Steve Moore talks with Kimberly about the challenges of finding quality personal care attendants and offers tips to anyone in need of personal attendant care. And Lisa and Kimberly talk about Medicare scams, accessible Halloween costumes, and disability friendly underwear. Oh yes, they really do.

Below are links to the items mentioned in the podcast:

Federal Trade Commission Fraud Reporting

New Adaptive Costumes for Halloween

Victoria's Secret & Co. Takes Strides to Support Women with Disabilities

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:03 Welcome to the Demand and Disrupt, the Disability podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Avocado Press based in Louisville, Kentucky. I'm Kimberly Parsley, and I'm here with my co-host, Lisa McKinley. Hey, Lisa, how you doing? Lisa McKinley 00:23 Hey, good, how are you? Kimberly Parsley 00:25 I'm doing very well. So tell me, Lisa, tell me if this has ever happened to you. You go, you're going to sit down to do something very important. Let's say you're going into the meeting, or you're going into church or I don't know, maybe you sit down to record a podcast, and your phone rings. And what is it? But a scam phone call? Does that ever happen to you? Lisa McKinley 00:50 All the time, all the time. Kimberly Parsley 00:53 And lately, those scam phone calls, though they've been more than petty annoyances, haven't they? Lisa McKinley 01:00 They really have. And so we're coming to you today with a warning. Scammers are really targeting persons enrolled in Medicare and Medicaid. So we've got a lot of Medicare and Medicaid phone call scams going on right now. And one reason being is open enrollment for Medicare. And so what scammers are doing, they are calling folks. And oftentimes it will start with a robo call, where you're getting an automated call, telling you to press one for more information, or press two to be removed from the call list. So what happens, you press one for more information and you get connected to a live operator. And this is where the scam comes in. They will try to get sensitive information like your bank account number and your credit card number. Medicare will never ask you these things over the phone. You may get a call text or email from your from your state agency telling you it's time to enroll. But they won't ask for credit card numbers or bank information. So that's the number one red flag. And if that happens, you need to hang up immediately. And you can report the scam to the FTC. Some of the red flags to look out for are asking you for money, asking you for your credit card your bank accounts, threatening you saying if you don't act within a certain timeframe, you're going to lose all your benefits. It's really it's really scary. I don't know if you've received any of these calls. Have you Kimberly? Kimberly Parsley 03:00 I have Yeah. And it is scary for those of us, especially for whom our healthcare is so important. You know, even if we know better, we know this is probably a scam. But my gosh, we're all so afraid of losing our health care that we're like, well, maybe I'll risk it. I don't know. Lisa McKinley 03:24 It's really - it's not even just phone calls. There's a lot of mail scams even going on with Medicare. We just received a letter in the mail saying my mother's benefits were going to be decreased, like by two thirds. And it's like there's no reason for this. And of course, they give a fake number but you know, it looks legit. So anytime you are in doubt, contact your, you know, your state agency, contact your local office, take the letter in or tell them about the phone call you received and make sure things are really legitimate before you act upon any kind of letter or call you receive. Kimberly Parsley 04:12 Well, that's good advice. And number one always, never give out personal information over the phone. Never give out your bank account information over the phone. Is that right? Lisa McKinley 04:21 Never Never, never never. FTC says if you are asked either your bank account information or credit card and information, that it is a scam and to hang up immediately and to report the call. Kimberly Parsley 04:40 And how do they do that? How do people report? Lisa McKinley 04:42 You can simply go to report fraud.ftc.gov And there will be a place there where you can fill out the details of the call and the fraud. Kimberly Parsley 04:55 Excellent, excellent. That's very important. That's a step I don't think I mean that's a step I've never taken. I bet a lot of us haven’t, you know, so great information. Lisa, thank you so much for that. Um, something since we're talking about scary things, it is October, which means Halloween is nearly upon us. And one of the things I have been looking into is Halloween costumes for the disabled. And I looked up a wheelchair like additions to costumes for wheelchair users in particular, like for your little one. Apparently one of the most common costumes is Batman. And for wheelchair users, there's like a Batmobile you know, edition that you can buy so that the wheelchair is covered in like a Batmobile costume? Isn't that cute? Lisa McKinley 05:51 Oh, that is cute. Kimberly Parsley 05:53 I thought that would be great. The princess thing you could be Cinderella in the, you know, the awesome Cinderella carriage. There were all kinds of these and they are sold at Amazon. Disney makes a bunch of them. And I'll have a link to some of those in the show notes. For anyone who's interested, I think there may still be time to get the costumes. And, you know, I was thinking about this when I saw it. And I thought, you know, I wonder if this is the kind of thing where like people who use wheelchairs, maybe they've known this, maybe this has been around for years and years. And I'm just now figuring it out that way. And I think it's cool. And so I wasn't even sure if I was going to talk about this topic today. But then I thought, you know, our roots in this podcast are as an offshoot of the original Disability Rag. And one of the things the Rag did was to educate people with disabilities, educate them about people with other disabilities. So, I mean, I think I would like to continue that. What do you think? Lisa McKinley 07:14 I mean, I think you're right, I think it's really important. We don't always know, crossed disabilities, you have your certain disability, that's familiar to you. I mean, for us, it's, it's blindness and but you're not always aware of the struggles or, or the things other people might be going through or the equipment that's available to them. And I think it's important to educate ourselves and, and to be open to, to hearing about other disabilities and what might be available. And not to get offended. You know, it's, it's easy. When you've been, I don't know about you, but it's really easy. I think when you've been walking in a certain disability for so long, to kind of expect that everybody knows exactly what you deal with on a daily basis. And to get offended. I sometimes get caught up in that. I don't know if you do but I think, you know, by talking about other disabilities, it might help. Kimberly Parsley 08:31 Yeah, I think so. I think so. And you know, also that, unfortunately, just because you have one disability does not, does not make you immune from getting another one. As I know, all too well, you know, so. So I just think we can't ever stop educating ourselves. And then sharing information because, you know, sharing, let's share stuff with each other, you know, let's share information. And since we're sharing, so I gotta tell you, there's something else because I went down an internet rabbit hole, like you do, and also found out this great thing, sort of dealing with costumes, sort of not, but Victoria's Secret is now making, they have a line of clothing for people with disabilities. A line of bras and panties. Isn't that exciting? Lisa McKinley 09:28 That really is, but tell me about them. Like how does that work? Kimberly Parsley 09:32 Well, the thing that I found exciting was that they have magnetic closures. So you know, there's like the, you know, the hooks for brawls and things that you can't do one handed, you know, you just can't. Magnetic closure, that seems more doable, you know, so Lisa McKinley 09:54 I mean that can like revolutionize certain people's lives. I mean really like I mean, even for us that are getting a little older, I mean, I've pulled a muscle just trying to reach back there and clasp the little hooks. So you know, and I'm not the only one. I've heard lots of women, apparently you get 40. And things just aren't as flexible anymore. So there you go their uses and purposes. Kimberly Parsley 10:24 No, no, right. None of us are getting younger. So I'm very excited about this. I wanted to share that information with everyone. Do with it what you will, that's what I say do with it what you will. Lisa McKinley 10:37 So who are we interviewing today, Kimberly? Kimberly Parsley 10:40 Well, today, I had the pleasure of interviewing Steve Moore. Steve does our transcriptions for us. He's so kind to do those for us. Steve is a wheelchair user. And he's also going to talk to us about the Personal Care Attendant Program. And the changes that that program has seen over the last year, the pros, the cons, and just tell us some about that. So a really, really positive really wonderful person. So I was thrilled to get to talk to Steve. Lisa McKinley 11:10 Oh, how exciting that we get to hear from Steve and he gets to transcribe us talking about bras and panties. Kimberly Parsley 11:18 I know. Oh, you're right. While I should, I should maybe apologize to him in advance. So is it really an apology if he has to type it up, though? Seems unfair, anyway. And now for my interview with Steve Moore. Hello, so today we are joined by Steve Moore. He does our transcriptions for us. So thank you for that. And welcome, Steve. Steve Moore 11:47 Hello, Miss Kimberly, it's great to be here. Great to see you. Kimberly Parsley 11:51 So tell me a little about yourself. Steve Moore 11:54 Well, I'm a quadriplegic from a motor vehicle accident, been doing this for a while. It happened back in

1. I quickly realized after rehab and, and getting physically as far as I could, that I wasn't gonna be able to do the same old hands-on manual types of labor that I used to do so. And I wanted to do something with my life still. So went back to school, and I got my bachelor's degree in business, finance major, and worked for Chase Bank for 13 years full time till I got that to where I couldn't work anymore because of pressure issues and ulcer issues so I had to retire. But I've tried to stay occupied and stay healthy. And that's the biggest job I have now. Just turned 60 Thursday of last week. Kimberly Parsley 12:58 Oh, happy birthday. Steve Moore 12:59 Oh, yeah. Thank you for the condolences. I appreciate that. That's about that's about the gist of it. Kimberly Parsley 13:08 Well, you know, they say the thing about humans is that we're adaptable, right. And so it sounds like you adapted and went on to, to do things. So that's a, that's great that you were able to do that. Steve Moore 13:22 I was fortunate to realize, early on that life goes on. And if I didn't do something with myself, I was never going to be happy. So I just, I just pulled up my big girl panties. Kimberly Parsley 13:39 There you go. So tell me about your experience with personal care attendants. Because I assume that's a big part of your life. Steve Moore 13:46 Yes, it is, you know, being a quad, you know. Of course, you know, quads vary. All of our disabilities vary so wildly. Totally dependent on all of my ADLs (activities of daily living). So it's vital for my well- being and function. And early on, of course me so long ago and of course being a new challenge. It was really difficult. Resources weren't available then that are now, not that it's a piece of cake now, but nothing used to be available. You know, and I ended up going to, whenever I started in the school, you know, I had was living back with my parents here in Louisville. And it was really so difficult to not only to get care but to get transportation to and from school. So I had found out about a Voc Rehab Center down in Eastern Kentucky, southeastern Kentucky, Paintsville, the Carl D Perkins Center. So I went and toured that and decided to stay there and I was the first person there that that they started the program of taking out taking students to, or transporting students back and forth to and from Prestonsburg to the community college for classes. And so I lived there, I lived there for about three and a half years on the medical unit and got all of my physical and occupational therapy, and earned all of my credits that I could that would transfer back to Louisville. And, and then, at the time that I got all that done and had to move back to Louisville, I had been on the Personal Care Attendant Program waiting list for a while. I don't recall the length of time, but it came open for me soon after I got back to Louisville, moved back to Louisville, and I was able to utilize that to start getting care. And before that, because I was in college, voc rehab helped me cover home health. So they worked out that way. And especially with the personal care attendant program, I was able to hire and schedule my help my caregivers, and keep a good class attendance and so on so forth and finished college and then set out on my job search. Kimberly Parsley 16:28 Now, recently, there have been some changes to the personal care attendant program, can you can you tell us a little about that? Steve Moore 16:35 Yeah, I can probably give an overview, the program itself was had always been coordinated and administrated by the Center for Accessible Living offices. I don't know exactly get all the nuts and bolts work exactly, but, you know, someone at each of the offices had their areas and their scope of responsibility, you know, for administering the program. And then, you know, bi weekly, like consumers will turn in their paperwork for their caregivers, and then those offices process it with the basically, finance in Frankfort, you know, what, to, what to pay who, and those funds, you know, would come to the care to the consumer, and then go, you know, from the consumer to the, to the caregivers. The state decided that if they could take it in house with the Department of Aging and Independent Living in Frankfort and do it from there, centralize it, that they could save a lot of money doing it and thereby provide consumers with more funding to hire caregivers. So that's what they did and they had to transition over at what at the beginning of the year, or the end of the year, 2022. And for me it's been fairly smooth. I haven't really had any trouble Yeah, so that's been a relief because you know, you always have those worries anytime there are changes and it's so vital. The assistance that provides us is so vital to most everyone as far as retaining assistance so that's been a blessing. Kimberly Parsley 18:42 So what have you heard from other people? Has the transition been as smooth for others as well? Steve Moore 18:49 I really don't know I haven't. I don't know anybody else personally who benefits from the program so I really can't comment. Kimberly Parsley 19:00 But when those big changes come and you know they're coming up at It is terrifying, isn't it? Steve Moore 19:04 Oh, it can be it can be because especially you know when you've experienced dead spots before you know, Oh, no. What am I gonna do now? Yeah, I was really fortunate. As I went through the process after moving back home, I had super supportive parents and family and thankfully I didn't have difficulties but for the most part, things fell into place. Pretty good and I was I was an oddball. I wasn't I wasn't, I was a statistical, what do they call it a statistical - Kimberly Parsley 19:42 Anomaly Kimberly Parsley 19:49 So many of us are statistical anomalies Steve Moore 19:53 Really are if we think about it. Kimberly Parsley 19:56 So what kind of changes would you like to see going forward for a personal care attendant program? Steve Moore 20:03 Oh, I'd love to see it expanded to become available for more disability, disabled Kentuckians, the need is so great. It's not like I said, you know that things have changed a lot over the past 39 years to what they were. But, and there are comparatively a lot of other resources available and helpful, that is still not enough, there are just so many people who are affected with their well being and independence and so forth. And to provide, you know, even a little more funding so that we could actually attract and retain assistance more easily. It's really difficult when you lose a good attendant. Because it's usually a process of hiring, and trying different people over time to find someone that's this really good again. And so you know, that's the thing. That's one of the, that's one of the things that might would help, you know, if you were able to pay to attract more qualified or more motivated, folks, Kimberly Parsley 21:19 So you interact with these people constantly, right? I mean, the quality of your life is in, in a lot of ways dependent on the quality of your personal care attendant, would you say that's correct? Steve Moore 21:34 That's absolutely right. You know, you can't leave the, whenever you have anybody that's not thorough or not reliable or not sufficient in their, in their care. Then you know, that that really takes away from your, from your attitude, from your, your personal sense of well being and your worries, lows and so forth, to have caregivers who are who are responsible and know their jobs and are motivated. It's just, it's makes life so much easier compared to the alternative. Or even you know, compared to an institution or a nursing home one time I had about a 30 day stay to recover from surgery, I swore then that I'd never go back to one. I don't know that I won't never know about your future, likely. But to be able to have your own care at home, to be able to decide it yourself, to direct it yourself. And to hire your own people, or replace your own people, et cetera. There's just no, there's just no comparison. There's nothing like it. Kimberly Parsley 22:49 We all want that choice, don't we? Steve Moore 22:53 We really do. It’s incredible, the difference it makes in your life. Kimberly Parsley 22:59 Yeah, same, same here. Same here having, having choices is well, it's critical to your well being You're right about that. So it let's say it, there's someone listening, and they are at that point or on the cusp of needing personal care attendants. What do you advise? What do they need to do? Steve Moore 23:18 Well, don't give up as for sure. Try to think of all the resources possible, you know, be in contact with your local Center for Independent Living or the Department for the Aging and Independent Living, talk to other people too, especially if you know anybody that is in, you know, the same boat or has had the same experience for ideas, you know, do brainstorming with other people, you know, look online. There's a one website that I'm that I'm aware of is called care.com. And you can advertise there for help, you know, you can even get on get on PCAP list as quickly as possible. If you're already on that list, you know, you can use those funds to pay somebody you know that you hired to care.com or you know, general health one at as long as that waiting are difficult but expensive, but I don't even know what the Run Now fortunately, I haven't had to look for anyone for quite a while. Kimberly Parsley 24:20 How long is the waiting list right now? Do you know, you know that? Steve Moore 24:22 No. I'm not familiar. I know. It's too long. Yeah. Yeah. You know, the brainstorming with others, you know, I think is an excellent idea of coming up with solutions with alternatives. Kimberly Parsley 24:37 It's just simply nothing that compares to having someone who's well compensated to help you out for those kinds of things, though, is there? Steve Moore 24:48 You know, you don't want somebody to be just totally motivated by money. But, you know, it does help with the recruitment and retention of some, you know, a lot of us, you know, we don't need somebody around the clock or for multiple hours stretches, you know, like, like half a day or six or eight hours a day. You know, so sometimes it's really difficult to get somebody that can just come for two or three hours, you know, for your, for your morning cares or your night cares, etc. So, you know, being able to pay you more is more attractive to for somebody that, you know, looks at the hours and says, Oh, gosh, I need to earn more than that, you know? Kimberly Parsley 25:40 Well, what else? What else have I missed that you think's important for our listeners to know? Steve Moore 25:45 Just know that your efforts will pay off. Sometimes you, you know, may have to do repeated hirings. And, you know, that involves interviewing folks, talking to folks on the phone, and, you know, screening. Another good idea is to, you know, come up with decent questions to interview folks so that you can get an idea of their skills and one helpful tool is to come up with good screening questions, for your, for your folks that you're looking into possibly hiring hire. You're gonna need to talk to folks on the phone and set up interviews sometimes with folks and good questions can give you a good idea as to how the person feels about such a job, and the requirements of the job and so forth. The Center for Accessible Living has a great employment package that, you know, if you are on the personal care attendant list, but you know, they can provide you or they might even provide you one, I'm sure they would provide you one, even if you're just on the waiting list, whether you're on the list at all, it's just a good idea to do that. And, and just keep trying, keep trying. And the more you try, the better you're going to come out. Sometimes you're going to have to hire people and let the same people go in a short time because you’re really not satisfied with them, or are they don't work long and they leave. It really takes a special person to do this kind of work and to care what about they're doing and, and be really motivated, you know, other than financially, but you know, it pays off. It pays off in dividends all the way through as long as you stay with it. Kimberly Parsley 27:56 Alright, well thank you very much, Steve, for educating us about the personal care attendant program and your own issues with that. And thank you very much, and everyone else. Thank you for listening. We will see you again soon. Bye bye. If you like the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts that helps more people to find us. If you really really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to demand and [email protected] and put transcript in the subject line. Thanks to Steve Moore for helping us out with transcripts. thanks to Chris Onken for our theme music. Demand and Disrupt is a publication of the Avocado Press with the generous support from the Center for Accessible Living located in Louisville, Kentucky. And you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities” in our show notes. Thanks everyone.

