or chose not to. So you all can possibly relate, even though you're a lot younger than I am. But Gary had lived, was born in 1950, had lived in a number of state institutions in New York, because at that time, that's what we had. These Medicaid waivers that we now know about and just value so greatly, they didn't exist. And, but Gary had been able to move out of an institution and, but he was basically not quite homeless, but close and just, again, met him through a series of circumstances. And at that time, just becoming his guardian was kind of all I knew to do in order really to be able to hopefully get services for him. And so I was able to do that. I also managed his SSI payment at the time and actually applied for a HUD section eight apartment for Gary in 1980. And he lived there until maybe about five or six years ago. And now he needs more support, but he's still living, you know, pretty independently. And then the folks here in Kentucky, I met man by the name of Clinton Montgomery, when I worked for seven County services and was asked to go visit him at a personal care home. Now you all probably know enough to know that personal care homes, these are not the kinds that maybe older adults go to and pay four or $5,000 a month to live in. These are personal care homes worth that time, Keith and Chrissy. You may or may or may not know, but they essentially took pretty much all of your benefits. You didn't, maybe you had your personal needs allowance of 40 bucks a month. And so I met Clinton and actually his dad lived there. And again, guardianship for me was a way to be empowered to act on his behalf. It's not, if you read the guardianship statute, it really is to help people make decisions, but also to lead good lives. And I was able, again, as his guardian to access services and eventually help him go And he worked in a sheltered workshop, which you may or may not remember that, and then was fortunate because of supported employment coming about. He was hired on a full-time basis at the Courtyard Marriott in Louisville, and he was able to actually, I was able to help support him to buy his own home. So I think that, well, and so it's a good segue then, you know, Keith and Carissa, just into the power of work in people's lives. Just the power of work, the transformative power in terms of relationships, but also income. And that was pre, you know, the WIPA programs you all are, I'm sure, familiar with, the Work Incentives Planning and Assistance. So depending on where you're living, you can click on that Choose Work link and you can find out the Work Incentives Planning and Assistance program in your state. You want to get connected with them. But it was through the help of a friend named Lucy Miller, whom you may know, Keith.
Keith Hosey Chrissy, you probably know Lucy, too. Carissa Johnson I do. [laughter]
Carissa Johnson So Lucy was doing, you know, benefits counseling before people got paid to do it. And we all know of her extensive knowledge. Clinton and I actually took her to dinner and I had a letter from Social Security I didn't understand. And so she explained it to me. And then she explained to me about this thing called substantial gainful activity. And then she explained to me something called impairment related work expenses. And all that to say is that I took what she told me. I took her advice. And Clinton had impairment related work expenses. So I was able to maintain Clinton's full Social Security disability insurance SSDI payment on his own work record, his own work record, and his full-time employment. And that's how he could afford to own a house.
Carissa Johnson So. that is awesome.
Carolyn Wheeler So it's just that and again, Clinton is a person didn't go to school, man, a few words, but like to work and through supported employment was provided with some low tech accommodations to accommodate the fact he didn't read, didn't tell time. So I just want our listeners to be, I guess, just curious if you've thought about going to work, but you're afraid you're going to lose your benefits. So I want to encourage you to be curious, to get factual information about that, because you're so limiting. Frankly, you're most likely holding yourself hostage to your payment when now, especially substantial gainful activity is going to be over sixteen hundred dollars a month next year. I mean, you could earn some real money and still maintain your full SSDI payment and still some SSI. So you can tell I'm pretty passionate about it.
Keith Hosey And that's exactly why I said I need Carolyn Wheeler on this podcast and we need to talk to her. You know, you're preaching to the choir with Carissa and I. We both cut our teeth in employment when we started in the disability field. And I love, I just want to go back to one thing real quick before we walk away from Lucy. I want to get an angry email from her. So I'm going to say what her nickname was when she was coaching her daughter in high school.
Carolyn Wheeler I can't wait.
Keith Hosey They called her the Cussing Coach.
Carolyn Wheeler That sounds like Lucy. [laughter]
Keith Hosey So, the other more serious thing I wanted to go back to was, Carolyn, when you were talking about, you know, being power of attorney for these individuals, you said you're empowering them. And I don't think a lot of people associate the words empowerment with a power of attorney. And certainly, the reason I brought you on here is I want to talk about employment and how people can dig their way out of poverty level. And like you said, trapped, maybe even a hostage. And to me, the longer I work in the employment field, the longer I believe that misinformation about benefits. Is the number one barrier to people with disabilities going to work. I can get an angry letter for that, too, because someone's going to say, no, it's transportation. And of course, we have a lot of big issues. But for me, until that person understands how their benefits are going to be affected and how they can benefit from working, you know, a lot of people will stand in their own way. And I would, too, probably, if I had the wrong information. So, I appreciate you equating the empowerment with those and he owns his own house now, which I don't know the exact percentage, but it's less than 20% of individuals with developmental disabilities own their own home. So that's.
Carolyn Wheeler —or maybe even less or maybe even less and I should add actually so Clinton actually died unexpectedly not that you would have known that Keith but in 2003 and that's I had met his sister so a sister has an intellectual disability as well but again circumstances very interesting circumstances how it come for her to be back in Clinton and then my life because in Clinton is not a person again man a few words he doesn't know his date of birth I mean he but I want to but I do want to say for the listeners benefit this is a man a few words but one of his favorite expressions was and he would say it in a sing-songy voice, “no work no money” and that is a smart man. [laughter] I don't care what his IQ was. He was a smart man and he had a really strong work ethic. He really wanted to work. And so I'm grateful for the sheltered workshop that kind of launched him and then grateful for the support employment folks that helped him get this really great job. But when Clinton died, I thehard-pressed take on this role in his sister's life. So his sister, Linda, who was a bit younger, was living in a kind of a group home out in Shelbyville. And so I petitioned the court and I was initially, again, her limited guardian. And then when that expired, I'd been power of attorney for my own family members and had just seen how it works. I mean, it just works. If you have a good power of attorney, again, we may all at some point not be able to manage our own medical care, financial affairs because of cognitive, as you get older, your cognitive decline or illness, you know, that you just, you can make your, you make choices, you can make your needs known, but you can no longer navigate the complexity of some of those things. So I worked with an estate planning attorney here in Lexington and became Linda's power of attorney. Linda knew if she signed again, she executed the document that I could still do for her everything I did for her. And both Clinton and Linda would refer to me as the money lady. I mean, I just, I've managed their money and I do a good job of it. So that's the empowerment, Keith. It gives me the, that and being the representative pay you a social security, but just. It gives you the ability, again, to do things, again, with but also on behalf of a person. I mean, Clinton would not have understood how to sign all the forms to execute a mortgage. People who don't have an intellectual disability probably don't even understand what they're doing, but they could if they chose to read it. Clinton doesn't read. Similarly with Linda, I was able to help figure out how to get her moved to Louisville, and she actually lived in Clinton's house for a while with the same person he'd lived with, and I was able, again, to access some services there, employment-related services for her. So those are things neither of them could do, and just being somebody's friend doesn't make you, I can't just sign forms for them. I can't give consent. Does that make sense? I had to consent. I had to consent to voc rehab. You have to consent. You need a legal authority. So what I love about power of attorney is that Linda, rather than the court, is giving me the authority to act on her behalf. That's what a power of attorney does. You're giving someone else the authority to act on your behalf if or when you can't. So it's empowering that way to me. I'll just tell another quick story. April of 2020, can we all remember where we were? You know, did you even have a decent mask? I didn't. Linda fell and fractured her pelvis. Now, Linda lives in Louisville. I live in Lexington. So just I do end up coming to Louisville. We end up calling 911, take her to Norton's on Brownsboro Road. And I was able to present my power of attorney to the ER emergency ER nurse with my cloth mask that wasn't worth much. Then go sit in my car for three hours while they figured out what was going on. I mean, people call me, you know, call me because I have the authority in that document to act on her behalf. And that way it's empowering.
Keith Hosey Yes, and in the way that you know what her wishes are, too, more than a court does, for sure. Let's move on to employment, because one of the reasons I wanted you on here, Carolyn, is sometimes I feel like I am speaking German to a French audience, and Carissa's laughing over there, because she's heard me tirade about this before a hundred times, I'm sure, but, you know, there are so many obstacles for a person with a disability to go out and get a competitive, integrated job, and we don't need to make the unknown another one, and so that's why I'm so grateful for the Work Incentive Planning Assistance Grants out of Social Security. Center for Accessible Living is one of the recipients in Kentucky. Goodwill is the other recipient in Kentucky. They cover all 120 counties. And they are able to sit down with someone and tell them exactly how their job will affect their personal benefits. And while I'm thinking about it, I do want to mention DB 101—
Carolyn Wheeler Thank you, Keith. I was going to if you didn't. Yes.
Keith Hosey So there is a self-serve website out there that is specific to Kentucky Benefits that Voc Rehab and possibly other partners paid to get customized for Kentucky Benefits. And so people can go on there and they can register an account or they can put general information in and they can figure that out. But the great thing about the WIPA project is they sit down one-on-one with a person and it may be over the phone or video. But it's one-on-one and they're talking about that person's benefits. And for the many years that, well, in continuing to this day of working in kind of the workforce realm for individuals with disabilities, I never want to have someone lose money they didn't think they weren't going to lose. If I lose $5, I'm upset.— Carissa Johnson I say, too, not only did I cut my teeth on employment, I'm a product of this. When I started thinking about going to work, I was on SSI and scared out of my mind because of the health benefit, most of all. But whether or not I'd be able to work, a lot of people told me no. A WIPA coordinator told me yes and was able to explain that to me. So that is so important, so empowering. Keith Hosey And I mean, yeah, you are a testament to the way the system can work to benefit people. Because guess what? Carissa is a homeowner and a mother and a full-time branch manager of a nonprofit agency. You took advantage of that. And, you know, that progress, people don't understand. And Carolyn, you alluded to it earlier when you said, and then, you know, once you work out an SSI, you get on SSDI. And that's your own work record there, too. And so that's based on the work that you had put into the system. And it's such a big jump. Obviously, Medicaid and SSI are true welfare in the term, in the sense that they are the payer of last resort. For individuals who cannot pay. And once you bridge that gap and you start getting that SSDI, then Carissa, you didn't have to worry about how much money you had in the bank.
Carissa Johnson No, I didn't. It actually saved me when I took a sabbatical from the job for a little bit. I was able to go right back on my benefit and look for another job. So there is so many different avenues for folks.
Keith Hosey That's right. I forgot you took advantage of expedited reinstatement. Carissa Johnson I sure did.
Keith Hosey Yep. Fantastic. Yeah. Yeah. So I just, I don't, I don't get, sometimes I feel like I'm talking to walls when I talk about this. And it's, unfortunately, sometimes it's the people who are providing employment services to the disabled individuals. And they may have preconceived notions that this person doesn't want to work off their benefits, for sure. But that's not always the case either.
Carolyn Wheeler Right. Well, and, you know, Keith, people is. Well, at least Clinton and Linda, I mean, they both kept their benefits and worked. I mean, it's not it's not an either or it's really not an either or there's I mean, you can work your way off benefits, but you can also work and still maintain your benefits. Again, depending on perhaps how much you can work, what kind of work you can do. But so, again, I think help is that people can just can be I don't know if we're using the word be curious, but just be interested, be interested. And thinking about what how you'd like your life to be better. I mean, money does play a part. It just does, you know, in terms of where you can live or where you can what you can do with your free time. And just work also brings lots of other benefits. I'm assuming we would all agree with that. It's make friends, socialization. Absolutely. Yeah. So there's so many benefits. And then to the stable account, you know, Keith, to your point about that. So again, I don't know if our listeners are just here in Kentucky or if they're outside of Kentucky, but you can go to the ABLE NRC, National Resource Center on ABLE accounts, find out about your state. But this allows you to save up to, you can actually save up to $18,000 a year and more if you work, but you could have one ABLE account, multiple people could contribute, and then you can use it for qualified disability expenses. Like maybe that modified van or that much better wheelchair or for Linda, it's her transition lenses, you know, that help her to be able to function better. So there's no longer the reason of, you know, that I can't earn too much because then I can't, I'll have too much in the bank. I mean, we just have lots of, I guess, savings vehicles, opportunities for people to really have a better life. And I will just add, when you work, you're paying payroll taxes. And so you're really, that money out of your pay. Check is really going toward your social security account. So when you, if you go, if you're on SSDI, actually, you'll get a raise at some point in your SSDI payment. And then when, yeah, so, I mean, it's just all good. It's just all, it's just all, it's just all good. And then Linda gets a very substantial retirement payment from her own work record. She worked a long time, you know. And so she's living large compared to if she'd never worked, which is more like Gary, the He may be getting a benefit off of a parent's work record, but, you know, SSI is going to be $967 next month, starting in 2025. And that sounds like a lot of money, but no.
Keith Hosey It's certainly, no, not at all.
Carolyn Wheeler Not at all.
Keith Hosey And people do amazing things on that budget.
Carolyn Wheeler That's exactly right.
Keith Hosey But, you know. And when I talk about it, I say, do you want more or less? Because if you work, we can have a path to more, or we can stay where you're not allowed to have more than $2,000 in the bank. And thankfully, these ABLE accounts are allowing for that because the crazy thing about people with disabilities is we have unexpected medical incidences. And I don't know many that are less than $2,000.
Carolyn Wheeler Absolutely. And actually, you could have an ABLE account even if you have a qualifying disability before 26. And Keith, you know, that increases to 46 January 1st of 2026. Yes, sir. And that was in large part because of veterans. So you could have the account, even if you're not on SSI or SSDI, and the money grows tax-free. So what's not to like about that, as long as you use it for qualified disability expenses? So it's a game changer. But again, to me, if you are getting $967 a month, you don't have any money to put in one unless you go to work.
Keith Hosey Yeah, I mean, in that financial, and you alluded earlier, Carolyn, that, you know, there are so many benefits to work like socialization and, you know, having the extra money to live in maybe a nicer place. You know, employment, along with neighborhood and some of those other things you mentioned, are all social determinants of health. And so when you look at employment, I kind of call it a super social determinant because it touches so many of the other social determinants of health. And there's a lot more data coming out now around the actual medical benefits of employment. You know, there have been a number of studies now that show that individuals who are employed utilize the medical system less. They go to the ER less. They have less inpatient stays. Physical and mental. You know, the higher global functioning, you know, and just the last probably 10 to 15 years, the literature has exploded over the physical and psychological benefits of employment as well. So it really, it's not just that paycheck. It's all those other things, too, that we get from going to work. And, you know, I think your question, you know, what would it? Kind of what would it look like if you did? You know, that really gets people's juices going. I think, you know, just that really gets kind of the wheels grinding. What would it look like if I went?—
Carolyn Wheeler What would it look like? And social security actually puts out a really good booklet. You can get it off their website. It's called, Working While Disabled: How We Can Help. You can get it off ssa.gov and literally in like about three pages, it will just tell you if you're on SSDI, here are your work incentives like expedited reinstatement that we talked about. If you're on SSI, this is how it works. So actually believe it or not, social security, you know, it's not, you can, again, you can go to work, still maintain your benefit. You can go to work and work your way off of a benefit. And for people on SSI, they could actually have their SSI payment go to zero and still maintain eligibility for Medicaid because of an incredible work incentive, but you'll need an ABLE account because you've got to have somewhere to put all that money because unless you can spend it all. [chuckle] So golly, life could be good. Life could just really be, life could be better.
Keith Hosey And I truly believe for almost everyone, some amount of work would be beneficial. You know, I've been hard pressed for anyone to present someone that wouldn't benefit from work, but I never say never. So I just I think that there are a lot of opportunities now, especially with those ABLE accounts for people to go out and to try work. And it really is. It's trying, you know, the work incentives that we've been talking about are really kind of a try it before you buy it for working for individuals with disabilities. There are these safety nets. You have, you know, extended period of eligibility is a safety net. And, you know, trial work months are a safety net and all these safety nets so that people can go out and try, have the dignity to fail and try again. And and and then decide on what level, because, like you said, you can work and keep your benefits, too. So it's not all or nothing. You're right. There are a lot of people I know that work part time jobs and also have SSDI and are very happy with their work-life balance.
Carolyn Wheeler That's right.
Carolyn Wheeler That's a good way to put it, Keith. Yes, you can have work-life balance and you can maintain critical benefits, maintain critical health insurance and still have more money. Because again, in general, most people's SSDI benefit is probably not going to be enough to get them the life they would like to have. I think people may have a misconception that it's based on, I don't know, the severity of their disability. Well, no, it's based on your contributions through working or a parent. And again, you're paying yourself. When you work, your payroll taxes are going back toward your Social Security account. So it's just, you can tell I get excited about it. So I just appreciate the work that you all do to encourage, to support employment. to just really help people to cast a, you know, maybe a little bit bigger vision for their lives.
Keith Hosey I think I love that, “a little bit bigger vision for their lives.” You know, in my day job, I work partially with the homeless population and I often have case managers in meetings say, you know, Mr. So-and-so, you know, we got him an apartment and we got him a couch and a bed and and he's just really bored. And so he drinks every day. Well, have you thought about work? That's something that could take up a large part of the day, maybe. And just that, you know, we got him. There's a roof over his head. So what else would this person need in life? And we've got to get out of that. I think was it one of the President Bush's said the slow segregation of low expectations. I believe it might have been Herbert Walker.
Carolyn Wheeler Well, probably because he was there when the ADA was signed, wasn't he? He was there when the ADA was signed. So somebody may have written that for him, Keith, but he may have said it. But absolutely. And again, as we know, there are office vocational rehabilitation or there are services to help people to go to work if they want to go to work. And they don't cost anything. There's no charge of the services that the VA provides to people to go to work.
Keith Hosey That's right. VA and voc rehab. I'm a product of the Kentucky State voc rehab system. You know, they helped me financially with my bachelor's degree to a certain extent.
Carissa Johnson I was going to say they still help me with my vehicle, being able to make that accessible so that I'm able to drive back and forth to work. And I've been working for about 20 years.
Keith Hosey You know, that's a great point. I don't know that a lot of people, even those that are familiar with Voc Rehab, realize that they can help with maintaining employment for individuals as well. So you mentioned your vehicle to get to work. I know some people get other mobility aids or hearing aids to help them better navigate employment. And oftentimes we talk about Voc Rehab as the front door to employment, but they can also sometimes be a support in employment. So thanks for bringing that up. That's awesome. Yeah.
Carissa Johnson Can we talk about or now about another thing that you were involved in to keep the multitude in the beginning because I also utilize this program and I'm very grateful for it. Heart Supported Living. It's a grant for those that don't know that you can apply for anything that would make you more independent, whether that be an ongoing support, like somebody to do your yard work or to what i applied for a couple times and got, which was one-time supports and it can be anything. I'll give you an example with me, one of the times that i got this work was to put a roof on my front porch so i didn't get wet when i was unlocking and locking my door. Really simple thing but expensive. So how did you get involved in that? Let's talk about that.
Carolyn Wheeler Oh, well, that's an interesting story, Carissa. So actually it's named after Jane Hart, Keith, whose daughter is Hannah, but I knew Jane Hart. So Jane was a formidable advocate as a parent, as a parent, and we were, I think at that time, we were just both really frustrated. There was just no movement in terms of expansion of any kind of supports to help people to live in the community. So we thought we'd learn about this. We learned, I don't remember how we heard about it, you all, but it was, we'd heard about supported living. We actually went in some other states and studied it and then decided we'd just, we'd write some legislation. And so I was involved in helping to write the legislation, learned a lot from other states. And it really was, it's always been participant directed, which is what we now have in our home and community-based services. So to your point, Carissa, I mean, you do have to apply, but you have to say what you want. And if you're going to hire people, So there's a very, there's a lot of responsibility on the person or their family who applies, but then it does give you the freedom to do, to hire people and to hopefully make, again, to provide the supports that you need. And we also, because I was involved at that time with helping or to work, working with people, how about working with high schoolers who are deafblind to transition. People who are deafblind typically don't qualify for any of these waivers because the criteria is for someone with an intellectual or developmental disability. Or nursing home level of care. So it was also trying to create a program for people who meet the ADA definition of disability, which I really like about it. So I do wish there was more money, but I'm glad to know it's been helpful to you, Carissa. And a lot of those one-time expenses have, can be life-changing for people, whether it's making a bathroom accessible, building a ramp onto your house for you, assisting with keeping your modified van running. I love that story about a roof over your porch because getting wet or slipping or you're, your wheelchair spinning or whatever, if there's ice, I mean, again, can be— Carissa Johnson Ooh, straight down a ramp.
Carolyn Wheeler Yeah, i mean, So I love hearing some of those stories. So that's how I was just really fortunate. You know, I've known Keith for a really long time. I mean, there's just a community of people in this. I mean, Dave Mathis. I mean, how long have we known Dave Mathis? [chuckle] But just a community of people who really had this shared vision and then do work together to try to make change. So I've been very privileged, very fortunate. So thanks for asking.
Keith Hosey I don't know a better way to end it than what you just said. I also feel very privileged to be involved in a community of advocates who are trying to make a change and continue positive changes here in Kentucky. And I'm glad that you're one of those individuals, Carolyn. I appreciate you and all the work that you do.
Carolyn Wheeler Well, thank you all. I appreciate being with you all this evening.
Kimberly Parsley Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.
Kimberly Parsley Our executive producers are me, Kimberly Parsley, and Dave Mathis.
Kimberly Parsley Our sound engineer is Michael Parsley.
Kimberly Parsley Thanks to Chris Ankin for the use of his song, Change.
Kimberly Parsley Don't forget to follow or subscribe so you never miss an episode.
Kimberly Parsley And please consider leaving a review.
Kimberly Parsley You can find links to our email and social media in the show notes.
Kimberly Parsley Please reach out and let's keep the conversation going.
Kimberly Parsley Thanks, everyone.
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Sam talks with Ryan Creech from the Human Development Institute about his work making digital media accessible to people with all disabilities. They also talk about the Appalachian Assistive Technology Loan Fund, which helps people with disabilities get low or no interest loans for assistive technology.
They discuss Ryan’s chapter in the book, “A Celebration of Family: Stories of Parents with Disabilities. The book is available from Amazon, or try checking it out from your local library. If you can’t borrow it there, ask your librarian about ordering it.
Visit Sam’s podcast, Blabbin’ in the Bluegrass
Thanks to Chris Ankin for use of his song, “Change.”
The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.
Be sure to follow the Advocado Press Facebook page
Visit Moving Forward, the Advocado Press blog.
Send comments and questions to [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
Robotic Voice 00:04 You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability.
Kimberly Parsley 00:12 Welcome to Demand and Disrupt, a disability podcast. I am your host, Kimberly Parsley.
Sam Moore 00:18 And I'm Sam Moore. Happy New Year, Kimberly!
Kimberly Parsley 00:22 Happy New Year, Sam!
Kimberly Parsley 00:23 How was your holiday?
Sam Moore 00:25 Oh, it was great. Both of them, even though I was a little sickly in the middle, but nothing on Christmas Day itself. So I was glad to be able to enjoy that before my little bit of sniffle set in. And now I appear to be on the back end. So, you know, New Year's Day was pretty enjoyable as well. Did you make it up till midnight New Year's Eve, Kimberly?
Kimberly Parsley 00:52 Um, well, I was laying in bed reading. Does that count?
Sam Moore 00:56 Well, at least you were awake. [laughter]
Sam Moore 00:58 So I guess that counts for something.
Kimberly Parsley 01:00 I guess so. Yeah, I guess that counts. [laughter]
Sam Moore 01:04 Too much of a celebratory time not to enjoy those.
Kimberly Parsley 01:08 So did you party hard on New Year's Eve?
Sam Moore 01:11 I went to a hockey game over in Evansville with a buddy of mine. So, I guess, you know, I didn't party hard, but I did party. And, you know, they have indoor fireworks at the conclusion of the game on New Year's Eve always. So, you know, I do enjoy those, although I did hold my ears because, you know, as loud as fireworks are on the outside, they're even louder inside.
Kimberly Parsley 01:42 Wow. Yeah. So is that like, I've never been to a hockey game before. Right. Is there such a thing as like major league hockey and minor league hockey or those?
Sam Moore 01:52 Yes. This is very minor league. [laughter] In fact, it's below, you know, it's below the traditional minor leagues that that people think of. But it's like an independent league almost.
Kimberly Parsley 02:05 Oh, cool! Uh-huh.
Sam Moore 02:07 The Evansville Thunderbolts. But, yeah, as far as major league like the NHL, that's like, you know... Your Nashville Predators, just a little down from you, there, kimberly.
Kimberly Parsley 02:18 Which I have never gone to. Is hockey, I mean, is it hard to follow like for a blind person?
Sam Moore 02:28 Yeah, I mean, it probably, well, it probably would be easier if I were more of a fan. [laughter] I'm more of a football, I'm more of a football, basketball fan, I'll admit. But I can go to a hockey game and have a decent enough time with the refreshments and, you know, the atmosphere and the fireworks afterwards, even though I held my ears. [chuckle] I still got the adrenaline rush and the vibration and things like that.
Kimberly Parsley 02:55 Yeah. You know, a lot of times it's just, it's just being, being in that, being around the stuff, you know, it's not like I don't care. We have here in Bowling Green in the summer, we have the Bowling Green Hot Rods.
Sam Moore 03:10 Oh yeah!
Kimberly Parsley 03:12 I like baseball.
Kimberly Parsley 03:13 I used to watch the Cubs all the time.
Sam Moore 03:16 Oh, you used to be a Cubs fan.
Kimberly Parsley 03:18 Yeah, well, i'm still a Cubs fan. I just don't follow it very much because I just, you know, don't really have time, and so I could not care one whit about what happens on the field, but it is fun just to be around people, be in the stands, you know.
Sam Moore 03:33 Yeah.
Kimberly Parsley 03:34 That kind of thing.
Sam Moore 03:34 Enjoy your hot dogs or your nachos.
Kimberly Parsley 03:38 Yeah. Even a high school football game. When we go to high school football games, I don't care. Well, I care who wins. It's just more interesting to me to be around other people. Talk to people you never have met before, you know, that kind of thing. It's a way to be around other people that you don't really have anything in common with. But you're meeting new people.
Sam Moore 04:05 You're meeting new people and striking up friendships. Let's see, your kids are, Ian goes to, is it Warren Central? Is that where he goes?
Kimberly Parsley 04:15 Nope. He goes to Bowling Green High.
Sam Moore 04:17 He's a purple.
Kimberly Parsley 04:18 He's a purple, yeah. He's a purple and, we go to some of their—my daughter's in the band, so sometimes they have the band do stuff.
Sam Moore 04:31 Oh, sure. And Bowling Green has a great football tradition.
Kimberly Parsley 04:36 I hear, it will be horrible that I don't actually know this, but I think they have just won the state championship.
Sam Moore 04:53 You know, I should know but I couldn't tell ya, if not, I'm sure they were pretty darn close because they're always competitive.
Kimberly Parsley 05:03 Yeah, they either won the state championship or they went to the championship game. Yeah, I don't actually know.
Kimberly Parsley 05:04 I know. Please, please forgive us. I could holler in there and ask my son, but I figured his answer would be something like, bro, I play the cello. [laughter]
Sam Moore 05:14 Like, you didn't know, but yes, the purples, even if they didn't win it they were within striking distance, i'm sure, so they're just always tough. Them and south warren, I know south warren tends to be the you know, the...
Sam Moore 05:31 The team to beat.
Sam Moore 05:32 King of the throne down there these days, but Bowling Green's not far behind them.
Kimberly Parsley 05:36 Yeah, yeah.
Sam Moore 05:36 King of the throne down there these days, but Bowling Green's not far behind them.
Kimberly Parsley 05:37 I don't know. You know, one year, this is funny, it was my New Year's resolution to go to more events like concerts and plays and football games, things like that. And I know what you're saying. And I know what year—
Sam Moore 05:54 Say there's main competitions.
Kimberly Parsley 05:55 Yes, yes, stuff like that. And I know what year that was. The year I made that resolution, it was 2020. [chuckle]
Sam Moore 06:02 2020? [chuckle] Oh, well, you were naturally a bit limited that year in what you should do.
Kimberly Parsley 06:07 So I did not—apologies for my dog...
Sam Moore 06:15 The dog doesn't want to be left out.
Kimberly Parsley 06:15 She does not. She says more trips to the dog park, please.
Sam Moore 06:18 Yes. [laughter] Keep dropping hints.
Kimberly Parsley 06:21 So New Year's resolutions. I know people either love talking about them or hate talking about them. Which camp do you fall into, Sam?
Sam Moore 06:29 I don't hate talking about them. I do rather not enjoy making them because they're a lot harder to keep than they are to make. I know the most common one is naturally to lose weight. That's the one I do hear about more than anything. But, you know, I try to stay in pretty decent shape all the time. I do. Santa Claus, I didn't tell you this, but he he also brought me a new stationary bike because— Kimberly Parsley 07:01 Oh, boy! Sam Moore 07:02 —Because the one I had was kind of on its last leg. You know I try to hit the stationary bike and go nowhere fast a couple times a week. [laughter] So I can at least stay in, you know, fair shape all year to, you know, offset all the junk that I—eat. So, but you know, that's the most common one I hear I know is to, to, to lose weight. It seems like the one you made, if it weren't for 2020, that attending more events would be a lot more doable.
Kimberly Parsley 07:38 Yeah, I mean, I don't make hard ones. I only make them if I really care, you know.
Sam Moore 07:47 Those are the ones that you're more inclined to make them happen because you care about them. [chuckle]
Kimberly Parsley 07:56 Yeah, I mean, this year mine is: stop apologizing all the time, you know. That's the thing that, I think it's a thing. A lot of, a lot of people do is you, you know, something happens, you're like, oh, I'm sorry. You're like, why am I saying I'm sorry? That I didn't, that wasn't my fault.
Sam Moore 08:12 You don't always mean you're sorry when you say it. [laughter]
Kimberly Parsley 08:14 No, no. And a lot of times it's, at least with women it's code for—oh forgive me for taking up space—and you know, that. So that's something I'm gonna try to stop doing and along those lines stop people pleasing because that's kind of, they go along the same lines.
Sam Moore 08:34 Yeah, you know, I'm a people pleaser too, but you can't please everybody. It's impossible.
Kimberly Parsley 08:39 You can't, you can't, but if you're a people pleaser who also has some perfectionism, then man, you're... [chuckle]
Sam Moore 08:46 Yeah, that's [chuckle] I can relate to you on that, though, when you just, you know.
Kimberly Parsley 08:50 Yeah, It's tough.
Sam Moore 08:52 Some people's requests, though, and their expectations just aren't realistic.
Kimberly Parsley 08:58 And yeah, yeah. Now the thing that I do, I set reading goals and they're always fun. I think my reading, yeah, like my reading goal, I love to read. It's like my main hobby. Like I would, I want to, this one I set last year and I, for whatever reason, and I don't even know why I didn't make it was to read all of Charles Dickens novels.
Sam Moore 09:19 All of them!
Kimberly Parsley 09:20 All of them.
Sam Moore 09:20 That's a lofty goal.
Kimberly Parsley 09:21 Yes. Well, i had already read a lot of them, i'd already read a lot of them but i think my mistake was starting with Bleak House.
Sam Moore 09:31 Bleak House. [laughter]
Kimberly Parsley 09:32 If you start with a book called Bleak House, it's really going to turn you off to continuing on. [chuckle]
Sam Moore 09:38 Yeah, that's a rough place to start. [chuckle]
Kimberly Parsley 09:41 So, yes. So I am. So that is a goal resolution of mine. And then also, as you and I have talked about, I think I've even talked about this, on this podcast.
Sam Moore 09:53 On this happy, little platform.
Kimberly Parsley 09:54 Oh, yes, yes. I am relearning Braille. I see. Because of limitations, I have to now I'm just deciding to start from the very beginning and relearn it because I have to use like the side of my thumb because I have some sensitivity issues on my hand, my finger that I used to read Braille on.
Sam Moore 10:11 Well, I've got to admit, that would be an adjustment for me, you know, because I'm like most people. I read Braille primarily with the pointer fingers.
Kimberly Parsley 10:18 Yes. And as did I, as did I. And now I can't feel, I mean, I can feel that there's something there, but I cannot. No, not at all. So I'm having to kind of relearn and that's slow because you know holding your hand the way i have to hold it it's kind of hard on your wrist so i'm trying to do that and my goal is to tackle—get ready for this, y'all—all of the book, Frog and Toad are friends. [chuckle]
Sam Moore 10:46 Frog and Toad. Now that is, Frog and Toad are friends. That's a blast from the past.
Kimberly Parsley 10:51 I know it's some deep work I got going on there.
Sam Moore 10:55 What other books were nuts?
Sam Moore 10:57 There was Frog and Toad All Year.
Kimberly Parsley 10:59 Yes, yes, I've seen that one. A frog and toad together.
Sam Moore 11:03 There were several of them.
Kimberly Parsley 11:04 Yes, yes. And they're adorable and they're cute. But I got frustrated last night and I gave up on Frog and Toad and I'm reading an Elephant and Piggie book.
Sam Moore 11:16 Elephant and Piggie. Ok.
Kimberly Parsley 11:17 Elephant and Piggie, any of those people who have small children, you know Elephant and Piggie, written by Mo Willems, who also wrote the Pigeon books. All the parents or aunts or uncles or whoever grandparents out there, you'll know what I'm talking about.
Sam Moore 11:34 So, yeah, if we just, you know, conquer that first and then and then just get past the frog and toad friendship by the end of the year, you know, that's if we can just tackle the friendship, that's a reasonable resolution.
Kimberly Parsley 11:46 Braille is hard! Braille is hard. Reading is hard. Writing Braille is hard. So.
Sam Moore 11:53 I started learning in kindergarten and I didn't, I was too young to really think about how hard it was, but I guess it was probably three or four years before I learned the full Braille code, you know.
Kimberly Parsley 12:07 Yes, but I mean, you could probably still, I mean, you may have to practice a little bit, but you could probably pick it up since you started so young, you could probably still pick it up.
Sam Moore 12:15 Oh, yeah. Like I said, I still read it a fair amount, although it's, you know, there's new renditions of Braille, shall we say, that have been adapted in recent years.
Kimberly Parsley 12:27 There are, that's a whole debate in the blind community.
Sam Moore 12:27 I would have to brush up on people.
Kimberly Parsley 12:29 People will choose sides over UEB, Unified English Braille for or against.
Kimberly Parsley 12:36 I'm telling you, it'll come to fisticuffs is what happened.
Sam Moore 12:39 You know some people feel strongly enough about it to like get in the ring and and and fine [laughter]
Kimberly Parsley 12:49 They might, I think they might. I think people have opinions, they really do.
Sam Moore 12:49 But speaking of books, Kimberly, people should know that here, in a few weeks, the tables will be turned and you will be a special guest on my Blabbing in the Bluegrass podcast.
Kimberly Parsley 13:02 I will. I will. I'm looking forward to it. Go easy on me, Sam.
Sam Moore 13:08 No promises on that.
Kimberly Parsley 13:09 Looking forward to that.
Kimberly Parsley 13:10 You're going to ask me all about my former career as a romance writer, correct?
Sam Moore 13:15 Yes, Kimberly was a writer in her past time, and she and a friend of hers wrote romance novels, among a few other things that we will dabble in, and then we'll even tease a few stuff that's not out there currently.
Kimberly Parsley 13:32 That's right. That's right. I'm looking. We're not going to spoil it here. People have to go listen. We'll put a link to Sam's podcast in the show notes.
Sam Moore 13:42 You will have to listen, but it will definitely be worth listening to. We can assure you of that.
Kimberly Parsley 13:49 Well, I hope so. I'm looking forward to it.
Sam Moore 13:53 It's going to be fun.
Kimberly Parsley 13:55 It absolutely will. i think so. Lots of stuff coming up, lots of stuff. I wanted to ask our listeners, what they had in mind for next year? I've been kicking around some ideas, and I wonder if people would be interested in lots of books about disability come out. And I do love to read. So I wonder if people would be interested in us doing a book club. You know, we can do it on Facebook or Discord or just whatever. Just so if that is interesting to anybody, we could do it over Zoom. Well, if that's something you all think you might want to do, let me know before I pour a lot of time into, you know, figuring that out. Let me know if that's something you might like. You can get onto our Facebook at the Advocado Press Facebook page. And we have a link to that in the show notes. Always, always, the email is [email protected]. So tell me what you think about that. Tell me what other ideas people have. Sam, you got ideas. You've always got ideas.
Sam Moore 15:03 Oh, well, yeah, no, I try to make sure that my wheels are at least halfway spinning on a 24-7 basis. But yes, I like your thought there with the books and, you know, you know, books centered around disabilities. Perhaps we can have some authors of those well-written and insightful books on the show.
Kimberly Parsley 15:24 Wouldn't that be great?
Sam Moore 15:25 In the weeks and months to come here and like you said listener feedback is always deeply appreciated because there's things that maybe y'all think about that we don't necessarily so don't be shy about sending those social media messages and email addresses. No, well—you've got the email address—the emails.
Kimberly Parsley 15:50 Right. Yes. Yes. We would. I would love to hear from people.
Sam Moore 15:55 Yeah, anything around the disabilities and those with special stories who have disabilities and they're. Advocacy efforts. Let us know. If you're one of those people, don't be shy. Don't be bashful. Let us know about yourself. [chuckle]
Kimberly Parsley 16:10 Yeah. Oh, absolutely. I have a couple of people email me the subject of one of our podcast interviews. It's Jerry Wheatley. He's in the podcast episode, My Blindness Mentor.
Sam Moore 16:19 Oh, yes.
Kimberly Parsley 16:22 And he emails. Thanks, Jerry. He emails regularly and also Rick Broderick. Also, yes, yes, he emails me. So I do love to get the emails. I really do or messages in any form. I appreciate it so much.
Sam Moore 16:40 Or you can call Kimberly at 270-
Kimberly Parsley 16:42 No, no, you can't call me. [chuckle]
Sam Moore 16:43 Only kidding, I wasn't going to give out the rest of the number, don't worry. [chuckle] I just wanted to make your heart skip a few beats.
Kimberly Parsley 16:52 Because then people would call. [laughter]
Sam Moore 16:55 They would, wouldn't they? [laughter]
Kimberly Parsley 16:56 It would be fine because I don't really answer my phone. [laughter]
Sam Moore 17:01 Oh, mercy, but yes, we don't bite, Pete. So send us your ideas. We definitely always appreciate that.
Kimberly Parsley 17:10 Absolutely. Absolutely. So one of our friends of the podcast is the person you interviewed. So tell us about that.
Sam Moore 17:18 That's right. Ryan Creech is his name. He works for HDI, Human Development Institute, which is actually affiliated with the University of Kentucky. And anyway, he deals with accessible digital media and making that possible for people not only with blindness, but with other disabilities as well. So, you know, he helps to make websites, per se, and PDF files, things that tend to cause issues for us as we try to read them. He works on making them readable. That's part of his job, a major part of his job duty. So, you know, PDF files, as we know, Kimberly, can be pretty, at least in years past, they were. You know, quite contrary. They're much improved now. But they still, you know, they still pose issues from time to time. And it's great to know that there are people like Ryan Creech to help us work around those.
Kimberly Parsley 18:30 Well, excellent. I can't wait to hear your interview. Ryan is a very kind, helpful, delightful person. He's hilarious to talk with. So I can't wait to hear your interview that you did with Ryan Creech.
Sam Moore 18:45 Enjoy, peeps.
Sam Moore 18:50 Well, HDI has opened up many doors for many people, and here with me today, I am so pleased to be joined by a specialist in the realm of accessible digital media. So what exactly is that, and how exactly does that become a reality for those with various disabilities, not just blindness or visual impairments, but others as well. We'll talk about that and much, much more with the specialist himself who works for We will tell you what that stands for. It is actually a part of the University of Kentucky, and so we'll talk about how he ended up there, the career pathway that he took there, also the disability he has and how he has managed to overcome that. Joining me directly via Zoom from Rockcastle County, Kentucky, about an hour roughly southeast of Lexington, let's hear it for Mr. Ryan Creech.
Ryan Creech 20:00 Hey, Sam! It's great to be here.
Sam Moore 20:02 It's great to be with you, sir. You are, you know, in a great area. You said it was in the middle of nothing, but you do have Renfro Valley basically at your doorstep. So you're never far from great, great music. And are you a lifelong Rockcastle County in there, Ryan?
Ryan Creech 20:22 No, no, we've been here for, see, we moved here in 2017, live on about 40 acres where my mother-in-law grew up, and got a bunch of cows and chickens, and we have a good time out here. I like being in the middle of nowhere, it's peaceful.
Sam Moore 20:35 All right. You don't have any sort of vision loss whatsoever, but an accident, I know, caused you to be paralyzed, but you've dealt with that very successfully ever since. So tell us a little bit about what happened to you and how you bounced back and sort of made the best of it, if you will.
Ryan Creech 21:02 Of course, sure. So, yeah, back in 2007, that was the year that I graduated from, by then it was the University of the Cumberlands, with my undergraduate degree. and when I graduated, my stepdad came to visit to see graduation, and it had been a couple of years since we'd connected. He's my ex-stepdad, and he said, "Well, why don't you come and visit me in North Carolina?" So, that's what I decided to do for the summer. So, a couple of weeks after I graduated, I went to visit, and the first day I was there, we decided to go out to an off-road track and ride ATVs. I'd never been on one before, and pretty quickly after we got there, I managed to wreck really, really good. So, yeah, so I kind of jumped up airborne and slammed into the ground, and the four-wheeler bounced up and down on me a couple of times. It broke my back. I have a T6, T7 spinal cord injury, which is about the bottom of my ribcage down, I'm paralyzed. I also had a broken sternum and some various other small injuries, but yeah, so I had to be taken to the hospital and then get on the helicopter and it was a big thing, it was very, very, traumatic.
Sam Moore 22:26 No doubt. How long were you in the hospital?
Ryan Creech 22:30 Let's see. I spent about a week in the hospital in North Carolina, and then my family paid an exorbitant amount of money to have me flown back to Ohio so that I would be closer to my parents and grandparents. And so I then went to the Drake Center in Cincinnati for about two months and then moved in with my parents and did outpatient therapy for about a year before I was able to move back to Kentucky.