Find out more at https://demand-and-disrupt.pinecast.co

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On today’s episode of Demand And Disrupt, Lisa speaks with Jason Koger, the first person in the world to receive two bionic hands. In March of 2008, Jason suffered major tissue damage after coming in contact with a downed powerline. In order to save his life, doctors were forced to amputate both arms below the elbow. Jason recounts the day of his accident, and how his journey towards healing ultimately led him to discover a greater purpose. Listen to hear more about how Jason now uses his experience to help and encourage others.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:00 Welcome to Demand and Disrupt: A 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 everyone to Demand and Disrupt: A Disability Podcast! This is Kimberly Parsley and I'm here with Lisa McKinley. Hey, Lisa! How are you? Lisa McKinley 00:21 Hey, everyone! I'm great. How are you? Kimberly Parsley 00:24 I'm doing well. It's October. So, it’s only about 87 here in Kentucky now. But at least there's hope. Right? Lisa McKinley 00:31 Maybe we'll get a break soon. Maybe. Kimberly Parsley 00:33 Fingers crossed. October is National Disability Employment Awareness Month. Tell me, did it not just used to be regular old National Disability Awareness Month? Do you know? Lisa McKinley 00:50 I think you're right. I guess they have to add the national on now for who knows what reason. Kimberly Parsley 00:56 Well, it's not the national add on, it’s the employment. Instead of just disability awareness, now… As disabled folks, it’s really all about just how much productivity we can do for the man. Lisa McKinley 01:12 I thought it was two different things. I thought we got two months, but we only get one. How rude! Kimberly Parsley 01:21 Well, July was Disability Pride Month. So, there's that. And then there's International Disability Day, which is like in December. We have some things going on for that that I'll tell everyone closer to time. But maybe I'm just being greedy. Maybe I just want too much. Lisa McKinley 01:40 No, I think we get we should get every day. Kimberly Parsley 01:43 There you go! There you go. I love it. Another thing to celebrate is that it is near or just past the 50th anniversary of the Rehabilitation Act of 1973 which I'm sure you learned all about in school. Correct? Lisa McKinley 02:06 [laughter] No, not at all. Kimberly Parsley Exactly. Lisa McKinley But I am so happy those people, so many people, paved the way for us 50 years ago! Kimberly Parsley They did! They did. Lisa McKinley Do you remember 50 years ago? Kimberly Parsley 02:18 I do not. I was not alive 50 years ago. I was not! But Judy Human for instance (I think of her because she passed away very recently); we are losing a lot of our idols: those who fought these battles so that we could enjoy the rights and privileges that we have now. One thing that people can turn to: there's an excellent Netflix documentary called Crip Camp. Crip, of course, for cripple. I think they're taking back using that word – people who are disabled and want to take back that word are doing that – and I think that that's fine. So, it's called Crip Camp and it is on Netflix and it is an amazing documentary about the Independent Living Movement. At the end, it does talk about that culmination of the Rehabilitation Act of 1973. I advise everyone to look that up on Netflix. It is very moving; I cried a bit. Lisa McKinley 03:28 That's something I've not watched yet. I'll have to renew my Netflix subscription. That sounds like something I definitely need to watch. Kimberly Parsley 03:39 It is really wonderful. Now, you do our interview today. Why don’t you tell me about who you're going to be talking with. Lisa McKinley 03:50 I did! I had the pleasure of speaking with Jason Koger. Jason lost both of his hands back in March of 2008 after he came in contact with a downed power line. He received several thousand volts of electricity, which he'll tell us about later in the interview. In order to save his life, doctors had to remove both of his arms and hands below the elbow. He is the first bilateral hand amputee to receive two bionic hands, but what's really fascinating about Jason and his story is he has been able to use these hands and do things with the hands that the company, the designers of the bionics, didn't even know were possible! Changing the oil in his car, hunting, fishing – intricate little movements that they didn't even think were possible! As a result, he's been featured on CNN, he’s been in an episode of Hawaii Five-0, he’s been featured on Dr. Gupta. He’s even appeared in a movie with Matthew McConaughey! Kimberly Parsley 05:13 Really? Wow! Lisa McKinley 05:16 Yeah! Quite fascinating! I really enjoyed talking with him. Kimberly Parsley 05:21 Excellent! That sounds great. All right, everyone, we're gonna hear Lisa's interview with Jason Koger. Lisa McKinley 05:32 Welcome, Jason. Jason Koger 05:33 Thank you very much for having me. Lisa McKinley 05:36 If you would, take us back to that day. March 1, 2008. Jason Koger 05:42 Yep. March 1, 2008. It was the first warm day of the year. I don't know, it was probably in the mid-70s, it was beautiful outside. I had been working seven twelves prior to that (seven days a week, 12-hour day shifts) and making really good money. I was putting extra money on my home so that I could get it paid down quite a bit, which by March 1, I had paid quite a bit extra on my house. That obviously helped because when I went through my accident, I couldn't work, I couldn't pay for things that I had before. So, definitely, that had helped me out. On March 1, 2008, I woke up that morning (probably the 1 st day that I had a day off in quite a while) wanting to do something with my kids. My oldest daughter was 21 months old and my youngest was three months old at the time. So, I took them to Owensboro to go on a little train ride at the mall. We went and did that, came back home and I laid them down for a nap. Then, I decided that I was going to go on a quick 4-wheeler ride around my grandfather's farm, which literally was a 5-minute ride. It was about a quarter of a mile long; something that I've been around for my entire life. I tell people that whenever you're at your house and the lights are out and in the middle of the night and you want to walk to the bathroom or go to the kitchen or whatever, you can get up without turning lights on and know exactly where things are (furniture, obstacles, etc.) and make it to wherever you're going and not run into walls because you're so familiar with where you're at. That’s how I felt around this farm because I've been around it my entire life. So, I went on this quick 4-wheeler ride. The driving trail makes a U-shape: it starts at my house, goes behind my house, then U-shaped to my grandfather's. At the 2 nd left hand turn, there's a culvert (the only place you can go through) and there was a downed power line that I didn't see. The line was about 30 inches off the ground and I came in contact with it. At 1 st , it didn't do anything to me, but then, as I was trying to look to see where the line was going, it energized and I took 7200 volts of electricity. A lot of people don’t even know what 7200 volts is, but 7200 volts is actually more than the electric chair used for execution. Electric chairs are only 6800 volts, but it was enough power that it stopped my heart for 30 seconds (because when you get electrocuted, it electrocutes you for 30 seconds and then it kicks the breaker off). So, I took 7200 volts for 30 seconds. The power of the 7200 volts was enough that it stopped my heart for 30 seconds and blew my shoe off. It came out of the bottom of my right foot and they found my tennis shoe 30 feet from where I was laying. Lisa McKinley 09:05 Oh my goodness! How did you survive that? That's a miracle! Jason Koger 09:13 Yeah! There are not very many people that do survive 7200 volts, really. That's a lot! Lisa McKinley 09:27 Your cousin was with you. Right? Jason Koger 09:30 Yes. My cousin was behind me whenever I got injured and he knew that I got electrocuted. He doesn’t speak a lot about it, to be honest with you, and I really think that he thought that was the end of my life. I think he thought that. He said that it looked like the Fourth of July was coming off my body, that sparks we're going everywhere! When you get electrocuted, it actually burns you from the inside out. It exited out my left thumb as well. It pretty much blew my left thumb off; it was just barely hanging on. It also ripped the tendons off the tips of my fingers, so all 10 of my tendons were wrapped around my wrists. I looked like a stroke victim where my hands wouldn't straighten; they were curled up. My hands would have never worked, even if they did save them. When you get electrocuted, it burns you from the inside out and causes poisonous toxins inside your body. The poison has to go somewhere, so it goes through your kidneys. I was life-flighted to Vanderbilt Hospital. While I was in the helicopter, they catheterized me and the urine bag that was beside me looked like Dr. Pepper. It was all the blood and poison going through my body, which was shutting my kidneys down. Ultimately, when I made it to Vanderbilt, it was a life-or-death situation because of all the poison and the chemicals that were inside of my body. They had to find where the infection was and get rid of the infection. The infection for me was in both of my hands. So, immediately, they had to amputate both my hands in order to save my life because of my kidneys. Lisa McKinley 11:37 I would assume, and for me, every time I share my story, because I've been asked lots of times over the years how I lost my vision, it takes a little of the, I guess the sting out or the power of that day and it becomes easier. Have you found that as well? Jason Koger 11:59 Yeah. I think things happen for a reason and I feel like my reason is to share with others that, no matter what you go through, you can get through it. I think some people look at my story and they're like, “How can it be any worse than losing two arms?” Well, I don't know what it's like to lose 2 legs. Right? I don't know what it's like to lose vision or lose hearing or lose whatever it is. No matter how bad it is, we're all blessed with so many good things in our lives and things that we all need and use and whenever something is taken away from you, you have to use that for whatever and how ever you can in a positive way to show everybody that at the end of the day, God does all things for a reason and in a positive way. That’s why I love sharing my story now. I share my story hoping I can inspire others to overcome anything, whatever they're going through. Lisa McKinley 13:11 Yes! I heard someone put it in a really good way once. It always stuck with me. He said, “Focus on the things you can do, not the things you can’t do. If you focus on the things you can't do, it will steal the joy from the things you can do.” That’s so true. Can you tell me what it was like when you first woke up in the hospital? Jason Koger 13:36 Yeah. When I first woke up and my dad told me, basically, I didn't know I had lost my arms. Right? I was in an induced coma for three days and I really didn't… Whenever he told me that I lost my hands and forearms, the first thing that went through my mind was not, “How am I gonna be able to live or survive or feed myself or dress myself,” or whatever. I didn't think about all that stuff. I just kept on thinking about my kids. At the time, I had two little girls (now I have three, three kids), but at the time having two kids, the most important thing was for them to still have their dad. Right? The other stuff (and I say little stuff), but the dressing yourself, feeding yourself and doing things on your own really wasn't as important to me. Of anything out of my entire life, nothing was as important as just being a dad: being able to teach my kids, walk across the street with my kids, play baseball, do the things that every parent wants to do. So, in the back of my mind, I just kept on and kept on thinking, “How can I still be the dad that I want to be?” That was most important to me. Lisa McKinley 15:06 You say your doctor came in and asked you something or made a proposal to you the day you woke up. Can you tell us what that was? Jason Koger 15:20 Yeah. Dr. Guy was my doctor. He came into the hospital room, sat down with me and he explained to me, basically, why they had to amputate (because of the poisonous toxins inside my body). He also told me, “Jason, you're gonna be in the hospital for months.” He said, “Before you get out of this hospital, I want you to think of maybe one goal that you have and make sure that it is realistic. I want to try to help you reach that one goal that you have.” He said, “I want you to sit and think about what that goal is and, again, make sure that it's something that's realistic.” He stood up to walk out of my hospital room and I told him, “Dr. Guy, I know what I want. I know the goal that I have and I do want you to help me reach this goal.” He asked, “What is the goal that you have?” and I told him. I said, “If I can hold my kids again, that's all I care about.” At the time of my accident, my oldest was 21 months old and my youngest was three months old. Again, I wasn't worried about how I was going to be able to dress myself or feed myself, I just wanted to be able to hold my kids again. I'll never forget him looking at me and telling me that that would happen. Anyway, I think it was the next day or maybe a couple of days later, Dr. Guy walks in my room, sits down with me and he says, “Hey, Jason, your kids are here to see you. I'm gonna bring them into your room.” I said, “No! I don't want my kids in this room!” because at the time, I had tubes hanging out of my arms, I didn't have hands, I had heart monitors, I had feeding tubes, catheters. I mean, I was hooked up to all kinds of stuff and I remember telling him that I didn't want my kids in my room like that. They're already gonna be scared of me with no hands, I don’t want them to see me with all this other stuff hooked up to me. Again, he told me I was gonna be in this hospital for months. So that day, I talked him into unplugging me, taking the feeding tubes out and catheter out. He got me up and got me out of the bed and that very day, I went to the waiting room. That was the first day that I held my kids! My oldest, Billie Grace, was 21 months old and she was scared to get in front of me, but she would come up from behind me and put her head over my shoulder and talk to me. Campbell was three months old and I held her for the first time; that was probably four or five days after losing both my arms. And that one goal that I reached? When it happened, I had a peace that I felt that I knew everything was gonna be okay. Everything was gonna work out and my life was gonna be great. I was gonna make it great! I reached the first goal that I ever tried to do, so I knew life was gonna be hard, but I knew it was gonna be good. I would be able to overcome this situation. Lisa McKinley 18:43 Wow! And you made that goal! That was the first day or the second? Really early on! Jason Koger 18:53 It was the first day I was awake that I made that goal. I was in an induced coma for three days, so that was the very first day that I was awake that I knew I wanted to do that, that that was my goal. I think it was the day after, so either the fifth or the sixth day after losing my hands was the day I reached that goal. Lisa McKinley 19:15 It's amazing what motivation our children provide! Your children, your family. They will motivate you to do things and find strength in yourself you did not know you had. So, I think it was really fortunate for you that you had children at the time. Do you think it might have been different if you didn't have that motivation? Jason Koger 19:38 I know that I feel like just knowing that I had two kids at home that needed their dad, I am sure, was a huge benefit for my success or for my overcoming and I don't know how I would have felt if I didn't have that. I was 29 years old, freshly married, starting a family. Was it my age that made it better or…? I don't know. I think it all comes down to the community that I had around me, the friends that I surrounded myself with, the family that I had, the age – everything lined up. The faith! I think faith is one of the biggest things you have to have in order to succeed through any kind of a bad situation or a bad accident or whatever it is. Because at the end of the day, every single person is going to go through a bad day or a bad time. It may not be physical; it may be mental. But everybody is going to go through a hard time and we all have to be prepared to overcome whatever that is. It may be something a lot smaller than what I went through. But it may be something that's a lot bigger than what I went through. Lisa McKinley 21:14 Tell me what it was like coming home for the first time. Jason Koger 21:18 Whenever I first got home, I was actually, like I said, supposed to have been in the hospital for months. I asked Dr. Guy the things that I had to do in order to get home and the goals that I had to reach in order to go home and I reached all those goals. So, 12 days after losing both of my arms, I was released from the hospital and I came back home to Owensboro. I worked extremely hard to get home. Because you're from here, you may know where this is, but when you get on Frederick Street and you go south it turns into 431. I just live just south of the mall, the old mall, and there’s a church on the right- hand side before you get to my house called Panther Creek Baptist Church. That day that I made it home (which no one knew I was coming home that day) somebody had called the church on my drive home and they went out and they put a message on the board that I could see. It said, “Welcome home, Jason! We've been praying for you.” I will never forget seeing that sign! The people in this community – I wish that every place was like this one – the people in my community came to my house, they brought us meals, they cleaned our house, they would babysit or watch me and let Jenny go to town just to have her time (which is my wife), they would do everything that we could ask for anybody to do for us. And some of them were complete strangers! When I was injured and I lost my arms, I felt like I was the only person in the world that lost an upper limb. I've never seen anybody without an arm but one person, my grandfather. He lost one arm and he passed away about three months before I was injured. He was the only person that I had ever seen in my life that lost an arm. When I lost mine, I felt like I was the second person in the world to ever lose an upper limb. Obviously, the last 16 years I have met people all over the country that have lost one arm, two arms, all four limbs. I set out on this mission when I first got home: I was going to share my story with as many people as I could share my story with in hopes that I would meet new amputees and help them in this journey that I had on my own and share with them my story, my experiences, the things that I've learned and be that encouragement or that resource that they need. I've been very successful at doing that and I don't do that for money; I don’t get paid to do that. I don't think that anybody could pay me enough to match the satisfaction that I get whenever I work with new amputees and I get to see their first smile or I get to see their eyes light up whenever they get hope. You know what I mean? And the smile that they get knowing that their life is definitely going to be different, but it's still going to be okay. Lisa McKinley 24:44 Now, when you got home you hit the road running. Right? Tell me about your first drive. Jason Koger 24:55 The day I got home (that was 12 days after my accident), my wife went to town to get some groceries and my mom was sitting in our house with me. I went to her and I said, “Hey, Mom, where are the keys to my truck?” And she said, “I don't know, on the counter, I guess. Why?” I said, “Because I want to see them.” I remember her giving me these keys and saying, “What do you want to do with them?” And I said, “Just put them in my mouth.” She said, “Well, I'll just go outside with you.” I said, “Mom, I don't want you to. I just want to go outside and I want to see what I can do for myself.” And I remember her putting the keys in my mouth and me going outside and doing everything that I could do to open my truck door. I used my mouth, my teeth, my feet, I mean everything that I had in order to open this door. It might have taken me 15 or 20 minutes, but I finally got the door open to my truck. I got in my truck and I got the key in the ignition and I got it started! Once I did that, I thought, “You know what? I got to try to drive.” And I drove around my grandfather's farm just 12 days after losing both my arms. Lisa McKinley 26:08 Yes! Absolutely! You can never define yourself by what people say you should be or what you can or cannot do. I learned that early on. It sounds like you definitely have that spirit about you. Another story I've heard you tell and we have to tell this one because it's just so, so fun! Tell us about turkey hunting. Jason Koger 26:33 I love the outdoors. I love to hunt. March 1st was when I got hurt and April is when turkey season comes in. So, just a month (a little over a month) after my accident, my buddy called me – one of my best friends named Sam Smith. Sam called me and he said, “Hey, let's go turkey hunting.” I thought about it for a minute and I said, “Sam, how can I go turkey hunting? I don't have prosthetics. I'm still bleeding. I'm still wrapped up. I cannot do this!” And he said, “Sure you can! I think I got it figured out.” Well, I called my doctor and by this time I had become super good friends with my doctor, texting him back and forth. I texted Dr. Guy and I said, “Hey, Dr. Guy. I got a question for you.” I asked, “Can I go turkey hunting?” He sat there in silence for a minute and he said, “Man, I don't know. I've never been asked this.” I asked, “Well, can I go?” He asked me, “Tell me why you don't think you can go?” And I said, “Man, I’m more worried about a tick getting inside my open wounds and you having to amputate more off. That's what scares me to death!” He told me, “Just make sure that you spray off really good.” I said, “Okay.” I went turkey hunting. I went with my buddy and in the back of my mind I was gonna spray off really good with tick spray and I was gonna sit beside him and watch him kill a turkey. I was completely fine with that. I went to his house that night, spent the night with him, and as we were sitting in his living room, he walks in and he says, “Hey, Jason. I think I got a way figured out that you can shoot a gun. I was like, “Sam, I can't do that. I don't have hands. I don't have prosthetics.” He laid this shotgun in my lap, he took the two screws out of the butt-end of the shot gun and he strapped that gun to my shoulder. He put a tripod on the front of the gun with a radiator hose to hold the end of the barrel up and he put a string from the trigger to my mouth. While we were sitting in his living room, I was dry firing this gun and I told him, “I think I can shoot.” So, the next day we went to the woods and we went turkey hunting. I think I missed the first couple of birds that I saw, but that day I killed my first turkey after losing both my arms. It was just a little bit over a month after my accident. Lisa McKinley 29:08 Wow! That is cool that he made that gun for you; to rig it up like that! I need him to make me some kind of blind gun. [laughter] I could go shoot turkeys and – well, I don’t like turkey, maybe deer. Do you think he could make me a deer shooting thing? Jason Koger 29:31 Probably so. [laughter] Where do you live now? What state are you in? Lisa McKinley 29:32 I'm in Bowling Green, Ky. I'm just down the road or up the road, whatever you call it, but that's really cool! Have you ever had any really embarrassing moments? Jason Koger 29:50 I absolutely have had some embarrassing moments, yes. Actually, everybody's favorite story is when I first got home. The first time we went to Owensboro as a family was Hobby Lobby and it was me, my wife, Jenny, my oldest daughter, Billie and Campbell, my middle child now. Campbell was three months old and Billie was 21 months old. We went to Hobby Lobby and I told Jenny, “You go on shopping,” because I can't stand shopping. I said, “Me and Billie will go walk around.” So, Billie and I were probably three or four rows over from where Jenny was and I was carrying Billie. No prosthetics. She got to kicking, so I set her down on the ground and she went running away from me. I yelled at her, “Billie Grace, get back over here!” She turned around and was running back towards me with her arms wide open, fixing to jump in my arms and give me this big hug. I tell people it was almost like a movie: everything was slow motion. It was the best feeling in the world for a father. Well, she got to me and instead of jumping in my arms she grabbed me by my pants and she pulled my pants down to my ankles! So, here I am standing in the middle of Hobby Lobby with my pants down to my ankles and I'm trying to talk her into pulling my pants up, but she won't. I had to wobble four rows over to try to find my wife with my pants down to my ankles and you can't walk very fast when you got pants down to your ankles. I finally found my wife about four rows over and she was like, “Oh my gosh! This is so embarrassing!” I was like, “Yeah, I just lost my pants in the middle of Hobby Lobby.” So, she ran over to me and pulled my pants up. I said, “It could have been worse.” She asked, “How could it be worse? You just lost your pants in the middle of Hobby Lobby!” I told her, “Well, at least my underwear stayed up!” It could have been really ugly! Lisa McKinley 31:44 [laughter] That is so true! I assume you weren't at the point where you were wearing a belt and fastening a belt to prevent that kind of thing at the time. Jason Koger 31:55 No, they were jogging pants. That's about the best thing I could wear at the time. Lisa McKinley 31:59 Oh, my! You have to you have that attitude and laugh at yourself. I am sure it was mortifying at the time [chuckles], but looking back on it, it’s kind of funny. Jason Koger 32:12 Absolutely, it’s funny! [chuckle] Lisa McKinley 32:14 Now, eventually you did get prosthetics. Right? Jason Koger 32:20 I did. I went to my prosthetist when I was able to go talk to him. I had done some research and found out about some bionic hands and I wanted to look further into the bionic stuff. So, I went and saw a prosthetist and we sat down and I told him, “I really would like to get these i-Limb hands.” And he told me, “Man, I don't know if you'll ever be able to get these i-Limb hands because they are so expensive and insurance will say no. It's just what's going to happen.” I said, “Well, let's at least try.” So, we tried to get me approved for these bionic hands, but I was turned down, I was rejected, but I kept on fighting for it. Finally, I got accepted to get these bionic hands. I became the first person in the world as a bilateral arm amputee to be fitted with multi-articulating bionic hands, which came out in 2008. So, I was the first in the world with them. Now I'm on my fifth-generation hands, so I am also the first person in the world five times to have the newest bionic hands that have ever hit the market. Lisa McKinley 33:41 Wow! Do you kind of work hand-in-hand with the company now? Are you an ambassador for them? Jason Koger 33:49 I do. I'm an ambassador for them. It used to be called Touch Bionic back in 2008-2009. Then, the company got bought out by a bigger company called Ossur. Ossur is based in Iceland with engineers in Scotland. Ossur, they have a US headquarters in California. They also have some people that work in Ohio. I get to travel around the world now and show people how prosthetics work. I get to go to all the amputee shows, I get to work with the engineers, I get to work with other amputees. It's really opened up a lot of doors for me to do exactly what I told you I wanted to do, which was be a source of information for brand-new amputees, and it has really shared my story in the amputee community bigger than I would have ever imagined. I've met people all over the world with multiple amputations – up to four amputations or even down to just a few fingers – and I am more than willing and able and excited to work with every single amputee I've ever had an opportunity to work with and try to get insurance companies to understand that the prosthetics that are out there will never replace your real hand, but it comes really close to it. No matter the price, everybody deserves to get something that gives their life back. Whether it's hooks, hands or whatever it is, a person deserves to get the best thing to make their life as close to normal as they can. Lisa McKinley 35:43 If you don't mind, kind of describe your hands, because this will be just audio. So, describe how they operate and function. Jason Koger 35:56 Sure. I have two different sets of hands. I have the body-powered ones that people have seen since Civil War days: just hooks. Basically, rubber bands keep them closed and there’s a cable that opens and closes them and the cables go around my shoulders. So, when I move my left shoulder forward all I am doing is pulling a cable for my right hook to open. So, it's opposite shoulder to hand. Those are body-powered. Then, the mild-electrics have wrist joints and multi-articulating fingers. That means there are six different motors in each hand. I cannot just hold one finger up or 2 fingers or whatever. I can hold fingers extended out. But the way it works is I have sensors that lay on my forearm muscles and when I imagine and feel like I am raising my wrists in the air, the forearm muscles I still have contract for those movements and the sensors trigger the hands to open; when I lower my wrists the sensors trigger the hands to close. So, they open and close. There are many other movements the bionic hands can make, also. When I co-contract the muscles, the sensors tell the hands that I want them to rotate: when I imagine raising my wrists while co- contracting, the hands rotate up; when I imagine lowering my wrists while co-contracting, the hands rotate down. They will keep rotating 360 degrees until I relax the muscles. Then, I co-contract to get back into open and close mode. The hands also have an Apple app, so they know where they are in space. So, when I imagine and feel like I am holding my hands open, the hands open wide and hold open. The fingers flick and I can trigger the hands to move forward, backwards, left or right to go into certain grips that I can set up on the app. Using the app, I can program the hands for pinching, I can program them to do most any of those things are I want them to do. It sounds complicated, but it's really not once they are programmed and used. Lisa McKinley 37:48 Jason, do you have any last words of wisdom for any of our listeners today before we go? Jason Koger 38:00 Yes. I’ve just written a book. If anybody wants to get on my website it’s just jasonkoger.com. I'm selling my book there. I wrote this book to share a story of inspiration and a story of overcoming, showing that my faith and my attitude are truly what got me through what I've been through. The name of the book is Handed a Greater Purpose. I thought of that title because no matter the situation, no matter what we're going through, we all have to understand that God has a greater purpose for each and every one of us. If you have that faith and you know that God has a bigger plan for you, then somehow some way life just keeps going on and keeps moving forward. I want people to know that sometimes when you go through a bad situation that you will be handed a greater purpose. That’s exactly why I named my book Handed a Greater Purpose. Lisa McKinley 39:00 That is such a great title! So appropriately titled. Jason, I want to thank you again for coming on the program, sitting down with us, sharing your story. I know it will be meaningful and impact a lot of lives. So, thank you! Jason Koger 39:22 I would love for people to follow me on Instagram or Facebook or any social media and reach out to me on my website. I love helping people and hearing people's stories. I would absolutely love anybody to contact me and share a little bit about their life or maybe what my life has meant to them. Lisa McKinley 39:43 Absolutely. And where can they find you again? Jason Koger 39:47 It’s jasonkoger.com; jasonkoger.com. I also have a public page on Facebook, I'm on Instagram, I'm on TikTok, I'm on Snapchat. I'm on all the stuff. Lisa McKinley 40:06 All the things. You have teenagers now! They're making you get on all those things. Right? Jason Koger Exactly right. Lisa McKinley Awesome! Thank you, Jason. It's been a pleasure. Jason Koger 40:16 Absolutely. Thank you for having me on. Kimberly Parsley 40:24 If you liked the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts. That helps more people to find us. If you really, really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all! Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put “transcript” in the subject line. Thanks to Steve Moore for helping us out with transcripts. Thanks to Chris Ankin for our theme music. Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Kentucky. You can find links to buy the book A Celebration of Family: Stories of Parents with Disabilities in our show notes. Thanks, everyone!