Sam Moore 23:04 Oh, goodness. So it wasn't a quick bounce back, but it was a successful one. And all the all the hard work and determination definitely paid off.And you are in a wheelchair, but that's opened up a number of doors for you, though. And, you know, sort of made it allow you to be relatively mobile despite your accident.
Ryan Creech 23:30 Yeah. And, you know, and it actually it's what brought me into the assistive technology realm and into the ultimately into the kind of accessible media stuff that I do now. I got a job working for the Cooperative Extension Service in Whitley County where I lived. And through that experience, I got busy doing a lot of social media and outreach and marketing type of stuff for them, web design. And they connected me with the Kentucky AgrAbility program, which unfortunately lost their grant funding and has shuttered since then. But Kentucky AgrAbility was an organization that was dedicated to helping farmers with disabilities to continue farming. And so I got teamed up with the Kentucky AgrAbility project, and that was really my first exposure to kind of helping connect people with services or devices to make their lives better and, you know, kind of help them overcome the limitations from their disabilities.
Sam Moore 24:43 Okay, so that was your first taste of the realm of assistive technology.
Ryan Creech 24:51 Yeah. And so I really don't have an education in that specifically, but it's kind of a lived experience education. You know, I have relied so much on assistive technology. As you mentioned, I use a wheelchair and that's my entire mobility. Like I am, I am completely, you know, reliant on that to help, but it does give me so much freedom and opens doors and things. And so, you know, kind of bringing in that and my own personal. Just trying to live independently in the world is where I've learned a lot of the practical applications.
Sam Moore 25:33 See, so assistive technology is one of those things that you've basically learned through experience through the school of hard knocks pretty much. [chuckle]
Ryan Creech 25:42 Right, right.
Sam Moore 25:43 Absolutely. So you went to University of Cumberland. You said that assistive technology wasn't where your education fell exactly. What did you study at the University of Cumberland?
Ryan Creech 25:57 When I got there, I was majoring, I was an English major and planning to teach high school. So I was an English, um, secondary education major with a minor in computer science. Five years later, I graduated with no education degree. I did everything but student teach, but I graduated with a major in English, and a second major in communication arts, which, so that was a lot like communication theory, but also, for me, at least it was a big focus on TV and radio production. So sort of a campus radio station and, and, and worked on the TV stations.
Sam Moore 26:40 Okay, so you did a little radio and TV there, and it was sort of a mixed bag of audio and visuals for you. [chuckle]
Ryan Creech 26:46 Yeah, right, right.
Sam Moore 26:49 At the University of Cumberland. You did on-campus radio, and that I know was fun. Did you ever do any commercial radio after that?
Ryan Creech 27:02 I did just a little bit like very, very part time for a local radio station there in Williamsburg. But mostly I did like, I started doing kind of like event audio and like event lighting, those sorts of things. I was really big. Also, as part of that arts major was really big into technical theater stuff. So doing sound design and lighting design and that kind of work. And that's a little bit more of what I was doing on the side rather than commercial radio.
Sam Moore 27:37 Okay, so you got a little bit of a commercial radio under your belt to supplement the other stuff on your radio or on your resume, I should say. [chuckle]
Ryan Creech 27:49 There you go.
Sam Moore 27:49 So you ended up becoming an assistive technologist with OVR. I'm guessing you landed there right after or shortly after your stint at Kentucky AgrAbility, correct?
Ryan Creech 28:10 Yeah, that's right. So Kentucky AgrAbility, I started working for them, and that was around 2009 or so. And then in 2010, AgrAbility paid for my wife and I to attend the No Barriers Conference in Colorado and No Barriers is an adaptive recreation conference. And so they bring in people from all over the world and you can just try out all sorts of adaptive recreation and there are seminars on planning building adaptive rec programs and, you know, funding and that kind of stuff yeah so it was a really interesting experience and one day the AgrAbility program director and i were playing hookies from the conference. We decided we wanted to go up to Lake Granby and kind of see some of the Rocky Mountain National Park out there. So, he and I went and we also had with us the director of the assistive technology program at folk rehab. She was attending the conference along with us. And while we were up on top of the mountain at the visitor center, she got a call that the assistive technology specialist that was in my area where i lived, was quitting, she was leaving. She was living out of state. And so, she got the phone call, and she looked at me, and she said, "Have you ever considered assistive technology as a job?" And I was like, "I don't know what that is, but I'd be willing to learn more about, I'll give it a shot."
Sam Moore 29:55 I'll give it a shot. [laughter]
Ryan Creech 29:57 Yeah, yeah. So from there, I mean, we kind of went from there and I, you know, I did some more like talking with her and learned that some of the skills that I had, some of the technology stuff, some of the biggest thing for doing work like that is you have to be able to analyze processes, think critically, good problem solving skills. And I had built those not knowing that they were useful in the assistive technology field, but ultimately I interviewed and there were several really great candidates and they decided that it was worth taking me on, not because I had extensive assistive technology background, but because I had lots of other skills that could be very useful and kind of generalized.
Sam Moore 30:48 That you had honed in your previous position. So how about that for timing, so here you are in Colorado on top of the mountain. You meet this lady, she gets a call, you know, it's just all about being in the right place at the right time, isn't it? [laughter]
Ryan Creech 31:06 Exactly, yeah.
Sam Moore 31:08 For sure. Absolutely. Well, that's awesome. Now, a rehabilitation technologist is what you became at Voc Rehab. And that title is not one that a handful of our listeners are possibly familiar with. So why don't you describe, and I know you've sort of alluded to it already, but let's expand a little more on the purpose of this post that you held with OVR along with the primary clientele with whom you worked.
Ryan Creech 31:44 Sure, sure. So yeah, so I got hired on in 2011. And I was actually hired by the University of Kentucky and the Human Development Institute, HDI. And so they were paying my salary. And then, I worked for the Voc Rehab Office as a contract. So HDI has a contract with Vocational Rehabilitation to provide them with knowledgeable assistive technology or rehabilitation technology specialists. And so that was where I was. So I was technically an employee of UK, but all of my day-to-day work was in VR.
Sam Moore 32:28 Yeah, UK was paying you, but your duties were an OVR. [laughter]
Ryan Creech 32:34 That's right. That's right. And so, but yeah, so assistive technology or rehabilitation technology, they're kind of synonymous. And basically, if you think about technology, technology makes life easier for everyone, right? Like our cell phones or even cars, I wear eyeglasses, you know, those are kind of technology things that make life easier for everybody. But assistive technology or rehabilitative technology are products, services, techniques that make things possible for someone with a disability. So we think of people with disabilities as having functional limitations. So because of your disability, there are tasks that you want to do that you are not able to do. So assistive technology is anything. It can be something high tech, but it could also be something super low tech that helps bridge that gap between what you want to do and what you are physically or mentally capable of doing.
Sam Moore 33:37 Right. Yeah. So you served individuals with all sorts of different disabilities, no doubt.
Ryan Creech 33:46 Yes, yes. Obviously, we did a lot of work with blind and low vision folks. And when I started at VR, there were two separate agencies. We had the Office for the Blind, and then we had the Office of Vocational Rehabilitation. And during my tenure there, we combined the two into just the Office of Vocational Rehabilitation. And we did have technologists within our group that were more specialized for folks with visual impairments. But we also, those of us who were kind of, you know, from the VR side, kind of the more general side, did deal with visual impairments as well. And so, but yeah, so I mean, we dealt with everybody from visual impairments to physical impairments. We worked with folks who were going to jobs or going to be self-employed, going to school to kind of work on their skills to get into a vocation. So yeah, it was a wide variety of people and a wide variety of circumstances. And it was just a lot of fun because you never knew day to day what you were going to encounter or what sorts of problems might
Sam Moore 35:06 No. No two days were alike, were they? [chuckle]
Ryan Creech 35:09 Right, right. There were so many, you know, one of the great things about working with people to do accommodations for them on the job is that you get to visit their job site, you know, you get to kind of try to understand the context around their job and what their specific job duties are, and then kind of the analytical part kicks in as you try to break down that job into specific tasks. that, you know, are challenging and then how can we overcome the challenges so that you can be successful and do the job that you want to do.
Sam Moore 35:46 Yeah. You're figuring out how to assist them based on what you learned from them. And you're basically getting to know them in the process, which is pretty fun too. So you left OVR to pursue an opportunity with HDI who you were technically with anyway but you're more so with now. And so before we discuss your area of specialization there, why don't you tell us a little bit about it? You said that HDI stands for Human Developmental Institute. So give us some insight on the commendable services offered by this organization.
Ryan Creech 36:31 Sure, sure. So HDI, or the Human Development Institute, is a department at the University of Kentucky. We fall under the vice president of research and kind of our entire reason for being is that we just house a whole lot of different research projects. We are a university center on developmental disabilities, which means a lot of the research we do and the education programs that we have is around providing supports for folks with developmental disabilities. But there are a lot of programs that are housed within HDI, including Child Care Aware, which trains child care providers across the state, especially in dealing with children with disabilities. We do a lot of work with vocational rehabilitation and other, you know, similar organizations. Supported employment is a big thing. And also, Kind of academic supports for our students with developmental disabilities across the Commonwealth. So HDI, they have their hands in a little bit of everything. A lot of what we do is funded through grants, federal or state government grants, as well as contracts. And so, yeah, most likely anyone who's worked in a social service capacity has been involved with HDI at some point.
Sam Moore 38:03 Your post at HDI, Ryan, is centered around the fascinating specialization of accessible digital media. So before we get to the nuts and bolts of how that happens, why don't you give us a basic feel for the concept of accessible digital media?
Ryan Creech 38:26 Okay, sure. So what we're talking about is accessible ICT is what they, is what it's officially called, but it's Information and Communication Technology. So that can be anything from Word documents to emails to web pages, anything that is digital that you share with the public is kind of what we're talking about. And so when you have a document, whether that's a web page, whether it's a flyer advertising your podcast, that's a PDF, you know, there is kind of the visual perceptible version of that. And then there's also an underlying structure, and it gets read by assistive technology, whether that's a screen reader, whether it's just a person using their computer, whether it's someone accessing it on a cell phone, whenever technology interacts with that item, we want to make sure that no matter how our users get at it, that they are able to perceive it and draw the information and interact with it. in the same way that you know a user without any disabilities would. It's basically, It's bringing that universal design aspect into your electronic media so that you can make sure that no matter what someone's abilities are, that they're able to use your content.
Sam Moore 39:50 Well, and it's great that we have people like yourself to specialize in that because I am a longtime JAWS user, which for those of you don't know, of course, that is a screen reader that's highly popular among the blind and visually impaired community. And I can tell you that in years past, PDFs have been pretty contrary with JAWS, but we've come a long way in recent years, haven't we, sir?
Ryan Creech 40:18 Absolutely, yeah. I believe it was 2007 they first released a draft of the PDF specs to the public, and from then we've developed what's called the PDF Universal Access Standard. So basically we have a set of rules that make a PDF really accessible to a screen reader user, a JAWS user, or someone who is using, say, a Braille, a refreshable Braille display, those kinds of things. We want to make sure that our content is built so that no matter which way you get to it, that you can get it to read in JAWS or get it to output in a way that you can.
Sam Moore 41:07 Yeah, well, it's great that we have that standard so that, you know, PDFs are, you know, situated so that they're inclusive for those. using JAWS screen readers. Now, let's discuss further the means by which you make accessible digital media a reality for those with vision impairments. We touched a little bit on PDFs, but why don't, let's talk about other platforms that folks with visual impairments often find themselves needing to use and sort of the steps you take to make those platforms usable.
Ryan Creech 41:48 Sure. Well, you know, to kind of, as, again, another way of introducing, the World Wide Web Consortium has developed what are called the Web Content Accessibility Guidelines, or WCAG guidelines.
Sam Moore 42:06 WCAG, okay.
Ryan Creech 42:07 Yeah, WCAG. And so WCAG is like an international standard that kind of defines what accessible media looks like, okay, and so it's based around four basic principles and they're called the four principles P-O-U-R is an acronym that stands for perceivable so your content has to be, you know, available to the senses to perceive so you know it's got to either be like there's got to be like a visual component or an audio component, you know, your visitors have to be able to perceive the information. It's got to be operable. So in order to be accessible, if you have a web form that people can fill out then it has to be operable for people who are listening to it with JAWS, right. So if you're only using your keyboard to navigate it you have to be able to fill in the form, if you can only use your mouse to operate it you have to be able to fill in the form, if you're using voice like text like speech to text input on your cell phone you have to be able to fill it in the form. It's got to be understandable so when we say something's understandable we mean that we're using common patterns, right, so that people are able to predict and expect what's going to happen next. So if i click the next button at the bottom of that form then i should expect that i'm going to go to another page of form information, right, right. And then it's got to be robust and so when we say robust that's kind of the stuff that we're talking about when you're using a screen reader, when you're using a voice to text, it's got to be able to interact with whatever manner of assistive technology or tool that your users are using to access the site.
Sam Moore 43:58 Okay, so perceivable, operable, understandable, and robust. Those are the four key words, sort of buzzwords.
Ryan Creech 44:09 Right, right. And so accessible documents are documents that basically apply those principles to make sure that the information is available for everyone.
Sam Moore 44:21 Okay, so that, you know, by determining the extent to which they are congruent with each of those four buzzwords and meet that criteria, that's how you determine whether or not a document is accessible. So obviously that's important for those with blindness or, you know, vision limitations of any kind. What other types of disabilities do you attempt to cater to and take into account when you're, you know, designing this special accessible digital media and making it useful to others in need?
Ryan Creech 45:06 Okay, sure. So, you know, you've got, like you mentioned, the visual impairments, whether it's total blindness, whether it's color blindness, even. So, you know, when you're designing a web page or whatever, you want to make sure you're not using only color to convey information. More than 99% of folks who are affected by color blindness have red-green color blindness. So, if you have a bar chart in your document that has red and green or red and blue bars next to each other, those folks would have a lot of trouble differentiating between those lines, those bars. So, you want to add a pattern or something to it in addition to the color, so you're not just using color to convey information. So it could be someone with a cognitive disability. So it could be something like dyslexia. So to help someone with dyslexia better understand stuff, you want to make sure that there's space between the lines if you've got text so that it's easy to follow along to the next line without losing your place. And you also want to make sure that you're using fonts that are readable and that are sized appropriately. And you want to make sure that you're using plain language. So not using a bunch of jargon or, you know, big confusing words that you don't have run on sentences that, you know, you need a degree in English to decipher what they mean. So those are important considerations for folks with kind of the cognitive impairments, and then also folks with hearing, whether it's a hearing loss or complete deafness, you want to make sure that if you're providing content that is, like if you're doing a YouTube video or a podcast, you want to make sure that you have a transcript, right? And you want to make sure that you have closed captioning so that people who are not able to actually hear it can still get the same experience of the information.
Sam Moore 47:21 See, so there's a wide array of folks with a wide array of different types of disabilities that you strive to cater to when you're making this, you know, this type of—
Ryan Creech 47:33 Even—I've left one out—even so, more of the like physical impairment. So I mentioned earlier like having an operable website that you can use if you can only use a keyboard or if you can only use a mouse or if you have someone who is, say, using an eye gaze system, which uses a camera to track your eyes and see where you're looking on the screen. If you have a website, let's say you have like an app that you've built and in order to use features of the app, you have to press a keyboard shortcut that's like, Ctrl+Alt+Shift+W+X, you know, like if you have to press that many keys at once, someone who is not even able to use the keyboard or who only has one hand to use the keyboard would have a lot of trouble doing a super complicated. Keyboard stroke.
Sam Moore 48:26 Key combination, yeah.
Ryan Creech 48:28 Yeah, yeah. So you have to kind of take that into account as well.
Sam Moore 48:32 Sure. So, you know, there's a lot of things, a lot of disabilities that you have to take into account when you're, you know, trying to make these platforms accessible. But that's a very important role and kudos to you for your work in that regard. Now, I'm switching gears a little bit here, Ryan, to supplement your gig at the Human Development Institute, which you work from home, by the way, there in Rockcastle County. You are also on the board of directors for the Apple Action Assistive Technology Loan Fund. Bit of a mouthful there. But anyway, this loan fund has, it's definitely been a lifesaver to many Kentuckians. And I know my partner, Kimberly, did a show on that a while back with a special guest that, you know, details the loan fund in depth. But why don't you, since you're on the board, sir, shed some light on the primary purpose of this fund, along with the eligibility requirements that beneficiaries must meet.
Ryan Creech 49:46 Of course, you know, and so one of the things that you have to consider with the field of assistive technology is, you know, how to access how to pay for these devices and get them into people's hands. In Kentucky, for a long time, we've had the Kentucky Assistive Technology Loan Corporation or KATLC, which has done a great job of providing low interest, sometimes no interest loans for Kentuckians to be able to purchase the assistive technology that they need to kind of improve their quality of life. But unfortunately, right around the time of the beginning of the pandemic. KATLC lost their lending partner. And so they've not been able to provide any loans whatsoever. And so it's kind of left a hole in Kentucky. There are definitely other funding sources. And we can talk about, you know, like the CATS network and kind of their funding guide that they put out that can connect you with grant programs and loans and resources. But KATLC attempts, or I'm sorry, the Appalachian Assistive Technology Loan Fund or the AATLF tries to fill in some of that gap by making loans up to $7,000 for the purchase of assistive technology. It's open to people of all income levels, all ages, all disabilities or health conditions, and in all parts of Kentucky. So basically, all you have to do is have a willingness and ability to repay the loan, and you can apply for it. So anything from $100 up to $7,000 is available through AATLF, and all you have to do is just kind of apply for it. So they'll do kind of a credit check and see what your credit score is, and if the loan is under a certain amount, then it can get approved by just the underwriters. And then if it's over a certain threshold, then it also goes to the board, and the board members kind of review it and then decide whether the credit risk is appropriate. The whole point is to provide no interest and no fee loans to help disabled Kentuckians, sorry, Kentuckians with disabilities to be more independent, be more productive, and have just a better quality of life.
Sam Moore 52:39 Well, it's great that it's so flexible, you know, anything from $100,000 up to $7,000, you know, they can apply for loans to cover those costs. As long as they're, you know, agreeable to pay those loans back, interest-free, of course, but pay those loans back in a reasonable timeframe, but do you know about the amount of time that it's expected or hoped that they're able to pay back those loans, Ryan?
Ryan Creech 53:12 It depends on the particular loan, the amount of the loan, and what the person's capabilities are. One of the great things about it is because ATLF underwrites their own loans, like they are the lender themselves, is that we can set very flexible terms. So it can spread the amount out over years. You know, I'll just throw out, like, so a common request that we get is to help with the purchase of hearing aids. So a set of hearing aids can cost, you know, like a custom molded and adjusted set of hearing aids can easily cost $5,000, $6,000, $7,000. And so being able to take that cost and spread it out over maybe five years, three years, you know, can make it a whole lot more affordable for someone. Especially, if you're on a fixed income, you know, you only have maybe your SSI or SSDI as income or, you know, those kinds of things. Then being able to kind of amortize that out over several years just makes it a lot more accessible to you.
Sam Moore 54:27 So here again, it's flexible in terms of, you know, your income and your situation. So that's another very important aspect of the Apple Action Assistive Technology Loan Fund. I think I'm finally getting decent at saying that. [chuckle] But folks, it's definitely worth taking into account for, you know, regardless of what you need, check into it. And there's a pretty decent chance that this particular fund could be of assistance to you in your situation.
Ryan Creech 54:59 I wanted to mention their website. So if people are interested in applying or learning more about the program, the website is A-A-E-L-F. So again, Appalachian Assistive Technology Loan Fund, A-A-E-L-F.org. And if you just visit that site, then you can find out a little bit more about the program and how everything works. And it's also super easy to apply from there. And you get assigned to basically a caseworker, an underwriter who can take you through the process and help support you along the way.
Sam Moore 55:39 So aatlf.org, and we will link that in the show notes as well to make it even easier for our listeners, Ryan. Now, on another separate note, Kimberly Parsley said that you were actually the focus of a chapter in a book entitled, A Celebration of Family: Stories of Parents with Disabilities. Kimberly said she was quite fascinated by your quest to becoming a parent. So without any huge spoilers, Ryan, for those of us who maybe haven't read the book yet, or at least not that chapter, how about giving us a general gist of your journey and the facets that distinguish it from the normal pathway to parenthood, sir?
Ryan Creech 56:37 Of course. Happy to. So, you know, the book was, you know, kind of a big passion project, especially, you know, it was put together and edited by Dave Mathis and, you know, the Avocado Press, which is kind of a part of the Kentucky's Center for Accessible Living.
Sam Moore 57:00 Sure. That's also the, you know, the origination of our podcast here.
Ryan Creech 57:05 Yeah, yeah, right. And I think that. Have you guys done an episode about the parenting book?
Sam Moore 57:13 You know, Kimberly may have, but if she did, I was not a part of it.
Ryan Creech 57:16 I think it might have been an earlier episode, yeah. So basically the book explores parenting with disabilities, and each chapter was written by someone who is either a parent with disabilities, or there are a couple of very interesting chapters that are written from the perspective of the children of a parent with a disability. And sort of, you know, what the extra challenges are there, what the, you know, and how they've worked to overcome those. So we're the very last chapter in the book.
Sam Moore 57:51 Oh, you're the grand finale.
Ryan Creech 57:53 Yeah, exactly, exactly. And it's kind of, it was kind of a full circle moment for me because my first real involvement as an advocate in Kentucky was at the second conference of the Kentucky Appalachian Rural Rehabilitation Network, the CARN conference. And I sat on a panel that was about parenting and like relationships and intimacy for people with spinal cord injuries. And I had gotten married just like three days before and had never had any like sexual relationship since I had had my spinal cord injury, had never had a child. You know, I had no, I had absolutely nothing to say. And so I sat on the panel and as they came around to me, I basically, I had absolutely nothing. I was like, "Hi, I'm Ryan and I'm brand new to this."
Sam Moore 58:48 I'm a newlywed.
Ryan Creech 58:50 Exactly. Yes, that was my entire experience that I brought to it. But yeah, so to be able to share kind of our story of what happened in the time since that panel was great. And it was good therapy for me to be able to include a chapter in the book. But yeah, so my wife and I kind of went through years. It took us nine years of basic, of different types of fertility treatments to be able to have, you know, attempting to have a family. It was so important to us and it was integral to everything that we did over those years. And so in the chapter, we talk about, you know, we had, I had fertility issues obviously due to my injury and my paralysis. And then as we got started, we found out very quickly that there were also fertility issues on her side. And so like most women who are diagnosed with infertility, she has what's called uncategorized or unspecified infertility. And that's so frustrating because basically it's an understudied area of medicine and we just don't have good science to explore what the problems are. And so when you're, when you're trying to conceive a child in that kind of environment, like you just, you just keep spitballing things, you know, you never know if you're going down the right track or, or whatever because there are not answers available. So we found a great Fertility Clinic in New York. We used CNY, which is a clinic up there. And we were able to do a couple of rounds of In Vitro Fertilization through them. And we were incredibly privileged to be able to not only support that financially. I mean, by the time that we finished, like concluded our journey up there, we had spent a grand total of $75,000 over the nine years.
Sam Moore 61:12 Not exactly available between most people's couch cushions.
Ryan Creech 61:15 Exactly. Yeah. Yeah. And I mean, twice, like I took, a month off to go and do all of the procedures and injections and monitoring. And, at one point we did an international trip, even trying to, trying to do, trying to conceive a kid. And so, yeah, the, I think the chapter does a really great job of, kind of airing all that out. And I wanted to give lots of detail on it. So someone who was just setting out on that journey would have, you know, a pragmatic, practical, like real life. This was our experience. And there were a whole lot of bumps in the road and a whole lot of wrong turns, a whole lot of struggle. But in the end, for us, anyway, it was a, we did have a positive outcome. So we do, you know, at the end of it, it does kind of come full circle and we were able to start a family. You know, after looking at IVF and various other fertility stuff and looking at private adoption, foster care and adoption, you know, so the chapter is very much worth reading.
Sam Moore 62:28 Yeah, a great source of hope, too, for others who are currently there.
Ryan Creech 62:33 Right, right, and that was the other, and that was kind of the point of of the book, too, is that we wanted to you know present like all of these stories and some of them were great outcomes some of them were stories of struggle some of them were stories of heartbreak but and in the whole point of the of the parenting book was to say like you know these are this is how you can look at parenting through the lens of the lived experiences of people with disabilities but like there's a whole lot of heartwarming moments and a whole lot of like just like family building and encouragement moments built into the book and and I think a lot of our contributors would would agree that even the ones who, you know, who were met like who didn't come to the the happy ending that they had hoped for were still able to to bring it and turn it into kind of a positive experience—
Sam Moore 63:34 Yeah, in some form or fashion.
Ryan Creech 63:38 —or hopeful or like teaching educational experience where they were able to help other people um through through the journeys
Sam Moore 63:44 In conclusion, Ryan, how might you suggest, back on the focus of your career at the moment, accessible digital media, how would you suggest that our listeners educate themselves further on this accessible digital media and the manner in which it could potentially enhance their lives?
Ryan Creech 64:10 Of course, yeah. Well, you know, the ADA, the Americans with Disabilities Act, requires that any entity that's covered by the ADA, and also the same is true for any organization that is receiving like federal money or is kind of tied in with the Section 508 guidelines, like all those legal things. Anybody who is providing services has to make them accessible, right? And so that includes websites, that includes flyers, that includes social media posts, okay? So I think that as an entity that wants to put out accessible information, there's a lot you can do to educate yourself. And a great starting point is actually the Department of Homeland Security. It used to be their training office, but now it is called their customer experience office. And they have excellent resources on creating accessible documents like Microsoft Office. They also have a phenomenal training on, it's called their trusted tester for web training, but it kind of goes through all of those super in-depth parts of WCAG, and section 508, and how those get applied to websites and other types of documents to really understand what is and what isn't accessible. So that's a great tool to have for the, you know, kind of whoever's in charge of making sure things are accessible within your organization. As an end user, it's always super important to advocate for yourself, you know. So if you do come across something, if you're trying to access, say, government services or just access a business and you get to a portion of their web page and you can't read it with your screen reader, you can't access it using voice-over on your phone or whatever, it's important to reach out to those organizations. And say, hey, this is not accessible, and I'm not able to have the same access as a sighted person or as a person who doesn't have dyslexia because it's not accessible. You know, you can kind of help educate and kind of bring those folks in to—
Sam Moore 66:46 Open their eyes to potential issues.
Ryan Creech 66:49 Right, right, and also to get them to kind of adapt and accommodate the needs that you have, so yeah, I think it's important on both sides to just kind of know what's out there and educate and just kind of advocate for yourself and for your from a business standpoint advocate for the consumers and clients you have out there that might have a disability.
Sam Moore 67:12 Yeah, so if you're a consumer of this stuff, be sure to let them know, you know, the creators of this content if you're not able to. access it. And if you're the creator of the content, remember the Department of Homeland Security when you're seeking to maximize its accessibility for sure. And HDI, if you'd like to learn even more about them, the site is hdi.uky.edu. So we'll try to link that in the show notes as well.
Ryan Creech 67:45 Also, if anyone wants to reach out to me, you know, send an email, I'd be happy to discuss any of the stuff we've talked about today in the podcast or the chapter in the book or accessibility, you know, anything that I can help or advise on. Everyone's always, I'm happy for folks to email me. My work email address is ryan.creech, that's R-Y-A-N period C-R-E-E-C-H at U-K-Y dot E-D-U.
Sam Moore 68:18 Perfect. Easy enough. ryan.creech at uky.edu. He would love to hear from you. If nothing else, just reach out and tell him that you heard him on Demand and Disrupt, and I know that that would bring a smile to his face. Well, Ryan, thanks so much for coming on with us today. We've learned a lot and had a bunch of fun learning. I hope you've enjoyed it, sir.
Ryan Creech 68:45 I appreciate you giving me the opportunity to talk about doing what I love doing.
Sam Moore 68:49 Well, the only thing that's, you know, almost as rewarding as doing what you love doing is talking about it. So, you know, we're glad to allow you to do that. And it's great that you and your cohorts are, you know, doing your thing and being a tremendous service to a tremendous amount of people at HDI. So keep up the good work, sir, and we'll do it again.
Ryan Creech 69:17 All right. Great, Sam. I look forward to it.
Kimberly Parsley 69:24 Demand and Disrupt is a production of the Advocado Press with generous support from the Center for Accessible Living based in Louisville, Kentucky.
Kimberly Parsley 69:31 Our executive producers are me, Kimberly Parsley, and Dave Mathis.
Kimberly Parsley 69:35 Our sound engineer is Michael Parsley.
Kimberly Parsley 69:37 Thanks to Chris Ankin for the use of his song, Change.
Kimberly Parsley 69:40 Don't forget to follow or subscribe so you never miss an episode.
Kimberly Parsley 69:43 And please consider leaving a review.
Kimberly Parsley 69:45 You can find links to our email and social media in the show notes.
Kimberly Parsley 69:49 Please reach out, and let's keep the conversation going.
Kimberly Parsley 69:52 Thanks, everyone.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
Kimberly talks with Dhaval Patel, founder and CEO of Lotus about the Lotus Ring, wearable device that is a cinch to hook up. Without installing an app or downloading software, the Lotus Ring turns off and on anything that uses a wall switch. Lotus is committed to Universal design and the social model of disability. Check out the product at Getlotus.com
Kimberly talks about the extra stressors that the holidays can put on people with disabilities. Read more on Facebook.
Thanks to Chris Ankin for use of his song, “Change.”
The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.
Be sure to follow the Advocado Press Facebook page
Visit Moving Forward, the Advocado Press blog.
Send comments and questions to [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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
Kimberly interviews National Council on Independent Living Executive Director Theo Braddy. They discuss the history and future of NCIL, attitudinal barriers, and the insidious nature of ableism.
National Council on Independent Living
Thanks to Chris Ankin for use of his song, “Change.”
The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.
Be sure to follow the Advocado Press Facebook page
Visit Moving Forward, the Advocado Press blog.
Send comments and questions to [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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
Kimberly talks with Paul Erway about overcoming not one but two major accidents, competing in wheelchair marathons in all 50 states, adaptive sports, and his work helping people regain their ability to drive with Superior Van & Mobility. Plus, Kimberly and Sam talk about all things Thanksgiving, especially the food. Spoiler alert, candied yams are gross.
To learn more about Paul, visit https://www.paulerway.com
Visit Superior Van & Mobility
Be sure to follow the Advocado Press Facebook page
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'm your host, Kimberly Parsley.
And I'm Sam Moore.
How in the world are you today, Kimberly?
I am doing great, Sam.
How about yourself?
Oh, loving every minute of being inside.
This is one of those days you need a heater as we speak.
You do, you do.
It is chilly, chilly here in Kentucky today.
Yeah, I don't think we've gotten any sleep yet, but you were telling me before we went on the air here that it was, it was sleeting a little bit in the Corvette city earlier today.
It was sleeting a little bit.
Yep.
Just a little, not much and probably not for long, but yeah.
And a little sleep freaked my dog out.
She thought it was a whole sky is falling situation.
So yeah, biscuit, you said she, she saw that felt a little bit of it and then turn around and I tailed it right back, right back inside.
She didn't want any part of that.
No part of that.
Oh goodness.
I don't blame her.
So glad we're inside where it's nice and cozy.
I am interviewing today.
We get to hear from his name is Mr. Paul Airway and he's fascinating man.
He's speaker.
He has competed in 50 wheelchair races, wheelchair marathons, 50, 50, one in all 50 states.
I think.
Yeah.
He wrote a book about it and he, he lives in Louisville and he also works with a superior van and mobility.
So he's going to talk to us some about that.
So fascinating stuff here today while we stay in where it's nice and warm, Sam coming to us from the North quail motel, correct Sam?
That's right.
Yes.
That is the, the exact destination that I'm blessed to be coming to you from.
We've got fresh coffee.
I forget.
Well, you, you, you do drink coffee because we've talked about that off the air.
You like your, you like your coffee.
Usually sugar it down a little bit.
No, I do.
I do.
I do like a coffee.
I like tea, basically hot chocolate, any hot drink.
I'll take it.
Anything with caffeine in it.
I do like that too.
Yeah, me too.
Caffeine is something I got to have as well.
Yes, exactly.
And you talk about, about your, your coffee on a blabbing in the bluegrass, your personal podcast that you do about all things Kentucky.
And I wanted to talk to you about this.
You sing the opening song, the theme song for your podcast.
I do.
Yes, that is, that is me and knock on wood.
I think everybody has survived my singing so far, but yes, I appreciate it.
Yes.
I just, I came up with the lyrics.
I think it was during, during one of the, the sleepless nights I had before the, the podcast got cranked up.
I'd had the idea for the show and I was just trying to ponder the lyrics.
So I was wide awake one night and I'm pretty sure that's, that's when they, they came to me, but yes, I sing it.
And my buddy, E.J Simmons on the keyboard, he, he provided the accompaniment, but yes, that's now.
So did you, you wrote the lyrics yourself?
I did.
Uh huh.
And so, I mean, you had to kind of compose it.
Is that, is compose it like music composing something that you do?
Yeah.
Well, you know, I used to play piano, so I guess music is sort of in my blood.
I sort of, I lost interest in piano a while back and sort of drifted away from it, broke my parents' hearts, I think.
But, but anyway, I still, I enjoy music and you know, I don't, I don't maybe write songs on a, on a regular basis, but occasionally it's, it's something that I feel inspired to do.
And, and I guess I did that particular time.
That's awesome.
And do you sing in like a choir or church choir or anything?
Uh, not a choir per se.
I do sing at, at my church, Three Plug for First United Methodist Church.
Yes, I do sing there on occasion.
And, uh, I'll do one or two songs here and there with the, with the accompaniment of, uh, you know, E.J, E.J Simmons who leads music in our early service, or sometimes I'll roll with Nicolai Peake who leads music in the traditional service.
So, uh, you know, shout out to E.J and, and Nicolai, but yes, I'll occasionally sing in, in church.
Well, and if any of you haven't checked out Sam's podcast, Blabbing in the Bluegrass, you should check that out and listen to him sing.
It is delightful.
And I believe this week you talked about Thanksgiving and this will be coming out the week of Thanksgiving.
So you talked about the most liked and the least liked Thanksgiving foods from Kentuckians, correct?
Right.
Yeah, this was a survey and it was, uh, well, this was a story that was done by Local 12, WKRC TV in Cincinnati a few years back.
And they, they drew from a, a Crestline survey.
So I, you know, that was just two years ago.
I assume that data still, you know, would be roughly the same if not exactly today.
But according to that survey, you know, Kentuckians ranked candied yams as the most popular Thanksgiving food in Kentucky.
And, uh, you, you disagree with that, don't you, Kimberly?
Yeah, I don't, I don't get it.
I don't, they may be eating something different from what I know.
No, I'm sorry.
The least favorite, um, or the least popular food, uh, at Thanksgiving among a majority of our fellow Kentuckians is cranberry sauce, which I don't crave myself.
Yeah, I'm good with, I'm good.
You can leave that.
Yeah, I'm not.
Yeah, I'm good without cranberry sauce.
A lot of people in my family just live for it, but, but I don't.
Now I do like, I do like sweet potato casserole, Kimberly.
Do you like sweet potato casserole?
No, like marshmallows and rice crispy, uh, rice in there.
No.
And is the sweet potato and a yam, are those two things?
I mean, they're, they're so they're, yeah, they're basically the same, but I guess, uh, you know, the sweet potato casserole, it's, it's a little different than the candy yams because this, the sweet potatoes are like almost mashed, if you will.
So it's sort of like a mashed sweet potato with white rice crispies and marshmallows in there and so forth.
But, but I do like that.
Although the candy yams, I, you know, I can sort of take them or leave them, even though apparently a lot of Kentuckians love them.
Apparently.
Yeah.
So what is your favorite Thanksgiving food?
Oh gosh.
I love me some, some macaroni and cheese, especially my mama's.
She, uh, she makes the best and, um, you know, the, the dressing's okay.
I can, I like it in small doses, but not in, not in large amounts.
Uh, last year, my cousin who's developed a habit or a hobby of barbecuing in recent years, he actually, um, brought ribs to our Thanksgiving party last year, which I loved.
I got just picked out on the ribs.
I'll take ribs over turkey any day of the week.
Sorry to you.
Turkey lovers out there, you know, don't hold it against me, but I'd rather have ribs.
And, uh, I'm sure you're pretty partial to, uh, ribs as well.
Kimberly, have you ever had ribs on Thanksgiving?
I have not.
I'm, I'm not a huge meat eater.
Like I pretty much don't even really eat the turkey.
Like, uh, you're just like a dressing and veggie.
Yes.
Yes.
Yes.
Give me all the casseroles and the desserts.
That's how I roll with Thanksgiving.
There you go.
Now I know, you know, you probably wouldn't turn any dessert down Kimberly, but if you had to choose a favorite, which one would it be?
You know, I think, okay, it's going to be pecan pie, but I do like the chocolate chip pecan pie.
Oh gosh.
You are a lady after my own heart.
I love pecan pie myself.
So does now if you put chocolate chips in, is that what it does?
Does then it become a Derby pie?
I guess you can make an argument that it does.
I've, you know, I've never had a chocolate chips in a pecan pie per se, but you got to remedy that.
You don't think that, um, I don't think that I would like it any less.
I think, in fact, I think I would like it more with chocolate chips in it.
It's delicious.
That's, that's, that's probably what I love chocolate chips.
So you don't have to, um, any leftover pieces you have Kimberly of, of, uh, that chocolate chip pecan pie, just send them up here to the North quail motel.
Now our big, our big Thanksgiving thing, Thanksgiving is the day we get through to get to the day after Thanksgiving because to get to the Friday after.
Yeah.
We don't do black Friday.
We don't shop.
That's not we like Michael makes his special straight up sausage balls.
I said, we don't eat meat, but my daughter doesn't eat meat, but she loves the sausage balls, which is just like, you know, Bisquick cheddar cheese and sausage.
That's it.
But for some reason, because we only have them that one time a year, they're special.
And so we eat that and sometimes basic is good.
Bisquick cheese and sausage.
That's all you need.
And, uh, gosh.
Yeah.
So that's the day after Thanksgiving when, when Michael does the sausage balls.
That's right.
That's right.
And we, uh, we just lay around and watch, uh, watch TV, watch Christmas movies on TV and just hang out together.
We don't leave the house.
So are you one of those that puts up your Christmas tree today after Thanksgiving?
No, my Christmas tree needs to be up before Thanksgiving.
Thanksgiving is just pre Christmas.
So your Christmas tree is like, uh, it will be this, this, that is this weekend's chore.
Oh, that's this, that's on this weekends to do list.
See, we got a new Christmas tree because our other one, you know, they get old.
We don't, we just use an artificial tree.
And so our plan is to put up the Christmas tree and see how destructive biscuit is going to be, but see how your dog reacts to it before we decorate it.
I understand.
That's a good, that's smart actually.
So you just put the tree up, let it sit for a day or two and then kind of get a feel for biscuit.
Yeah.
And then we'll decorate it based on his actions.
Then you can, you know, decorate your tree and in the, uh, in the spots that you choose.
Right.
Right.
What about you up there in the North whale motel?
Is that, is it all decorated yet?
No, it'll probably be sometime the weekend of Thanksgiving.
And, and we switched to an artificial tree, um, not long ago ourselves and I can appreciate how easy it is.
Although I do miss the, um, you know, that, that strong pine scent that you get from a real tree.
I hear you, but, um, but yes, we, you know, before, uh, that Monday after Thanksgiving between Thanksgiving Thursday and the following Mondays, when, when ours will probably come up and, and be decorated.
And luckily for me, the, the pine scented candles are, uh, getting better and better each year.
It seems like, so yeah, they're becoming more of an acceptable substitute.
There you go.
There you go.
I can at least get my pine smell that way.
That sounds great.
Yeah.
That's a, that's a good idea.
So all you listeners out there, if you want to tell us about your own Thanksgiving or black Friday traditions, what you do, what food you like, what food you don't like, go ahead and get on Facebook and follow the Advocato press Facebook page.
And that's Advocato A-D-V-O-C-A-D-O press.
So just give that a search and follow along and get in the comments and argue with people about yams.
Yeah.
And who knows, we might pick out a few comments for honorable mention on the show next time.
Oh, that'd be great.
Yep.
That'd be, that would be great.
So you might, you folks might get the big shout out.
Yeah.
Unless you pick yams and then I'm sorry.
You pick candy yams, then you know, we'll still love you, but we just might not mention your comment on the show.
There you go.
That's what we'll do.
Well, Sam, always great talking with you.
And now we are going to hear my interview with Paul Airway.
Can't wait.
Let's hear it, Paul.
And I am fortunate to be joined today by Paul Airway.
Paul is the, he's with Superior Van, which he's going to tell us more about and long resume.
I know you came to my attention as someone who had done 50 wheelchair marathons in 50 weeks.
And then I talked to you and you were like, well, no, it was actually a team and it was actually 39 and I'm like 39 marathons that there's no way that's not going to be impressive no matter how big the number is.
So welcome Paul Airway to demand and disrupt.
Great.
Thank you so much, Kimberly.
I appreciate it.
So, so tell me about the marathons.
Tell me how that came about and, uh, just tell it, tell our listeners about yourself.
You're very busy guy.
Yes.
I, uh, where I grew up in Pennsylvania and it was kind of backwards, wasn't possible to have bicycles because of the dirt roads and stuff.
So my father brought us up ponies and, uh, he kind of knew that life would be tough and you have to get back on your horse and life is going to throw you and he'd be there to get back on my pony at four years old.
And I started riding that pony, uh, elk and his name was Ralph Solomon Trumburger the third.
Can you imagine?
No wonder.
I didn't know if I was being bucked off or falling off of an experience, but, uh, my father's there to pick us back up and get back on.
And he was so right as to ride those, uh, Appalachian mountains, uh, the fall with the plethora of leaves or the winter time with all the snow, uh, and how quiet it was, it was just amazing rides.