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Roving reporter, Keith Hosey, tells us about innovative approaches to finding work for people with disabilities. Plus, Kimberly and Lisa talk about pets problems and the news that Walmart is making a push into the disability accessories market.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:03 Welcome to 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. Hey, everyone! Welcome to Demand and Disrupt: The Disability Podcast. You're in for a treat today! I am here with Lisa. Hey, Lisa. Lisa McKinley 00:25 Hey, Kimberly! How are you this morning? Kimberly Parsley 00:28 I'm doing great! So, everyone gets both of us. How are things going for you this August? Lisa McKinley 00:34 Oh my goodness! August is such a crazy time of the year with back to school and all the things. So, we're getting into the rhythm. Kimberly Parsley 00:45 Yes. Have you got the August crud: the germs that the kids bring home? Lisa McKinley 00:52 Both of the kids have, but I somehow managed to avoid it. I don't know how, but I have. Kimberly Parsley 01:01 I got it. Both kids and I have gotten it. Then guess what else we got? Lisa McKinley What? Kimberly Parsley Because there's not enough insanity already in my life, we got a puppy! Lisa McKinley Awww! What did you name her? Kimberly Parsley [laughter] Her name is Phoebe. Sometimes we call her other things [laughter], but she is adorable. We got her from the shelter. She is a pug mix. I say she's more mixed than pug. She's kind of adorable and poorly behaved right now, but we're working on it. Do you have pets at your house? 01:49 Lisa McKinley I do. We have two cats and a dog. Frankie, Kittems and Dixie. Kimberly Parsley 01:57 Wow! Lisa McKinley 02:00 Cats. Everybody needs cats, because they’re entertainment and frustration. Kimberly Parsley 02:09 Yes. [bark in background] Sorry about that, y'all. Welcome to my life: inside the life of a disabled person. It's just like your life, right? Just like everyone else's life. Lisa McKinley 02:20 It's just things and speaking of, yesterday I was trying to have coffee and I hear this noise. I'm like, ‘What in the world?!’ It sounded like the cat was dying and it was coming from the back. So, I ran to the back and I follow the sound, it was in the bathroom. My first thought was, ‘This cat has climbed the shower curtain and it's hung itself somehow on the bar and I've got to get to this cat before it gets tangled up!’ So, I literally reach up there and there’s no cat. Then I realize [the noise] is coming from underneath the bathtub. We have one of those Jacuzzi tubs in the bathroom and the control panel, the access panel, had come off. The cat was under the tub and it couldn't get out, because somehow (this part I don't understand) there was a salad bowl in the bathroom. The bowl had wiggled somehow its way under the tub and was blocking the cat's entrance. So, I got the salad bowl out and the cat came out and it was all fine after that. I still don't know why there was a salad bowl in the bathroom?! Kimberly Parsley 03:35 So, your pets are obviously better behaved than mine? Lisa McKinley 03:39 Well, I don't know. I believe the cat might be peeing in the air conditioner. I don’t know. There's a smell in our room and it only comes on when the air conditioner comes on and it's not in any other place in the house and it smells like a baby diaper that's being cooked, like when they pee in their diaper. I have tried everything! I took off the vent, I sprayed orange Febreze and then it just smelled like somebody peed on an orange. So, if anybody knows how I might get that smell out… Kimberly Parsley 04:20 That’s excellent! Yeah! If anybody knows about that, because Lisa I don't think that's a blind problem! I think that you're not having blind problems! [laughter] Lisa McKinley 04:29 No, I don’t think it’s a blind problem. I don't know why my cats want to climb under bathtubs and pee in the air conditioner vent. Kimberly Parsley 04:39 Yes. Anybody got any tips on Lisa’s many woes or how to train a dog to, well, do anything, really – anything at all – go ahead and send us in those tips to [email protected]. You can put in the subject line, I don't know, just “y'all be crazy!” That's what you could put on the subject line. Lisa McKinley 05:04 Pet problems? I don't know, something! Kimberly Parsley 05:06 Problems! There you go. But, speaking of problems and solving at Walmart, believe it or not, Walmart is looking to solve some of our problems. Have you heard about this? They have a new line of disability things. Let's see, what does it say? It says… Lisa McKinley 05:27 I think they have some weighted utensils? Kimberly Parsley 05:30 Yeah! It’s to better serve their disabled population. It says ranging from clothing to assistive technology. Yeah. They've introduced an adaptive channel on their website. I guess these are things you can only get through their website, not in store but, still, that's pretty cool! Lisa McKinley 06:03 It's really neat that they're trying to be inclusive in that way I think. Yeah, I was reading about it yesterday and one they have in their line of products is a backpack that is designed to slide over the handles of a wheelchair. I thought, ‘Man, that would have never occurred to me as something necessary,’ but I guess it is. Kimberly Parsley 06:27 I'm sure it is. And people who are in wheelchairs I bet know that. Isn’t it nice that they can maybe just get on Walmart and get the stuff they need, we need, all of us need, for a cheaper price, maybe? And man, if that's got like a two-day shipping or something that would be great one. Oh, yes. I'd love it if maybe they get cane tips for the blind. I don't think they have those right now, but if that could be something they get that would just be awesome! And reading the story, it says other retailers have gotten into this thing, too. It says you can get stuff from Kohl's, Target, CVS. Hearing aids now: hearing aids can be bought over the counter at some of these stores. Lisa McKinley 07:18 Hopefully it will be a movement and they’ll be leading the way and more companies will join suit, because we need more products. Kimberly Parsley 07:26 That would be great! That would be great. It'd be great to be able to go into a Walmart when you're doing your back to school shopping and know that all the other kids getting their backpacks are seeing a backpack for person with a wheelchair and that would normalize that. When they get to school and see someone in a wheelchair, it would normalize that. I think that's great, don't you? Lisa McKinley 07:45 Absolutely. Kimberly Parsley 07:48 So, Lisa, how do you feel about traveling? Are you a traveler? Lisa McKinley 07:55 I wish I could love traveling, it’s just not my favorite thing. And I don't know if it's because wherever you go, there you are. I mean, the scenery doesn't really change for us much. [chuckle] Maybe that's it, but then I know a lot of blind people who love to travel, so maybe I'm missing something. What about you? Kimberly Parsley 08:20 Hate it! Absolutely hate it! Absolutely hate it. I like my own bed, I like my shower to be set up exactly the way I have set it up, so I know what's what. Yes, not a fan of traveling, don't like to go much further than the mailbox. I’m quite a homebody so, yeah. Lisa McKinley 08:41 One of the things for travel that I'm not a fan of is I just I feel out of my element. In the house I'm the queen of the house, but when you put me in an Airbnb somewhere it's like, “Okay, where's the stove? Where's the bathroom?” It’s someone constantly having to show me the things and I just, I start to feel like I'm just ready to get home, let’s put it that way. Kimberly Parsley 09:11 Yeah. I went on vacation earlier and a friend of mine was like, “Oh, I'm so sorry!” [laughter] She described vacationing as parenting, but with less convenience, more expense, and with sand up your butt. [laughter] Lisa McKinley 09:36 It's true! Except, yeah, we typically do the whole mountains thing. We don't go to the beach, so not a beach. I don't know what we'd have in place of sand. Kimberly Parsley 09:50 Leaves in your hair or some such. Lisa McKinley 09:53 Mosquitoes and tick bites. Kimberly Parsley Always. Lisa McKinley We went on a vacation not too long ago and someone with us got a spider bite on her butt. Kimberly Parsley 10:04 Oh, wow! That would be terrible! That would be terrible. Well, fortunately for us, our roving reporter, Keith Hosey, went to the APSE conference [pronounced app-see] not long ago. I believe it was back in May. So, he did some interviews for us so that you and I could stay at home, queens of our castles, and not go. Lisa McKinley Thank you, Keith! Kimberly Parsley Exactly! So now we're going to hear some of what Keith talked about at the APSE conference. Kimberly Parsley I'm here with our roving reporter, Keith Hosey. And he's going to give us another roundup of interviews that he conducted and people he talked to at the APSE conference. Hello, Keith! How are you? Keith Hosey 10:50 Hi, Kimberly, I'm doing well. How are you? Thanks for having me. Kimberly Parsley 10:54 I'm doing wonderful. Thanks for doing this for us! I appreciate it so much. So, tell our listeners again, what is APSE. Keith Hosey 11:03 APSE is the Association of Professionals for Supporting Employment First. That is their current acronym. When they started originally, it was the Association of Professionals in Supported Employment. So, it is a professional membership group for individuals who work in the field of helping people with disabilities find jobs. Kimberly Parsley 11:30 That was a really, really well put and succinct way of defining supported employment, correct? Keith Hosey Yes. Kimberly Parsley Excellent! Helping people with disabilities find jobs. That's great. That's excellent. Perfect. Tell us about the first person we're going to hear from. Keith Hosey 11:49 This interview is with Rachael Lanter, who is one of the co-directors of an agency out of Lexington, Kentucky, serving Central Ky., and that agency is called Build Inclusion. They do supported employment and other related services for young adults with disabilities. Kimberly Parsley 12:11 Yes she's very well spoken. She's very passionate about what she does, isn't she? Keith Hosey 12:19 She absolutely is and full disclosure: I know Rachael; I also serve on the Board of Build Inclusion. I obviously saw her at the conference and pulled her aside and said, “Can you be one of our interviewees?” So, she was one of the individuals we interviewed. But she's, yes, she's really great! Great at her job and you can tell she's passionate when you hear her talk. Kimberly Parsley 12:48 Excellent! Now, a real quick go over. She talks about “Person First.” Can you tell us a little bit about what that means? Keith Hosey 12:58 Absolutely! Person First, person-centered services, is a mode of providing services to individuals. The idea is that the person is in the center of the services. The old model of delivering services to people with disabilities was that there was a professional on one side of a desk in a suit, telling that person with a disability what would be best for their life and their disability. Long story short, along came this thing called the Independent Living Movement as well as the Disability Rights Movement and it changed a little bit. People with disabilities said, “You know what? We think we might be experts in our own bodies and minds and selves. We think we should have some say in what happens to us.” So, what happens is this: all of these different disability services have slowly over the years changed to this idea that maybe that person with a disability does know what they want in life or what might be best for them in life. So, it's just a really funny way of saying something that those of us that have been around in the independent living movement find as kind of just secondhand, it’s natural. But it is kind of a new concept for some other disability service agencies and industries. Kimberly Parsley 14:30 Okay. Great! Keith Hosey 14:32 Kimberly, by new I mean not like the last three years, but last 15 years or so. Kimberly Parsley 14:41 Right. It's so interesting, isn’t it? There was the 70s where really lots of social movements were taking place. Then, of course for us, the ADA was the gold standard that happened in 1990. So, yes, new now is right about 10 to 15 years. Yes. Let’s listen to Keith's interview with Rachael at the APSE conference. Keith Hosey 15:14 We're here with Rachael Lanter with Build Inclusion, which is a nonprofit agency here in Lexington, Kentucky. Rachael, I want to ask you a couple of questions about supported employment and the work that you do. Rachael Lanter Sure. Keith Hosey First of all, can you explain what supported employment is to me as if I didn't know? Rachael Lanter 15:33 Sure. Supported employment in a nutshell is how we get people jobs that really highlight their skills and strengths. So, you think about traditionally you go out into the workforce, you find a job that appeals to you. But how do you know when a job appeals to you? Right? So supportive employment is how we help people understand what are their skills, what are their strengths. Then, we help them get jobs in the community that meet not only their interests and skills, but meets an employer’s needs in the community as well. Keith Hosey 16:06 When you’re providing supportive employment, so that our listeners understand, are you going to meet with people in an office behind a desk? Or are you going to be…? How does that look when you're helping someone find a job? Rachael Lanter 16:19 [chuckle] Sure. I kind of chuckle because at this point, I don't even have a desk because you don't need one? No! No, of course not. When you work with someone in supported employment, you are out in the community. We joke all the time, we're boots on the ground, we're out in the community. My favorite part of supportive employment is the discovery process. That’s the part in the very beginning when we’re just getting to know somebody. We get to be out in the community, we go to their homes, we get to do things that they're already enjoying and that's how we get to know people. Right? That's how you meet, that's how you would make friends, that’s how you would get to know anybody. So, that’s how we kind of uncover things; discovery is exactly what it sounds like. You're discovering their interests, their skills and strengths. We're at libraries, we're at parks, we’re trying out different activities in the community, so I’m never at a desk [chuckle]. Once we get through the discovery phase, once we kind of have a good idea of what makes somebody unique, what's their spark, then we can use that information to help guide the job development process where we help them find a job that really kind of appeals to those interests, but also highlights the strengths and skills that they have. Then, once we get somebody a job, we get to go to work with them and offer support to them on the job, which is also really, really neat, because then we get to help facilitate them as they're growing and they're learning and they’re getting all these new tasks in and we get to help see that they're set up for success from the jump and then we'll get to watch them grow in their job. Keith Hosey 17:45 So, your job isn't done when you find someone a job. You support them on that job and help them learn their job, too? Rachael Lanter 17:52 Absolutely! Yes. And at Build Inclusion we have a saying that once we work with them, we're always going to work with them, because we want to help people. We don't want to just walk them into their first job ever and be like, “Okay, have fun! See you.” No, we want to be there as a source of support for as long as we possibly can and make sure that from the jump they're set up for success. But we're always going to be there to help support them in their journey. So, it could be that like today, I'm helping someone sign the initial paperwork that they're going to be hired on. But six months from now, I get to still be there to pop back in and say, “Hey! How’s it going? What can I help you with? What can I do to support you right now?” And we've had people, too, that [after a] couple years on the job are like, “You know what? I would really like to move up, but I'd like to find something else. I've gained these skills and I’d like to find something else I can put these skills to use at and I want a challenge.” We can help them with that, too. So lifelong. Keith Hosey 18:49 You mentioned being out in the community with your clients or consumers. What's the coolest job you've ever supported someone on? What's the most interesting job or most interesting company you've ever visited? Rachael Lanter 19:06 Oh, yeah. That’s a tough one, because I've been to so many different cool places with people. One of my favorite stories, though, I think, and it's not necessarily unique or whatever, but it was a full circle moment for this person. I helped someone get a job at a daycare and the specific daycare that she really was very adamant that she wanted to work at was a daycare that specifically helped kids with higher, more significant medical needs than a traditional daycare would feel comfortable serving. It was really important to her, to this employee, to give back to the community that helped raise her. It turned out, at one point, she did go to that daycare and then she tells me all the time, “I'm so happy here! I get to help raise people's kids and show them what it looks like to work with a disability.” She's moved up the ladder and she has all these certifications now. She's got her CPR, she's got her CNA, she's got all these different things. And the daycare that she went to now is helping her grow in that role. And she gets to show the kids that she works with all the time, “Hey, this could be you! You're at stake, you're little, you're still learning and growing, but look at your future. The possibilities are endless!” So, that for me is the coolest thing. It’s not the most unique or the most interesting maybe for other people, but it's been the coolest to get to be part of her journey in that. Keith Hosey 20:30 That, and I would say, myself working in supported employment, the most exciting thing is when someone gets that job. You work with someone and you see them put in the work and put in the sweat and then they finally land that job. Nothing better in my world than someone calling me to say, “I got the job!” Rachael Lanter 20:53 Yes. Absolutely! Keith Hosey 20:57 Tell me a little bit [of your experiences], because we all have various backgrounds, even though we're working in supported employment. When you think about your jobs before working at Build Inclusion, what's the most fun or coolest job you've ever had? Rachael Lanter 21:15 The coolest job I've ever had. I was a nanny once upon a time. That's how I kind of worked my way thru college and grad school. Before I found my way into the disability community, I was a nanny and that was a really cool experience for me, because basically, I got paid to hang out with these cool kiddos and hang out at the pool all day. But I learned a lot about different approaches to parenting and raising kids and I learned about the Montessori method for the first time. Maria Montessori as you know, had a really significant role in the disability community and disability education eons ago. So, that was kind of my first introduction. This family was really into Montessori method and really into digging deep and into individualized things, not just like standard education, standard parenting, and everything was very person-centered. Even though I come from a background in social work, that was really my first introduction to person- centered anything. That was a really cool and fun job for me and it was because of the parents I nannied for. They encouraged me to find my way to social work, because I was on a totally different trajectory before I met them. They were like, “We've really been thinking about you and we can tell that you're not really happy with the career choices you're about to be making. Maybe you feel pressured into that way.” I was looking into clinical psychology and that was a lot more clinical than I thought I wanted. They were like, “Have you looked into social work?” And I said, “Okay, I'll look into it.” I fell in love with social work and it was because of social work, my Master’s program (I had to do a practicum placement, an internship). I was like, “What would be the least likely thing that I would have had an experience with before? What would be something out of the blue that I have no idea of, I've never done anything like that before.” I was like, “I don't have a lot of experience in the disability community and I'd like to.” So, I found my way to Build Inclusion and fell in love with the work! It’s crazy how just a job like helping take care of somebody's kids for the summer and hanging out at the pool can land your dream job, where you get to help other people find their dream jobs! Keith Hosey 23:27 That's great! And I think that's such an important story for our listeners, most of whom are individuals with disabilities. Just that natural experience of one job leading to another job to another career. I think the statistic is now people don't just change jobs several times in their adulthood. People change careers three or maybe five times in their lifetime. So, the idea of going somewhere and working your whole life there is really an idea of the past, Rachael Lanter 24:06 I was just telling somebody the other day, we don't live in a society where we're expected to work at the same place until we retire. If you don't have the luxury of a retirement fund, you work somewhere until you die. That’s a really antiquated idea. I kind of love that we've moved away from that, because we're human beings and we are not meant to stay stagnant. We're meant to evolve, we're meant to be dynamic and we're meant to change our minds. I think that's kind of a really neat platform that if we come from the background and the idea like, “Yes, I'm gonna help you get a job today, but what if you change your mind?” Or, “What if you meet somebody at that job that leads you to a bigger and better thing?” That's cool! That's fun! We're meant to do that. We're meant to evolve and change and you're not going to be the same person today as you will be in five years. You may be totally different and that's fine. Keith Hosey 24:54 Thank you. Rachael Lanter Yes, welcome! Kimberly Parsley That was great! So, Keith, the next interview was with Teresa Brandenburg and she is with the Human Development Institute at the University of Kentucky. Can you tell us a little about her and what she does? Keith Hosey 25:14 Sure can. Teresa is one of the fidelity reviewers (I'll explain that in a minute) for Kentucky's Individual Placement and Support program, which is a type of supported employment. Rachael talked about supported employment in general. The IPS model here is one way of delivering that service. It’s an evidence-based model and Teresa talks a little bit about that [specific] model. She's a very smart individual and she's been doing this work for quite a while. Before she worked at the HDI (Human Development Institute) as a fidelity reviewer, she worked for state Voc Rehab for a number of years and retired from there. So, she really has a wealth of knowledge and knows a lot of people around the state and is just a really great person. Kimberly Parsley 26:23 Okay. Let’s listen to Keith's interview with Teresa. Keith Hosey 26:31 We're here with Teresa Brandenburg who works for the University of Kentucky's Human Development Institute. Teresa in her role at HDI is a an IPS supported employment trainer. I’m going to let Teresa explain exactly what IPS is and how it works. Teresa Brandenburg 26:53 Hi, Keith! Thank you for having me on here. IPS stands for Individual Placement and Support. It's a specific supported employment program that was developed out of Dartmouth University back in the early 2000s. It has done all the tests and norms and things like that and it's an evidence-based practice for people with severe, persistent mental illness and substance use disorder, to help them go to work; to provide the support so that they can go to work and gain competitive integrated employment. Keith Hosey 27:24 slinky. When you say that it is evidence-based, what exactly does that mean? Teresa Brandenburg 27:29 Well, the researchers have done all the studies and it has a fidelity scale, a 25-item fidelity scale. They did all the studies to determine what's going to work the best to help to make people the most successful at work. So, they developed this 25-item fidelity scale that people adhere to and it’s a kind of roadmap for implementing IPS supported employment. There are also eight practices and principles that it goes to. One of the major ones is zero exclusion. So, as long as anybody says that they want to work and they have that severe and persistent mental illness or substance use disorder, they can be eligible for IPS services. It’s a team approach. So, we work in partnership with the Office of Vocational Rehabilitation here in Kentucky. The IPS program itself is international; there are about 24 states and four or five countries such as New Zealand, Portugal, Italy, England, just to name a few. I know it's those four, for sure. So, it is international, not just located here in the United States and it’s kind of all over the world. It’s helped lots of people go to work. There’s about a 43% success rate across the international landscape for IPS and that's one of the highest success rates for people working with disabilities to get for people with disabilities going to work. Keith Hosey 29:05 So, I want to ask you. You mentioned zero exclusion as part of the IPS model and I love that aspect of it because basically, it says, “We're going to assume someone is able to go to work.” In so many aspects – a lot of our listeners are individuals with disabilities – in so many aspects in our society, people with disabilities run up against [negative public attitudes toward the working abilities of the disabled that create] barriers. But, what this practice [zero exclusion] is saying is that we're going to assume that you can work and we're going to help you find that job. Teresa Brandenburg 29:40 That's right! No matter. It doesn't matter if somebody said you're not work ready. You have a history of incarceration. You may have a history of violence in the past. If you are still actively using substances, you may not be attending therapy or not even be medication compliant. No matter what, it's zero exclusion: if you say you want to work, this program will work with you. Keith Hosey 30:06 Teresa, you also mentioned individuals. This practice, all of the data shows that it works really well for individuals with severe and persistent mental illness. For our listeners, I just want to kind of explain that those individuals who fall under that category are individuals who may have active psychosis, they may have a diagnosis of schizophrenia, schizoaffective disorder, bipolar disorder, major depression. So, the employment rates for individuals in this category traditionally are very low. Oftentimes individuals are not accessing the systems that can help them. But you're here saying that this system that an agency could come and pick up to serve these people is getting a 40 something percent success rate, which is phenomenal. Teresa Brandenburg 31:07 I am saying that and it is phenomenal! I have a background in vocational rehabilitation. I worked in that field with the public VR system in Kentucky for 27 years. Prior to that I did work at a substance use facility. Of all the programs that I've ever worked with, this is the best. It's been the most supportive and the most successful in it. Keith Hosey 31:33 So, I think that what my takeaway is from this, really, is that there are a lot of individuals out there who might have those diagnoses and have tried to work and have not been successful and have been discouraged, that there is a program out there for you and you can access it in any state. There can be success and you can find a job and a career and live in that recovery model. Teresa Brandenburg 32:07 That's correct. We train people. I'm one of the trainers for the state. We work with the different providers that we have in order to help them provide quality services so that people that have experienced maybe job loss or not being employed in the past because of their mental illness or substance use disorder, that they can go to work and be successful. We look at even a job loss: we do not look at that as a negative thing. That's kind of a positive thing, because we can look at what didn't work and what worked in that job. That gives us more of a focus to go down that we're going to look at what worked with it. So, we’ll move that on to the next job. Keith Hosey 32:50 To me that makes so much sense, as someone who's worked in supportive employment for so many years. Sure, it stinks to lose a job if you're fired or maybe even if you quit because you feel like it didn't fit right for you. But, looking on the bright side, “What did I learn from this? What can I bring into my next job? Maybe I know for sure I don't want to work in the food industry anymore. Maybe I want to try an office job now and see if that works for me.” So, this idea that we're constantly learning – and I am a lifelong learner – I love that. It just makes so much sense to me that would be an aspect. That’s a great lesson for all of us. We can all take that away. Teresa Brandenburg 33:41 Right. And I think we all do. None of us have stayed in the same job that we started out in. We've progressed over the years and people with disabilities need to be able to progress, too. They should be able to progress just like us and that's one thing that this program does. You might start out in a certain job. But as you grow, that employment specialist can help you change careers if you decide to. You may work in one thing and think, “Oh, no, I don't really like this, but I really have an interest in this.” They can help you explore that and move on to a different career or move on up in the career that you've chosen. Keith Hosey 34:16 I think one of my favorite things about IPS supported employment is something that I learned early on in my career in disability rights [and that] is that oftentimes people with disabilities are handled with what some say, “kid gloves.” I’ve heard people say we want to make sure our participants are safe and things like that. But to me having the right to fail – those aren't my words, those come out of the independent living movement – the right to fail is a right as well. To get out there and to get into a real job and to try it out and to learn a lesson, even if you fail on that job, as a person with a disability, you have a right to fail as well, and learn and move on and get a new career. Teresa Brandenburg 35:11 Right. Just like anybody else. Nobody's gonna always be successful. There always can be failures and we learn from those failures. Then, we can pick ourselves up, we learn from those and move on and do bigger and better things. And people with disabilities can do the same thing. Kimberly Parsley 35:36 Keith, in the interview, Teresa talks about a fidelity scale. Can you tell us a little about what that means? Keith Hosey 35:43 Yes, absolutely. Fidelity in this context has to do with treatment and/or research and all it means is adhering as much as you can to the parameters and the model so that you can get similar outcomes. Just as fidelity means in a marriage means staying true to your partner fidelity in treatment means staying true to that evidence-based model. So, in the context of Teresa's interview, we're talking about an actual scale that measures that so you can look at it and say, “How closely are we practicing this evidence-based practice? What can we improve and do better?” Because the better we do in this prescribed practice, the better our outcomes are. Kimberly Parsley 36:43 I see. I understand. Thanks! That was very helpful for a term that I personally was having a little trouble wrapping my mind around. So, thanks for that. And that’s fidelity that all of these different areas around the state who are practicing this kind of evidence-based approach, it's how faithful they're being to the model. Correct? Keith Hosey That's correct. Yes. Kimberly Parsley Excellent! All right. Thanks, Keith, and thanks for all your great work! And, of course, we can't end a segment without an update. I know you've got some interesting updates coming out on ADAPT. So, give us a little tease about what's coming up for Kentucky with ADAPT. Keith Hosey 37:28 I do! We are moving forward with starting a chapter of ADAPT in Kentucky [Americans Disabled for Accessible Public Transit]. There is going to be an initial training, it’s being planned right now. If people are interested in being trained or being some sort of part of this ADAPT movement, they can email [email protected]. [Again] That's [email protected] and they can get involved in this grassroots movement. Kimberly Parsley 38:08 I love the email chain, it's already going through. I love how it says that it will be training the people who will train others and that it is not required that you get arrested. [laughter] Keith Hosey 38:22 That's right! I think ADAPT sometimes gets a bad rap, because what we see in the media often is that last step in their advocacy efforts [i.e. peaceful resistance]. We don't see the months that they spend talking to elected officials and engaging with elected officials, calling and meeting and all the theatrics that they do. It is the direct actions, the non-violent direct actions as a last resort. But it should be an option out there. Kimberly Parsley 39:06 As a parent, nothing would make me prouder than for my kids to have to come with my husband to bail me out of jail because I got arrested for protesting on behalf of mine or someone else's civil rights. Keith Hosey 39:25 I know that I I'd be lying if I said that I did not have the same thoughts. So many people I've talked to while trying to get this up and alive have the same [belief]. Like, “Man! That's really on my bucket list to be I want to be arrested in an ADAPT direct action.” Sure! But for some of us, job security may depend on that not happening. So, there's certainly a seat at the table for anyone who's interested in advocating for the full and inclusive rights of people with disabilities. Kimberly Parsley 40:09 Absolutely! ADAPT-KY. I'm telling you, that's where all the cool kids are going to be. So, anyone who's disabled or just a disabled ally, an ally to the disability community, sign up and let's get some things going. Keith Hosey 40:25 And me! It's all the cool kids and me. I'll be there. Kimberly Parsley 40:29 Thanks so much, Keith! Thanks for all your great work. We appreciate it. Keith Hosey Thanks, Kimberly. Kimberly Parsley If you like the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple Podcasts or Spotify or wherever you get your podcasts. That helps more people to find us. If you really, really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all! Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put “transcript” in the subject line. Thanks to Steve Moore for helping us out with transcripts. Thanks to Chris Ankin 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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Lisa speaks with Amanda Mobley, Executive Director of The Center for Accessible Living about the history, as well as the services offered by the center. Amanda shares how a house fire led to her father becoming disabled and how this experience gave her a greater appreciation and understanding of the disabled community. Inspired by her father and his memory, Amanda shares how the experience led her into a career helping others navigate disability.

Lisa and Amanda discuss how the concept of independent living doesn’t always look the same for everyone, and that we all have to start somewhere on our journey toward greater independence.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:00 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 Avocado Press, based in Louisville, Kentucky.

Lisa McKinley 00:13 Hello! Welcome to the program, I'm Lisa McKinley. What comes to mind when you think of independent living? Or living life in a more accessible way for people with disabilities? Here at Demand and Disrupt, we seek to help the disabled community and the community as a whole by bringing light to these important yet often overlooked topics. Today we're going to talk about independent living in the state of Kentucky and our next guest is here to help us with just that. Help me in welcoming Amanda Mobley. Amanda is the Director of the Center for Accessible Living here in Kentucky. She is a passionate advocate for disability rights and she works hard to ensure that disabled folks across the Commonwealth are able to live independent lives. Thank you, Amanda, for joining us today! Welcome to the program. How are you?

Amanda Mobley 01:14 I'm good, Lisa. Thanks for having me! How are you doing?

Lisa McKinley 01:17 I am great. I'm very excited that you are here today and I am excited that we have a program like the Center for Accessible Living! Tell us a little bit about yourself and how you came to work in the field of disability rights and advocacy.

Amanda Mobley 01:35 Alright. It's really not a fun story, probably, but I am going to tell it to you. Really, I didn't have a lot of experience with working with people with disabilities until about 2012. My dad was involved in a pretty significant accident (he was actually in a fire at home) which he was in the hospital in UK for, I want to say six to eight months. He came home with very limited mobility and dementia that was onset from the trauma that he endured. It's like we went from no disability to that and that was a difficult thing. So, my family and myself were all involved in advocating for him, because he couldn't do that himself. We made sure he had everything he needed – all his supports – in place so that he could live at home, which he did until he passed away in 2018, which I'm very proud of. My mother took care of him, my family took care of him and that was an awesome thing.

In 2015, I was drifting, because I was never really set on one thing. I didn't know what I wanted to do with my career and I was always changing and I saw it. I was looking for a job, because I didn't have one, I had just come back from Utah, I had moved there. I just came back from Utah and there was an advertisement for a Personal Care Attendant Program coordinator in my area. So, I applied and Jan Day and Keith Hosey, two awesome advocates and awesome mentors for me, interviewed me at the Hampton Inn conference room in London, Kentucky. I just fell in love with them and with the CAL and what we do and what we stand for and that’s just how I got started. It was just a fluke and I'm really blessed that I got started in this when I did and how I did and here I am today!

Lisa McKinley 03:45 Wow, that is an incredible story! I love it when people can use events like that in their life and turn it into something positive, especially when it helps the community as a whole. It sounds like you've really done that. Thank you!

Amanda Mobley 04:04 Yes. Yes, of course! And I'm grateful to do what I do and I am grateful for all the people that have taught me to do what I do now, before. It's been an awesome ride so far.

Lisa McKinley 04:16 You were recently appointed Executive Director of the Center for Accessible Living. Can you tell us a little bit more about the Center and what might be some of your goals as Director?

Amanda Mobley 04:30 Yes. The Center started out off the heels of the Civil Rights Movement and people with disabilities were like, “Hey, we deserve equal rights as well!” They did studies in Louisville and they found out that there was a housing crisis for people with disabilities. There wasn't accessible housing for them. So, in the early 80s, that's where CAL came to be. We were pretty much a housing resource for people with disabilities. It just grew from there and now we’re this huge, awesome Center for Independent Living and I'm so grateful for that.

Right now, I want to make sure that we're moving to provide the services that people need and I think those needs for people with disabilities change all the time. So, I have an expansion committee together at work. I've put that together, I have some staff that are on the ground. They're the ones that are in contact with consumers and they are going out and figuring out what is the need, what people need the most, what can we help them with that would allow them to live more independently. And we're trying to find grants and programs and put things in place for those specific needs.

Lisa McKinley 05:51 When I first was exposed to the idea of independent living, I thought that just meant living as a disabled person by yourself and doing everything independently for yourself. I now know that's not exactly true. Can you tell us a little more about independent living and how it's not always living on your own, but maybe more embracing the things you can do?

Amanda Mobley 06:22 Yes. It's funny… Every person's idea of living independently is different from someone else's. It’s never going to be the same, it's not going to be strictly, “Hey, I'm moving out to my own apartment, I'm gonna live by myself.” I think it depends on that person and their situation and how they want to feel independent. So, it's a matter of meeting with consumers and identifying those goals consumers have for themselves. It may be someone may want to just be able to cook a meal for themselves. That's what makes them feel independent. They live at home, they don't really want to move out and out of the place where they couldn't move out or feel comfortable moving out, but they want to be able to cook a meal. We can help them with that. That would be that person's independent living goal. I think being open and understanding of the independence is not a cookie cutter thing. Everybody's is different.

Lisa McKinley 07:16 Do you see once a person gains independence in one area, it kind of motivates them to try new things and to try to branch out and gain even more skills?

Amanda Mobley 07:30 Absolutely! It's a beautiful thing, actually, to see. We see it every day. I get to see it in Louisville. When I worked with PCAP, I worked remotely at my home office and I did see that somewhat. But now I'm in Louisville and I'm really there, I see it all the time and it is an amazing thing to see and it is an amazing thing to witness! I think it's so awesome to see someone come in and they're only goal was to budget better. And then they see they can do that and they're like, “Hey, I think I really could move out on my own now that I've got this budgeting down!” “I've learned how to cook. I think I can live independently on my own! That's what my goal is now.” I think that's so neat to see that happen! And it's really awesome thing to watch.

Lisa McKinley 08:19 I'm sure! It's important to really celebrate those milestones. I remember moving to my first apartment and the dumpster was, I don't know, maybe 1000 feet from the apartment and finding my way with the cane with the big, old garbage bag to the trash can. I was so excited, but I didn't want to share that with anybody, because I thought, “You just took a bag of garbage to the trash can.” But it's those little things I think we need to celebrate and those really help encourage people to move forward and take on other tasks. Thanks for being in that role and encouraging people in that way. Can you give some examples of how you've seen people really grow and start their journey to independence?

Amanda Mobley 09:11 Yes. Like I said, I see it every day at work. It really is a constant thing and I read the reports that all the staff give me and they all have amazing things happening. But specifically, I've seen a consumer specific that, he actually works in the Louisville office and he came there for some work study. He just wanted to work on employment supports and things. Now, he’s looking for his… He's volunteered with us and now he's looking for his first full time job. To me that's just awesome because I saw him when he first came in and he was so nervous, but the sweetest little guy, and then now he's ready to move on and he's ready to do big things! I think that's just great and awesome for us!