But, uh, I started getting bigger horses, you know, bigger challenges and showing horses 11, training my own horses 16, went to college for horses.
I think I'm going to ride horses the rest of my life.
Right.
But I didn't do a traditional college.
I apprenticed with Terry Thompson, one of the top training trainers in the nation.
And he said, Paul, you're doing a great job.
When you graduate, I want you to stay on and go on the national show circuit with us.
So you managed to count down the days, the hours to graduation, but the last weekend of college, you know, you got to go celebrate with your fellow classmates.
So I was drinking, we were partying double date kind of thing.
So I let my best friend drive because he doesn't drink.
We took that precaution, but 1980, there was no seatbelt law.
There was no seat belts in the back seat.
And so I'm sleeping back there with my girlfriend and we just came to a Y on the road, road construction, cinders on the road, and just fell into that ditch.
In that instant, my horses were taken away forever because I broke T4 through six were shattered.
So now I'm a paraplegic.
And so now I ride a chrome pony every day.
Wow.
And how old were you when that happened?
I was 21.
21.
Goodness, goodness.
So obviously you had learned to get back up.
You learned resilience.
So tell me how that went.
Well, as you know, my father was right.
Life is going to throw you and you have to get back on.
And so I went back to that college to get the books because I sure didn't worry about books before I was going to ride horses.
And in the next room of this college was this gentleman was Spina Bifida.
He was a little guy.
You know, I was six, three at a small town.
So I did, I was the tallest one in the school.
So I did football, basketball and track.
And this little guys were going to lunch.
He said, see that telephone pole?
I'll race you to it.
Mark, this little guy wants to challenge me.
Yeah, I'll race you.
Well, he smoked me.
Oh my gosh.
I was so embarrassed.
So right then, I thought if I'm going to use this wheelchair, I'm going to push as fast as I can.
I want to beat Mark.
And that started the acceptance of the wheelchair.
That started my racing, the love of trying to push his chair faster.
And so as I got improved on the racing chairs and everything, I started doing better and just found out about racing that way and competing and track.
So it was great times back then.
Awesome.
So how did the idea for doing 50 marathons come about?
Yeah.
So start racing regionals, doing better, make it into nationals.
They said, maybe you can make the Paralympic team.
Ah, wouldn't it be great?
So I started training harder, doing better nationals.
And I made the developmental team 10 years later in 1990.
And I got to go to Colorado Springs, Colorado, the Olympic training grounds for two weeks for training.
I made the developmental team that I got to go to the world championships and ace in Holland for two weeks.
I'm competing at the world level of the world championships.
I got smoked over there.
Oh my gosh.
So I had two years to get ready for the Paralympic team to make that.
So I trained hard.
I got an ex Penn State football player to push me in the weight room and stuff.
And then I go to Salt Lake City, Utah in 92.
And this little guy shows up.
He's only 15 years old.
Now he didn't smoke me, but he beat me by those split seconds that he went to the Paralympics and I did not.
So have you ever lost a dream, that chance, that possibility, something you worked hard for?
Sure.
It hurts.
Yeah.
So kind of put a damper in things.
And so my mentor calls me up.
He says, listen, you've never done the Boston marathon.
It's like, I'm going from track racing to doing 26 miles.
He says, just do it for the experience because it's the greatest race in the U S. And so I start training a little bit for distance and I qualified because again, I was fast enough to do that.
I'm not getting win Boston.
I didn't win the Paralympics or I didn't even get a chance to go there or anything.
So I'm not that good, but I was good enough to get into the marathon.
So I do Boston.
Out of the 26 miles, I get 25 done and all of a sudden I get a flat tire.
And I said, I don't care.
I'm going crank it out with a flat.
And I called my mentor up and I said, 26, I did the 26 miles in two hours and 16 minutes, which was the record back then.
And he says, Paul, that's great.
Now you got to do the greatest marathon in the world for wheelchairs, which is a weed in Japan because there are no runners like Boston.
It's strictly wheelchairs.
And so that's why I was training for Weeda Japan.
And I ended up training on a Sunday afternoon was 94 degrees because, Hey, maybe it'll be hot in a Weeda.
And as I'm thinking, I'm going to go quick little 10 K three miles out, three miles back.
And when I say out, there's a pretty good downhill.
I'm getting a little cooled off with a cool breeze and stuff, but a pickup rounds the bend at the bottom.
And he's coming up the hill as I'm going down.
I'm on my side of the road, but I either jerked it too quickly or I hit a pothole that three times I was on two wheels before I slam into his driver's door.
Thank goodness I had a helmet on.
So were you, were you injured?
T C six spinal process broken clavicle scapula out the end, two ribs puncture lung laying on the hot asphalt was 94 degrees out.
How hot is that road?
So after all life functions stopped, I got a helicopter ride to university of Kentucky medical center.
Obviously I made it, but trying to recuperate from that.
It's like, I still had a Weeda Japan.
I still had that goal, something to reach for.
And sometimes that's what you need.
That's what you need to get back up and going.
Because my father was right.
When you can get back on your horse, the rides that you can still take are going to be truly amazing.
And so I'd worked hard to get to Weeda Japan.
And I did that in 2010.
And I'm rooming with a guy from Tunis on Arizona.
I said, okay, we tried making the Paralympic team, didn't do it, but we did Boston marathon.
We did the greatest marathon of the world for wheelchair and a Weeda.
What's next?
And he says, well, marathon runners in the United States tried to do a marathon in every state.
So that's 50 states.
I'm thinking, hmm, 50 states, 52 weeks in a year.
What if we do it quickly?
Would that be a challenge?
What do you think Kimberly?
50 marathons, 50 states in 50 weeks.
Like I said, just, just one marathon sounds exhausting to me.
So this would be impressive no matter how long it took.
So it took a little bit to organize.
We did get another guy to join us.
And so the three of us started out trying to do those and my family's totally against it.
So as a team, because again, the third race was Houston, Texas.
Oh, I'm sorry, the second race was Houston, Texas.
And in that marathon, I got 11 miles and it was raining the whole time.
And I got two flats and I couldn't complete that marathon.
So that's a marathon I didn't complete, but I was there.
I tried, you know, but so anyways, that's kind of why we were doing it as a team.
And, but also I'm doing this while working full-time.
So I'm putting in full-time work with superior van mobility and then trying to do the marathon.
So it puts a trouble, personal life, stresses on everything because you have to prioritize.
But it was great.
There was so many rides within that challenge and because I worked full-time, that's why I only got 39 in.
And I did some of the marathons before that.
And I did some afterwards to get up to my 50.
And we didn't complete in 50 weeks because Montana still had, we call the race director and Montana says, I'm the race director.
I don't allow wheelchairs in my marathon.
Are you kidding this day and age?
In 2013, they don't allow wheelchairs.
And so we were thinking about getting some lawyers to pursue the ADA and getting us in there because we looked at the course and everything, it seemed fine.
And so we said, no, let's not make waves.
Let's just go on and we'll pick it up later.
So it took us four times to get Montana, but it was after the 50 weeks.
So persistence challenges, and we had challenges within the challenges, Kimberly.
Yeah.
Now you wrote a book about your experiences with this, right?
Yeah, because also we tried to help the community and everything.
So as we went into each city, we'd also spoke at a rehab facility or hospital to try to thank the therapists for what they do for us.
That's what helped us pick back up and get going again.
Both my accidents, the therapists were there to help us.
And so we were trying to give them some encouragement that they're doing some great things, that they're helping people with disability and we can still do some great things.
We can still get back on that horse.
We can still have amazing rides.
And the very first one said, you're going to have some great stories.
You need to write a book because from that presentation, there's three people that were patients there that got encouraged to do adaptive sports.
Oh, wow.
Great.
That is great.
And so from that, we started to write a little stories about each race, but then we did a behind the scenes.
So each chapter, there's a behind the scenes of things that went on.
Wow.
That's wonderful.
And tell me, what's the name of the book?
50 Abilities Unlimited Possibilities.
Awesome.
That's an awesome title.
That's an awesome title.
You know, the physical therapists and things, they are so, so important, aren't they?
I'm glad you did.
I'm glad you mentioned that.
So shout out to all the therapists and things out there.
They do great work, don't they?
Oh, sure do.
Because, you know, the very first time was so much mental of going from working so hard of riding horses and everything I did for horses.
Now all of a sudden the horses are taken away.
That's such a mental challenge.
But the second accident, it hurt so bad with the burns and stuff, all the skin grafts.
So just the therapist being there to work with me to get me through that was more the physical part than the mental.
Because I know I made it the first time, I can make it the second time.
And I still had that goal to reach for.
And it was a truly amazing ride.
Can you imagine going to a foreign country like Ace in Holland and now I'm in the weed of Japan.
And so where would I be if I gave up?
If I would have quit the first time and sat home and just worked the remote or, you know, the second time saying that was enough, but look at what I was able to do and the people I met, the situations that we had along that way.
How long was your recovery from that second accident?
The second accident was 2006, but it wasn't until 2010 I got to Ouija.
So it's four years.
And it's a little tougher when you're a little older.
Yes, indeed.
Yes, indeed.
But also because of the difference of the skin grafts, you had to be careful with them.
It's very thin skin.
But it was tough.
So did you end up from that second accident with any further disabilities after that?
Or were you able to recover to your prior abilities?
More of a thank goodness for doctors and physical therapists and stuff, because with the burns I'd have to go to more of a burn clinic.
And I would see the people with burned hands and burned faces and couldn't imagine what they went through because mine was my back.
But when I see somebody with a burned face, I just, so it's appreciation of not just my own disability of being a spinal cord, but the appreciation of therapists and doctors work with burn victims and because that's tough as well.
So also for other people like yourself that are blind, I just have that appreciation for all disabilities now.
Yeah.
That is interesting.
I know I have an appreciation also for other people's disabilities because you learn so much, don't you, from other people and how they overcome and even little hacks and ways that they overcome their challenges.
And I am an employee at the Center for Accessible Living.
And here in Bowling Green, one of the calls that we get a lot is from people who have new spinal cord injuries.
And so they have become wheelchair users and they want information about wheelchair accessible van.
And now in your spare time, I guess, when you're not marathoning, here in Kentucky, you're kind of the face of superior van mobility.
So tell me some about that.
Well, with my first accident, the first week, talking to the therapist, I said, can I still drive and can I still have, you know, what 21 year old guys want to have?
Where women would ask, can I still drive and can I still have children where men are kind of a little different there.
But again, that importance to be able to go where you want to go, when you want to go, to be able to go driving again was so important for somebody.
So I can truly understand why you're getting calls about that.
But it is so blessed that I was able to work for a company that did the vehicle modifications because again, I could show them off and show how they work and use stuff because I use a wheelchair.
And it was such a blessing for me to get into the industry.
And let me tell you a little story about that.
When I got in the industry of adapting vehicles for a person with a disability, I met this gentleman, Ralph Braun, of BraunAbility, and he had a disability of muscular dystrophy, not Deshane's, but one of the other muscular dystrophies.
So he saw his need of having a proper wheelchair, proper power chair and stuff.
So he built one of the first accessible tri-wheelers.
And he said, if this helps me, it's going to help other people.
And I saw how small the company was in 84 and what he was doing.
And he built one of the first accessible wheelchair vehicles to carry a scooter.
And then in 2002, sitting by the nearly empty parking lot of UofL football stadium, there's a loud rush of air.
And I look up at this hot air balloon, red, orange, and yellow, and it lands 50 feet away.
And as the basket touches the ground, part of it unfolds and becomes a ramp.
And this young girl comes out in a power chair with a smile so big, she could have ate a banana sideways.
And sitting beside me is Ralph Braun of BraunAbility.
And he says, Paul, to make it in this industry, the more people you can help, the more you're going to be blessed.
And he was so right, because I saw his company in 84, and here it is 2002, that he has helped so many people nationally, but internationally, that he could afford the only wheelchair accessible hot air balloon in the United States.
And here he is bringing it to Louisville, Kentucky to give free rides to person.
Can you imagine?
That's awesome.
Do you ever think you get a free ride in a hot air balloon?
So again, that's what I like to do is with Superior Van Mobility, we're a family-owned business, largest one in the country.
We have 15 locations in eight states.
But it's great working here, because I get to help people every day to learn about vehicle modifications and what might be adapted best for them.
And then we have mobility consultants that will really specialize in working close to that person.
They can bring a vehicle to the person's home.
We can bring a vehicle to their rehab or hospital or that to meet with them to find what's going to be best for their needs, find what's going to be affordable, because again, that's the big thing.
As you know, health insurance doesn't pay for anything with vehicle modifications.
So you do have the voc rehab, you do have the VA, you have workman's comp, but the rest we kind of need to really work with.
And so that's where our mobility consultants specialize in helping people get the right vehicle, the right price as well, Kimberly.
So you do work with people to try to help, do you all provide financing or help to find financing?
We do have a financial specialist here that works with different banks to work with that.
But we can direct them to the right places and stuff to look at grants.
Actually, even on our website, under resources, we have a link that connect people to different grants and everything.
Did you know that there is funding for injured jockeys?
So we've done three vans for jockeys that were injured while they're riding horses.
And then there's something for coal miners, because coal miners get injured as well.
And then there's a grant for coal miners.
So again, this website, because everybody has a little different needs, different situations and stuff.
And so they can go to that and find some or call one of our mobility consultants to find somebody that'll help them, direct them in the right places and stuff.
So we're very glad to help Kimberly.
People's needs are very individual in that regard, aren't they?
Oh, every person's disability is different because look how many levels of spinal cord there are.
As far as visual, did you know that there's a bioptic driving program for a person with, that is blind, but because of this, they can partially see that we can help them out that way.
Really?
Yeah.
And then there's the cerebral palsy, how many different levels of cerebral palsy are there?
And then the progressive disease like MS and ALS and stuff that progressed a little bit, so their disability changes.
But look how many wheelchairs are out there, scooters, power chairs, everybody's choice of what they use.
And then the vehicles, look how many different vehicles are out there, right?
So I will put a link to the website in the show notes, but do you know the URL for the website?
Do you want to tell everyone now?
Yeah, it is superiorvan.com.
Awesome.
That's easy.
Yep.
People can remember that.
That's wonderful.
That's wonderful.
So tell me, your story is, you have done a lot.
You really have.
Do you rest?
Do you ever just take a day and chill and rest?
I'm afraid that day has come.
Being 66 here in October and after 45 years of using a manual wheelchair, all the racing, all the training that went into those years, the marathons and stuff, I'm afraid to say is last October, I gave all of my racing equipment to the new junior team in Louisville.
And there was a gentleman there.
He's 16 years old and six foot.
So he fit my chair perfectly.
And he was able to go to high school nationals to compete in my racing chair.
So it's great to help that next generation.
And so it's great to see.
And so yes, I've kind of rested from the racing now because my shoulders, arthritis and rotators and stuff, but there's a great team in Bowling Green.
Yeah.
Really?
Uh huh.
Yeah.
Cameron Levies of Parks and Rec is really doing a lot with adaptive sports in Bowling Green, Kentucky.
So you need to get to people get connected with him and maybe get him on your podcast.
Absolutely.
We have had one other wheelchair racer, Matt Davis is here in Bowling Green and we've had him on before, but yeah.
So I guess you would say adaptive sport has been very important for you both physically and mentally, emotionally.
Yeah.
Because you look at children and that's why the Louisville team got started.
And I think that's why BJ has gotten started down there with adaptive sports because as a child with a disability, he might be the only one in the school or there's just a couple in the school.
But so the gym teacher is working with them playing basketball and stuff, but they have the child with a disability set and keep score, uh, you know, just not really participating.
So with the adaptive sports, now they get to participate.
So the Louisville team got 10 basketball chairs so they can have children with disabilities in their chairs playing, but again, they can get some other people playing like in the gym class.
So they have actually a basketball game, everybody using wheelchairs to play.
So you said they avail part of that school, part of that organization.
So it's great to really see them get started that way.
So they're not just sitting on the sidelines and keeping score.
They're, they're actually participating in the other kids enjoyed that as well.
That is amazing.
That really is.
Wow.
And it's just so important to get back to realize you can compete.
You can enjoy using the adaptive equipment because again, there are others throughout the country using it.
So I've competed against Matt Davis in the past.
Yeah.
And Bowling Green has a good 10 K race in October.
Right.
That was a fun one to do.
That's for sure.
Yep.
The 10 K classic here.
It's a big deal probably coming up very soon.
Um, well, Mr. Arway, it has been wonderful to talk to you.
So before I let you go, just tell me, what would you say to someone who maybe has just experienced that kind of accident and life is different now?
What would you, what would you say to that person?
Yeah.
Whether it is life or a horse that throws you go get back on the rides you can still take are truly amazing.
Awesome.
That's wonderful.
Thank you for joining us.
I appreciate it.
Everyone Paul Urway, superior van.com.
Thank you so much for joining us.
Thank you, Kimberly.
Thanks for having me on.
If you like the podcast, remember to follow or subscribe so you never miss an episode.
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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.
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Chances are, you or someone you know would be a prime candidate for the Medicaid Waiver Program. Sam Moore interviews Sarah Duncan, Director of Waiver Services with Green River Area Development District. Sarah discusses Eligibility requirements and the process of becoming enrolled.
This episode originally aired on Sam’s all-about-Kentucky podcast, Blabbin’ in the Bluegrass.
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 today I am here with someone very special.
I am here with Sam Moore.
How are you, Sam?
Well, I'm glad somebody thinks I'm special, Kimberly.
I'm doing great, and it's an honor to be back here on Demand and Disrupt for my second time.
Yes, this is your second time.
Now, for those who might not remember, Sam is a, well, he's a WKU graduate.
That's the most important thing.
Go tops.
Go tops.
He's from Henderson, Kentucky, and he does a podcast called Blabbing in the Bluegrass, which is one of my go-to podcasts that I listen to every week.
Love it.
If you haven't already, you should check that out.
And a couple of weeks ago, as I was listening to Sam's podcast, he did an episode on Medicaid waivers.
So, Sam, tell me how that came about.
Tell me about that episode.
Well, you know, I try to keep an open mind to pretty much everything on my podcast as long as there's a Kentucky connection there.
And Sarah Duncan is the lady's name.
She was actually my special guest.
And I enjoy interviewing health care professionals that have made a difference in people's lives here in the state from time to time.
And Sarah is the Director of Waiver Services with GRAD, which is a Green River Area Development District.
I know you're somewhat affiliated with GRAD down there in Bowling Green, aren't you?
That's correct.
That's the Barron River Area Development District.
So same kind of thing, different place.
Yeah, same kind of thing.
So I thought it'd be cool for her being, you know, because that program, the waiver program has really been a godsend to a lot of people.
So I thought I would ask her to come on and talk about the different types and the qualifications.
And yeah, she was great.
It was, it was, I mean, it was so informative, just so much information for me.
I work at the Center for Accessible Living and stuff I didn't know and just also for our listeners.
So that's why what you're going to hear here shortly is just a re-airing of Sam's episode that he did with her.
I always enjoy hanging out here in the podcast world with Kimberly.
And I've even had her and Lisa McKinley on my show and we talked about there.
So we've had a few joint efforts going on, but like she said, my podcast is blabbing in the blue grass.
And I like to feature restaurants and musicians from Kentucky, authors, athletes.
Like I said, I try to keep an open mind to pretty much everything.
You know, as long as there's a connection centered around Kentucky there.
And I've also done educators and health care professionals.
And so I've got the podcast that I do and I also here in Henderson host trivia at a couple of different pizza places.
So Kimberly, if you're ever in Henderson on a Monday or a Thursday night, chances are I will be hosting.
Monday nights I host at Rock House on the River and Thursday nights I host at a place called Fire Dome here at Henderson.
So Kimberly, I think you'd like both places if you like pizza and wings, which I'm sure you did.
I tell you it pub trivia.
That just sounds like that sounds like so much fun.
And people take it very seriously, don't they?
Oh yeah.
You'd be surprised even though they may be friends of that are, you know, talking and mingling amongst themselves before the game, but then they split up and form their teams and they're, they're competitive during the games.
And you, you emcee that, right?
Right.
And I come up with the different questions each week, which is a challenge, but a fun challenge that I enjoy.
And so how many questions do you have to come up with?
Well, there's four different rounds and they're, they're generally random categories each week and then four questions in each round.
And it's, it's, it's random, random trivia categories pretty much.
It's a random knowledge.
I'll have four different ones.
The only time we ever have like an overarching theme is like on the trivia before Halloween, we'll do a Halloween trivia usually.
And then last one before Christmas, we'll do a Christmas trivia.
I know by now a lot of people are probably sick and tired of hearing about the election, but one, one trivia category that I did Monday night centered around, you know, election short comers.
And they were people who had run for either president of the United States or governor of Kentucky that came up short.
Maybe they were runner up or shorter up than that, but the bottom line, they just didn't win.
And, and we tested the, the participants knowledge and recollection of that.
So, and did they do well?
Did people know a lot of that or was it all new?
Yes, a sort of a mixed bag.
I think some of it went back a little far for people.
I'll, I'll test one on you, Kimberly.
Do you remember who Bill Clinton defeated on the Republican side when he ran again in, in 96 for the second time?
Yes, I do.
I'm old, so I have to think about it.
But you were, you had graced the world with your presence.
I was voting.
I was, I was a voter then.
That would have been my first election, actually.
The first election that I voted in.
Yes.
That was my first time to vote.
And Bill Clinton defeated Bob Dole.
There you go.
Yeah.
I think, yeah, that was not my hardest one, but I think, I think some people had to think about that for say, and it might've been a little harder since, you know, the, the game was sort of on the line, but, but you know, Bob Dole did lose that election, but a definitely a proponent for people with disabilities overall.
I was still, I was only eight years old at the time.
So I really didn't get to know him too well.
Yes.
Yes.
He, he, he was, I believe there was even a, an adapt to sit in, I believe, I believe one of our recent guests on the podcast talked about in Senator Dole at the Times office.
And so they weren't going to leave until he threw his support behind the ADA and, which then did come into law in 1990.
So I'll tell you what, he definitely gets props for me for, you know, being all for and all supportive of the disability community.
Right.
Yes, exactly.
So very timely that you, you, you threw that question out of me, just out of, out of thin air.
Thanks for that, Sam.
I'm all about curve balls, dealing them and taking them.
Did not prepare me for that at all, but Hey, that's, that's how we roll.
So thank you, Sam, for joining me for the work that you do on Flabbing in the Bluegrass.
And guys, you're going to be hearing more from Sam Moore in the future.
And if you want to reach out to Sam, you can always listen to his podcast, but you can send an email to demand and disrupt at gmail.com and I will pass those emails along to Sam.
Absolutely.
Yeah.
The man that disrupted gmail.com or bluegrass blabbing at gmail.com, whichever CC is for you to remember.
There, there you go.
All right.
And now, so Sam intro, intro this episode for us.
All right.
Well, as Kimberly said, this is Sarah Duncan.
She is the director of waiver services.
She was a guest on my show about a month or so ago.
And we talked about the Medicaid waiver program.
And so she's going to describe the different aspects of it and the qualifications.
Some of you might qualify and, and maybe not even be aware of it, or maybe you know somebody who would qualify and maybe not be aware of it.
So we're going to talk to, to Sarah here and this is a full show.
So there'll be a bluegrass brain buster, my, my trivia question at the beginning.
And then you hang out while Sarah and I are talking and, and you'll get the answer at the end.
So I hope you enjoy and thanks so much for having me back on here, Kimberly.
All right.
Thanks guys.
Thanks for listening.
Here's our interview.
The hard work and dedication of our healthcare professionals throughout the state certainly deserves more recognition and attention than it often gets, which is why we do a little thing around here every so often called the healthcare hero spotlight.
And in it today, yes, mischief, my cat is all excited yet again, you know, when she's excited about my topic, she always climbs up here, tries to climb on my lap or gets close beside me.
But anyhow, we are going to talk to Sarah Duncan.
She is the director of Waiver Services from GRAD, G-R-A-D-D. That stands for Green River Area Development District.
And the Waiver Services program has been a real blessing to many people, yet there are still many that undoubtedly would qualify for the program that aren't familiar with it.
Now it includes two types of waivers.
There's a home and community based waiver, and then there is what is called the Michelle P.
Waiver.
What are the similarities and differences?
Sarah will take us through those.
She will also describe what inspired the Waiver Services program in the first place, and she will touch on eligibility requirements and the process of enrollment.
It's going to be fun, it's going to be informative.
So buckle up for Blabbing in the Bluegrass Season 10 Episode 17.
Kentucky features so much more than basketball and horses.
We're home to scenic spectacles and one-of-a-kind golf courses.
If boating, fishing, dining, or music is your pleasure, we'll guide you to the sights and sounds that you will truly treasure, cause we're blabbing in the bluegrass.
There's nothing here to hide cause we're saying it with pride, just a blabbing in the bluegrass.
With knowledge of the state you're sure to appreciate, yes we're blabbing in the bluegrass.
Where musicians furnish talent and great whiskey cools your palate, just a blabbing in the bluegrass.
With a fit for every taste, precious time is not to waste.
From Prestonville to Prestonsburg, Princeton to Pride, we do what we do each week with pride and enthusiasm.
We fit this great commonwealth just like a glove.
If not better, hear it only here on Blabbing in the Bluegrass as we explore and celebrate all people in all things Kentucky.
With me, Sam Moore, got the steaming hot cup of coffee to my immediate left in case you were worried about it.
I tell you, you need it on a day like today when there's a little crispness in the air, but I'm not complaining because tis the season and you know when you combine cool weather with hot coffee, it is truly an all American combination to say the least.
Now we talk about doing what we do with pride and enthusiasm, but we also have great guests on a weekly basis who help me to make this show a reality and this week's guest is no exception.
She's great.
No, don't tell her I said that.
Her name is Sarah Duncan and she serves as Director of Waiver Services.
Now if you're not familiar with that or what it entails, don't feel bad.
I have noticed that there are considerable gaps in our knowledge of the Waiver Services program, which is why we are spotlighting it today and of course Sarah works with Grad, Green River Area Development District, which is based in Owensboro, but these services are offered all throughout the state so even if you are not located in Grad's territory, you can take the info that you gain from Sarah and apply it to your area because chances are even if you don't qualify for this program you probably know someone or multiple someones who would qualify for the program whether they be in your family or friends because I tell you this program has has benefited countless individuals but not nearly enough due to the the knowledge gap but we're going to do what we can to change that this week and we're so glad you're here because you're going to learn a lot and enjoy the heck out of the learning process so we're going to get to Sarah in just moments but before we do I do have as per usual a bluegrass brain buster we try to do one of these on a weekly basis so you'll get the question now while Sarah and I are doing our thing you can think on it but don't think too hard we don't want you getting distracted and missing pertinent information that you would definitely regret missing and we will clear up any confusion with regards to the answer in the program's final segment so since we are spotlighting a health care hero this week I wanted to know what is the oldest hospital in the state of Kentucky again which hospital has the distinction and it's still in operation by the way which hospital has the distinction of being the oldest in the commonwealth of Kentucky you get the wheel spinning we will let you know in the closing minutes of the show Sam Moore now presents a kind and courageous health care hero the Medicaid waiver program has really meant a lot to a lot of people and it could mean a lot to a lot more if they only knew about it that is a big reason why we invited this special guest on to the the program today she is the director of waiver services with grad and if you don't personally qualify for this program like we told you up top odds are you know somebody or a bunch of some bodies that would whether they need you know special in-home services respite care supported employment you know this this program may be just the ticket to what you or those people you know are after and need so here to tell us all about how the program first came to be and the two waivers encompassed within the program and how we might qualify let's make welcome from the grad office in Owensboro KY none other than Sarah Duncan thank you thank you for having me this is a great program Sarah and I'm so excited to enlighten our listeners on it now you you proudly service its director director of waiver services over there at grad now it's based in Owensboro obviously but for those that don't know why don't you tell us the the counties that the Green River area development district includes Sarah okay we cover seven counties across the region where um kind of the the northwestern area of Kentucky and we cover Henderson Union Webster and Davis I think I've impressed you right with real those also so easily I'm sure you've done it plenty of times but anyhow this is a position you probably didn't know would exist in your early life but tell me about your career interests as a as a child and describe what fueled such career interests Sarah so really I had to think back on this Sam it's it's hard because I'm older but um really I remember wanting to be a marine biologist whenever I was a kid and then I realized I'd have to move somewhere else and I didn't want to leave Kentucky or Henderson so I decided to to just forget about that and then as I was at the community college getting my associate's degree and they gave me or let me take one of those career tests and that test told me that I should look into the helping profession so any profession that could help others is is where that led me and then of course that led me to my degree in psychology um from USI yeah so not too many marine biology openings in the uh greater Henderson area so you know it's nothing wrong with dreaming big but I'd say but I'd say that you uh ended up where you needed to end up for sure and that's a springboard into our next item here as you just alluded to you uh went to University of Southern Indiana as a college student after you graduated from uh from high school you said you majored in psychology so uh let's talk a little bit about that more so and elaborate on your studies there on the west side of Evansville along with the career exposure you gained to supplement the books there miss Duncan okay so you know I went to the community college for my first two years and transferred to USI and I got a bachelor's in psychology and then a minor in sociology and while I was taking a class at the at the college there and we had a man come in and speak to us about the southwestern Indiana mental health center and he talked about some of the jobs that they had available one of those was a mental health technician and so I applied for that position and got that and worked part-time while I was getting my degree and pretty much what that was is we worked in group homes for people that had been released from the state hospital and had mental illness and that that job really showed me my passion for working with those that needed extra help and support and to be able to stay in their home and community as long as possible now talk a little bit about your uh career endeavors you said you worked with um southwest indiana mental health while you were in college so talk about your career endeavors between that and your current gig with grad as director of labor services so once I graduated with my degree from usi I stayed with southwestern indiana mental health center and was a mental health case manager so that was a little more um where uh the individuals lived in the community in their own homes and they would have a case manager come in and check on them kind of help guide them help make sure that they they had everything that they needed so they could continue to stay in their home and after that position uh and I had a friend whose dad was on the board of the community or henderson county senior services and so I had applied for that position so I would be closer to home and I got that and in that job I coordinated senior services for henderson county through the gathering place okay so you stayed home that position yes and so that position is how I was connected with grad because grad does senior services and they are kind of the oversight for the gathering place and they provide the funding for that program so I became a case manager with grad to go in and get the assessments and home home services set up for them and that would help with like the meals on wheel and other in-home supports um for those that need it so that's kind of how I came came to grad and was introduced with grad and then I have been at grad for 19 years 2006 is when they started talking about this new program which was the consumer directed options program for medicaid waiver and that is that is how I got involved with program I volunteered in addition to my aging case management cases and it just exploded after that we you know we continued to get new people it was a program that was very needed in our region and it gave people a lot of flexibility as far as who they could they could have provide their care and so currently we are serving 750 participants in our seven county region so it's pretty crazy to think we started with just a few and now we we've grown to 750 yeah that talk about explosion so you've so you've been involved um with um you know the waiver program in some form or fashion since its inception at um let's say that was 2006 how long have you been its director as director and that's more recent that's been within the last three years we um we were part of another department social services and we currently have 24 staff that do the waiver services through grad so once we got up to a certain number they decided to to break off and let us have our own department so that's how that was created about three years ago well I'd say you're more than qualified with your wealth of experience in in case management and work with senior citizens I mean it pretty much uh runs the the whole gamut to say the least so uh way to go I know what you know monitoring 24 employees gets uh you know I'm sure it makes your head spin from time to time but it's it's well worth it and I know it's I know it's rewarding for you in the end now Sarah before we dive into the nuts and bolts of the waiver program and its potential candidates uh you know we talked about this a little before we went on the air your typical day-to-day responsibilities as its fearless leader I know those very you know sort of depending on the day but that's that that's a good thing because it it prevents boredom and as they say variety is uh is the spice of life so uh you know talk talk about the variations that uh that you enjoy uh you know from day to day often in your role as director of waiver services well fortunately I have amazing staff um if I didn't have the people that I have my my day-to-day responsibilities could be a lot more difficult but um you know we together as a group we problem solve a lot there's a lot of supervision and you know we will have different situations come up that that may be new that we've not dealt with before or it may be something that we you know deal with all the time so it's a lot of of just working together problem solving helping each other and we work as a as a team you know if somebody needs someone to go out and do a home visit then anybody's willing to jump in and do that so um I have to say I'm very blessed um with the staff that I have because they're all amazing and we wouldn't be able to do it without them for sure it just goes to show that uh team chemistry is uh important in the workplace uh as much if not more so than in sports right definitely definitely yep and uh your office is is proof and it's great that you have that uh camaraderie you know among the employees and that everybody is is willing to make each other's lives easier with a a common goal in mind that's that's what it's all about Sarah so why don't you discuss uh the in the inspiration behind this medicaid waiver program and the manner in which it first came to be back in 2006 so the the purpose of the medicaid waiver has always it has existed longer than 2006 but it didn't have that consumer directed options portion that I had mentioned so traditionally the medicaid waiver is to provide in-home services to those that would need to go into like a nursing home or possibly go into a facility if they didn't have someone help them with their day-to-day task so medicaid was looking at it and realized that people should be able to make choices in their lives they should have freedom and who and how and when and where the care that they receive is provided so that's how in 2006 they got the they started consumer directed options which is now referred to as participant directed services so sometimes you may hear people refer to it as pds but what that does is that allows the participants to hire who they want to provide their care and our agency takes care of that payroll processing making sure that they pass the correct background checks and then making sure they're paid for the time that they've submitted through the medicaid program so it it has it's been a blessing to many people because you know there's a lot of people that didn't want an agency to send somebody into their home they would prefer it to be someone they already know and are comfortable with so that has been the the biggest part of this program has allowed that flexibility for participants to get the services that they need so they can stay home yeah stay home a lot longer than than maybe they would be able to otherwise so they choose who they want your organization gets them paid and you know it's it's a great hand-in-hand joint effort there so 2006 is when the you know the participant directed option first presented itself how far how far back do waiver services go do we have any idea on that one sarah you know i honestly i should have looked that up but i feel like they've been around for a long time they just weren't accessed as much because people just didn't they didn't have that comfort with being able to choose somebody to come provide the service for them yeah but we do still have people that that works well for so we also have clients that receive in-home services from agencies we do case management for that as well so i want to make sure that people know it's it's not just you know one way we can we can make sure some people switch back and forth between the two they may have an employee that's not working out for them and they don't want to mess with it and they want an agency to send somebody and so we can do that for them as well okay so so if they want an agency to send somebody you know you can you can handle that as well either way if they want to choose their own or or uh you know take their people as chosen by you either way is is fine and either way works now um do we do we have a a general gist of the average age for your participants there at least in the grad region sarah oh gosh we have and that's one thing that's great about this program is it's not based on age this program we will have infants um all the way to i think at one time we had a hundred and in in the program so there isn't an age i would say probably the the majority depending on what and the traditional services which is what where that agency sends a staff person in typically that's a little older age group because they don't want to have to hire somebody and oversee the payroll and submit time sheets for payment and then the participant directed services may be a little younger younger ages and then it also kind of depends too if you're in the michelle p waiver or if you're in the homing community based waiver um because those are a little different requirements based on um you know based on what that person's diagnosis is qualifications are are a little different and we'll get to those here uh in just minutes as well but it's great to know that you know between zero and and 110 you know that's a a wide and flexible age range and you always have outliers but it's you know there's always exceptions to you know the average ages of people that need certain services so it's great that in many cases this waiver services program is able to accommodate these individuals now within this commendable program sarah as you alluded to we find two different waivers for which individuals may perhaps qualify so why don't let's first describe the impressive variety of services available we'll talk about the michelle p waiver momentarily but let's start out with the home and community based waiver okay um one thing is there are actually grad only does the home and community based waiver in the michelle p waiver but there is also other waivers that the state does that different agencies do and one of those is called the supports for community living waiver one is the acquired brain injury waiver and then another one is model two waiver which is for people that are event dependent and that's done through more of like a private duty nursing agency so there are a few more waivers but grad just doesn't provide the case management for those we do the home and community based waiver and the michelle p waiver but the home and community based waiver for people that are diagnosed with physical disabilities and and and that disability has to result in them not being able to perform daily activities in their home so they may need help with grocery preparing meals medication management help with bathing grooming transportation and and and with you know with that program their caregiver can provide all of those different tasks for them within that home and community based waiver okay well that's neat and they can of course choose their their caregiver if they want to or have it provided now you said over 700 some otter in the waiver services program altogether there grad do we know about how many of those uh benefit from the home community based waiver is it about 50 50 or slightly more honestly the home and community based waiver is where most of our growth comes from because up until recently there's not been a waiting list for that so just anyone that needed that service was able to to get that through the um eligibility enrollment process so i am i'm thinking we're probably around probably around 450 in the home and community based waiver um you're gonna make me do math sam i'm not good at math um no i would have thought that math was your ultimate the only reason you didn't major in it sarah's because you didn't want to show up your fellow classmates you're correct you're correct the michelle p waiver we've got around 200 and then the traditional home and community based which is where that agency staff comes in we've got around 100 in that program okay so the vast majority of your clientele falls within the home and community based compartment which is great that that it's thriving and it definitely you know justifies the the existence of that particular waiver for sure but let's switch gears now shall we to the michelle p waiver which even though you know those participants are in the slight minority at this point that could change especially as uh as word gets out about this particular waiver and uh it's many noteworthy benefits so let's talk about the services available through the michelle p waiver there sarah okay so the michelle p waiver is for those that are diagnosed with either an intellectual or a developmental disability um a lot of those also may have a physical disability but the primary diagnosis has to be intellectual or developmental um with the intellectual their iq does have to be below 70 um in order to be eligible for that so it's a little more stringent requirements than the home and community based waiver is um they they honestly have very similar services between the two waivers but michelle p kind of focuses more on the community living side of it so the the purpose of the michelle p waiver is to help help individuals learn and grow and um teach social skills by taking to the movies or taking out to dinner and work on finances and how you pay for your meal how you tip how you communicate with the server so um it it also provides behavior supports which um would be if there are any behavioral issues there is a behavior support specialist that would be able to either come to the home or that client could go into that agency and they will assist with um you know trying to figure out why those behaviors are occurring and help train the family to learn how to how to change those behaviors or how to work with those and then supported employment is another service that's offered um through michelle p which is a great service um to help individuals you know get in the community and help help them learn learn a job and be able to work that is very valuable indeed so whether they be business or pleasure this michelle p waiver helps work with the clientele on proper etiquette to yes they'll be able to not only enjoy those but communicate effectively and have the essential skills and tools they need to live life to the fullest bottom line so um anyhow you know you you've basically touched on the the qualifications and they they vary between the two waivers obviously and so you know depending on which waiver you're trying to investigate or that you're aiming for you'll you'll need to meet different criteria but um how does how does one assess whether or not they are eligible for for one of the waivers how do they go about determining whether or not they meet the criteria so and the waiver programs are based on both the income and the need so pretty much medicaid realized that there are individuals out there that's income may be higher than regular medicaid would would assist with so they developed the waivers to where if you have your income within a certain certain amount and your um you have that need it puts you in a different category and it just goes by that one individual's income so a lot of the time we will have kids in the program whose parents you know are not on medicaid but that child is medicaid eligible because they have a need for in-home services and their income it goes based on that one person's income which with most children is zero so um what i always suggest for people to do is to call our office um and talk to our aging and disability resource center and we have a 1-800 number and then we also have just a regular number for for people to call in and speak with that person so if that person just talks to them about what their needs are and they may be eligible for other things that grad knows about or that grad serves does through through our office and they can actually refer them to any of those programs to to help them get services that's neat so there's an 800 number they can reach out that way talk to an expert so there's not necessarily um a case manager that comes out and and does an assessment thing i know you got case managers but i guess they don't technically perform assessments yes so our agency does not do the assessments for the programs that is done by um the home and community-based waiver assessments are done by the state so they have a nurse come from medicaid that does that assessment and that's so it's it's um conflict free they don't want us to do the assessments and then also do the case management so once that assessment's done it's done for the home and community-based waiver by a nurse at the state and then the michelle p waiver is done by our comp care center which is river valley behavioral health so they have an assessor that comes out and does that and then once that assessment's done and they've met the criteria for the program based on their needs then that's when they would reach out to us and we could assign a case manager to come out and get get the services started i see so once the assessment is complete whether it be from river valley in the case of michelle p or the state in the case of home and community-based then uh the uh the clientele would contact grad and get the ball rolling with the services and you know personnel that they need to assist them with their their day-to-day tasks and is there uh an application or anything else in the enrollment process that we need to be aware of yes so they will have to apply for medicaid through the department of community-based services and they'll make application there which when they contact our office our agent and disability resource center staff would let them know that if they don't currently have medicaid they need to contact the dcbs office and then they give them their phone number to reach out and go ahead and start that application process and that's where they're going to ask for their resources their assets it gets confusing because sometimes they um you know if it's a household what they're going to do is they're going to ask for all that information for the household and then they're going to determine they don't qualify because they're over income but then they're going to look at oh this this individual in the household has has extra needs and needs in-home services and is going through the waiver program so that person is going to qualify for medicaid alone so it gets kind of confusing in the beginning by having to do that but um they would definitely you know need to reach out to the department for community-based services and