Lisa McKinley 10:08 That's amazing! I recently read a story where a young lady she had a learning disability and a reading disability. At 16, she couldn't read or write and it was discovered through the school system. She joined a program similar to CAL, the Center for Accessible Living, and they were able to address those issues and help her and now she has a graduate degree from a university! That is where the Center really is important in joining alongside people and helping in that manner.

Amanda Mobley 10:49 What’s funny, too, is that I started out… I've worked really hard my whole life. At every job I've ever had, I've always worked really hard. I had a good work ethic and I’ve always liked things particular, never realized that I had a disability until 2020. I lived my whole life (I’m 37 now, giving my age on here…) but in 2020, I was very picky, I was moving into new roles at work, I was taking on more tasks. I wanted things done a certain way and it was really getting difficult for me to do that because my schedule was getting fuller and I had more things on my plate. I was like, “This isn't [right]. Something's off and I don't know what it is.” So, I started doing some telehealth and I was diagnosed with obsessive compulsive disorder that they said I probably had my whole life based on how my childhood – my answers and things were – as well as attention deficit. I have ADHD, I think I'm saying that right. I only know about ADHD, so I'm probably saying that incorrectly. But, yes, it's so… Now I look at it and I’m like, “Hey, I lived my whole life and I didn't even know that I had that. Now, I am doing it and I'm doing this great thing that I probably, if I had known, I don't know that I would have ever made it, if I'd had that big plate full before. But here I am!”

Lisa McKinley 12:16 Wow! And people don't really, I don't think they give a lot of credit to disorders like ADHD and learning disabilities and reading disabilities and how much it can set you back if you don't have the proper networks in place to help you along the way. That you were able to recognize and overcome and do what you're doing now? I'm sure you can use that experience to help other people in similar situations. Do you assist anyone with things such as that?

Amanda Mobley 12:54 Yes, I do. When it first happened, I didn't really know what to think because, like I said, I lived my whole life before I even realized it and I just thought I liked things particular. So, now that I realize it, I'm very open to people at work and I’m very like, “Hey, this person…” When someone comes to me, a staff comes with a problem and they're like, “I can't get this consumer to do this,” they very well could have some undiagnosed disorders like that, because I know I'm absolutely connecting with them on this level because that was me! So, I do, I try; I try to meet with the consumers that are dealing with that. I try to mentor them as much as I am able to.

Lisa McKinley 13:41 I think nothing puts a person more at ease than being able to speak with someone who has been there and who has been in their shoes and has overcome. This program has actually helped me in that way: learning about all the things you all are doing and that there are disabled people out there taking control and getting it done and not letting things hold them back. You all are responsible in part for some of that so, thank you!

Amanda Mobley 14:14 Yes. I'm really proud of the work we do and for people like you. Look at you! You're an advocate for us and we love that.

Lisa McKinley 14:23 What types of disabilities do you see quite frequently? I don’t think people are aware of all the different types of disabilities. You just think of maybe blind people or people with mobility issues, but there are so many out there.

Amanda Mobley 14:37 Yes, there are. When I came to Louisville, I saw more because with PCAP, it was mainly quadriplegics that I dealt with mostly on that program because they had mobility issues. We did have some paraplegics but for the majority, it was those consumers with mobility issues. Then, I came to Louisville and it's so much more than that and we are seeing a lot more recently of the mental health disorders and things like that. So, I think that's coming into play a lot more now. That's kind of where we are also, when I tell you that we're looking at other needs in the community. We're seeing that those needs are not really being met the way they should be.

A lot of that's coming in. I think that can be the catalyst for a lot of other things. The housing issues [for instance]. If someone has some mental health needs that aren't being addressed, they're gonna have probably issues in finding housing or maintaining/paying their rent on time. All those things, they're gonna have trouble with that. We’re seeing a lot of that. We do see a lot of mobility issues, especially in Louisville. There is a lot of that, but I think right now, to me, the most pressing and the most common that I'm starting to see, the biggest increase, is the mental health.

Lisa McKinley 16:04 Are you able to help get consumers plugged into resources like therapy and counseling that can help them?

Amanda Mobley 16:12 Yes. Yes! We're working on a lot of partnerships. Currently we refer them out, because we don't [have the expertise]. But with independent living skills, they can still teach people with some mental health issues. They can teach them, “Hey, this is how you can do a budget.” I needed someone to do that with me, actually, and I didn't/they never did, but I would have had a lot better finances if I had. So, we do still help them on that level. But we are working with partnerships throughout the state on being sure that we're there and we're getting them what they need when they need it as quickly as we can possibly get it to them.

Lisa McKinley 16:50 We know there is a mental health crisis here in America. So, the fact that there are organizations ready to walk alongside and offer help and guidance to people struggling with mental disabilities or what have you is something that we shouldn't overlook. It's very important and it’s great that you all are doing that! Do you have any advice for someone who is disabled and they’d like to be more independent? They know they're maybe not as independent as they should be, but there hesitant to leap out and step out in faith and take the first step? What kind of advice would you give them?

Amanda Mobley 17:41 I would say two things. One, I would say contact CAL. This is my plug for accessibility, the Center for Accessible Living. But absolutely contact us because we can help you figure out what that next step is. But also, don't be afraid to make that next small step, because I think it can be [like], “I'm in my house all the time. I'm scared to go outside. I'm afraid I'll fall.” The fall risk. Start going out to the porch. Make those small steps to where [it becomes], “Hey, I'm starting to do things more. I'm starting to be more active. I'm feeling more independent in this.” Make those contacts to people, but definitely if you reach out to us we can we can get you in contact with the right people or we can help you in any way we're able to.

Lisa McKinley 18:24 Now you have offices where at in Kentucky?

Amanda Mobley 18:28 Our main office is in Louisville, Kentucky. We're on the corner of 2 nd [Street] and Mohammed. We have an office in Bowling Green. It's a smaller office, but it's there. It's on Destiny [Lane]. It’s off of Destiny Lane. And we have one in Murray. I think it's on 16th Street, let me make sure. Yes, it's off 16th Street. Those are our three main offices, but we also have remote workers throughout the state and if we aren't, if [your area] isn't in our service area, if there's another place that is in [your] area, you can still reach out to us and we will absolutely get you in contact with the right place.

Lisa McKinley 19:12 Is there anything else that we haven't talked about that you'd like to mention about the Center? Any [additional] goals you all might have?

Amanda Mobley 19:23 Yes. Right now, like I said, we're focusing on the main needs. If you're listening out there and you're like, “Listen, this is a need that we don't have filled here. I'm in rural, far Eastern Kentucky. This is a need we have and it's not being met,” [for example]. You can email me directly. Email me, I'll talk with you, we'll meet up, we'll figure it out and we'll do… I'm doing my very best to get things taken care of like that or at least start them. Obviously, I can't take on everything.

It's funny. We just appointed a new Assistant Director which is Lauren Mountz and we also have the Coordinator of Services which is Erika DeSha in Louisville. Those two are my saving graces! They help me so much I don't think I could get through the day without them, because Danny they're always the remembering a meeting for me or remembering something that I've forgotten or working on something for me that I need. I'm so grateful for those two, but they also keep me in check, because I’ll tell you, if I could take on every single thing in the world, I would do it! That's how passionate I am about independent living! But they are kind of keeping me [like], “Hey, let's work on this thing right now and we’ll work on this bigger thing next.” So, we’re working on it; we’re really working on drawing, I think we went back to basics. We lost quite a few programs, we're starting back at basics and we're trying to grow and really provide those services that people need right now.

Lisa McKinley 20:49 So how do people find out more about the Center for Accessible Living or get in contact with you or your offices?

Amanda Mobley 20:58 They can go to our website, which is www.calky.org and that has all of our services. We are updating that, that's not a very up to date page. We're working on that. In the next month that should be updated. Or they can reach out to our individual offices. For Louisville, Kentucky the number is 502-589-6620. For Murray the phone number is 270-753-7676. For Bowling Green the number is 270-599-0911.

Lisa McKinley 21:39 Thank you! And we will be sure to put those numbers and information in the show notes. Thank you, Amanda. It has been an absolute pleasure speaking with you today and thank you for everything you are doing on behalf of the disabled folks across the Commonwealth!

Amanda Mobley 21:58 Thank you, Lisa. I appreciate all you're doing for us! Let me know if you guys need anything. If anyone needs anything out there in virtual world reach out to me.

Lisa McKinley 22:08 Thank you. And thank you listeners for joining our program today! As always, tune in next time.

Kimberly Parsley 22:19 If you liked the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts. That helps more people to find us. If you really, really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all! Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put “transcript” in the subject line. Thanks to Steve Moore for helping us out with transcripts. thanks to Chris Ankin 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!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Kimberly talks to Esther Ratajeski and Grace Jeter from the Statewide Independent Living Council, and Lisa interviews Bobby Begley, a long time supporter of the SILC and participant in the independent living movement in Kentucky.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:04 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 Avvocato press, based in Louisville, Kentucky. Hello, everyone, and welcome to this episode of demand and disrupt a disability podcast and we are going to learn about all things Independent Living canceled today. And what is the Independent Living Council us? Well, you're about to find out. And by the end of this episode, you will know everything you ever wanted to know about it. And joining us first is Esther Ratajkowski. And she is the coordinator for the Statewide Independent Living Council. And it just gets shorthanded for people in the know as the silk SLC. So, Esther Welcome, and thanks for joining us. Esther Ratajeski 00:58 Thank you, Kimberly. It's great to be here. Kimberly Parsley 01:00 So tell me about yourself and how you ended up becoming the coordinator for the CIL Esther Ratajeski 01:06 i The Long story. I came to Kentucky in 1997. As a grad student in geography, totally unrelated, I worked as a geography professor at Morehead State University for four years after my degree was finished. And then I took time off to be a mom. And I was home with my kids for 10 years. And then one of my friends who knew about the opening on the silk and she knew that I was looking to get back into a more professional position, thought that I would be able to do it well and that I should apply. So I said, Okay, why not? And I applied, and I got the job. And I didn't know a lot about independent living. This was in 2020. So it's only been three years. But I knew I had the skills that are needed for the job of working with people writing, reporting, assessment, organizing meetings, all those kinds of things. And I it's been a great job for the past three years, I've learned a lot. Kimberly Parsley 02:10 So tell me what is the Statewide Independent Living Council here in Kentucky. Esther Ratajeski 02:15 It is a cross disability Council of citizens. So that means people with all different kinds of disabilities not just physical or developmental but any kind of disability. The citizens are appointed by the governor. And more than half of them are required to be people with a disability. It is there's one in every state and territory in the United States. There are federally mandated Council funded by the federal government. And the silk has a lot of different duties. But in general provides leadership for Kentucky's Independent Living network, which includes both the council and the Centers for Independent Living. Kimberly Parsley 03:01 So tell me about that. Tell me about the Independent Living network in Kentucky. What that consists of Esther Ratajeski 03:08 it is the Statewide Independent Living Council plus we have centers for independent living that cover about half the state we're really kind of under represented. Some states have their called SILS CISL Center for Independent Living. Some states like Florida, I know they have one in every single county in their state. We don't have that. But we do have Center for Accessible living, which has to locate three locations in the state, Louisville, Bowling Green and Murray and counties near not just one county each but they each each of those covers several counties. And then we have independence place based in Lexington, which also covers a number of counties in central Kentucky. And then Disability Resource Center and hazard which covers several counties in southeastern Kentucky. Kimberly Parsley 04:03 Okay, okay. And so it's federally mandated. So tell me about what that means and why that's important. 04:11 Esther Ratajeski It is set up in the Rehabilitation Act that every state will have an Independent Living Council. What this is for is so that people with disabilities have a say. And they're not just participating in programs run by other people who decide what's best for people with disabilities, but that people with disabilities themselves get to have a say in deciding what programs they need, what programs they want, how to live independently. And so the Independent Living councils are part of that, you know, more than half the people on the council are required to be people with disabilities so they can give people disabilities a voice at the state level. Kimberly Parsley 05:01 And that's, that's very important in the rallying cry in 1990. From when we were trying to get the ADA passed was nothing about us without us. Exactly. Very important. Well, thanks. Thanks, Esther. Thanks so much for being with us and talking to us today. I appreciate your help. Yeah, sure. And now we have with us to learn more about the silk. We have the current chairperson of the Kentucky Statewide Independent Living Council. Grace Jeter. Grace. Thanks for being with us. Grace Jetter 05:33 Thank you so much for inviting me, Kimberly, I'm happy to be here. Kimberly Parsley 05:37 Well, so tell us about yourself, Grace. Well, I Grace Jetter 05:40 have been involved with the disability community since the young age when my younger sister was born with Down syndrome. And since then, I have gotten involved with a variety of volunteer and professional experiences, that we're all somehow related to serving underserved population, mostly relating to disability. I and I currently work at an elder law firm, it's bluegrass elder law in Lexington, and the vision and mission of that often involves serving the disabled and aging communities. So it kind of walks hand in hand with the silk in that way. And last month in April 2023, I was elected Chair of the Kentucky State red Independent Living Council. Kimberly Parsley 06:23 Oh, great. Great. How long had you had you served on the council before? Is that when you began? Grace Jetter 06:29 I believe I was appointed in November of 2019. Kimberly Parsley 06:33 Okay, okay. Well, congratulations. Thank you. So tell me about the history of the silk as an organization here in Kentucky. Absolutely. Grace Jetter 06:43 So it's extra covered a little bit. It is a federally mandated nonprofit organization. And it was established under the authority of the Rehabilitation Act in 1973. And council members are appointed by the governor. And the silk is has the purpose to develop the state plan for Independent Living support, others Centers for Independent Living, monitor and evaluate the state plan and just provide support and direction to this build as Kimberly Parsley 07:14 needed. Okay, great. And tell me how members are chosen to be on the silk. 07:21 Grace Jetter Absolutely. So anyone interested in serving is supposed to reach out to the coordinator of the silk or the currently serving Chair of the nominating committee. And the nominating committee consists of a portion of the council usually about four members, because there are 16 members overall. And the committee collects application materials from anybody who's interested, and recommends, who to appoint to one of to the full council at one of the quarterly meeting. And then at that point, once the council votes on who they would like to appoint, we've done that recommendation to the Governor's Office of boards and commissions, and they make it official, of course, with the way state government works, that is a simplification of how it gets done. There are several layers, but that's the gist of it, Kimberly Parsley 08:07 or does it take a while once someone fills in their app fills out their application, Grace Jetter 08:12 it depends when they fill it out. Because typically, the nominating committee will meet a few weeks before the regularly scheduled quarterly meeting. And then the quarterly meeting will have to come and it will be voted on. And then once it submitted to the governor's office that can take a few more months. So it really depends where in the year they submit it. But also I want to know that people are able to serve on the subcommittee's without being officially appointed by the governor. So anybody who's interested, is welcome to serve on our different committees. We welcome anybody's expertise in interest Kimberly Parsley 08:48 in that. And what kind of committees are there? Well, currently, Grace Jetter 08:51 we have the nominating committee, as I just mentioned, we had the public awareness committee, and then a committee for the state plan on Independent Living. And so that was kind of self explanatory, but they, you know, create the state plan and discuss the changes and discuss what the goals should be for the independent living network in Kentucky. And then lastly, we have the Finance Committee as well. And so they kind of manage the budget and take a look at where the money is going and make recommendations in that area Kimberly Parsley 09:24 as well. And that would be money that comes from money that comes from Grace Jetter 09:29 federal grants and other grants come through as well, on a case by case basis. Kimberly Parsley 09:35 Is that money that comes in from the federal grant, is that one big, you know, pile that comes in or is it come from several different sections of the federal budget? Grace Jetter 09:44 I'm not sure from what section that the federal budget come. It does come in a few different designations and I think Esther would probably be best to clarify that but there are some in different sects, portions of the money is designated for different imperfect Kimberly Parsley 10:00 from the federal government. And why is such an organization important to the well being of Kentuckians with Grace Jetter 10:07 disabilities? Absolutely. So the purpose of the silk is to promote, basically a philosophy of independent living for Kentuckians and maximize the integration and inclusions of all individuals with all sorts of disabilities into the mainstream of society. And of course, as Esther talks about earlier, at least 51% of our members have a disability. So it's really important that we incorporate opinions of people with disabilities to make sure we're really doing what's best and independent living itself is really important to the well being of disabled Kentuckians because it basically is a movement of people with disabilities who work for self determination, equal opportunities and self respect. And it doesn't necessarily mean doing everything by yourself and not needing anybody to help. But just to maximize the integration into society and live a full life and reach their full potential. Kimberly Parsley 11:06 Thank you. That's so important. It really is. And what are the priorities that the silk is working toward right now? Grace Jetter 11:12 Currently, in February 2023, we actually got approved by the IRS as a nonprofit organization, or a 501 C three. So right now, we are just working on that transition to fully establish ourselves in that way, and just put new policies and procedures in place so we can increase our effectiveness and supporting the assaults across Kentucky. Kimberly Parsley 11:33 Okay, what issues do you look forward to taking on in the future. Grace Jetter 11:37 And I can kind of point to our current state plan for Independent Living themself as well as representatives from all of the Centers for Independent Living across Kentucky have agree on these goals. And the first one is to engage local and state policymakers with the needs of Kentuckians with disabilities, particularly regarding housing, transportation and disaster response. The second one is to basically spread the word and make the make sure people know who we are, and just what independent living services are available to them. For him to do this through presentations, attendance at community event, we plan to create and launch a website and also kind of increase our collaboration with other disability related organization. Our third goal, we want to create an emergency response plan, especially after COVID and some other weather emergencies that we've been experiencing. And we just want to grow in our ability to prepare Kentuckians with disabilities for these types of disasters. And mostly to have a coordinated response in place because we kind of we realized that we didn't have a adequate response when all of these things were happening one after another. And then we're also continuing to establish the nonprofit of the silk and increase our capacity to carry out our duties. And of course, that goal that's always been there is to continue to provide our five core services, our information and referral, independent living skills training, peer counseling, individual and systems advocacy and transition. Excellent. Lisa McKinley 13:16 I'm Lisa McKinley. Today I have the pleasure of speaking with Bobby Begley. Bobby is a longtime council member of the Kentucky Statewide Independent Living Council. Hello, Bobby, how are you? Bobby Begley 13:31 Good. How are you doing? Lisa McKinley 13:33 I'm doing very well. Why don't we start by you telling us a little bit about yourself? Bobby Begley 13:41 Well, I'm 72 years old. I'm a former underground coal miner for 15 years. And then I have a stone in doubter. And four grandchildren and my bed and I started losing it went to cow retina, pigmentosa RP for sure. And actually, in January, February of 85, I was diagnosed with that Laos. And I was told I would eventually go blind, but it wouldn't be at my age, it probably go slow and it was Tom would be so went to Hazard Community College, Nanny one and nanny three. Our continued non traditional student at my age and from nanny three to 2000. I won't move it they earned a bachelor's degree and K to 12 LBD or two is learning and behavior disordered with Mannering that was just released. And then there were applications out in summer of 98. And then in the fall 98, I went back and got my master's in secondary education, gardens and camp. Lisa McKinley 15:23 That is quite an accomplishment after receiving a diagnosis such as retinitis pigmentosa. Now you are a council member of the Kentucky Statewide Independent Living Council. Tell me a little more about that. Bobby Begley 15:41 Well, we are boarded under the da de la Department of Aging and independent living before that about four some years ago, we were under OVR wanted outfit for rehab a vocational rehab Department for the Blind at the start what we do we have three standards and Kentucky that we collaborate with wanted and I like dunk all the happy place here owners and local cow cow dinner for a stash co living and we have one and hazard disability ratio center and their main offices and not for Tennessee we come up with date Independent Living plan, ideal for Independent Living and getting information out for people who wish to get information from the centers or it's basically a referral place where people can call dad up upon my time meet with these centers go to get information about independently and Lisa McKinley 17:31 so you get people connected with resources across the state for Independent Living. Bobby Begley 17:40 Yeah, we getting information and we are reviewing 30 what other states are doing with thirstiness got we got to go by the state and federal regulation well we can do and can we get them the information for the people who want it but we don't. And money after we got a budget that we have to go back and did a plan we're switching over to 5013 C where we can start in October and daycare or we can set up fundraisers and things like that create another way of that we can people can add this to the you know the web that and so on. Of the problems that we were we tried to hide that information through them and if we made any made any individual depending on the location of where they live in a stadium in Turkey, give them their information. What dinner and other available resources are close to the area so they can get in contact with. Lisa McKinley 19:33 Now, Bobby, I know that lots of different things come to mind when people hear independent living for some that means to live completely on your own. For others that means you know less help from from outside sources. What does Independent Living mean to you Bobby Begley 19:57 have freedom to move around him? apply for one day. That is, I mean, there's limitation to what you can do for us, Dale. Lisa McKinley 20:14 Great advice. That was Bobby Begley with the Statewide Independent Living Council. Thank you, Bobby. And thank you listeners. Until next time, I'm Lisa McKinley. Kimberly Parsley 20:26 If you like the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts that helps more people to find us. If you really really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all every bit helps, it makes a huge difference for us. If you'd like a transcript, please send us an email to demand and [email protected] and put transcript in the subject line. Thanks to Steve Moore for helping us out with transcripts. thanks to Chris Duncan for our theme music demand and disrupt is a publication of the Advocaat opress 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.

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Roving reporter, Keith Hosey, interviews Beth Metzger with the Department for Protection and Advocacy.

Protection and Advocacy phone number is 1-800-372-2988.

http://www.kypa.net

To let your federal elected officials know that you oppose the continued existence of a subminimum wage, call the United States capital at

(202) 224-3121

They will ask you for your ZIP Code, then connect you with your US representative. Once that’s done, call back and ask to speak to your senator. Once you’ve done that, feel free to call back again and asked to speak to your other senator. The number above is the capital switchboard and will connect you to all of your US elected officials.

Kentucky senators are Senator Rand Paul and Senator Mitch McConnell

To find out information about your member of the Kentucky General assembly, visit: https://legislature.ky.gov/LRC/Pages/default.aspx

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:05 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 Advocado Press, based in Louisville, Ky.

Kimberly Parsley Welcome, everyone! We're here with Keith Hosey. Keith Hosey has been a guest on Demand and Disrupt before. He is on the board of directors for the Center for Accessible Living and he is now serving in his capacity as “roving reporter” for Demand and Disrupt. Hey, Keith! How are you?

Keith Hosey 00:40 Hey, Kimberly! Thanks for having me. I appreciate it and love the “roving reporter” title.

Kimberly Parsley 00:50 [chuckle] You went out and did some interviewing for us. So, tell me where you went.

Keith Hosey 00:57 I went to the Ky State ABSE Conference, which is the Association of People Supporting Employment First. It’s a membership association. They used to be the Association of Professionals in Supported Employment. So, this is a conference for individuals who are working in the field of helping people with disabilities find jobs.

Kimberly Parsley 01:28 I see. So, tell us really quick. What are we talking about when we say supported employment?

Keith Hosey 01:33 Supported employment is a type of employment support where an individual helps someone who has a disability gain and maintain a job. In my day job, I work in supported employment, actually, and I've done that for a long time. What we do is we meet with an individual, we get to know that person, we get to know their strengths, their abilities, what they like, what their goals are, what their aspirations are, and we work with them in tandem to help them gain a job. Then, we help them maintain that job for a period of time until they feel stable in that job.

Kimberly Parsley 02:21 Okay, so this conference is a lot of people in various aspects of doing that kind of work. Right?

Keith Hosey 02:27 It is. It's a good coming together and chance for collaboration between our state vocational rehabilitation staff, who are the individuals who are paying for some of these services, and our direct service providers, the individuals who are actually out there in the field day to day helping people find jobs and then supporting them in their workplace, as well as some of the other ancillary groups that work around that field. For example, our interview today that we're going to be showcasing is [someone] with Protection and Advocacy who is not involved specifically in supported employment, but has some roles around supported employment in the state of Ky.

Kimberly Parsley 03:21 So, who are we going to be talking to today?

Keith Hosey 03:24 We’re going to be talking with my friend, Beth Metzger, who is an employee of Ky Protection and Advocacy (PNA is what sometimes people refer to that agency as). It is a state agency. I've known Beth for years now. I believe we met – oh my goodness – we might even know each other for close to 20 years. She's been with Protection and Advocacy for a long time. She’s a very knowledgeable person. I enjoy her company, I always enjoy her intellect and she does a great job with everything she does there at Protection and Advocacy. It's really a great group over there, as well: I've had the pleasure of working with a number of people there at Protection and Advocacy.

Kimberly Parsley 04:13 Okay. Before we hear your interview with Beth, I think we wanted to clear up a few acronyms and things. Right?

Keith Hosey Absolutely.

Kimberly Parsley So, tell me. What do we got first?

Keith Hosey 04:25 Let’s actually start with the Michelle P waiver. It was mentioned in the interview. Our listeners may not know what the Michelle P waiver is. Here in Ky like many other states, we have what are called Medicaid waivers, 1915C Medicaid waivers, here in Ky. What those things do is someone who’s on Medicaid, they can utilize these waivers to get additional services to support them in the community. Michelle P waiver provides assistance to individuals with intellectual or developmental disabilities to help them live in the community as independently as possible. There’s a menu of services under each of those Medicaid waivers. Other Medicaid waivers in the state of Ky: there's an Acquired Brain Injury waiver, there's a Home and Community-Based waiver and then there's a Supports for Community Living waiver, as well as another waiver that is called the Model II waiver.

Kimberly Parsley 05:28 So, these are all ways for people who are on Medicaid to get extra supports. Correct?

Keith Hosey 05:35 Absolutely! And the point of all of them is, other than the Model II waiver – I’m not as familiar with that; I believe that's more medically based as far as medical services – but all these other ones, I can speak to them. All of them, their purpose is to help individuals with disabilities get out into the community and become part of the community, with services such as personal care if they need it or behavioral supports if they need it, respite for caregivers or community living supports where you can [for instance] have someone take you out and, if you want to start a hobby or you want to go to a social setting and meet people, they can be your paid wing man.

Kimberly Parsley 06:28 Okay, excellent! If any of our listeners feel like you might be those supports might be something that would help you, you can reach out to your nearest center for independent living. In Ky, reach out to The Center for Accessible Living and, if you're anywhere else, maybe reach out to a department for community-based services or equivalent?

Keith Hosey 06:50 It is. It's the Cabinet for Health and Family Services.

Kimberly Parsley 06:53 Okay. All right then. Now let’s listen to Keith's interview.

Keith Hosey 07:00 I'm sitting here with Beth Metzger with the Ky State Protection and Advocacy program and she's going to tell us a little bit about what PNA does and how they're involved in the employment programs in Ky. Beth, welcome!