then while they're doing that portion grad can be doing the the needs portion where we do an application and kind of ask them what types of services are you needing what what are your needs at home and then those two things kind of meet up at the state level and then that will give them a slot for the waiver program now unfortunately as of right now both of the waivers have a waiting list so what that means is the state only has a certain number of slots available for funding for these waivers and right now all of those slots are full and um i know that they did allocate additional funding this year so they've added an additional 250 slots i believe for both of the the waivers that we work in but there still is um we probably have 300 people that we're working with right now on on getting their application entered and getting them on that waiting list so it's it's very difficult to to determine that time because it is based off of as people drop off of the waiver programs then the state adds new people so it really just kind of depends on and it's based on the state so you could have somebody move out of Louisville and that slot opens up and it comes to somebody in our region because that person is the top one on that waiting list so it's you know hard to say exactly how long these 300 some odd people will be on the waiting list but the bottom line you just have to have those applications complete one with grad and if you're as part of that particular district and one with the the state and of course if you're not on medicaid like Sarah said contact department for community-based services and they'll get you rolling on that and you know after you know that monotonous but well worth it process is complete you can get on the waiting list and you know with any luck your opportunity to you know exit the waiting list and start receiving services in case management will be a lot sooner than that you might think well Sarah I know this has been very educational and informative we've all learned a great deal and I know that a lot of our listeners will investigate this further either for them or one or multiple somebody's that they know and we're going to talk about now how you might suggest listeners educate themselves further on this program you did mention the aging and the disability resource center that's a part of grad and there is an 800 number there do you have that 800 number handy Sarah I do it's 1-800-928-9094 or you can call 270-926-4433 and speak with someone from the aging and disability resource center okay so I guess that second number the local number there is just the general grad number correct correct okay and you can ask to be transferred to the the aging and disability resource center and one of their experts will help you now I will also link listeners to the waiver services page on the website which by the way is grad dot com and if you'd like to reach out to Sarah with any questions that you may have I know she'll either be glad to answer them or refer you to the appropriate individuals to answer them and your email address is sarahduncan at grad.com right that's it and it's sarah with an h sarah with an h yes and all one word no spaces or caps anything like that s-a-r-a-h d-u-n-c-a-n at grad.com well thanks so much for coming on with us and enlightening us on this program that has meant so much to so many and will mean so much to so many more in the future it is thriving and I know that for that reason it's not in danger of going anywhere well I have thoroughly enjoyed it Sarah I hope you've had fun yes thank you so much Sam I appreciate it well it's great to educate ourselves through you on this program is this your first podcast there I'm just curious it is it's my very first see so we're making a little history I love making history with with my guests it always makes me feel just a little more warm and fuzzy inside well Sarah will let me in how's that okay sounds great Sam Sarah Duncan is a blast and filled with great information now please ladies and gents by all means share this show with those you know who may be potential recipients of this waiver services program or perhaps they may know potential recipients more so than you do and I will link you to the waiver services program page on grad's website as well I'll link you there in my show notes so that all you will have to do is hit that link and you can find out additional information to you know supplement maybe even reinforce what we discussed today and I will also include Sarah Duncan's email address in the show notes as well sarahduncan at grad.com and you can reach out to her there as well with questions that you may have or if nothing else just to let her know that you heard her on blabbing in the bluegrass I know that it would make her day because she certainly did not have to come on there are plenty of other ways that she could have been spending her precious time so I'm so glad she spent some with us today now if you know a health care professional and I know you do who has meant a lot to maybe not just your family but plenty of others you need to let me know about this individual or these individuals because chances are there's a great story there that we all need to hear and you can do so via email my address is bluegrassblabbing at gmail.com b-l-u-e-g-r-a-s-s b-l-a-b-b-i-n at gmail.com and you can use that same email to let me know about your favorite local restaurants or musicians authors athletes educators healthcare professionals I mean our topics may be sort of all over the place but the common thread is they all have connections to the commonwealth of Kentucky and they all help to make it such a great place so don't hesitate to reach out to me if you don't via email please do via the blabbing in the bluegrass facebook page and while you're there make sure you like and follow it if you're not already because any show that I've ever done is there and if there's a special guest that I've had in the past you'd like to hear but maybe you can't find the show because we've done so many and maybe it is hiding from you deep in the archives there well that's no trouble just let me know about that via email as well bluegrassblabbing at gmail.com let me know about that special guest give me the name of the guest or perhaps the show if you can and I will respond to you with a link to that particular program and I'll do it for free of course you're listening for free bottom line you don't need to be concerned about money okay and while you're on that facebook page keep your eyes open for teasers that we put out for future show plans we uh do that about once a week or so and of course you can make comments and leave those messages so next Wednesday is October the 23rd many of you will be shopping for Halloween candy and costumes and getting yourself in the spirit but while you do make sure that you take us along because you are the glue that keeps this show together and when you are absent it is noticeable trust me so make sure that you come on back keep my guest and myself company we value your presence more than you'll ever know troops so before we put this thing to bed because mischief is getting a little restless over there let's reveal the answer of the bluegrass brain buster which we brought to you up top at the beginning of the show it is of course a health care themed question because we had a health care hero spotlight on the show today and I wanted to know which hospital has the distinction of being the oldest hospital in the commonwealth of Kentucky well it's u of l hospital u of l hospital has a a rich rich history dating back 201 years actually all the way to 1823 it was originally known as a Louisville marine hospital and uh it its purpose was to treat the sick and the injured who were on their way down the Ohio river those crew members were forced off their boats in many cases due to falls of the Ohio and they were left there with uh you know no home no place to go and so uh this Louisville marine hospital treated them with uh you know whatever they needed and to help to provide them with uh you know a place to get on their feet if you will and uh get themselves established if they needed to but anyhow a little later down the road in 1911 this hospital housed the world's first emergency room how about that that was 1911 that 30 years later in 1942 it was renamed Louisville general hospital wonder if that was the inspiration behind the soap opera general hospital probably not but anyway it was Louisville general hospital from 42 up until 83 when it moved into a new facility and became the university hospital and it was later renamed u of l hospital that's where we stand today but that is the oldest hospital in the commonwealth of kentucky originally named Louisville marine hospital when it first opened in 1823 now u of l hospital the oldest one in the commonwealth so come on back next week for another fascinating brain buster a whole lot more fun and excitement with a great great guest in the meantime make sure you listen and subscribe to the show without paying one thin dime via numerous podcast directories these include apple spotify verbal amazon music iheart radio boom play even a few others and i tend to be amazed at how often new directories are popping up so if we're not yet a part of your favorite directory i may not be familiar with it so let me know what that is via email and or facebook rest assured i will do all i can to make sure that blabbing in the bluegrass is accessible to you via that particular outlet as soon as humanly possible so until next time you know darn well what i'm gonna ask of you keep laughing keep smiling make sure you investigate the waiver services program and keep blabbing in the bluegrass because we're blabbing in the bluegrass there's nothing here to hide because we're saying it with pride just a blabbing in the bluegrass with knowledge of the state you're sure to appreciate yes we're blabbing in the bluegrass where musicians furnish talent and great whiskey cools your palate just a blabbing in the bluegrass with a fit for every taste precious time is not to waste 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 demandanddisrupt 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 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
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Carissa Johnson and Keith Hosey interview Mark Johnson, a long-time powerhouse for change in the disability community. Mark and the Disability Caravan recently visited Carissa at the Murray office of the Center For Accessible Living. He talks about the early days of ADAPT, where the movement is now, and gives ideas for how we can get where we want to be.
To learn more about Mark Johnson, visit https://newmobility.com/person-of-the-year-mark-johnson/
Learn more about the Latonya Reeves Freedom Act
Visit the ADAPT Virtual Museum
<img alt="A bland-and-white photo of activist Arthur Campbell Jr. being led away by the police" src="https://drive.google.com/file/d/1qANak9Mcc4EUhJeckid9eDDH0VAXttj1/view?usp=sharing" title="Arthur at demonstration credit Tom Olin" />
Learn more about the Disability Caravan
Watch the movie, When You Remember Me
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.
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, Connecticut.
Thank you for joining us.
My name is Kimberly Parsley and I am joined today by Carissa Johnson.
You all have heard her before.
She's been on the podcast as an interviewee and an interviewer, and that's what she's doing today.
She is, she conducted our interview today.
So Carissa, tell me who we're going to be hearing from.
We are going to listen to Mark Johnson.
He is not one of the original 19 of ADAPT, but he joined the organization not long after they started.
So he is kind of one of the OGs a little bit, and he's been involved in disability advocacy since the 1970s.
You'll hear a lot about what he did with transportation and the city in Atlanta for, that happened right before the ADA was signed and just so many different things.
He had a plethora of information.
So I was super excited and lucky that I got to ask him to do this.
Oh, wow.
Okay, great.
So tell me, you mentioned ADAPT and we have talked about ADAPT before.
So tell us again, what ADAPT is.
ADAPT is a disability activist organization.
It started as a movement to help individuals fight transportation issues on buses.
And Mark will talk about some of that.
Once that issue was sort of resolved through the ADA and the civil rights, they have now moved on to home and community-based care and wanting that to be a civil right for folks.
So they do things like demonstrations and sit-ins and activism for individuals with disabilities.
And they actually do have an online museum.
They started in the 70s, so you can see articles and different things that they've done.
I would encourage people to check it out and I'm sure we can link it in the show notes.
Absolutely.
That's exciting.
And now we have a chapter of ADAPT here in Kentucky, Keith Hosey, who joins you in the interview.
He started the Kentucky chapter of ADAPT and I believe they've already, they've been doing some stuff, right?
They have done one demonstration, I believe, and they hope to do more.
They got individuals from the national organization to come down and do the training.
And as part of the training, I think it was this past year, they actually do a demonstration.
So it's more than just sitting in a classroom and here's ADAPT and here's what they do.
No, they throw you in the deep end.
They are doing an administration right then.
So Kentucky does have a chapter now, which I'm really excited about.
That is awesome.
Mark talked about, I hate to steal his thunder, but I'm a fan girl during this episode.
He talked about, you know, how until there's an emotional link, there's not any room for intellectual change and that's what ADAPT tries to appeal to.
It tries to appeal to the emotions of folks and you know, it's not like they started not doing their traditional channels of talking to city representatives and state representatives and trying to make the changes that way.
They did those things that, you know, sometimes we've seen in our history, it takes more than that and that's what ADAPT does.
That's awesome.
And you met Mark, how?
How did you meet him?
I really fell into my meeting with Mark.
I got a call from Patricia Puckett.
She used to work at a disability independent living center in Florida and she actually retired in Murray.
So she and I became friends once she moved here.
She donated some stuff to us, we talked on different things, but she says, hey, I have this friend and they're bringing this caravan to Murray and actually they're spending the night with me.
She said, this caravan is all about disability justice and history.
Would you like to have an event at your office?
And I said, heck yeah, of course I would love to have an event in my office.
So turns out what I didn't know is this caravan was scheduled to go all across the country.
Different places, different organizations, different independent living center.
They went to almost every state and their hope was to bring light to what they're currently advocating for the Latonya Reeves Act and to talk to individuals with disabilities and hear their struggles and just, you know, they had a video that they showed on some disability history and also on the Latonya Reeves Act and they stopped in Murray, believe it or not.
So that's awesome.
I didn't know I was talking to, and I use their quotes, the Mark Johnson until he told me, he said, you know that this is right.
And I'm like, no, you know, Mark Johnson is just an ordinary name.
You hear it every day, anybody could be named that.
And I Googled him and my jaw dropped to the floor.
And now Mark's going to know that story, but anyway, that's how I met Mark.
His brother drove the caravan and he helped organize that and also the bus that went around for the 25th anniversary of the ADA.
Wow.
That's exciting.
Exciting stuff happening in Murray, huh?
Yeah.
They also stopped at Louisville.
So our main office got a stop.
They stopped at the Breyer Museum up there and did a, did it in a tour as well.
So, Oh, okay.
Okay.
Cool.
Now the only two places in Kentucky, they stopped.
Oh, wow.
Yeah, they did.
Murray.
I couldn't believe it.
Now what is the Tanya Reeves Act that they were talking about?
That act is to, it's basically the way Mark described it and the way the video described it.
This individual wanted, she basically wants to be in her home and we've made some movement with Omstead, but it's not a civil right for individuals with disabilities to have home and community-based care.
Yes, some states have some things in place, but it's not a civil right, believe it or not, in 2024.
So that's what the Tanya Reeves Act hopes to achieve.
And so what, what, what we're saying with that is that if it's not a civil right, that you can age in your home, then someone else can basically say that you need to be institutionalized, right?
Exactly.
Whether you want that or not.
Exactly.
And that's a sad, sad thing.
It is a sad thing and so it is a sad thing and it is an infuriating thing because you're right.
It shouldn't be that way in 2024.
Well, people should have the right to live where they want to live despite, you know, we should have those supports in place, but we don't.
We don't.
It still takes people organizing and unifying to get these things done, doesn't it?
Yes.
And that's what ADAPT is doing.
One of the things that Mark Dawson talked about that I really fell in love with, you don't hear me a lot in this interview because I'm just in awe of everything he said, you know, I don't feel like individuals are as passionate in the younger generation as they were in this generation of individuals with disabilities because they have so much now compared to what individuals have before.
And he talks about in his interview about how a lot of individuals think, you know, they just assume we're unified as individuals with disabilities.
He talks about us being a part of diversity and yet people don't, you know, it's just the group of individuals with disabilities.
He says we need to mobilize more.
So advocacy doesn't necessarily have to mean you have to go on a demonstration of ADAPT.
Do something.
If you want to organize around disability arts, do that.
If you want to write a book, do that.
If you don't find your niche and find other people with that niche and do something because, you know, it's going to take that change to continue to, to make strides forward.
And I'm just scared that people aren't doing that.
You know, that's, that's one of the reasons that we decided to start a podcast is because we were afraid that as the generation who fought for our civil rights ages and maybe becomes less, less active in the movement, we don't want their stories to be lost.
We don't want to forget about their struggles.
And I think one thing we have learned the hard way is that if we don't fight for the rights we have, those rights can be taken away.
Absolutely.
I mean, look at, you know, how they've tried to plug away at the ADA, you know, saying, oh, mitigating measures, what could that be?
That could be glasses.
You're not disabled anymore.
You know, all of that kind of thing and people can chip away at what they've done.
Yeah.
So we have to be, we have to be constantly vigilant and you're right.
We have to be out there.
We have to be seen.
We have to, we have to make sure the community knows that when we talk about people with disabilities, we're talking about people they know, right?
Your neighbors.
And I know I'm in a rural area.
I hear all the time from consumers, you know, I'm just one person.
What can I do?
All right.
And that just makes me so sad because as long as you have a voice or some other way to communicate, use it.
Do something.
So I'm glad we can unify that way.
We can mobilize that way.
Absolutely.
Absolutely.
And demand and disrupt will be here.
Absolutely.
Absolutely.
All right.
Well, now we are going to hear your, your and Keith Hosey's interview with Mark Johnson.
We are here with Mark Johnson, one of the founders of ADAPT.
He's done several things since then, and we're here to hear about some of his stories and some of the importance of disability and what he's been involved in and what we continue to be involved in.
So welcome, Mark.
Thank you very much.
I want to thank you and your group, you know, for the work they did there in Kentucky around the caravan.
But also, I think finally, of Mary Johnson, who, you know, did the Ragged Edge and the This Way Rag and think, I think Blueville, I think about more than horses.
And, you know, in the other city that it stopped in was Pat Puckett, I used to obviously be the executive director of the Georgia state fight in the council.
So, you know, congratulations on the work you all did there and we have an opportunity for you next July.
Awesome.
And then we're also here with Keith Ozzie, the Roving Reporter.
Hey Mark, it's a real honor to have you here on the podcast.
And I'll just take a moment really quickly to plug the Avocado Press since that is who our sponsor is for this.
And Mark was kind enough to just randomly mention the Ragged Edge and Disability Rag, which were published by Avocado Press.
Well, you know, it's interesting because, you know, they did a great, Mary and Terry Sue Hartman did a great guide on, you know, about the media.
And then Mary actually was the first really public, you know, back then you belong to an organization and you've got a publication and you couldn't wait until the end of the month when you got the publication, you know, now you just grab your phone.
And a lot of organizations struggle with that transition, you know, what made them relevant back then was information.
And then all of a sudden when you go, well, good grief, people can get information different ways now.
And right about the time Mary was doing that, you know, Lucy Gwynn was doing the mouth or actually the magazine initially was called This Brain Has A Mouth because Lucy had a brain injury and she started taking on the medical industrial complex that, you know, where she got a rehab and she was afraid that they'd come after her.
She got so much incursion support, Lucy, you know, then, you know, said this brain and mouth called mouth.
What's interesting about that is, you know, I know we're going to talk a little bit more about the caravan, but the caravan goes to Amherst University of Massachusetts next week and her, you know, some of her, you know, main stories will be on display.
I mean, they just like with the Ragged Edge or this way rag, I'll just say that for now, you know, they're both now been digitized and so they're not lost.
You know, there are a few people like Marsha Katz out there in Montana who literally have every print and copy.
So great, great work back then because it was like, you're sure we're going to get mainstream press to cover our stuff and newsletters were good.
You didn't have the internet, well, in the context that we do now.
So yeah, I found memories of Louisville, including I went to a wedding there and went and I didn't drink the whiskey, but someone else did.
So you mentioned Louisville, you're no stranger to Louisville.
I wanted, and I'm pretty sure, you know, some of the big names in Kentucky that disability advocates know, of course, Arthur Campbell Jr. is still involved in advocacy here in the state.
Cass Ervin involved for a long time, they, I know that they were involved and I'm just going to jump into ADAPT because I want to, if that's all right.
The only ADAPT demonstration that's ever happened in Kentucky prior to this year was, it was actually on Derby Day here in Louisville and they blocked the buses on the most important day in Louisville.
I know that Arthur was involved that I'm not so sure, I'm not positive about Cass, but I know that several other adapters had traveled into Louisville to support that, as well as, you know, Arthur kind of leading the local troops.
Yeah, we, I got married and I met Susan, my wife, in the late seventies in Charlotte, North Carolina.
That's where I grew up and that's where, you know, I was there from like the third grade till the end of college and then Susan and I started dating and she moved to Colorado and then we stayed in touch and decided to get married in North Carolina then I moved to Colorado.
So when I went out there, it was 1981 and some of your listeners might remember the, you know, when Reagan got elected, there was this lawsuit called APTA versus Lewis.
Secretary Lewis was the Secretary of Transportation under Reagan and they won, I mean, the APTA American Transit Association won and they're the trade group for all the transit systems around the country and they won and therefore the mandates in 504 for lists on buses went away and what you had is the local option.
So each community could decide without our input, by the way, what was best for us and so Denver had been getting lists on buses for what they call their local routes, you know, around the metro area there, but they had what they called express buses and the express buses are the ones in the suburbs, so if you grab an express bus, it was a straight shot downtown.
If you got in a local bus, you had to stop at every stop.
So it was a difference between a 20-minute ride and an hour and 20 minutes, right?
So I got involved, moved out there, went to work for an independent living center that doesn't exist anymore called HAIL, Holistic Approaches to Independent Living and at the same time there was the Atlantis community, which is over 50 years old now, and Wade Blank and some others had started Atlantis, there's some, it was great, if you haven't seen it or heard it, the Gang of 19 documentary done by Denver Public Library is a great documentary to watch.
It tells the history of the heritage house in Atlantis and the beginnings of ADAPT.
So when I moved out through the Gang of 19, they had already done their stuff in 78, they had already done actions like go around town and mark curbs that needed cuts and they busted them up with sledgehammers for press conferences and all that kind of stuff and of course that wasn't, they didn't immediately go do that stuff.
They tried the normal call, attend meetings, write letters, stuff.
And so we started getting calls around the country about how are you getting lists on express buses and back to every new bus has left and we said every tool in the toolkit, meaning keep doing what you're doing but you might need to do some more.
And we got a grant and the grant would pay for folks to come to Denver for a week ago to them.
And of course it was not a classroom, the first half a day, well actually first day was classroom, it's called the Pitch Fort, if you go to ADAPT virtual museum, ADAPT has a virtual museum that made by Stephanie Thomas out of Austin, Texas and actually is housed at the University of Texas in Arlington is where the archives are.
So we sat around a room and we went over to the National Council of Independence was having a national meeting, one of their first ones because they were just a new organization of the centers because it started with like 11 independent living centers back then.
And they were really interested in that being a membership benefit, which was a little disheartening.
So we went over to the Lannes and a guy named Bob Conrad, he's still alive, one of the original Gang of 19 came up with the name American Disabled for Accessible Public Transportation.
We'll say that five times fast immediate person, and they begin to write down ADAPT.
And then we did the lifts on buses from 83 to 90, we chased a lot of people, why do you go to San Francisco?
Aren't they doing the right thing?
We said, it's not about San Francisco doing the right or wrong thing.
It's about after this meeting there.
And it took us to Atlanta and Chicago and it took us to St.
Louis and it took us, well, actually, we went up in Canada one time.
We did not go to Hawaii, we didn't have enough money to do that.
But we chased them and until obviously, your listeners will know, you know, July 26, 1998, we signed a law and said every new bus should have a lift.
And the other thing that people don't really remember is there was money in the ADA that did a study about the feasibility to put lifts on over the road coaches.
And we all had to live by the results of the study and the study was done by DOT and Urban Mass Transit Association and the results said it's feasible and you don't lose revenue.
And so when you get on a Greyhound or a tour bus or a shuttle, if you're running into problems with lifts on buses, then they're not compliant with law.
So yeah, so that was the beginnings, you know, of ADAPT, we came up with the name in 83, which makes us, you know, 41 years old.
And then we came up the new campaign.
So that was called We Will Ride and a woman named Elaine Kolb up in Connecticut wrote a song called We Will Ride.
And then we came up with Free Our People and then she wrote a song about Free Our People and then she wrote a song also about Not Dead Yet.
There's some groups that people don't, ADAPT is not an organization.
It has no president, it has no executive director, it has people like Arthur who came in those 80s sitting in his chair like he doesn't really sit in his chair.