Beth Metzger 07:18 Thank you, Keith. Ky Protection and Advocacy was created as the state's federally mandated system to protect and promote the disability rights of folks in Ky. It came out of a revision to the Developmental Disabilities Act and our office was created in 1975. We are physically located within the public defender's office, which is kind of unusual because they don't handle civil cases and we don't handle criminal cases but it actually works, because we provide them with a lot of technical assistance, because quite a few of the individuals who are represented by public defenders are folks with disabilities.

Our office is located in Frankfort, but we cover all 120 counties of the Commonwealth. All of our services are free regardless of income and regardless of citizenship status. We provide information and referral services, technical assistance, do educational trainings and we are able to do some limited legal representation. I keep using the word “legal” because our office is considered as a law practice, but we're a bit unusual because we have both attorneys and non-attorneys like myself on staff. Amazingly enough, we do (the attorneys and non-attorneys) work very well together, so everything that we do is considered to be legally based. Everything that I handle is reviewed by at least one attorney to make sure that there is legal accuracy and, also, if there are any questions about whether or not something is covered by law and, specifically, how, I can consult with the attorneys on staff. For those of you all who have ever heard of the Michelle P waiver, that actually came about because of a settlement agreement between PNA and the Cabinet for now the Health and Family Services (it was something else back when it was first filed). The settlement came out of us filing a law suit against the cabinet over the Supports for Community Living waiver waiting list being incredibly, incredibly long and people were frankly dying before they got services. We never dreamed that Michelle P would actually have a waiting list, but hindsight is 2020 when it comes to that.

Even though our office was created out of the Developmental Disabilities Act, we can provide our services to all people with every type of disability. It’s basically cradle-to-grave and folks with disabilities contact us, their family members, professionals; we have providers, we have attorneys, law enforcement – you name it. People will contact us and everyone who contacts us, they will not get sent directly over to an attorney or an advocate; we do have a process because we average over 200 calls a month – new calls – which is huge for a staff of 21 (and that includes our support staff). We do contact people within three business days. If a situation is not considered as, whatever is going on with the individual, is not considered as being directly related to the person's disability, like someone with a disability who's going through a divorce. A divorce can happen to anybody, so our office is not able to provide representation on that. Unfortunately, there are other agencies that, if folks contact them about that same issue, they'll say, ‘Oh, sorry. We don't do that,’ and that's it. We at least try to steer people in the right direction and in also understanding that, as much as we would love to represent every individual, it just is not humanly possible with our resources.

When it comes to employment for folks with disabilities within the Commonwealth, we have our hands in a lot of things. We have a grant, which is [called] Protection and Advocacy for Beneficiaries of Social Security. All that mouthful basically means that if someone receives SSI or SSDI and they want to go back to work, but are experiencing issues with getting on the job accommodations and so forth, they can contact us and we can see about possibly opening a case and representing them with the employer to try to get reasonable accommodations. I spend an awful lot of my time talking to people about what reasonable accommodations are and the fact that getting accommodations is a negotiation process. Just because a doctor writes a prescription for something does not mean that the employer has to do it. It’s just like if a doctor did the same thing for a child in special education. Neither the employer nor the schools are required to fill prescriptions like a pharmacy would. So, I talk an awful lot with folks about that I have cases right now where I am representing folks with their employers to get those reasonable accommodations. Sometimes it’s a quick fix, other times it’s not. As long as the folks want us to be involved and what they're asking for is reasonable, I'll stick with them.

Another way that we are involved with [and] about employment, too, is the Client Assistance Program, which gets involved if there are any types of issues a person may have either with services through Vocational Rehabilitation or the Centers for Independent Living. That program used to be housed within Voc Rehab (which is problematic in itself). The program was officially re-designated by Governor Beshear over to PNA and that re-designation became final in September of 2021 (actually September 11 th of 2021) and I became the state's Client Assistance Program Coordinator on March 1 st of 2022. I've worked for PNA for over 20 years, working with folks with disabilities to get make sure that their rights are upheld is a long-time dream and goal and I, frankly, don't see myself being anywhere else. As for the Client Assistance Program, since I am in charge of the Beneficiaries of Social Security Grant and the Client Assistance Program, I'm able to do an awful lot in supporting folks with disabilities when it comes to employment. With the Client Assistance Program, I am able to provide representation to them with Voc Rehab, which means that it's not like we go in and say, ‘We're going to sue you,’ or anything like that. It starts with communication. In fact, I am federally mandated to try to resolve issues with Voc Rehab and the CILs at the lowest administrative level possible and the number one thing that I have found in the little over a year that I've been doing this is that [often] there's a breakdown in communication. So, for the most part, with the exception of a couple of cases, a couple of incidents, issues have been successfully resolved within a few months and some of them are just simply [a matter of] talking to the person's counselor. Other times, it is actually representing people with an appeal to a denial. That’s how that works.

I've also created an employment rights training, an interactive training, that I have taken on the road. I have primarily focused on the sheltered workshops, because we have 25 certificate holders (last time I checked) through the Department of Labor that allows these programs to pay sub minimum wage to individuals with disabilities. It’s really interesting that the law that created that was from 1938. That law, it was created out of good intentions, because there were all of these disabled war veterans who wanted to work, but nobody would hire them. So, the Feds decided to create this law. It's the Fair Wages and Standards Act, I do believe.

Keith Hosey The Fair Labor Standards Act, right? Fair Labor…

Beth Metzger Yes. Yes. Fair Labor Standards Act. Sorry about that. I have lots of names of laws running around in my head and our lawmakers very rarely will pick short names for laws. [chuckle]

Keith Hosey 18:57 I want to talk about this, because not everyone knows [about] 14C certificates. There are 2,425-ish agencies in the state of Ky and there are a lot more across the US who are legally allowed to pay people with disabilities under minimum wage, because it's a very old law. As you said, it had good intentions. I want to ask you your perspective, both personally and Protection and Advocacy. What do you think it will take for Ky to end sub minimum wage?

Beth Metzger 19:44 That’s a really, really great question, Keith. Ky PNA’s stance and my stance are one in the same and that is sub minimum wage should not exist because everybody – EVERYBODY – regardless of disability status, guardianship status – WHATEVER – has the right, and if they want to work, they have the right to try. My office has the stance, too, and also the National Disability Rights Network that our agency is part of, that everyone, regardless of disability, has the right to earn at least minimum wage. Employers being able to provide that or to pay less than minimum wage? Well, first of all, it sends a terrible, terrible message to the individuals that they are less than. Also, while the folks are doing work for sheltered workshops for sub minimum wage, we have to think about the other side of that with the contracts. Who and what businesses are contracting for this and are they truly unable to pay people a living wage? Because what sub minimum wage does is keeps people with disabilities in [poverty] and it's like, ‘Okay, not only are you going to have to fight for services, fight for accommodations and fight for an accessible place to live, we aren't going to let you get out of poverty,’ which is horrible. Absolutely horrible!

Other states have completely abolished 14Cs and from what we have seen it's like a two-pronged approach and, of course, this would have to go through legislation. The first prong is to require everyone to be paid at least minimum wage. There are some certificate holders who do not pay sub minimum wage; they pay minimum wage. Unfortunately, on the flip side of that, what's gone on with that is they have seen a decrease in their contracts. So, higher wages but less time worked, so that doesn't really help. But, with anything legislative, it has to be taken in baby steps. First, would be, ‘Everybody is to be paid minimum wage.’ Second, then and only then could it go forward with, ‘If you are unwilling to pay minimum wage, you won't exist as an employer.’ That's the way it has been successfully done in other states. There are 57 (56 or 57) Protection and Advocacy offices throughout the US and states and territories and all of us are in this fight. Through our national network, we are able to share legal information about what has worked and what hasn't worked. Now, call to action here, though: my agency is not allowed to lobby but you are.

Keith Hosey 23:48 As an individual citizen, all of us can call our elected officials.

Beth Metzger 23:55 Correct. Correct. Absolutely! And honestly, sometimes what it takes is the volume. So, if you have a group of friends – you might be organized through a Center for Independent Living (or what have you) or if you just have a group of friends [you can utilize them] (the people who call legislators, they don't have to have disabilities). Oh! One thing, too, about the 14Cs is that they are basically targeted for people with intellectual disabilities. interestingly enough, I don't know if you know this or not, Keith, but the WIOA, the Work Incentives and Opportunities Act, does not allow a sheltered workshop to pay sub minimum wage to a person who is under the age of 24.

Keith Hosey I did not know that.

Beth Metzger So, if your listeners, if anybody out there is below the age of 24 and they are getting sub minimum wage, please call PNA and we can see what we can do about rectifying that. It may be that we would need to bring in the Ky Department of Labor's Wage and Hour Division, since they are the ones who handle that, but that would be a violation of WIOA. That knowledge that I'm passing along to you about the age, that is something that has been in the law, but there has been a recent clarification of that, an explanation of that. But getting back about contacting your legislators (we’re not just talking about your local legislators, we're talking both state and federal), have everybody that you know contact them and say, “Look, this isn't right, because people with disabilities have the right to earn just like everybody else, because we are WORTH something just like everybody else.”

Kimberly Parsley 26:37 Wow! Thanks, Keith, for doing that interview for us. There was a lot of good information there.

Keith Hosey 26:41 Yeah, I really appreciated Beth's explanation of everything. I really couldn't have asked for a better explanation.

Kimberly Parsley 26:51 I wanted to dig in a little bit. She talked about the sub minimum wage issue and I know that's an issue that is very important to you, also. So, can you tell me a little about that? What do I need to know?

Keith Hosey 27:07 Absolutely. Sub minimum wage is something that has been around for a little while. Just a really quick history lesson here… The Fair Labor Standards Act, which was passed in, I think 1934 (somewhere around that time), had a clause in it. 14C was the clause and it allowed for sub minimum wage to be paid to individuals with disabilities. The idea behind it and the intention at the time were good. The idea was people with disabilities just couldn't work as well as non-disabled [people], but we'd love for them to be able to be some type of productive member of the society. So, we’ll allow for these certificates to go out where a company could hire people with disabilities (who had essentially a 100% unemployment rate) and give them a job and pay them a wage that, as they said then, was comparable to the production output value.

At the time, it was probably innovative. It is 2023 right now and it just doesn't jive anymore. The entire premise behind it is that people with disabilities can't contribute in a meaningful way to society in employment and that's just not true and we know it’s not true. I'm a person with a disability and I’m contributing into our workforce and my job is to help people with disabilities do that as well. And I can tell you, there's a whole lot of us out there pulling our weight and the fact that this relic of legislation is still around (it's kind of [like] you buy those funny books in an airport of outdated laws and in Massachusetts and any hotel still has to stable a horse of a traveler), it just doesn't make any sense in current day, but it's still on the books. So [14C], that's something nationally that's still on the books.

Kimberly Parsley 29:32 And I can absolutely see why some employers would want to keep that on the books. Right?

Keith Hosey 29:37 Yeah. When your people who [are] producing are pennies on the dollar per hour and your product is selling for whatever the going rate [is] right now in our economy, you're gonna make some good money, probably. Unfortunately, it is on the backs of people with disabilities. And here's the other thing that often gets lost in the conversation: the whole point of this 14C (the laws have changed [now]): formerly, Medicaid and other entities were not aimed at competitive employment. The idea was that someone can build skills and then move in to competitive employment. The idea was never that someone would go into a sub minimum wage job and stay there. The intent was they would get skills they need and they would go into a competitive job. That's not what we see on the whole scale of places that that utilize 14C.

Kimberly Parsley 30:59 Really? Is that right?

Keith Hosey Yeah.

Kimberly Parsley I think one of the things that I personally find offensive about these sorts of laws is that… Again, there's the history aspect and that's all well and good, fine. But, like you said, this is 2023. I personally find these laws offensive, because what this law says is that a disabled person is, just by being disabled, producing less. That means that we are working more slowly, that we are doing less than any person who is non-disabled and that just sucks because this law doesn't compare any other kind of people! It doesn't compare people by race, or gender, or religion, nor should it – I do not say it should in any way. But, it's equivalent to saying, ‘People with blond hair? They work less…’ or any other thing! By that standard, that is discrimination; federally, by the federal standard, that is discrimination and I simply do not understand why these laws are still allowed to be in operation! I mean, do you know why? A good lobby, maybe? What are we talking?

Keith Hosey 32:24 Well, right now it truly is state by state. I think the Fair Labor Standards Act (FLSA) is a national law, but the way it is translated down is really state by state. There are states that have decided that they are going to phase out sub minimum wage; there are states that have said “no.” And to your point, yes! What this says is that people with disabilities, we are not whole. Right? Kimberly Parsley 33:05 Right.

Keith Hosey 33:08 There is no way that we can be as whole as a non-disabled person and that's just not true. So, there are states that have said, ‘No, this is wrong.’ The litmus test is you put in a different marginalized group and if you think it's probably racism or sexism or anything like that, then it probably is for whatever, whoever, whichever group they're doing that to. Right?

Kimberly Parsley 33:41 Right! Yeah.

Keith Hosey and 33:42 For sure, but it's state by state right now and Beth kind of had a call to action at the end there that it really is up to us to contact our legislators. [And] not just our state legislators; our federal legislators, because it is a federal law and we can get it changed on the federal level with enough support and that would then make sure that all the states do it, too. But on the state level, we can also advocate for state laws. There are states that have phased this out: Virginia, Connecticut, Minnesota, New Hampshire, New York and there’s a few others that are in the process of phasing it out, including, I think Tennessee (which is our neighbor, obviously). Ky, interestingly enough, I looked this up, Ky had a failed bill last year. It was House Bill 471. It died in committee, which means that that's where it starts. Right? They wanted to change it to increase the minimum wage. It was tied to increasing the minimum wage to $15 an hour. So, it's hard to tell if it died, it probably died because of that in the legislature, but it did include getting rid of sub minimum wage.

Kimberly Parsley 35:16 So, Beth's call to action: there's a groundswell of support, we just have to keep at it and the way to keep at it is to keep calling or writing, emailing – WHATEVER. Sending social media, whatever is your preferred way to reach out to your elected officials, keep doing that, because they are accountable. They are accountable to us, because we put them there and we put them in those jobs. They have to be accountable and they are accountable to you and they need to tell you why. So, write them. Tell them what you want and then ask them why they haven't done that. Why haven't they done? Why haven't they faced this out? That was a really great interview with Beth… What was her last name? Say again?

Keith Hosey 36:08 Beth Metzger.

Kimberly Parsley 36:11 And if someone wants to get in touch with Protection and Advocacy, how might they do that?

Keith Hosey 36:16 Their main office is in Frankfort. They have a phone number. Their toll-free number is 1-800-372-2988. They also have an email address, [email protected]. You can also look them up on their website. It is kypa.net and you can contact them through there.

Kimberly Parsley 37:00 Okay. I will put all of those things in the show notes and I will add links to where people in Ky can find lists of their elected officials. Thanks so much, Keith! Thank you for being our roving reporter and everyone else, stay tuned for part II next time when Keith talks to more people at the conference. So, thanks, Keith.

Keith Hosey Thanks, Kimberly.

Kimberly Parsley 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 [email protected] and put “transcript” in the subject line.

Thanks to Steve Moore for helping us out with transcripts. Thanks to Chris Onkin for our theme music. Demand and Disrupt is a publication of the Advocado Press with generous support from the Center for Accessible Living located in Louisville, Ky. You can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities,” in our show notes. Thanks, everyone!

Find out more at https://demand-and-disrupt.pinecast.co

Decades ago, Kentucky was the epicenter of the movement to make public transportation accessible to people with disabilities. In this episode, Maria Kemplin joins Kimberly to talk about how far we’ve come, where we are now, and the hope for making transportation accessible to everyone in the future.

To find out more about accessible transportation in Kentucky, visit Transportation.hdiuky.org

To find out more about legendary Kentucky activist Arthur Campbell, visit https://ket.org/program/if-i-cant-do-it-it-aint-worth-doing/

Visit the Commonwealth Council on Developmental Disabilities at ‎ccdd.ky.gov

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:02 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 Advocado Press, based in Louisville, Ky. Today's guest is Maria Kemplin. Maria is a person with a disability, an advocate and the very proud parent of a son who is a strong advocate himself. Maria works at the University of Ky's Human Development Institute on the Transportation Initiative, a project made possible by a grant from the Commonwealth Council on Developmental Disabilities. The Transportation Initiative provides resources and education on accessible transportation options for Kentuckians with disabilities. Maria also serves on Ky's Special Education Advisory Panel and participates in several state organizations. She says that Demand and Disrupt is one of her favorite podcasts. Ooh! Thanks, Maria! She says that long, fired up conversations with her son and fellow advocates sustains her drive to make the world include us all. So, we are happy to have Maria Kemplin joining us today. Hello, Maria! How are you?

Maria Kemplin 01:17 Hi, I'm great. How are you, Kimberly?

Kimberly Parsley 01:20 I'm doing well. How are things up there in Lexington?

Maria Kemplin 01:23 They're nice. We're just starting to have the first of spring. So that's very welcome.

Kimberly Parsley 01:30 Tell me about your job, what you're doing up there in Lexington.

Maria Kemplin 01:34 I'm working on a project at UK's Human Development Institute and it's called the Transportation Initiative. The Transportation Initiative is a project supported by the Commonwealth Council on Developmental Disabilities and the purpose of the project is to promote transportation solutions for people with disabilities across Ky. So, we provide educational information, we help with technical assistance and we also help people advocate for accessible transportation, because that's such an important thing for Kentuckians that have a disability.

Kimberly Parsley 02:18 Yeah, it is. So, tell me a little about that. For me, obviously, I'm blind, I don't drive, I never have driven. I know how transportation barriers impact me. So, tell me about the impact on people with other disabilities.

Maria Kemplin 02:33 So, transportation is something that we all rely on across all ages and stages of life, from the time we are a baby until even when we're elderly. Transportation is essential. It gets us to work, it gets us to school, it's how we get our groceries, our prescriptions. It's how we see family members or go to church. You won't find anybody that doesn't have a transportation need and we all have our transportation needs met in different ways. Some people drive. Some people have a family member that drives that they ride with and some people use public transportation. But you'll find that transportation really varies depending on where you live, what your circumstances are. Some people have access to great transportation options and then other people in rural areas may lack transportation options and they may really struggle to even get to a doctor's appointment or to have a job, because they don't have transportation to get to their job. And, so the Transportation Initiative tries to look at those issues and find what solutions are currently available and also help people articulate that need for when there is not a transportation solution available and how we can try to change that.

Kimberly Parsley 04:11 You said part of the funding comes from the from the?

Maria Kemplin 04:15 The Commonwealth Council on Developmental Disabilities. They've been a great supporter of this project. And, of course, they support a lot of great projects related to developmental disabilities. But transportation is one that comes up so frequently in needs assessments and in community conversations, where people are talking about the barriers that they have to employment or to continuing your education or to volunteering in your community or attending community meetings or voting. We know transportation is an issue that cuts across all of those areas. So, the support of the Council has really been phenomenal!

Kimberly Parsley 05:04 How is someone with developmental disabilities, how are they impacted by barriers to transportation?

Maria Kemplin 05:12 So, what you'll find is some folks, because of their disability… For example, we can talk about my son who’s 18. He has an epilepsy diagnosis. So, because of that, he won't be getting a driver's license because of having epilepsy. So, for him, he grew up knowing that he would have to have a transportation solution. And what's that going to look like? How am I going to prepare for that? Other people may have a disabling accident or they may just simply get older and are no longer driving like they used to, so their transportation need changes and you find yourself trying to figure out, ‘How do I get to work now? How do I go get my groceries now?’ So, those are problems that a lot of Kentuckians face and it can be really a tremendous challenge if you're trying to figure out how to pick up your prescriptions or how to get to your medical appointments and you don't have that ability to drive any longer. There's a lot of different reasons why someone may not have transportation. It could be a developmental disability, it could be… Some people don't have access to a vehicle that's accessible, because of the cost, because of the modifications needed.

Kimberly Parsley 06:43 Yes, those are incredibly expensive. Incredibly expensive.

Maria Kemplin 06:48 Sometimes folks have an accessible vehicle and then, like all of us, they have car trouble. Car trouble is something that touches most households at some point, but your neighbor can't give you a ride if you use a wheelchair, because you may not be able to just get a ride with someone easily. So, there’s a lot of barriers when you require an accessible vehicle.

Kimberly Parsley 07:17 And there's a history of activism, isn't there, in Ky? Maybe everywhere, but in particular, in Ky there's a history of activism in this area.

Maria Kemplin 07:28 Ky has a tremendous history with disability advocacy and transportation, especially around the Louisville area. And that's one thing that I loved about the Advocado Press and that history of bringing attention to that movement. A group of advocates in Louisville grew from a small grassroots effort to a large group to advocate for accessible public transit and they made a difference that spread across the nation. Louisville became one of the first cities to have accessible buses and it was because of the efforts of advocates, people that were in ADAPT (Americans Disabled for Accessible Public Transit). Folks like Arthur Campbell, who's one of my absolute heroes.

Kimberly Parsley Mine, too.

Maria Kemplin It was their advocacy efforts that made a significant change. And now we have buses that are accessible, but the issue is do you live on a bus route? Do you live in a community that has bus routes that go where you need to go? Or do you live out in a rural area where there may not be a bus service at all? So, we’ve made progress, but there's still a lot of progress left to go.

Kimberly Parsley 08:52 Yeah, there is. I live in Bowling green and, well, it's even better in Bowling Green than out in the rural areas, around. So, yeah, Ky's got a great history. We need to keep that up, though. So, tell me what can people do to improve transportation options both for themselves, but also for the community as a whole?

Maria Kemplin 09:14 Advocacy is something that is very important and we all have a role in that, whether we are a person with a disability, whether we work in education or with a community agency. I was just seeing the Surgeon General's report the other day about loneliness and I don't know if you had a chance to see that.

Kimberly Parsley 09:37 I did. It was fascinating! It really was.

Maria Kemplin 09:40 One of the things that the US Surgeon General specifically calls out is infrastructure and the impact of infrastructure on loneliness and how, if folks don't have the ability to connect and get out into community and participate and belong, and that the impact of that loneliness on your health and on your mental health. We see that with elderly populations when they're not able to get out and participate and how that influences their health. So, advocacy is very important. Education is so important: sharing information so that people can see the results. The impact on employment: if a large segment of our population can't access employment, because of a lack of transportation. Well, we're in an employment shortage right now, so one solution to the employment crisis and the lack of talent that people are finding is how can we get people to job sites? And of course, transportation is part of that. If you have an infrastructure to get people to work, then it certainly opens up more possibilities.

Kimberly Parsley 11:02 Right. So, advocacy, tell me, what are the nuts and bolts? What can someone who hears this interview and they're like, ‘Okay, yes, this is an issue that affects me and I want to take action.’ So, tell me, what can they do?

Maria Kemplin 11:18 So, one thing that I found is people with disabilities are the true experts when it comes to transportation issues. And I think one of the most powerful things you can do is get people with disabilities that are impacted by transportation issues together, whether that's virtually online on Zoom, in a meeting room at the public library, however you do that. But I think you'll find that there becomes strength and solidarity among those voices. And people can talk about the challenges they experience and also what they see as the solutions. People with disabilities have figured out a lot of the flaws in the system and can point us to how things can be improved. I saw that in the 80s and 90s in Louisville with people with disabilities showing us that buses were not accessible and how we could improve upon that and how that led to the ADA.

So, I think getting people together, community members being willing to listen and support folks, but I think that's a first step. And I think that that happens best in communities, community level, because what you experience in Bowling Green, Kim, might be different than somebody in Somerset experiences. Someone in Lexington that lives on a bus route may have totally different needs or issues. So, I think one effective way is to focus on your community. We saw that in Montgomery County where people worked together to bring an awareness about transportation issues to their community. And the community action agency in Montgomery County (that's Gateway Community Action Agency) created a Montgomery County Transit System. And for $1 per ride, they give people countywide transportation door to door and vehicles are accessible.

Kimberly Parsley Wow!

Maria Kemplin So, it’s phenomenal what Gateway Community Action Agency has accomplished! And you know, folks bring that to the community's attention. So that might be something if a city in western Ky doesn't have any system, people may get together and bring it to their community action agency or talk to their local government and talk about. There are some matching grants available state and federal to start transit systems and how you could take advantage of those.

Kimberly Parsley 14:11 Well, that is definitely encouraging. Thank you for sharing that. Tell me what does the future look like? We talked about the history. What's the future look like for transportation in Ky?

Maria Kemplin 14:21 One thing that I hear from millennials who are taking surveys is millennials really believe in public transit and public transit infrastructure, which is really interesting, because we had this… Not everybody used to own a car, not even every household used to own a car. In fact, in the 70s most people carpooled to work, because it wasn't one car per one house per person. And, so, over the 80s and 90s, you saw this movement to where people were each independently owning their own car, but the costs of automobile ownership are really high. In fact, out of every dollar that a household spends, 16 cents of that budget is on a vehicle.

Kimberly Parsley Wow!

Maria Kemplin So, it's a significant portion of people's household budget. It can cost between $12- and $16,000 a year just to maintain and operate a vehicle, each vehicle, that a household has. So, Millennials see that automobile expense and they're looking at their budget and they're looking at student loans and the rising cost of housing and all of the pressures on our income and they're thinking about public transit as an option to relieve their budget. And a household that uses public transit can save nearly $10,000 a year by using options. So, I think that's something that we'll see more of a return toward and less of the one person, one car kind of system.

Kimberly Parsley 16:08 That would be great both for households and for the environment as a whole, wouldn’t it.

Maria Kemplin 16:14 it would! Of course, there'd be great impacts on the environment, on emissions, on our use of fuel sources, on budgets. And public transit systems also are a source of employment. There is, I forget the number, but there is a pretty significant number of jobs that are created by transportation systems. Whether that's subway systems, train systems, freight train systems, buses, they're large employers and that's an important thing to think about, too. When you're investing in public transit in your community, your creating jobs in the community.

Kimberly Parsley 16:56 So, tell me if someone wants to learn more, is there a website that they can go to?

Maria Kemplin 17:02 Well, we do have a website that shows some of Ky's public transit options and other transportation resources. That web address is transportation.HDIUky.org.

Kimberly Parsley 17:20 Okay, and I'll put that in our show notes for everyone.

Maria Kemplin 17:23 That's an accessible website. So up on the right-hand toolbar, you'll see a little person icon. If you click on that, there are magnifiers and there's different screen tools that folks can use for accessibility. And there's some videos, audio files and there are also some handouts people can print about different transportation resources.

Kimberly Parsley 17:48 I have been on there. It is a very, very helpful website! So, thank you, if you were part of getting that up and running. Thank you very much, Maria. So, anything else people need to know about transportation and how we can improve it here in Ky?

Maria Kemplin 18:05 Well, one thing I want to touch on is the intersectionality of public transportation, in that the people that are most disproportionately affected by transportation issues are young adults, aged 25 to 29, particularly single parents of small children, low income households, the elderly, black employees, and individuals with disabilities. So those are the population segments that are most impacted by transportation issues. And, so, you'll see each of those groups has an effect when it comes to employment, they have enough negative effect when it comes to health care. People have difficulty getting to their health care appointments. In fact, 54% of people have such a significant issue with transportation that they report they have a barrier to their health care. Yeah, it's pretty significant. So, when you look at transportation issues, we have to think about how transportation systems are a part of that equation. Where different populations have a barrier, they have something that's holding back their ability to live their best life and participate and one of the variables in that equation is transportation. It’s going to affect your ability to access a lot of important things in life.

Kimberly Parsley 19:42 It absolutely is. I can 100% attest to that! So, Maria Kemplin, thank you very much for joining us! I appreciate it. And again, I will put the link to that website in the show notes. And I do encourage everyone to try to get together and organize and see what we can do to improve what is a very important situation. Thank you so much, Maria.

Maria Kemplin 20:06 Thanks for inviting me, Kim.

Kimberly Parsley 20:10 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 liked the podcast, then please tell someone about it, either in person or send them an email or just share the link on social media. Thank you all! Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put transcript in the subject line.

Thanks to Steve Moore for helping us out with transcripts. Thanks to Chris AnkIn for our theme music. Demand and Disrupt is a publication of the Advocado Press with generous support from the Center for Accessible Living, located in Louisville, Ky. And you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities,” in our show notes. Thanks everyone!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Matt Davis, Assistant Director of the Student Accessibility Resource Center at Western Kentucky University, talks to Lisa about self advocacy.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:05 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 Advocado Press based in Louisville, Kentucky.

Lisa McKinley 00:19 Good Morning! Welcome to the Demand and Disrupt podcast. I'm your host, Lisa McKinley. Today we are with Matt Davis. Matt Davis is the Assistant Director of the Student Accessibility Resource Center on the campus of Western Kentucky University. Good morning, Matt. How are you today?

Matt Davis 00:40 I'm doing well, Lisa. How are you doing this morning?

Lisa McKinley 00:43 I am great. We are so excited to have you on! I've known Matt for a long time now. Probably 20 something years.

Matt Davis 00:53 20 something years?

Lisa McKinley 00:54 Yes! 20 something years. I think I actually met you before I became a student at Western. You were doing road races and I was at a road race with my sister and you were there. And that's how I met you. And I'm like, “This dude's cool!”

Matt Davis 01:13 And I started racing in 97, so that's ever been had to have been sometime around when I first started, started.

Lisa McKinley 01:19 Tell us about yourself, a little more about yourself and about your position at Western.

Matt Davis 01:25 Okay. I am from Bowling Green, Kentucky. I grew up here. We moved here when I was a little kid. When my father got a position at WKU, we moved from Lexington to Bowling Green. So, I pretty much grew up here in the Bowling Green area. I am an adult with spina bifida, I was born with Spina Bifida. So, I also have a disability as well. I have my bachelor's and master's in social work from WKU. I also do, as you well know and had mentioned before, I also have been passionate about adaptive sports for over 20 years now. My main sport is wheelchair racing, but I've played wheelchair basketball and tennis And, tennis students and softball and sled hockey And, so, hockey and so many other things. And, so, I always make the joke that I'm only doing this WKU gig so I can feed my sports habit. So, that’s a little bit about my background.

What I do at WKU is, as you mentioned, I'm the Assistant Director for the Student Accessibility Resource Center. And what I do is make sure that students who have a documented disability, that they disclose their disability to the university, make sure that they have all the resources that they need to take advantage of, or of or they can take advantage of, to make sure that they have the equal opportunity success during their college career. And that can vary from, you know, classroom accommodations, to housing, to finding tutor, tutoring assistance to oftentimes just being, you know, a listener. So, people ask me what a normal day is and there really isn't such a thing. It seems to be something different every day, which I like. It’s hard to believe that I've been here this long, this will be my 22nd year here at WKU as an employee.

Lisa McKinley 03:15 I would like to spend some time talking about the importance of self-advocacy, because we can have people advocate for us all day long, [but] I think the ability to advocate for one's self is so important. Can you talk a little about advocating for oneself as a college student and really how important that is?

Matt Davis 03:37 Sure. In, a lot of times when I speak to con, at conferences, or even if I'm speaking to a classroom of students here on campus, oftentimes, without mention, is one of the most important things I do in my role. You know, a lot of things can be, you can learn on a job, you can learn how to do different, you know, the process for providing accommodations, but I think helping students become their own advocates, once they get to college, I think is one of the more important roles that I have. Because a lot of times, students in general, oftentimes have had a lot of things in their life done for them up until they get to the college level, but it seems to be more prevalent in the disability community as far as even not just, you know, as far as schoolwork and those types of challenges, but also just daily living skills. And, so, I think that, because I think that's part of my role here is to help students make that transition into college and, you know. They are adults (tell people I'm using my quote fingers) “adults,” but they still have those responsibilities that they haven't had before oftentimes in their life. Not just getting to class but how to navigate to get groceries, how to navigate to get, you know, their medicines that they need or their supplies that they need or making doctor's appointments. So, oftentimes I'll get those requests, you know.

Students at the university, when they request accommodations, we don't, they do that through a process through our office and we provide them with what we call a Faculty Notification Letter to their email and they provide those to their professors to request the accommodations. So, that’s part of that process, is to let the student be in control of when or if they want to request accommodations for their classes. And, so, they have that letter and they can, they need to provide that to professors; we don't do that. And, so, we tell students, ‘College is all about choices and once you get to college, it's your choices whether choice as whether or not to use the accommodations.’ [I] always recommend that students provide their Letter of Accommodation or their Faculty Notification Letter at the beginning of the semester and then everything's in place. And if you want to just try the class without accommodations, then you know, that's also their choice, and so… And, also students will oftentimes request did I contact their professors or if they will contact this department on campus and I tell them a couple of things. What I'll do is, I said, “Well reach out to your professor, this department, and you can copy me,” and I'll even sometimes help a student formulate an email to them. And then that way, that helps them to kind of take over that role of asking for help around campus and getting into that routine of asking for those, that extra help that they need. And, so, those are some of the things that I see myself… And one of the things that helped me, I think, when I was younger. My first attempt at college at an early age and didn't do so well and had to drop out and I went back later. And, so, those students that I see that are struggling or, lack of a better term may term, may be goofing off or not taking college as serious, I can't really be really judgmental, because I see myself in them. And, so, I try to start where they are. And, so, that's part of that as well, because some students even hesitate who have accommodations – especially those students who have what we call a hidden disability – oftentimes, they're even hesitant to even reach out to our office. And, so, I think just encouraging them that they made that first step to at least go through the process to get help from us as part of that, that advocacy process.

Lisa McKinley 07:32 Encouragement is a huge thing; just to have somebody there beside you, you know, letting you know you can do this and this is how you might want to go about it. That, that is huge! So, if you can what, tell us maybe something a student might run into with a class. How are some ways in the classroom they might have to advocate for themselves?

Matt Davis 07:59 That's a good question. Oftentimes students who, I'll give you an example that some students who have accommodations may have to, accommodations for testing. And, so, what we require them to do (and what I mean testing, they, maybe they need extended testing time or a separate place to take exams or sometimes even, even a reader)… And, so, what we have that student do is when they need our offices, where students can come and take their exams, and, so, we require them to fill out a testing form. And, so, some of the, some of the issues they might face in the classroom is, maybe (and a lot of students, not just students with disabilities) but the time management factor. Being able to because, you know, a lot of times students transitioning to college, they've been used to their parents saying, “Have you done your homework? You need to get up and go to school. You need to,” you know, “go to your tutoring sessions.” And, so, teaching students with the time management, I think this helps. As an example, is filling out that testing form and, so, so that way they, because they're required to, we try to require them to do that at least three to five days in advance. Obviously, we get requests that are, say, the day before, and we try to accommodate. But that's part of that, that learning process and in that self-advocacy piece, And, so, some of the challenges, sometimes they run into challenges where the professors are either less willing or don't understand the accommodations. And, so, that's why I try to help, help facilitate that educational piece to the professor: so students don't run into those types of barriers, because we want them to focus on their studies and not having to fight with professors to get their accommodations.

Lisa McKinley 09:41 So, I am sure a lot of it is professors just not really maybe knowing exactly what a student needs and wants. Sometimes, I, you will have to step in and maybe say, ‘These are the accommodations this student needs…’

Matt Davis 09:57 Right. You know, we, when we determine the accommodations, it's a partnership with the student and one of our staff here. So, we, we just don't tell them, “These are the accommodations you're going to get.” It's, it's is a, it's a collaborative process. So, they kind of feel like they're being, they have that power in their own hands: getting that help that they need.

Lisa McKinley 10:20 It's an amazing resource. And I wish sometimes I had taken advantage of it more. When I was a student, I remember having one professor who refused to allow me to take an exam in private. He wanted to whisper the answers [questions] to me or the, he was proctoring the test in front of the entire class while the class was also taking their tests, but he was trying not to interrupt the class. So, he’s kind of whispering and, and that was the hardest test I ever took. Because, I mean, that's not a good test environment and I think if I would have had the courage to speak up, and, and, you know, called the student disability coordinator, I think I probably would have had more success in that class. So, yeah, speak to that: when students might be, you know, afraid to advocate for themselves and like, how do they find their voice?

Matt Davis 11:19 I think, you know, I do understand because I was a student. As I tell students, I was a student 100 years ago and, so, I remember, you know, students oftentimes are apprehensive about challenging professors as they see, they may see it as challenging professors where we see it as advocating for themselves, because if they're in that course, they oftentimes may be concerned about retaliation from the professor if they push for, you know, those needed accommodations. But I always tell students, when I meet with future students, current students, and even sometimes with their parents, I always tell students that our office is not just for the accommodations, the Student Accessibility Resource Center. It's also a place where students can get help for or, at least, pointed in the right direction for everything WKU.

So, that’s what the disability office should be. So, if a student needs to know, ‘I need to check on how to do my financial aid for next year.’ Well, somebody in our office should point that student or, at least, help them get the information they need, so they can start that process. And, so, I think that’s part of that, you know. Sometimes the apprehension is, is that confrontation, but let us, let someone in the disability services office, sometimes… We always talk about, oftentimes about self-advocacy, but I think oftentimes, too, the student, the disability services office is also there to be an advocate for the student in these situations. And, so, I think that's where they need to understand that they're not on their own, that we're here to support them and to reach out whenever they need that help.

Lisa McKinley 12:58 I think that's a huge thing. I think there's a lot of students out there who, you know, maybe in high school right now thinking about going to college, but then they look at their disability and they say, “No, maybe this isn't for me.” And they're overwhelmed by everything that, that might be involved. And, so, your office can really step in and help them navigate and help them to start to learn to self-advocate and also to be there as a voice for them when it when it gets challenging or when they might need somebody to intercede on their behalf. So, what would you say to someone who's thinking about going to college, but, like I said, they're overwhelmed by all of the prospects of it all?

Matt Davis 13:44 You know, one of my first pieces of advice is to contact, to reach out, even if you're in high school, to reach out to an office like mine on the campus that you're interested in going to just to have a meeting. I usually tell students two things. First off is, one is, make sure that the disability services office is a good fit, as far as, you know, meeting your needs. But also, a college that they have a program that you're interested in, if you know what you're interested in in your career. So, those are two things that I often tell students, give advice to. But meeting, looking at the campus, meeting with someone on the campus, meeting with the disability services office can kind of break down, maybe, that, you know, I always tell students… I get this question quite a bit, sometimes even from parents. It’s interesting that sometimes parents will talk about their children, you know, their son or daughter that's with them in their, talk about them like they're not even in the room. And then often, though, I had to do this the other day: I was talking to a prospective student and mom was answering all the questions and I said politely to the mom, I said, “I'm speaking to your son.” And, so, he started answering questions and, questions that I had and opened up. So, that’s part of that process of kind of letting that, you know, the old adage or the old saying, “Cutting the cord” for the parents and, so, letting them answer those questions. So, always try to direct those questions towards the student. But if the, if the student is, if the prospective student meets the general requirements for being accepted to WKU (which they don't take disability into consideration, they don't ask you if you have a disability), whether or not you're going to be accepted to a university. If they meet those requirements, then it's more my perspective, it's more of not can we make this work, but how can we make this work? And, so, that's where that partnership comes into play. You know, I have a role, the student has a role and, together, we can try to make this work. It may take some adjustments over the course of weeks or the semester. But if we all work together, I think we can make this a goal of working towards a graduation and getting a degree.

Lisa McKinley 15:57 You actually kind of touched on my next question in the story about the mom answering all the questions. There are probably some parents out there listening and they may not be, you know, completely aware of the possibilities that are out there for their children. They may have, you know, been the biggest mouthpiece of the advocacy over the years. What would you say to parents about stepping back and, and allowing their children to take over that advocacy process themselves?

Matt Davis 16:35 You know, I don't want to give the impression that we want to completely shut parents out, but we want to ease that transition, where the student kind of takes over that role. Because it is an important part of, you know… If they have a support system, whether it's a parent or someone that they rely on, that’s in that role, it's important that they be involved in that process in the beginning, because that might be something that they can provide insight to us or to the student or make it a collaborative effort. But I think moving it towards let, letting the student or the future student kind of take on that role themselves. I just wanted to emphasize that, you know, we obviously meet with parents and students when they're not at the college level yet just to go over the process and want to help them as much as we can. I use the example sometimes when I speak to classes that, my first attempt at college, I lived in one of the residence halls and was trying to learn my independence skills. And I called my mother on the phone and I said, “Mom, whenever I'm doing laundry, do I mix the color clothes in with the white clothes whenever I'm doing laundry?” And she said, “You figure it out.” [laughter] After a couple of pairs of pink underwear, I figured it out that maybe you shouldn’t mix them together. So, you know, it's sort of that learning; we prepare students in life. The reason why I mentioned that is we, we prepare students as much as you can, but there's going to be setbacks, and realizing that if you if you learn from those setbacks and you ask for help and take advantage of the resources, you know, being persistent and don't give up and, you know, getting the help you need, I think is an important piece of being successful in college.

Lisa McKinley 18:16 So, I’m hearing you say that, you know, having your support systems in place is very important. So, it’s kind of a balance between, you know, letting your parents or guardians be that support system, but not that over-reliance on them.

Matt Davis 18:33 That's correct.

Lisa McKinley 18:35 I'm glad you touched on that. Because that's, that's really important because you can't really go at this alone; we all need our, our support systems. What do you wish you would have known when you were a college student that you know now, that you've learned from this whole process?

Matt Davis 18:54 I think that what I wish I did, you know… What you could tell your past self is, when I had mentioned earlier before, is just taking advantage of all the help. I have a former professor of mine who is a, ended up being my boss and was a mentor; he passed away about 10 years ago. Dr. David Coffee had a great saying in the class. He’d say, he would ask, a student would ask, ‘How would I, how, what’s the best way to get, get a good grade in this class?’ And he would say, “Get your ass to class to pass!” I’ll always remember that phrase. Because, you know, that's one of the things that is different from high school to college is that, you know, you have to get to class and you have to, there's a lot more. They say that the average, if you have a class that's an hour, that there's three hours outside of class that you'll have to do work on that class. And, so, being disciplined, I think, is what I didn't do back in the, in my 1 st attempt at college. I wasn't very disciplined. That was the first time away from home and I always tell, always make a joke that the residence hall is really kind of like a halfway house: you're away from home, but you're not independently, totally independent. But still, it was a learning process for me that, you know…

We always emphasize or I always emphasize or sometimes tend to, over, over-emphasize how important it is to, you know, to study and to go to class and to get help and to go to tutoring. But part of the college experience, whether you have a disability or not, is to have some fun and being able to balance that, because college should be a, a enjoyable experience. There's so many clubs, there's so many, you know, you can go to games, there's so many networks that students have. People that I went to college with whenever I was an undergrad, I've still maintained contact with in my graduate program. And, so, there's that social piece of it that often times folks don't really realize that’s important for us folks with disabilities.

Lisa McKinley 21:01 Well, Matt, is there anything else we haven't spoken about that I might not have asked that you'd like… students who might be in college now or students thinking about going to college? Is there anything you'd like them to know that maybe we haven't talked about?

Matt Davis 21:18 I think it's okay, sometimes if you're not ready for or if they, if you're not ready for a big college atmosphere, it's certainly a great idea (I did this years ago) is taking maybe some core classes at your local community college, getting in touch with the disability services there, get some classes that everyone's going to have to take that will transfer over. Maybe, even if you don't want to take a full load, which is usually four classes at the college level, to go part time just to see how that's gonna go. And then you can always ease up to a full-time status. So that's my advice is to not be afraid of just jumping into a big campus or to take, you know, so many classes that it's, it may seem overwhelming, but it's certainly reasonable to ease into that type of situation. That would be my best advice and to not let your own fears keep you from doing what you are passionate about. Because the best way to do something that you're passionate about is to get connected with those who are at the college community and all the resources that are available and we can, together, kind of make this happen. Everybody's different; everybody’s plan is different. And that's why we don't have a cookie cutter way of helping students. But just ask for the help, ask questions and that would be probably my best advice.

Lisa McKinley 22:42 Wow, Matt, you have been a wealth of information! I've enjoyed having you on the podcast today. Thanks so much for your time. I really appreciate it.

Matt Davis 22:52 Thanks for having me, Lisa.

Lisa McKinley 22:54 Thank you.

Kimberly Parsley 22:56 Thanks to Chris Onken for our theme music. Thanks to Steve Moore for our providing our transcription. Support comes from the Center for Assessable Living in Louisville, Kentucky. And you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities” in our show notes. Thanks everyone!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Lisa interviews Kimberly about her past life as a romance writer, being a life skills coach, and about having compassion for yourself.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:06 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 Advocado press, based in Louisville, Ky.

Lisa McKinney 00:01 Hello, everyone! Welcome to Demand and Disrupt. I'm Lisa McKinley, your new host number two. Kimberly and I will be sharing some of the hosting, so I’m so excited to be here and to be able to conduct this next interview! If you've been listening to the podcast for some time, you may have recognized that many of the guests featured on the podcast have also been featured in the book, “A Celebration of Family: Stories of Parents with Disabilities.” It's a great book! If you haven't read it, I highly encourage you to do so. You can find it on Kindle as well as BARD Mobile. Our next guest is actually chapter 23 in the book. And, if you have been listening to the podcast, you already know her, you already love her. It is the one and only Mrs. Kimberly Parsley! Kimberly is a writer, podcaster, life skills coach and disability advocate. She lives in Bowling Green, Ky., with her husband, Michael, and their two children. Welcome, Kimberly! How are you?

Kimberly Parsley 01:13 I am great, thank you! They know me, they love me. I love that! I love all the people.

Lisa McKinney 01:19 They do love you!

Kimberly Parsley 01:22 [nervous laughter]

Lisa McKinney 01:19 You are chapter 23 in the book…

Kimberly Parsley 01:25 I do, I give Dave much grief about putting me so late in the book.

Lisa McKinney 01:29 I loved it, though! It was great.

Kimberly Parsley 01:32 Oh, thank you! I think this, I’ll take this opportunity to give Dave more grief about putting me so near the end. But, I, I figure, I figure he wanted to, you know, anchor the end with a really cool person. So, he chose me. [laughter]

Lisa McKinney 01:46 Exactly! [laughter] That's what I say. In the book, you talk about VHL. That is what led to your blindness and some of the disabilities. Can you tell us a little bit more and what does that stand for?

Kimberly Parsley 02:04 Sure! VHL. It stands for von Hippel-Lindau. And, you know, diseases always have weird names. And it is a rare genetic disease. It is considered a cancer, even though not all of the tumors that it causes are malignant. But, that is the hallmark of VHL, it's what it does: it causes tumors in the eyes (that was me), the brain (also me), in the spinal cord. It also causes, when I had a tumor in the kidneys, that was malignant, that was cancer. The liver. Basically, everywhere that you have organs, you can pretty much have a VHL tumor. So, we fight them all the time. It's constant scans of everything to check for them. We don't take them out until they start to cause problems. They did with my eyes, obviously, even though I had, when I was young, something like 30 operations (I don't count) to try to save my sight. But, it just, every time you, every time you do surgery, you also cause scar tissue and scar tissue causes problems, especially in something as delicate as a retina. It was a surgery at my spinal cord, C- 2, that led to the loss of my ability to use my left hand. But, again, that was starting to already cause problems that had to be dealt with. The ramifications of not dealing with it outweighed the risks and that is pretty much what we do with VHL: is its risk management with every tumor. So, that was a long explanation. [nervous laughter]

Lisa McKinney 03:37 Goodness! That must be quite a journey. You first lost your vision (you talk about in the book) at age

1. And, later, I think you talk about losing the use of your left hand. So, you’ve basically been on both sides of the coin: having one disability and then having multiple disabilities. What is it like? You know, comparing the two?

Kimberly Parsley 04:05 It is terrible! I, blindness, I think, I say I would go blind 30 times instead of having, losing the use of my hand. But, I think it's less that the use of the hand was so bad; it's more than having the two things together. Because, if I had sight, I could compensate. Not being, I mean, I have no feeling in that hand. So, if I couldn't, I mean, I can grip things, I just can't feel. So, I can't sense, I can't feel anything. Like, I have no idea how tight I'm holding on to something, but I can hold on to it. But, if I could see, then I would be able to see how hard to grip. So, probably that, that neuro pathway would have already regenerated, based on, you know, the sight would compensate for the sensation and, over time, your body just learns. But, I don't have that and it's not uncommon. I know several people who have the disease that I have who have gone through the same thing with either their left hand or their right: it, the multiple disability.

I was always… Like, in the 90s, we did the whole, you know, ‘Oh, I'm just like everyone else,’ disability. I'm just as independent and all those things we did in the 90s. And, now, we don't really talk about disability in that way anymore, because, you know, I am different. I do have, I do have limitations. I can do things, I just need to do them differently. And I don't, I don't think I was ready to talk about that until the multiple disabilities came up and that… I have a lot of compassion for people with, like, cerebral palsy, because they deal with this. They have very much inspired me, because they deal with multiple, multiple issues, multiple limitations, multiple avenues that they have to use to go around their disabilities. And, so, I have gotten a lot of support from that community.

Lisa McKinney 06:09 I have a tremendous amount of respect for, for you and how, you know, you are. You've written several novels; tell us about that. That's incredible! I wish I could write.

Kimberly Parsley 06:24 All I ever wanted to be was a writer. And I used to write, loved to write everything. I've written poetry, I've written essays. I used to write romance novels and I loved doing that, because they are, are, are so fun! You can just go so many places with that! I, under a pen name, because I wrote with my best friend. She and I, she'd write a book and I edit it and then I'd write a book and she’d edit it. And we wrote under the pen name, “Molly Jameson,” and we wrote a series called “The Royal Romances.” And it, I loved doing that! And I also wrote a series of fantasy novels and that was back in, like, that was like, before 2010. Well, it was before 2008, because I did it before I had my son, because, after that, I was too tired to write anything. And, then, I lost the… I wrote an entire novel on an iPhone. I did, I kid you not! It was not fun, but I did it. But, then, I realized it was so not fun that I didn't want to write any more novels. However, I just got back into trying to use a keyboard and what I realized is, if I put a, put the little stickers or dots on some letters, I can still type kind of fast with just one hand! I mean, with practice, I can see me getting back to, I mean, not, not ever writing, you know, as fast as I used to, but at least getting back to enjoying writing.

So, I’m on the, in that place where I'm really excited about a thing. Like, I just bought a new keyboard for that purpose. So, I’m excited, but also so worried, because, like, what if it doesn't work the way I hope and I get, my hopes getting dashed again, you know? And I think we in the disability community, we know what that's like. We know what that's like to hope for a thing and, or you hear a medical advance that this is going to fix your problem and you get psyched up and you're like, here we go! And, no, it doesn't, so… But, you know, you gotta have hope. However, I do love the show, “Ted Lasso,” and there is a line in that, “It's the hope that kills you.” So, yeah, you know, both things can be true, right?

Lisa McKinney 08:33 It's so true. It's interesting that you say that, you’re so right! We, we get our hopes up and, but, then, at the same time, we realize not to get our hopes too high, because things like that happen. With me, it's, it's, you know, ‘I'm gonna go here and do this.’ And, ‘Oh, wait! I need transportation. Maybe not venture out on this ledge right now,’ because, you know, as much as I want it to happen it, logistically, it cannot happen right now and it might have to wait ‘til later. So, you are so right, but I am sure you will pick, pick it up (one hand writing) incredibly well and we will hear more from you as a writer. And it's going to be…

Kimberly Parsley From your lips to God's ears.

Lisa McKinney Now, you are also a life skills coach. Tell us about that.

Kimberly Parsley 09:23 That is something that I started doing after I stopped writing, because I, I really needed something and I just sort of happened into talking to people about multiple disabilities. And, then, from there, it led to talking to people about dealing with chronic illness, because, I mean, yes, I have disabilities, but I also have, you know, when you have to have an MRI every six months, you're pretty much chronic disability or chronic illness at that point. So, I sort of happened into it and realized that I hated to charge people. But, then I realized, you know, people have money, people like to spend money, people… And I have a service, which, given a lot of the doctors these days, my service is just as valuable. I sort of consider it, sometimes, like a medical doula. Like, some of the things that I do coaching wise, are helping people navigate the healthcare system. You know, I mean, if there's some people who are going to the doctor by themselves and they're overwhelmed, I teach/coach them through. ‘Okay, let's talk about what you really want to know. Let's talk about what questions you want to ask the doctor. Let's talk about what's your strategy when you still have questions, but that doctor is already getting up and walking to the door.’ Okay, can, and I help them say, ‘Excuse me. I really need some more support. Can you sit down and while we talk some more about this?’ You know, because that, we view medical professionals as authority figures and, so, we don't like to tell them what to do. But, you know what? You're paying them; they're working for you. And that is something that I like doing and I've sort of happened into making a business out of it. And I enjoy helping people in that way, I enjoy talking with people. Sometimes, it's behavior modification. Like, ‘Let's think about this thing in a different way, so that we can approach it and not be, you know, all the time just feeling bad about our disability.‘ It's, it's, it's an interesting thing. It's, it's, I didn't realize life skills coaching would allow me so much creativity, but it does, because it allows me to be creative in how I help someone else come to a solution to an issue that they're having. So, I enjoy it a lot.