I mean, if you describe the audience, you hadn't met Arthur going, you know, are you going to sit up or lay down or get out with Arthur was one of the best is scooting out of his chair and laying in front of a bus.
So he was a burst of energy.
I know he got frustrated back then because media wouldn't interview him with his speech with his CP accent and it was frustrating.
I mean, it frustrated a lot of people.
They would interview non-disabled people because they really didn't want to approach disabled people.
And then they'd approach the good looking disabled people and then, but to get around to someone like Arthur who still has that board that my brother told me from my younger brother said he still has that board, Mark.
And I said, holy crap, you know, in the Jodi and sent me a couple of pictures of Arthur.
So fond memories, ADAPT is not a perfect organization, we've made mistakes, we've pissed people off.
Well, sometimes the right people, but what it is is Wade had a great quote until there's an emotional change.
No intellectual persuasion is going to work.
I think that's a phenomenal idea and thought, wow, what a bunch of history there.
I mean, just amazing to have lived through some of that.
I know Arthur had said, I think it was either 84 or 87 when they stopped the buses here.
And I want to go back to real quick, Mark, you said, you know, then in 1990 the ADA was passed and every new bus was required to have a lift.
I doubt that was a coincidence that that was in there, thanks to ADAPT.
Well, night is a good point.
In 1989, we were in Atlanta and we took over 75 Spring Street, which is the federal building that had Senator Johnny Isaacson's office in it.
And we took it over and refused to leave until we had a meeting with the OT in DC, right?
I mean, it's a lot of regional offices in places like state capitals like Atlanta.
And so they started dragging people out and then a series of phone calls were made to Justin Dart and Evan Kemp, who was a disabled and EEOC commissioner.
He's one of the ones on the stage when ADA was signed, you know?
So if you want to know what the experience of feeling vulnerable or if someone's 15 minutes late and I have an appointment and then I got to start the domino fix.
So it was a really, you know, 89, they stopped dragging us out, Bush called and said, Gordon Gray, who was like the attorney general, you know, stop, they have a right to be there.
And DOT flew in and we handed them, Bob Kafta from Texas, handed the language that wound up in the bill about listening on new buses.
And we weren't asking for every other, which is what an organization, the Paralyzed Veterans of America thought we were asking for too much and thought every other.
The paratransit users were complaining that if you do this, we're going to lose our service.
So the this way community on the outside, the average viewer thought we were unified, we weren't.
You know, we were not unified and we're still not with our most unified we've ever been.
But then at that sort of ships and emphasis to getting institutional buys removed from the long term services support system or home to convey service and that that campaign kicked off in 1990 in Atlanta.
There's a great, there's a great movie to watch.
It's called When You Remember Me, Fred Savage of Wonder Years plays a real live person with mustard history that was in the heritage house where Wade was hired.
Kevin Spacey of all people played Wade.
So Wade, Wade blank was way black in the movie.
Now I used to promote that movie until they got a little bit in trouble and then but it's a movie.
It was an ABC special When You Remember Me and we got to premier it at the action in 1990 Atlanta.
Oh, wow.
And part of the reason went to Atlanta was Louis Sullivan, Secretary Louis Sullivan was the head of I think they call the HEW back then Health Education Welfare.
And he was a graduate from Morehouse College.
Plus, you know, you know, getting rid of the institutional bias, which is about a civil right to community living, which we still don't have.
I mean, once we get the Latonya Reese Freedom Act passed, we'll actually have it so right.
But ADA, this is a rights bill, Olmstead, you know, nine years later, you know, move the needle with some but go to go call your state and ask for their own thing playing.
I bet they don't have one.
Our state may have one.
We've we've been in the news a couple of times about our lack of access for individuals with disabilities.
And that's, you know, something we're here in in Kentucky to just starting a new adapt chapter.
And so some of that is why we decided we needed to adapt.
And you said, I think your quote of Wade says the best is, I think you said Wade said it.
We need to have every tool in the tool belt.
Yeah, every every tool in the toolkit.
And until there's an emotional change, no intellectual persuasion works.
And it means when I could take a legislator down to the street corner and he or she could get on and I could we said, does that make sense?
It's called public transit.
Does that make sense?
You know, and then when you get in front of a bus and someone's going to be late to work, rightfully so they're pissed.
But then when they settle down, go, oh, so you don't even get to go to work because there's no way for you to get there.
Then you go, all right, so you're half an hour, hour, couple hour delay is a life learning opportunity if you choose to do it.
Now, granted, you know, Keith, there were issues with the early generation lifts.
Now you find ramps and lower rate kneelers.
There were issues with unions, right?
They were issues with time windows.
How long does it take to load somebody?
Does that delay their bathroom break a couple hours from them?
Because the scheduling was so rigid for drivers if they had a bathroom break scheduled at a certain time in the lift malfunction, then it caused a domino.
So not naive enough to think that, you know, that solved the problem.
What that did was made, you know, writing public transit civil right.
And in that when you have a demand for certain type of equipment, they it's supplied.
And that's why we're going to see airlines where Arthur, myself, others will not have to get out of their chair to fly anymore.
We're very close to happening that happening, Kelly Buckland, who was the head of national council living works for Mayor Pete, I still call him the secretary of transportation and regulatory wise, they've already written it down that that, you know, you know, renovating an existing plane.
So Delta Airlines has already come out with a prototype.
I was reading those articles.
I'm super excited about that.
And it's already published for public comment, correct?
Yeah.
Yeah.
So that's that's for the listeners that don't know the process in changing federal regulations or state regulations.
Once we're at a point where they're asking for public input, it's it's pretty close to the end life of that decision and moving forward with the change.
So that is that is pretty exciting for for individuals who fly.
You know, I think you get you still in 2024 get these misconceptions that, oh, you know what?
I don't think people with who use wheelchairs fly, do they?
I know many professionals who use wheelchairs and travel for work, as well as many friends who, you know, friend of mine is flying down is actually I'm sorry, he is driving to Key West this weekend because he wants to have his power chair and doesn't want the airline to do something accidental.
So instead, he's going to drive 21 hours.
Wow.
And I get that I quit flying.
I flew for a while by myself, which was and then I started flying with somebody.
And then I quit flying.
And I like say lived in Atlanta, you know, when we got married in 81, we our daughter Lindsey was born in 84 and then we moved to Atlanta to be closer to family.
And that's when I went to work in 87 for the Shepherd Center, you know, rehab hospital, where people would bring the spinal injuries and, you know, the Air Carriers Access Act and they charge people like us 50 more dollars to fly because, you know, they needed to help us and our planes, our chairs took up more cargo space.
So on the surface, you go, oh, yeah, they need to do more for you.
And you know, wait a minute, that's the cost of doing business that needs to be spread across all customers.
So the Air Carriers Access Act, a huge thing in our community, we don't believe in ourselves sometimes.
And we can sit around and talk about what, you know, every new house when the parts could have a no step entrance, if we believe it.
And Eleanor Smith started concrete change, retired, ended up being a retired school teacher, ran out of her house in Atlanta.
She's 80 years old now and did that for 25 years.
And so there is she called it visibility, you know, get in the house, get around, get in the bathroom.
You know, you know, lever handles are now more mainstream rocker switches for the lights are more mainstream.
They used to be custom items.
And so, you know, you want to call it universal design, which is Ron Mace, Jeremy gave it, disabled guy architect out of Raleigh, North Carolina, they actually have Center for Universal Design named after Ron Mace.
And then you can call it visibly, whatever the aging community, which I'm part of, because I'm 73, calls it aging in place.
Right.
You know, but you know, it's the same thing as it's right.
And but it makes sense.
Curb cuts help more than just wheelchair.
Yeah, it makes so much sense.
Thank you for mentioning concrete change.
I actually myself and one other coworker went to Atlanta in the early 2000s and were trained in the visit ability concept.
And and one of our coworkers were not my coworker anymore.
One of Carissa's coworkers, David Allgood, always explained it.
He's our he's the Center for Accessible Living's advocate.
And he always explains it as, hey, you know what, I want to be able to come over, stop by for the football game, have a beer, use the bathroom if I need to, right.
And leave.
Right.
Well, it doesn't it doesn't get much more fundamental than that.
All right, Chris would say when I used to go talk to homebuilders or home potential home buyers and go, how many of you like to live in a house that you could resell to anybody?
Anybody could visit.
If something happened to you like it did me 53 years ago, right.
You wouldn't have to spend a lot of money renovating and you could age in place.
But all hands were going to say, well, Mark Johnson running around saying make all houses his way is not the path to change what the path to change is.
If you answer those four questions in the affirmative, when you go to that custom home or to see what you you want your home to be, you go, well, I'm not interested in your house because I can't get to the bathroom door in the builder to set up the food chain.
And they go, well, maybe we need to widen the bathroom door, right.
In all our houses, I don't make it a spec home that requires a custom change.
Make it a standard that you do in all homes.
Oh, that's a great concept.
I wanted to talk to you because you've mentioned the point a little bit about, you know, we're not all united.
I know I hear a lot in my rural area, neck of the woods, you know, I'm just one person.
What can I do?
You know, we're not going to make any change here that happened to the bigger cities.
What would you say to that?
Well, you know, if you enjoy being powerless and go have your pity party.
I mean, when you say I'm nice about it, I go, I don't blame you for being pissed off that such and such not done like in the earlier years, 488, you know, the wire would have a swimming day on Wednesdays at two o'clock, bring your help to get you in and out of the pool.
Right.
Versus when is everybody else.
Right.
Right.
Well, all day long.
So you go, people call and I'm saying, are you registered voter?
Because I know you want to touch on voting.
Are you registered voter?
No.
What does that have to do with it?
I said, well, then do you know you're elected officials?
No.
And I said, well, guess what?
He or she doesn't know you.
They don't know your issue.
Nothing gets done.
You know, it's not a hard connection to make, meaning your legislature, some legislatures meet every other year, but they may go to your local church, they may own the grocery store, they may be the banker and in real change, sustainable change, I don't mean episodic change, which we have a history of real change occurs when that relationship occurs.
And that, you know, there's Mark, you know, how's it going, Mark?
And hey, Mark, what about that inclusive part we just did with the, you know, for the parking rack or hey, Mark, the beach mat or hey, Mark, you know, the pontoon ride to go look at the dolphins or so the young generation, which is cool, you know, the little 19 to 35 year olds who were, you know, born around after a day has basically have a high standard, which is good, you know, but understand the history, understand some of the tactics.
And you can't just write about it on Facebook, you know, you actually because you're sometimes preaching to the choir, right.
And it's important to take your message to the broader audience.
And that's what the Spirit ADA torch relay was in 2000.
That's what the ADA bus tour was in 2015.
That's what the caravan, which only has a couple more weeks of the road, it's in Providence, Rhode Island today, in Hyannis, Massachusetts on Thursday, and then Boston on Saturday, it's the 50th anniversary of the Boston Center for Independence.
That's what it's about is get out of your silo.
Let's come together, because we're stronger together.
And let's figure out who we want the next president to be.
And let's figure out what we want her to do, advise unsolicited comment, right.
But I, you know, Kamala Harris, as a senator, supported the Disability Integration Act, which means she supports Latonya Reid's feedback.
The vice president candidate has Gus, his son is on the spectrum.
I mean, folks, I read that, yeah, yeah, all valuable stuff to note.
But back to the voting, you know, it's registered all your rights to the voter.
But main thing is, too, it's all right, anybody, nonprofit or whatever, can call and say, do you have anybody that works on these issues?
We'd like to sit down with them and hear what the candidate's position on them.
That's totally legal, legal, not illegal, legal, to do surveys and publish the results again.
So I think the caravan, you know, you have my personal history of spinal cord injury, get married and all that stuff, and they have adapt something that I just happen to be in the right place at the right time with the right people, and then groups that have sprung out of that, and now you've got groups like R-A-M-P-D.org, which is artists, disabled artists, you've got FWD.DOC.org, or FWD.DOC.org, which is disabled people in front and behind the camera, Jim Labreck that did help do Crip Camp, all that stuff.
You're seeing new models and centers need to pay attention, they need to pay attention because if they don't, they're going to be less relevant than they already are.
You know, I want to just really quickly go back, Mark, you mentioned, we talked a lot here about, you know, adapt and the ADA and a little bit about independent living, and a lot of that is focused on needs, a lot of it is focused on transportation, housing, in such a way that sometimes I think those of us, those that are not disabled, lose sight that we are, as disabled individuals, humans as well, and we have humanity, and I love that you brought up, you know, now you have these groups, you have performing arts, you have D-PAN, Deaf Performing Arts Network, you have visual artists, you have dancers now with visible disabilities.
Not only is the Paralympics so much more prevalent in the U.S. now, but we have Olympians who are coming out, so to speak, with their disability and are comfortable enough to do that.
So I think too, when we talk about the future of disability and advocacy, it's important, as you said, as much as it is important for the legislator to know me, Keith, who lives in her district, it's also important for us to have those events.
The Center for Accessible Living in Louisville for many years had a juried art show, which oftentimes we had to fundraise for because so-called, you know, funding agencies were worried about numbers of people that had hours of personal care, which is extremely important for our community, but why wouldn't art be important for our community as well?
Why can't we express ourselves in a way, you know, that we're able to?
Three or four areas you hit on it, you know, for me, you don't prioritize, you mobilize.
So if you got people that want to talk about language, which is evolved, if you got people that want to talk about the lack of coverage, journalists, if you got, there didn't used to be Disability Student Service Offices at universities, and they clearly weren't disability studies programs, and all that kind of stuff's in place now, and some of those study programs need to be paying people like y'all to come tell your personal story and engage these students who are 18, 19, 20.
We don't do this stuff free.
I mean, our life experience has given us something that's worth something, and our books are good, our points are good, you know, Laura Hershey's Get Proud by Practicing, you know, or Johnny Crescendo's music out of Pennsylvania, you know, Tear Down the Walls.
I mean, this stuff is all, you know, the world is on fire right there.
You know, whether it's Ukraine or Sudan, or, you know, or Gaza, you know, it's, but you know, I'm a Christian, and my faith's kind of just said, there's a plan, and I just got to do my part.
And if I do my part and everybody else does their part, then you don't get caught up in egos.
And we all like to be think, we all like to be front and center.
We like to get credit.
But you know, we have not been together in 34 years.
We have not, you know, we unified some around the ADA amendments act, and there, the ABLE Act, which is, you know, the accounts, the Center for People with Developmental Intellectual Disciplines.
That ABLE Act really wasn't about us.
It was about some of us.
Right.
So we have an opportunity in 2025 to, you know, there will be a, this will be led March across the Pettus Bridge next July 26, on the 35th anniversary of ADA.
And it wasn't, it wasn't even the Garavan team's idea, it was the National Park Service.
Next year is the 60th anniversary of the March from Montgomery to Selma.
And 60th anniversary of Medicaid, 60th anniversary of Medicare, 50th anniversary of IDEA.
And I tend to be one of those who says, anniversary, you can have a birthday cake and same hat, whatever.
That's okay.
But the main thing you're doing is saying, you know, it gives the opportunity to come together and reflect and plan, strategize and organize.
And foundations now are finding us and are getting to give us more money.
Because we're about more than just direct service, we're about social change.
And that's attracted to a foundation or a philanthropist.
Not that direct services aren't necessary, they're critical.
But you get more direct services by sometimes the social change.
You know, I really don't think they they teach this.
They don't teach young people this.
We don't get a club, we don't get a period on disability history.
I didn't even know about it till college.
So I wish, you know, you said that we were we are a minority, we are a group.
But people don't see it that way.
That needs to change.
Well, Chrissy, you brought up the fact, you know, you know, this individual says I'm not, you know, what difference can one person make?
And you say, there are people with your story and they'll quickly find out how many others have the story.
And you'll quickly come together and want to do something about it.
You know, there's 60 plus million if you look at the census data, it's like one in four or whatever.
And then we all have one or two family members.
And so in some ways, we use the minority mindset to get our rights.
And now the mindset is display justice.
And in this way, justice means it when we accomplish true justice, everybody benefits.
When you talk about poverty, you talk about housing, education, the school to prison pipeline, you talk about LGBTQ plus you talk about.
And so then that that that, you know, I think what you were come implying was, we are represented in all those other minorities.
And together, we're we're really we're the community.
I mean, you know, and I think Keith hit on it was the identity.
You know, you resisted being called disabled and you said it's all right.
People are now going from people first to identity first language.
Folks, I'm not hiding my spot when I come rolling in your room in a power trip.
I'm not differently able.
Right.
Right.
Unless you want to call yourself that too.
And then that's just too cute for me.
And the word special ed special needs to go away.
Yeah, we could every kid needs an IP or individualized education.
Customized learning needs to be the standard.
Yeah, that's interesting.
You said that because I think educators would agree with you, you know, the people doing the actual work because they're doing it anyway, even when they don't realize when they're, you know, you talk to someone and they say, well, I don't know if I can teach, you know, not now, hopefully, but 30, 40, 50 years ago, I don't know if I can teach that individual, you know, with a disability.
But but when you talk to educators, they talk about all the different learning styles that children have, or even the adults have different learning styles than children do.
But some people can't connect those dots that, yeah, everyone, everyone has their own kind of learning style.
So we probably need to make it accessible to everyone.
And that's, you know, that's that kind of the end deal for all of this is where I'm not fighting for Keith to have access to anywhere.
I'm fighting for everyone in my community to have access to everywhere.
Sounds like a good rap.
I won't quit my day job for sure.
Please don't.
Well, again, I could sit here and listen to you all day because I feel like I've learned more in one hour than I have 20 years of disability advocacy, almost.
So thank you for giving us just a little bit of your time.
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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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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.
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.
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.
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.
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.
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.
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.
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.
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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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Lisa talks with Rebecca Bridges about deciding to leave her successful career and homeschool her children, as well as what it’s like to be part of a blind couple raising a family together outside Washington DC.
Check out the newly released audio version of Franke James’s book, "Freeing Teresa" on Audible.com and on freeingteresa.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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
Kimberly interviews disability advocate, Tyler Levy, and Lisa interviews Aaron Lammers, who gives his own first-hand account of living with autism. Plus, Lisa and Kimberly talk about Mattel‘s new line of disability Barbie and Ken dolls.
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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
Kimberly talks with Justin Jeter, public policy coordinator for the Commonwealth Council on Developmental Disabilities, about exciting changes to Section 504 of the Rehabilitation Act. Read the full press release here.
Lisa and Kimberly want to hear from you. Email them 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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
Carissa Johnson, Episode 6, and roving reporter Keith Hosey interview long time disability community advocate and ally, Beverly Alford, who has had a front row seat to the fight for equality for people with disabilities for over 30 years.
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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
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'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?
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.
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.
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.
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.
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.
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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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Kimberly interviews Donna Fox, executive Director of Forever YES. Donna teaches teens and young adults the importance of self-awareness, self determination, and self advocacy. They discuss how public opinion, especially in the areas of healthcare and media representation, is still getting it wrong when it comes to disability. Kimberly and Lisa talk about crappy situations and the best ways to answer questions about your disability. And do awareness months still have value?
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.
Transcription can be found in the show notes below when they become available.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
On episode 31 of Demand and Disrupt, Lisa speaks with author and advocate Jenny Smith about finding purpose and meaning while living with a disability. When Jenny was 16 years old, she sustained a C6-7 spinal cord injury, leaving her paralyzed from the chest down. Jenny is passionate about helping others work through the grief that is often associated with an acquired disability. Listen to learn more about Jenny’s story, as well as her eight week online educational support group designed to bring hope and emotional healing to those living with physical impairments.
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.
Transcriptions can found in the show notes below when they become available.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
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.
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.
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.
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.
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?
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.
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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Kimberly talks with Alexandra Ingram and Sarah Richardson about the Appalachian Assistive Technology Loan Fund, a way for people with disabilities to get 0% interest loans for assistive technology. Since July 1, 2023, the Appalachian Assistive Technology Loan Fund has loaned more than $85,000 to Kentuckians to help with the cost of assistive technology devices and services.
Links mentioned in the show:
Kentucky Assistive Technology Service
KATS Assistive Technology Locator
Kentucky Assistive Technology Loan Corporation
Call Sarah Richardson at 1-877-675-0195
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.
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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
Kimberly talks with Laura Reynolds, Miss Wheelchair Kentucky 2006 about her advocacy efforts, adaptive sports and recreation, and tips for travel. Kimberly cohosts this episode with Sam Moore, host of the Blabbin in the Bluegrass podcast.
Visit that podcasts page at blabbin-in-the-bluegrassblabbi.pinecast.co.
To reach out to Sam, email [email protected]
Check out the Blabbin in the Bluegrass Facebook page
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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.
This week, Kimberly speaks with award-winning author and musician, Eliza Hull. Eliza is a mother of two, and she lives in Australia. She experienced discrimination when she told her doctor she wanted to become a mother. After that, she began researching everything she could find about disabled parenting and what she found was very little. She began seeking out and compiling stories of disabled parents. The result is "We’ve Got This: Essays by Disabled Parents".
Eliza‘s children’s book "Come Over to My House: CBCA Notable Book"
For more about Eliza‘s music please visit: elizahull.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.
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.
Find out more at https://demand-and-disrupt.pinecast.co
This podcast is powered by Pinecast.