Lisa McKinney 11:31 It's, it's a very necessary thing. I mean, there are times of my life, I wish I could have had someone walk me through the process. Our son, he was born with a congenital heart defect, and just navigating that the first year. And now we found find out he has a hearing impairment! So, just navigating that – to have somebody walk alongside you and to help you through the process, somebody who's been there before – that is invaluable! That is invaluable. So, thank you for doing that.

Kimberly Parsley 12:04 It is, it is something that shouldn't be the way it is. It should, I mean, people get this terrible news and, especially if it's your first baby? Oh my gosh! But, that's already such a hard and terrible time. And then to navigate the healthcare system at the same time it is, as a society, we should be ashamed. We should just be ashamed that, that this happens and, you know… Rise up! We, we can change it, but it, it takes us rising up and working to change it. But, that’s the thing, isn’t it? When you're already sick or you're already dealing with a baby and everything, changing a system is just not top of your priority, right?

Lisa McKinney 12:38 No. And everyone, everyone needs an advocate, you know, be it peer support, life skills, you need somebody to walk through that process with you. And, if you’re in the hospital, you need to take someone, because who knows what's going to happen if you don't. So, thank you for that! [laughter] Have you learned anything about yourself through the process that you might not otherwise would have?

Kimberly Parsley 13:03 I learned, one of the main things that I've learned is how often I, myself, tell myself that I'm not enough. How much I blame myself, instead of a system that doesn't work for me. Because, I see it in other people and, you know, you, it's much easier to see things in yourself when you're seeing them in other people and I see the people I coach blaming themselves. Like you mentioned transportation, you know, for example, I would see someone who had blamed themselves, because they are blind and can't get to their kid’s thing – event or whatever. And I have done, I've been there, I've done that. And I like to, I would like to think no, but those days are behind me, but, they're not. Every single day, like technology. Oh! It thwarts me at every turn, I swear! And, I'm like, ‘Well, if I could see or if I could use an, a real computer, a keyboard or whatever and use two hands, this wouldn't happen.’ But, yet, ask anybody – non-disabled, sighted, whatever; technology is a constant struggle. But, one of the things I learned about myself is I still blame my disability for things that are, you know, ‘I'm not enough! I did it wrong! I'm stupid about this kind of thing!’ And, even though I know better, I know not to do it, I still do it.

Lisa McKinney 14:22 So interestingly, that kind of leads us into the next question. It seems like through the journey, you've kind of recognized that maybe you weren't always having compassion on yourself? And what would you say about self-compassion? And how important is that for us with disabilities? And even those people who don't have disabilities? Talk about self-compassion for a minute.

Kimberly Parsley 14:46 Well, compassion. I mean, that's this. This is not how Americans role, is it? What's the pull yourself up by your bootstraps, which is, the whole bootstrap thing was meant to be a joke. It's like pulling yourself up by your bootstraps, through the straps on the back of your shoes was like how you would do end up face down in the dirt. That's what pulling yourself up by the bootstraps meant – it meant a stupid way to get nowhere. But, somehow, we have turned it around to be like this thing to be the be all end all, you know, pull yourself up by your bootstraps come from nothing and overcome. And it there is no compassion in that for yourself. And it makes, I mean, sure there are people who can, there are exceptions, right? There always are. And I'm not saying that people shouldn't try. But, I am saying have compassion for yourself, where you are in your life. If you want something different, that is okay! And, you know what? Let's work on that. Strive for more, that is fine! But, you cannot live in strive mode all the time – no one can – your brain is just not equipped for that. So, compassion is, is looked down upon. I mean, we're, it's changing, it is changing, I think. But, in our society, self-compassion, people equate that to being lazy, right? ‘You’re just, you could do it, if you just tried harder!’ Well, no amount of trying harder has ever made me see. You know, it just that, that's not how it works. No amount of trying harder, or working at it has ever made a Zoom call connect, if it is absolutely insistent on not connecting. [laughter] so, instead of saying, ‘I didn't do something right,’ just try to have some compassion. And you know, I try it, I fail at it daily, I think we all do, but there's another opportunity for compassion. It’s, ‘Look, life is not how much you do; life is about enjoying where you are, enjoying what you have, trying to live a life NOT have a life.’

Lisa McKinney 16:46 That is beautiful! That is a sound bite right there.

Kimberly Parsley 16:50 Well, thank you.

Lisa McKinley 17:00 I love it! [laughter] It just self-compassion can be hard. And it's one thing that, you know, reconnecting with you. We met, I don't know, 20 something years ago, and then recently reconnected a few years ago. And, and, and when we did, I was very, I did not give myself a lot of compassion. And I would listen to you talk and you would tell me about you know, life skills coaching and, and you just seemed to have more compassion for yourself than maybe what I was having at the time. And, um, I know that was a process. But, I mean, it just, it was invaluable to me, because now I can sit back and I can give myself grace. And it wasn't always like that. I'm very hard on myself and I try to make myself small. And I think as, as members of the disability community, we oftentimes try to make ourselves small for the benefit of others and I am just now starting to see that's not that's not where we need to be.

Kimberly Parsley 17:54 Yeah, that, that is sure. I'm glad you’re, uh, I am glad you're moving here, because you were, you and Patrick and your kids came over to my house and my children got to see another disabled person – another disabled woman – walking around in their house and they were absolutely gob-smacked! And they told me, “Mommy, she doesn't run into things as much as you do!” [laughter]

Lisa McKinney 18:17 Gosh, that's funny!

Kimberly Parsley 18:21 so, you are definitely inspirational on, on my kids, and it was great for them. It's been great for me, obviously, and it's to reconnect with you. And it's gonna be great for our listeners since I strong-armed you into coming on the podcast, because you have a background in broadcast. So, I went, I knew I needed some other help on the podcast you are, you were right there. So, thank you for, well, for letting me bull you into doing this. This is great!

Lisa McKinney 18:50 Well, thank you. I hope I do it justice. It's a little intimidating. But you know what, the first time you do anything, it's always intimidating. And that's what we really want to get across to our listeners, I think, is to do things, even if they're intimidating, because man, our lives can be intimidating! And we just need to get out there and do it afraid or just do it intimidated, you know. You're not going to get anything done by just sitting around and thinking about what, what I can do and then not doing it. You just got to get out there and do it. Is there anything else we haven't, you know, hit on that you'd like our listeners to hear?

Kimberly Parsley 19:27 No, I think I just everyone in the book, everyone in the book, “A Celebration of Family: Stories of Parents With Disabilities (there's a plug for me),” everyone in the book inspired me in some ways. Some of the people I know, some of the people I just know from the book. And I say that anchored the chapters? There are no bad chapters in this book. I mean, everyone is like you said, the word, “inspirational.” I hate that word, but I have learned something from everyone and they have inspired me, but I think it's okay for disability, people with disabilities to say that of other people, I just think we are not a show for the able bodied to feel good about themselves. That's where the whole inspirational thing comes in. But, the book is just so full of people who have, like you said, ‘Do it afraid.’ They did it. And we do it as disabled people, because we don't really have any choice. But, I guess the other side of that is the self-compassion. Give yourself the space and the grace to make mistakes and know that everyone makes mistakes and, then, just try again. You know, ‘Do it afraid, again!’ That's what it's about.

Lisa McKinney 20:34 Thank you, Kimberly. It has been a pleasure speaking with you today. I know our listeners enjoy it. Again, Kimberly is chapter 23 In the book, “A Celebration of Family: Stories of Parents with Disabilities.” And, if you’ve not read it, please do so. It's incredible! It's uplifting! I wish I had something similar to read 20 years ago. If you, if you’re a parent with a child with a disability, this book is for you, because you see that, you know, the world is your child's oyster! Sometimes, we get the diagnosis for our child and we think the world is over for them. You read this book, you see that's not true! If you have a disability yourself, check out the book – it is uplifting, empowering, encouraging! And, if you just want to be a more decent human being, read the book, because, I promise, after reading, “A Celebration of Family…,” you are going to be a better human being. It will change you and you will be better for it! So, thanks again, Kimberly. Thanks again listeners! ‘Til next time…

Kimberly Parsley 21:46 Thanks, Lisa. Bye, everyone!

Thanks to Chris Onken for our theme music. Thanks to Steve Moore for providing our transcription. Comes from the Center for Accessible living in Louisville, Kentucky and you can find links to buy the book A Celebration of Family: Stories of Parents with Disabilities in our show notes. Thanks, everyone!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Jerry Wheatley is a wonderful person who I have given the worst superhero name ever "Blindness Mentor".

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:01 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 Advocado Press, based in Louisville, Ky. Today's interviewee is Jerry Wheatley. Jerry has been a mainstay in Ky's disability community for decades. For the past 30 years, Jerry has worked and volunteered in the field of assistive technology. He has served on the Assistive Technology Loan board, the Center for Accessible Living board and the Hart Supported Living board. Jerry retired five years ago, but he continues to fight for people with all disabilities. He continues to fight to make private insurance, Medicaid and Medicare pay for hearing aids and ramps and he believes that the income limit for all people with disabilities on SSDI should be the same, regardless of disability. Jerry hails from Raywick, Ky, but he now lives in Bardstown with his wife, Lee.

Jerry is also one of my favorite people in the entire world. Hey, everybody! Welcome back to another episode of Demand and Disrupt, a disability podcast. And today, we are joined by Jerry Wheatley! Hey, Jerry, how are you?

Jerry Wheatley Hey, Kim. I'm doing just fine.

Kimberly Parsley Thank you for joining. I had to do a little arm twisting. You’re, you're very shy. Very, very shy, quiet, unassuming guy. Aren’t you?

Jerry Wheatley 01:28 That's me. Absolutely. [laughter]

Kimberly Parsley 01:32 So, I met Jerry, for our listeners, I met Jerry when I was a brand new, little baby blind person. I had been blind about three months and when they told me that, to go back to school as a sophomore, I would have to go to… It wasn't even the McDowell Center; it's the McDowell Center now, but it was just the ‘Rehab Center’ then, which I thought was a drug place and not where I needed to be. But it turns out it is to rehabilitate people who are newly blind. And I hated it there and I wanted to go home and, like I said, I'd just been blind for a few months. And I met you and Lee there and, I remember, you stayed up with me for hours that evening – you and Lee – to, like, after midnight, and you taught me how to use a computer, so I could go back to school. Do you remember that?

Jerry Wheatley 02:32 I do. Yes, I remember. And working with you was kind of easy. All you needed was just a little bit of encouragement and you were gone! You were ready to go.

Kimberly Parsley 02:43 And, see, I did not know that lying was one of your skills. And you just did it so well! You just, you just did it right so well.

Jerry Wheatley I try. [laughter]

Kimberly Parsley So, I always refer to you as my blindness mentor, which is just, like, the absolute worst superhero name ever. Isn’t it?

Jerry Wheatley 03:03 It absolutely is; I'm kind of embarrassed.

Kimberly Parsley 03:08 But I don't know where… I tell you, you really changed the course of my life! If I had not met you and Lee and you all helped me to know that I could do things as a blind person, give me the tools I needed. And I just, I just don't know what, I just don't know that I’d have done it. So, tell me a little bit about Jerry and your blindness journey.

Jerry Wheatley 03:31 All right! Well, [garbled] retinitis pigmentosa. I was diagnosed when I was about eight years old and I was considered a very high partial, legally blind, when I was about 10 or 11. But again, legally blind is so, there's such a wide range between being legally blind and being totally blind. It's, it's incredible, the difference. I grew up on a farm and went to public school. All but my last couple of years, I went to the Ky School for the Blind. Again, my vision was still pretty good. I was legally blind, but it was good. And after graduating from Ky School for the Blind, I went to college, a junior college, for a couple years. And this is back in the 70s before PCs. But I worked on, my degree was in computer programming. But after I graduated, I didn't want to do that, I wanted to farm. I went out and farmed until I was almost 30 and I lost most of the rest of my sight – not all of it, but quite a bit of it – where I could no longer drive the tractor. So, I went back to school, to college, went to Western Ky University and…

Kimberly Parsley Bing! Go Toppers! Right? [laughter]

Jerry Wheatley Nothing wrong with WKU and all those darn hills and steps! [laughter] And still was interested in computers and by then we had the PC; at least we had the Apple. And, you know, from there, I wound up eventually working for state government, here in Ky, with an organization called the Ky Assistive Technology Services Network. And, basically, from about mid-30s up until, you know, mid to late, late 30s, I was totally, lost all my sight and was totally blind, so. I retired, maybe five years ago. I'm now 65 and live in Bardstown, Ky, on a little baby farm. [chuckle]

Kimberly Parsley 05:51 You know, I remember calling you one time when I was at Western, I got to, went to Western – by far the best school, you know, in the state. We will hear nothing to the contrary, no opinions to the contrary on that.

Jerry Wheatley Absolutely.

Kimberly Parsley And I remember calling you, because I was upset about something. And I don't even know what it was. Um, and I was, I think I may have been in tears and wailing and, you know, all that. And, so you talked me down and you said, ‘Well, you know, if you ever lose your cane, I'm pretty sure there's still one on top of Cherry Hall where I threw the damn thing!’ [laughter]

Jerry Wheatley 06:31 That was a very big deal for me: making myself carry a cane. And I don't know why, it just… As I lost my vision and really needed a cane, it, it was, it was a struggle to make myself pick that thing up and go out with it. But eventually, I did and it worked out okay. But I did throw a few around.

Kimberly Parsley 06:57 So, tell me about that. Why do you think that was that you were so reticent to pick up a cane?

Jerry Wheatley 07:02 You know, it's such a transition from being partially sighted or low vision to being totally blind. I can remember, with some of my buddies who were totally blind, and, you know, we'd be out in a strange place or at a meeting or something like that. And anytime we were getting ready to go up, you know, they’d grab an elbow. And I was thinking, ‘Well, I don't need to grab an elbow.’ And at the time, I really didn't. But when I went totally blind, I needed to apologize to all of those guys. It was, it's a different world! And it took me a couple of years after losing my light per se, you know, my light perception and everything else, before I really felt comfortable with my mobility and getting around. Always had a good sense of direction, but when I went totally blind, that kind of screwed me for, for a few years, you know, before I really got good and comfortable again.

Kimberly Parsley 08:03 Uhuh, uhuh. I think it says a lot about you that the thing that sent you to college was not being able to drive a tractor anymore.

Jerry Wheatley 08:09 You know, that was such a big part of farming to me, was, you know. A person, believe me, a person can be a farmer and do farm, most farm things, without sight and I do them now. I garden, we have some calves, do that kind of stuff. I can fence, I can, I can do everything, but I can't drive a vehicle, obviously. But to me at the time, in my Late 20s, that was such a vital part to me, to be able to drive the equipment. And, you know, and I got fairly dangerous before I quit. And, and I just, I couldn't see myself at that time farming without being able to, to be able to operate the equipment. And it was, it was pretty hard. It was a hard transition for me; all of that part was. And I think, I think still today that there's no occupation that I would rather do if I had my choice. Starting as a kid again, it would be farming, even though it's not necessarily a lot of money in it. It's just something you grow up with it, you learn to love it and you always want to do it. And when Lee and I retired, I was dead set on coming back somewhere on a little bit of acreage to at least pretend I'm farming. [laughter]

Kimberly Parsley 09:32 So, are you enjoying your retirement?

Jerry Wheatley 09:34 Oh, yeah. Absolutely! Absolutely. We, we, you know, we do a big garden and we've got, you know, we run eight or 10 feeder calves. We get them early in the spring and keep them to late fall and, know, got a bunch of fruit trees and all that kind of stuff. So, it’s, it's always something to do.

Kimberly Parsley 09:54 Good! Good. So, um, like, I’ve talked about how you were a mentor to me. So when, when you were going through that transition into total blindness, is there anybody who helped you through that? Any mentors that you had?

Jerry Wheatley 10:11 You know, at the time… Now, when I was low vision in grade school and high school at public school, you know, it's just something I dealt with, you know. I was never around anybody else that had a vision problem. I never met anybody who had a vision problem, so… But when I went to KSB, I was around a lot of people who were totally blind, high partials, whatever, and you become friends with them. And I had lots of friends that helped me get through that, you know, that had been, you know… There, there are a lot of us out there with RP and visual impairments that are degenerative, like RP. So, you know, I had friends that had been through it and all that kind of stuff. So yeah, I had a lot of help getting through that part of it.

Now, once I went back to school and wound up working for the Ky Assistive Technology Services Network (and that would have been around 1990) and KATS, at the time – or it's the Tech Act Project for Ky – and, basically, it's all about assistive technology for any disability; it’s the promotion of, the awareness of, and the demonstration of. So, we, we dealt with technology in all aspects of disability. And, and we had a, and it's federally funded, there was a main office – still is, it’s still around – and then we had, like, five centers around the state. And my first couple of years working for KATS, I actually worked at the Bluegrass Technology Center. And, I mean, I have worked with some amazing people: some advocates that are just, you know. I think back how lucky I was to get to be around some of these people. Like a Jean Isaacs, who was the queen of augmentative communication. Professor Deb Bauder, who I think is probably retired from U of L. But back when I worked with her, she was a PhD doctoral candidate at UK, and just so many other people and, that I worked with, when, during my time at KATS. And one of the, one of the people is – I want to mention that recently, Sharon Fields, and if anybody's from Ky and they have been any involved with disabilities at all, would know who she is. But she passed away recently and she was amazing. In 1991, I think I got that year right, when the ADA passed?

Kimberly Parsley 12:59 Uhuh. Very close.

Jerry Wheatley 13:01 Whatever year. [laughter] She was appointed the ADA Coordinator for the state of Ky. And, so I got to work with Sharon; me and, and a lady, another lady I worked with named Zola. And we went around and did training sessions on ADA for state government and working with Sharon was just awesome. And Sharon is, was been, has been a not just blind; she was, she was totally blind. She was not just an incredible advocate for blind/visually impaired, but she was an advocate for all disabilities. And she was the kind of advocate and… How can I put this? To me, it's easy just to go in and raise hell. You know what I mean? Just raise hell and bitch about something, but to be a true…

Kimberly Parsley 13:55 You do make it look easy. You do make it look easy. [laughter]

Jerry Wheatley 13:59 Watch your mouth. But to be a true advocate to me, you got to advocate and participate. You got to not only demand, you know. Your Demand and Disrupt: cool name, I think. But you not only got to ask for things or ask for the accommodation or, or whatever it is, but you got to participate. You got to be a part of the answer. You got to be able to look on the other side and see, ‘Can that accommodation, is that accommodation actually reasonable? What can I do to make that whatever it is want me there?’ So, and Sharon was fantastic about that. She was… Any, any kind of thing that dealt with disability, she was there, whether she was working or volunteering; she did as much volunteering as she did working. So, it was a privilege to work and know Sharon Fields for the past 30 some years. So, anyway, just wanted to mention, mention her and, you know, to mention her passing. So…

Kimberly Parsley 15:06 I'm glad you did. And we, of course, send our condolences to her family. She was truly a legend in, in Ky. I heard her name all the time. When I did an internship in Frankfort in 1996 and I heard her name a lot then. And, you know, you're right: there is there's a time to kick down the door and there's a time to use your manners. And people like you and me, we could do the door kicking down, because Sharon, people like Sharon, were there using their manners. Right?

Jerry Wheatley 15:35 Wait! You are better at kicking down doors than I am! Maybe a little bit better! [laughter]

Kimberly Parsley 15:43 I'm better at maybe stumbling and falling through doors and making it, making it look like I meant to do it. That moves me into my next. Next thing I was going to tell you was we have someone who thinks that you are that for her. So, I want you to listen to something that Elizabeth Thompson said about you.

Jerry Wheatley Ah-oh…

Elizabeth Thompson 16:04 My name is Elizabeth Thompson. What can I say about Jerry Wheatley? I'll pause right here, so he has time to laugh. Just kidding, on with my audio. Jerry is the goat! Not the animal but the Greatest Of All Time advocates. Not just for people with disabilities, but all people. Jerry is one of the people in my life I would happily age for, just so I could have worked with him earlier in my career. He made a huge impact on me, just being the person he is every day. He will do anything he sets his mind to IN the most unique way you can imagine. When I quit working at the job where Jerry and I work together, I took a picture of my office door to remember him by. Yes, my office door. Using his quirky sense of humor, he would hit my door with his cane as walked by and yell, “Hey! Wake up in there!” Once again, he demonstrated his remarkable skills as the true tradesmen is. Because, for the hundreds of times he hit that door, there was basically only one long mark. [chuckle] I always say Jerry is like a favorite family member and I would have him a special room in my house if he needed it. As I wrap up, I will leave you with a sign of mine and Jerry’s friendship. When he retired, I gave his wife, Lee, a sympathy card. Love you, Jerry.

Kimberly Parsley 17:30 So, Jerry, what do you think about that? You have had some impact on people's lives, huh?

Jerry Wheatley 17:38 [laughter] You know… First off, Elizabeth was incredible to work with. She is another person I enjoyed; you walked into the office every morning and she was always in a good mood. And, believe me, that made such a huge difference. She was always joking around. Didn't matter how you felt, you, you felt better after you walked in and said hi to Elizabeth. So…

Kimberly Parsley 18:02 So, I want to ask you about something that you used to talk to me about a lot and that was learned helplessness. So, can you tell me what learned helplessness is?

Jerry Wheatley 18:11 I sure can. And I'm sure, Kim, you've run into it just as, maybe not as much as I have, because you're not anywhere near as old as I am! [laughter] But, for example, when I worked at Bluegrass, in Lexington, before I moved to Frankfort, I did a lot of work with Protection Advocacy. We'd go out to school systems, meet with parents and work with different kids who were advocating for or different parents or kids who were advocating for what they needed at public schools or whatever school they were at. But you would meet some incredible parents and, that would be out there really demanding stuff for their kid; they wanted their kid to, to succeed. But you would run into some kids that you – and I'm not talking about just kids that I would work with, these would be adults sometimes – that had been so hovered over and so not, you know, not helped to be independent from a kid that they had been taught to be helpless. And that, that’s what I always considered learned helplessness. I had parents that were awesome! I didn't, you know, you, looking back, you know. They let me just, they let me go out and live and do. As a little kid, I would go out and do things even though they knew that some of the things might have been a little bit dangerous, they didn't hover over me. Of course, I had eight other brothers and sisters. So, if we lost one, you know, what would be the big deal? But I just…

Kimberly Parsley 19:55 That is so terrible! [laughter] Your siblings are probably going to listen to this and they're probably not going to be surprised that you said that! [laughter]

Jerry Wheatley 20:04 No and they probably tried to lose me once in a while! There's no doubt.

Kimberly Parsley 20:08 As a parent, I do walk that line of… I mean just, just today, I, in all sincerity, asked Michael if a human hamster ball was possible, because I'd really like to put my daughter in one and send her to school that way. Because, it is scary: you, you want to protect them, but you also got to empower them.

Jerry Wheatley 20:34 I would just like to know, it's like… I can remember one kid in particular when I worked in Bluegrass (this would have been about 93, maybe 92) from Eastern Ky, Far Eastern Ky. I never met the kid and I never met his mom. But he was about 12 years old and had just lost – one day he was, vision was perfect, next day he was totally blind. So, it’s kind of like you: a month or two later, his mom contacted me and, you talking about an advocating, advocating mom? She was great! I mean, she wanted that kid to go, you know, to have every piece of technology that could help him finish school and go to college. And she was constantly, you know, she was awesome! And the kid, and the kid would call me sometimes and he was so laid back. And I mean, he was, he was determined. I'm not saying he wasn’t, he was. He said, “I know mom needs to chill, but let me ask you this…” And he was an incredible kid and I worked with him off and on over the phone for a couple of years and I always, I heard that he went to UK and graduated from UK. But kids like that, that I met and worked with, like you and [him] (I can't even remember this kid's name), but that, you guys just made an impression that made it feel like I was, you know, what I was doing was worthwhile. And, like I said, to me, it's the kids like that that all they needed was a little information. Kids like you when you were a kid, I know you're not a kid anymore.

Kimberly Parsley Far from it! [chuckles]

Jerry Wheatley You on… And if it was a way to put that genetics and that personality and that drive and that parenting in – not just kids with disabilities, but in all kids – it would be awesome. In a way things are, technology-wise, they are so much better. And I think it, with the smartphone, the first iPhone, I mean, I thought, ‘My God, this thing does everything!‘ you know. So, the technology – not just the iPhone: the, you know, the, the technology in general – whether it's computer related, whether it's screen readers, you know, how well they've gotten; whether it's augmentative communication, all of this stuff has gotten better. But, and, I don't know if, you know, the end, you know, the kids… I haven't worked with kids in a long time after moving, you know. When I went to the main office, I didn't do as much direct services. I was more working on projects, so… But I'm sure there's the same mix that: kids that don't have the drive and kids that do or adults that don't have the drive and adults that do. So, I find it hard to actually quantify the difference between now and then. I just, I know the difference, like, the Ky School for the Blind. When I was there, most of the kids there in the 70s, if you took vision away and, and just looked at the kids in general, it would have been like any ordinary public school. I mean, kids were just standard kids, you know, and most of those kids that would go to the Ky School for the Blind today are mainstream. So, I think that is probably the biggest difference is that, at least in that area and I think for most other disabilities, they were mainstreamed anyway. But, you know, for varied, I mean, the Ky School for the Blind still has students, but they have students, not with just vision; they have, it's more a lot of multi-disability students. So, that part of it has changed. I’m not saying those students aren't awesome, because I'm sure they are.

Kimberly Parsley They are.

Jerry Wheatley But, it’s just, when I was there it was vision-only; now it’s more than just vision.

Kimberly Parsley 24:44 I see. Yeah. And there's such a role for those schools, you know, schools for the blind and things, still. Yeah.

Jerry Wheatley 24:49 And their role has changed, because of the mainstreaming, I guess, in order to serve, in order to do things, they had to. So…

Kimberly Parsley 24:58 Yeah. Yeah, because I, because I, I was mainstreamed, I never, I never got the Braille skills that I wish I had now. I wish I had, I wish I could read Braille really fast and really proficiently and I just don't, you know, and if I'd gone to School for the Blind, I would have, you know, I would have had that, so… I have the… Oh, sorry, go ahead.

Jerry Wheatley 25:20 No. I was just gonna say I, when I went to School for the Blind, I learned to read Braille there. But, again, I was a high partial: I read Braille with my eyes. And, so I could, I could get on a Braille writer easily; it's an easy code to learn. I wasn’t… When I was there, I if I wanted to read it, I'd pick it up and read it with my eyes. So, when I got to back to WKU, when I was no longer able to read print and I had to use Braille, that was one of the hardest things I ever did in my life was to learn to read the Braille with my finger. So, my God, was just, it’s just such a disconnect between, if you're always taking that input through your eyes to your brain and then you go to try to do it with your finger. And I'm sure you know, because you've tried, you've played with it some as an adult, and it's, it's very difficult. I finally got to where I consider myself competent, you know, maybe 40 words a minute (best ever got) where kids that learn braille from a kid, you know, 150-200 words a minute; they can read as fast as print. It's incredible!

Kimberly Parsley 26:36 So, what, what gives you hope for the future? I've been blind now 30, gosh, more than 30 years. So, it’s a long time. And, so in 30 years, what gives you hope for the future?

Jerry Wheatley 26:49 Well, here's the thing, now, and I never mentioned I am next to the oldest of nine kids. Right? [chuckle] I was the first, you know, my parents knew I had a vision problem when I was five or six, because, you know, they would, you know, they could tell that I wasn’t perfect. I didn't get diagnosed until I was eight or nine. But I have a middle brother who had RP and then I have my next to my baby brother who has RP and they didn't know it until long after I had it, because they weren't born until long after I was! But one of my brothers (and this is my brother, Ronnie), back when they were doing the implants for retina, for different retinal diseases, you know, and they were, they had little things – people would come and speak about it at APH back 15-20 years ago – I'd go to all those; I’d keep up with the latest research. And my brother, Ronnie, told me something and he's so right. He said, “Jerry, keep up with the research, but just, just glance at it, look at it, don't focus on it. Because, if you start looking ahead and thinking you're gonna get your vision back, you'll quit living now.” And he was so right, because I was starting to get it in my head that, hey, maybe, maybe, you know, that… What was it, the $250,000 eye implant that put the artificial deal together? I can't even remember the name of all of them. But, it, he was so right. You have just say, ‘Hey, yeah, I hope someday I see again. I don't think I will and I don't plan on it.” Because if you do, I really think he's right: you’ll quit living now, you'll focus too much on what may never happen. So, my, the future, as far as I'm concerned, is I'll be blind until the, until the day that take me to the other side of Raywick.

Kimberly Parsley 28:42 Well, Jerry, it has been wonderful talking with you, again. And I am personally glad that my children got to meet you when we were up in Louisville and when we had the dinner to honor the people who contributed to the book, “A Celebration of Family: Parents with Disabilities.” I always plug the book. Dave get, Dave yells at me if I don't plug the book, so I plug the book.

Jerry Wheatley 29:08 That Dave is such a taskmaster. Isn’t he?

Kimberly Parsley 29:09 Yes. Yes, indeed. And, so my, my kids got to meet you and you got to sit beside my daughter. And if I remember correctly, Lee only had to call you down twice.

Jerry Wheatley 29:22 You know what? I was on my best behavior that day.

Kimberly Parsley 29:26 That's your best behavior? [Laughter]

Jerry Wheatley That is my best.

Kimberly Parsley Well, thanks, Jerry. Everyone, read “A Celebration of Family: Stories of Parents with Disabilities.” Jerry and his wife, Lee Corman Wheatley, are chapter 24, which is after 23, which is my chapter. So, everyone, thanks for joining me! Thanks for joining, Jerry.

Jerry Wheatley 29:51 Thanks, Kim.

Kimberly Parsley 29:53 Thanks to Chris Onken for our theme music. Thanks to Steve Moore for providing our transcription. Support comes from the Center for Accessible Living in Louisville, Ky., and you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities” in our show notes. Thanks, everyone!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Kimberly talks with Lisa McKinley, blind mother of two teenage boys. They talk about the benefits of being a blind mother. It might shock some people to know that there are some.

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.

I talk to Rick and Marissa Roderick about how Marissa came to be adopted by Rick and his wife, Carol, and my daughter, Sayer, puts in an appearance to ask a burning question from one child of a disabled parent to another.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 00:06 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 Advocado press, based in Louisville, Kentucky.

Computer Voice 00:21 Marissa Roderick was born and raised in Louisville, Kentucky. She had six foster homes, but only remembers one of them. She currently works at the American Printing House for the Blind in the proofreading department as a copy holder. She said it's literally a dream come true – she gets paid to read. She said she has a wonderful better half named Josh who has retinitis pigmentosa. They have Josh's German Shepherd guide dog, Gingka, and a beloved tripod cat named Izzy. Marissa holds a Bachelor’s of Science in Psychology and American Sign Language from Eastern Kentucky University. She is a strong ally and advocate for individuals who are deaf-blind.

Rick Roderick said he started out as a Hoosier, being born in Richmond, Indiana, and later moving to Martinsville. When his parents wanted him to be able to live at home during grades in high school, they moved to Normal, Illinois, where his dad got a job at what is now Illinois State University. During grades in high school, the schools had resource rooms where Rick got the help and support he needed to attend school. He attended the University of Illinois, obtaining a Bachelor’s Degree in Psychology and a Master’s Degree in Counseling. He then got a Master of Divinity at Louisville Presbyterian Theological Seminary in 1975. He worked for 10 years as a rehab counselor and for 18 as an assistive technology specialist for the Kentucky Blindness Agency. He married Carol in 1978 and they adopted Marissa in 1985 when she was 16 months old.

Kimberly Parsley 01:31 Welcome, Rick Roderick and Marissa Roderick, to the Demand and Disrupt podcast. How are you guys doing?

Rick 01:38 Oh, I'm just fine.

Marissa 01:40 I'm good! Good, good, good. Having, having a good weekend.

Kimberly Parsley 01:45 Excellent! Excellent. Rick, you have been around a long time. You are a staple in the disability community, at least in Kentucky. But I know I've heard your name mentioned on a podcast from Mosun at Large, who is a New Zealander. So, you certainly do get around.

Rick 02:05 Well, that, he will send out emails bringing up questions or things he wants discussed and I replied a couple of times to those.

Kimberly Parsley 02:16 Excellent! Excellent. You've got a lot of good advice. I remember being at the McDowell Center before it was even called the McDowell Center and you were teaching me how to use a computer. And that would have been a very long time ago, back in the 90s. So, it is good to get to talk to you again. So, tell me about your story in, in the book. It, it, getting Marisa into your life was kind of a long and winding road, wasn't it?

Rick 02:45 Yes, it was. We, we got into infertility treatments; Carol had, had those for a while and nothing was happening and, you know, that just gets really expensive and we finally said, ‘We're giving up.’ And the adoption scene did not look good, you know: if you, if you just, if you put in for a child – if you want an infant, then it just takes, it may be years if you get one at all. And, so, we started listening to Wednesday's Child, when I, which is a program on our CBS affiliate, and they break down different, different children and family groups. And they were older – most of them are, there's more than one. When there was a younger one, we thought, ‘That’s not really what we feel we can handle.’ So, all of a sudden, on June 26, 1985, we hear an announcement that there's going to be a baby on and that’s, that was highly unusual; it never happened before. So, we listened and we heard, ‘She's legally blind,’ you know, they kept stressing that. But we both felt at the same time, ‘That's our child!’

We were told that we, you know, we went into; I call the next day, we got into classes, we were told there's no assurance that you will get this child, you'll get Marissa, so, we, but we persevered. We tried, because of the uncertainty, we tried to private adoption that fell through. We also looked into another private adoption. And Carol said to me, you know, ‘Why don't you call Special Needs and see where you are with that? See where we are.’ And, so I did that and they said, ‘Well, let's, we'll get back to you; I think we can make a decision pretty quickly.’ And her name was Joanne Harrison and she called back and said, ‘If you want her, she's yours!’ So, that started the whole process of home visits. And she was supposed to say goodbye to her last foster family where she was only briefly (the other one had some things come up and couldn't watch her). And, so, we, we never, she never got back to say goodbye to them, because there was about, you know, a minor ice storm and Carol said, ‘I'm not going to the other end of town!’ [chuckle] And, so, the day, so, really, December 12, 1985, was that very special day! And maybe I've got into too much detail here.

Kimberly Parsley 05:42 Oh, no! No. It's a beautiful story.

Rick 05:45 I was scared to death! I thought I might drop her. I might run into her. And I'm not very good with babies. But it worked out. And, but, you know, as we got older, you know, I was able to do more. And we, I used to read to her at night. And I was able to help with things like college, college assignments. You know, I could sometimes look at something she'd written and come up with something that I think sounded a little better, whatever. But, we, we had those kinds of things and those are some of my memories. And that's, that's about all I have to say about that! [chuckles]

Kimberly Parsley 06:29 Marissa, you were a celebrity early on, right?

Marissa 06:33 Apparently! And another rarity that I don't think happens too much is they did a follow up segment later on from Wednesday's Child, kind of, you know, seeing how we were after the whole process and seeing how well things were, you know, thriving and surviving and whatnots. And they kind of segued into other Wednesday's Child families after that point. So, yeah, I was kind of a celebrity from the get go! [laughter]

Kimberly Parsley 07:10 Absolutely! So, have you gone back and watch that? Like, as an adult, you've gone back and watch those segments?

Marissa 07:18 I have! My aunt and uncle, they still have the video tapes. And, yeah: they're like really old and scratchy, but they still work. Goodness! It's adorable! I still remember the (garbled) I was playing with in the segment! [chuckles]

Kimberly Parsley 07:38 Oh, wow! So, so you are visually impaired and your dad is blind and has hearing issues, right? Marissa Yep.

Kimberly Parsley What, what? I don't know, what’s the best way for me to say that? Hard of hearing? Deaf-blind?

Rick 07:53 I, why, I like hard of hearing, since the definition was broader than I thought it was. You know, I'm not totally deaf, but I have a problem with noise and, basically, people or things have to be close. You know, that's, that's how I would describe it.

Kimberly Parsley 08:12 Yeah? Yeah, I understand. So, Marissa, what was it like growing up with a dad or a parent who was disabled?

Marissa 08:22 I don't think, for the longest time ever, I don't think it really clicked with me that there was something off or different about my dad or my mom in anybody else's family. Like, at some point, I thought, ‘Okay, well, all dads have dogs and all moms drive cars.’ And I remember a childhood friend of mine and I was just baffled, because her dad was driving, and she didn't have any dogs in her family. So, I think that was the moment that kind of clued me in that maybe, okay, something is different. [chuckle] I don't know when I became a daddy's girl, but I just kind of remember really early on suddenly having to help my dad and I realized my mom could sort of kind of fend for herself. [laughter]

Rick 09:25 Well, that came kind of gradually, because, you know, when you were real little and your mom was dominant, I would say, as far as I could, there was something going on, you would, you felt stressed, you'd go to her. And then, later on, you’d come to me, you know, when you got older.

Kimberly Parsley 09:42 So, did your dad teach you, teach you blind tricks? You know, like how to, I don’t know. Like, how to read Braille or use screen reader? Things like that.

Marissa 09:53 I always would kind of sit in his office and I knew his computer was talking and stuff. But he has it so fast, so I couldn't understand it. I just knew, at some point, you know, he could slow it down. But I remember he did kind of teach me Braille. At least grade one, not the whole shebang.

Rick 10:17 I gotta tell you what, what I did. You know, this was a DOS computer. It was the first one I had. And it was what a much more primitive synthesizer, map. I would, she would write her name and that, at that time she went by Molly (it’s Mary Marissa). Anyways, I would have her, she could write Molly on the computer and it would say, “My name is Molly Roderick. I go to presents for school.” [laughter]

Marissas 10:51 I do remember that. [laughter]

Rick 10:56 And then I would change, I would change the, the DOS prompt, which it was then, to say something else that I had. It would say, “You turkey! You turkey!” And I would switch it back, but try… [laughter] Kimberly Parsley 11:11 It sounds, it sounds like you two had fun with it!

Rick We did.

Marissa 11:15 Oh, yeah! [chuckles] Kimberly Parsley 11:18 That’s awesome! That's awesome. Rick, I know you said in the beginning you were afraid you might drop, you might drop her?

Rick 11:28 Yeah. Or I might knock her over. I mean, going up and downstairs, I might knock her over and, fortunately, that never happened. And she's very resilient.

Marissa 11:37 I remember I used to play tricks on my dad and, to see what I could get away with. I would act helpless, like I couldn't climb out of the crib. And he caught me climbing out of the crib one time. [laughter]

Rick 11:54 Well, I never…

Marissa 11:56 I would, I would always hand him stuff, whether it was things I should be handing him or not. [chuckles]

Kimberly Parsley 12:02 Like, to play a trick on him?

Rick 12:05 I'll never forget when she, I get to sit, I used to get cassettes from the library. You know, talking books. One time she took quite a bit of and unrolled it. Never took that thing back. [laughter]

Marissa 12:24 But I handed it to him! [laughter]

Kimberly Parsley 12:26 Yeah! [chuckles] You didn't steal it or take it away, you know! Could you get the cassette tape ever reeled back up?

Rick No. Never did! [chuckle]

Kimberly Parsley No? Sometimes you could! I remember back when cassette tapes and sometimes, if you, you know, accidentally cut it. Sometimes, if you worked real hard and were real patient, you could get them all rolled back up. But…

Rick 12:48 Now they don't use cassettes anymore.

Kimberly Parsley They don't.

Rick They're all electronic. So, they’re really pretty much indestructible. Cartridges for some, you know. But I usually just download them.

Kimberly Parsley 13:01 Yes! That’s what I do, too. And I appreciate it, because I can't, can't tear, tear up a cassette or lose a cassette or something anymore. Marissa, how was it going through school? Because all the people I’ve talked to about parents with their kids, how was it going through school with your visual impairment?

Marissa 13:23 I'm not gonna lie school was not, not always great. You know, I think the younger years, you know, K through five, et cetera. I think the teachers did try. They didn't have a whole lot of experience or exposure with a visually impaired student, so they weren't really sure how to attend to certain needs, you know, during class time. But there was a lot of parent teacher conferences and a lot of discussion that I remember my parents having and sitting down with the teacher as well. ‘This isn't gonna work this way. Could you try it this way?’ You know, ‘Sit in front of the classroom?’ ‘Could you verbalize what you're writing on the board?’ ‘Could she work with a lab partner?’ Things of that nature. And I was bullied quite a bit by most of my peers [nervous laughter] up until, I would say, college. College was the defining moment where I felt like I didn't have to fight to fit in. I didn't have to prove that I was smarter than, you know, my disability. I mean, I was just a person. They didn't care that I had a visual impairment, they wanted to hear about me: what I wanted out of the class, why I was there in college, what my hopes and dreams were. So, it was nice to finally feel kind of, ‘Ahhh…’ you know. ‘I can breathe! I can actually focus on my education!’

Kimberly Parsley 14:58 So, when you were in school, there was, they didn't mainstream kids, right? That's what they call it.

Rick No. I was mainstreamed.

Kimberly Parsley Oh, you were. Okay.

Rick 15:07 I was. Okay. I was, originally, I was living in Martinsville, Indiana, where my dad taught, taught music, high school students. He taught both grade and high school by that time. Born in Richmond, Indiana, and then moved to Martinsville. Then, the, we looked at the Indiana School for the Blind and, you know, I might have gone there and that would that would have been if I’d, if he'd stayed at that job I would have. And, then, we ended up moving to Normal, Illinois, which is in the central part of Illinois where Illinois State University is and he got a job there teaching college students. Eventually, he got his doctorate and he lived, they lived there, the rest of their lives. And I lived there until I, you know, I went to college and seminary and then that.

And, so, that was my story. But, I used, I was in places, the grade school had a Braille resource room in those days. I don't think it's been practice since, because there aren't as many of us, but the people who used Braille and the people who used large print were in different resource rooms. And, so, that was also true when I was in Champaign, Illinois, where my dad was working on his doctorate at the University of Illinois. But, then in high school, the situation was a little different, because we had a resource room for all disabilities. I was in that, just the resource room, I was usually in there just a part of the day. But I spent most of my time in the regular classroom and the resource room would, you know, they would help with reading and sometimes I'd take tests there and, you know, things like that. Actually, I was in a, I was in a high, a grade school that had a wing for people with different disabilities and I had classes when I was younger with people with physical disabilities. It was a small class. It was almost like a one room school. It had first through fourth grade. In fifth grade, I was in just a regular classroom and I was when I came back.

Kimberly Parsley 17:39 Well, did you experience bullying when you were in school?

Rick 17:43 Not a lot. There were a couple of kids, but I experienced it more, I think the worst cases of bullying that I experienced were when I was, lived, you know, in the place, in the student housing that we were in when my dad was getting his doctorate. There was one girl who could be very nice, but she also had a way of sometimes tying my shoes together. I didn't know how to tie my shoes at that point. I learned, I did eventually learn, but. Then, there was, but, you know, I really. And there was one, there was one, there were a few instances, but not very often. I really didn't have trouble. The trouble, I felt like, I did feel, though, that there were times I didn't fit in and there were times I was lonely. I think that was more of a problem than bullying.

Kimberly Parsley 18:36 Yeah. I, I, I can relate to that, also. I felt, you know.

Rick 18:38 Eventually, you know, the thing that happened, you know, and then I got into high school and the thing that really helped me was getting into activities like speech and chorus and a couple of different clubs.

Kimberly Parsley 18:57 So, I always ask this to everyone. What, will ask it to the parents, at least. So, Rick, what would you say to someone who's a parent who's maybe deaf-blind and is considering becoming a parent? What would you say to them?

Rick 19:15 I would say it can be done. You know, think in advance how you're going to do things, how you're going to divide things up, as far as what you do. And my, you know, part of my situation is my hearing. Although it was not good then, it was a lot better than it became, you know. I had a gradual hearing loss. Like, when I was in high, right in high school, the hearing loss was not an issue, but it became more of an issue later. I would say, you know, persevere! Work out what needs to be done and, you know, make sure you can work those things out. You can still give your child a lot of support. You're more likely now than you used to be able to get your kids’ books, like schoolbooks, in a format you can use, so you can maybe follow along and help, and that's always something that I thought was a problem.

Kimberly Parsley 20:15 Yeah. Okay. I get that. And Marissa, you are in luck! Because, instead of me asking you your question, I am going to get my daughter, Sayer, and she is going to ask you I don't know what. And, so, I apologize in advance. So, she’s got her questions. So, Michael’s gone to get her now and she will be here in just a second. I'm gonna hand over the headphones, so I'm not going to be able to hear your response. So, like I said. All right, here we go. Give her just a second to switch headphones. And this is going to be Sayer. Again, my apologies if it's required.

Sayer Hello.

Marissa 20:56 Hi, love!

Sayer How are you today?

Marissa I'm wonderful! Happy Friday.

Sayer 21:05 Happy Friday to you, too! What's it like to be a child of a blind parent? In your case?

Marissa 21:10 I think it's pretty cool! I feel like my dad is a genius. My mom is equally of a superwoman. And it just, not a whole lot of people like my folks out there. When I was your age, at least. I think it's really cool!

Sayer 21:34 I have one more question. What's your favorite type of cookie? [laughter]

Marissa 21:39 Oh, no! You’ve hit that one! Oh my gosh! That's a tough one, because I absolutely love chocolate. So, I'm gonna go with the double chocolate chip cookie.

Sayer 21:53 Okey dokey. Are you scared about losing your sight?

Marissa 21:57 I am. Believe it or not, I am. But I know that it, it can happen and I'll be okay. It's gonna be difficult, it’s gonna be sometimes sad and sometimes it's gonna make me mad and it's gonna make me scared. But I have an infinite amount of resources, I have family, I have friends. I'll figure out how to be okay, if I lose my vision.

Sayer 22:29 I have one more thing I'd like to tell you. Have a good day and weekend!

Marissa 22:34 Awww! Have a lovely weekend!

Sayer You, too!

Kimberly Parsley 22:38 Hey, Marissa, thank you.

Marissa 22:40 We put her on the spot. I think she was nervous.

Kimberly Parsley 22:43 She was a little nervous. And I had told her to be thinking. I told her, she must be hungry to ask about a cookie. She must be hungry.

Marissa 22:50 I kind of gathered that! [laughter] My parents taught me to enjoy life. So, eat the dessert first. [laughter]

Kimberly Parsley 22:58 Yes, we have…

Rick 23:00 We were always, I was always told growing up, ‘Don't. Eat dessert last, don't spoil your supper.’ But, now I know that to eat dessert first does not spoil my supper and, of course, now on my, since Carol has been diagnosed with diabetes, we both and I need to lose weight. We're not eating nearly the desserts we used to.

Kimberly Parsley 23:25 We have a rule in our house and that is ‘Do not let say or get hungry!’ [laughter] I hear that! [laughter]

Kimberly Parsley 23:33 We get what we call the Sayer monster. So, alright guys, is there anything else that you want to tell any of our listeners?

Marissa 23:42 I guess this would be kind of a broad spectrum thing. But, something that I have had to accept every time and it's taken me years to figure this out. If nothing goes right, go left! Whatever left is, go left! [laughter]

Kimberly Parsley 24:04 That is that is a good life lesson right there.

Rick 24:06 That's called having resilience. And, then, and Marissa, you have had a lot of setbacks over the years. I'm not gonna go into all that, but we both know what they have been. And now you’re, you did go left. You have a job you love and probably, in some ways, it's the best time of your life, I think.

Marissa It's a dream come true.

Rick You know, I think also finding your own space, finding somebody you love and, you know, all those things also formed you. And we recognize that you make your own decisions, we’re not going to try to pressure you to make decisions. Yet you're not going to make this, we know you're not going to make decisions just because we made the other one. So, it’s, it’s where it should be.

Kimberly Parsley 24:57 Yeah, rebellion is important. So important. [laughter]

Marissa 25:03 I mean, everybody, everybody goes through that rebellious stage in some way, shape or form, just like every parent has a hard time, you know, letting go of the decision making. [laughter] I think it's a win- win overall.

Kimberly Parsley 25:22 Well, good! I'm so glad! I'm so glad. Thank you all so much. I appreciate it! And, as Sayer said, “Have a Good Friday and good weekend!”

Marissa 25:30 Thanks for having me.

Kimberly Parsley 25:31 Bye. Thank you both very much! Thanks to Chris Onken for our theme music. Thanks to Steve Moore for providing our transcription. Comes from the Center for Accessible living in Louisville, Kentucky and you can find links to buy the book A Celebration of Family: Stories of Parents with Disabilities in our show notes. Thanks, everyone!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Gerry Gordon Brown marched with Dr. Martin Luther King Jr. in Frankfort in 1964. She continues to push for justice for all.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley:

Hello And Welcome Gerry Gordon-Brown To Demand And Disrupt, A Disability Podcast.  Welcome, Gerry.  

Gerry Gordon-Brown:

Okay.  My Life History.  Okay.  You're Going To Give Me An Opportunity To Say All Of The Things About Me. 

Kimberly Parsley:

I Am.  Welcome, Gerry.  Tell Me All About Gerry Gordon-Brown.  

Gerry Gordon-Brown:

Okay.  I Was Born -- My Name Is Gerry Gordon-Brown.  Previously, Though, It's Geraldine Yvonne Gordon-Brown, Okay, But I Had To Cut Some Of That Out.  It's Gerry Gordon-Brown.  Okay?  It Was Too Much.  Okay.  I Was Born 82 years Ago In Pulaski, Tennessee, A Small Town Located 71 Miles South Of Nashville.  As Far As My Parents Knew, My Disability, Which Is Bilateral Profound Hearing Loss, Is Caused By My Parents' Rh Blood Factor.  One Is Rh Positive And The Other One Is Rh Negative.  Okay?  And Then Also It's Due To Some Hereditary Factors On My Grandparents' Side, On My Father's Side.  At That Time, In 1940, When I Was Born, The City's Economy Was Basically Farming, And Our City Of Pulaski Was Known For Show Horse, Walking -- Tennessee Walking Horses.  And Of Course, We Learned A Great Deal About Farming, Because Everything That We Had On The Table Came From Farming To Bring It To The Table For Our Food.  Also, My Mother Made All Of Our Clothes, More Or Less.  Mom And Dad Did Not Attend College, But They Believed In Education.  It Was Very Important, Instilled In Us.  And By The Way, I Was The Oldest Of Four Children, And So I Had Three Girls And One Boy.  My Two Sisters And I, We Did Attend College.  I Went To Kentucky State College, But It's Now A University, And My -- And My Sisters Went To Tennessee State University In Nashville.  Okay?  

Throughout My Growing-Up Years, I Was Encouraged To Accept My Disability And To Speak Up On My Behalf.  I Was The Product Of A Very Protective Environment, Both At Home And At College.  My College Advisors Were Very Supportive, And Also My Roommates Were Very Supportive.  In Later Years My Mother Became Very Ill With Tuberculosis While We Were Living In Tennessee.  That Is The Reason That We Were Relocated In Louisville In 1946.  Mom Came Here To Be Treated And She Stayed In Waverly Hills Sanatorium Three And A Half Long Years.  My Sisters And I Were In Foster Care Here In Louisville.  Mother Wanted Us To Be Near Her.  Fortunately, We Had A Wonderful Foster Mother.  We Kept In Contact With Her Until We Were Adults And She Passed Away.  I Successfully Completed Elementary School, Junior High, In My Day, And It Was Known As Middle School, High -- And Also High School In Louisville, Kentucky, And Four Years Of College Without Hearing Aids.  At That Time I Had A Great Deal Of Residual Hearing, And There Was No Hearing Aid Market -- On The Market To Fit My Hearing Loss.  After Graduation From Central High School In Louisville, Kentucky, I Became A Client Of The Bureau Of Vocational Rehabilitation.  That's The Name That It Was Known At That Time.  But Now It Is The Department Of Vocational Rehabilitation.  I Received A Bachelor's Degree From Kentucky State, A Master's Degree From Webster University, And I Successfully Completed A Graduate Level Of Peer Mentoring, Professional Studies Certification Program From Gallaudet In Washington, D.C.  This Program Allowed Me To Do Advocacy On Behalf Of Hearing Impaired, The Deaf, The Deaf-Blind Who Sought Services And Adaptive Devices To Make Them Have A Better Quality Of Life.  Thus I Had The Pleasure Of Assisting Many Consumers Who Are Hearing Impaired And To Some Degree Visually Impaired.  I Have Been Married And Divorced, And After The Birth Of My Daughter, Carla, I Started Wearing One Aid In The Left Ear.  And Then Later On My Hearing Decreased And I Now Wear Two Digital, High-Powered Aids Which Are Very Helpful In My Communication With Family, Friends, Consumers, And Also My Board, Board Of Directors Participation, And Also My Overall Travel And Participation In Daily Living Activities.  In July Of This Year, I Plan To Travel To Canada To A Deaf-Blind. 

Kimberly Parsley:

Wow. 

Gerry Gordon-Brown:

Yeah.  A Deaf And Hard Of Hearing Convention.  I Have Worked In The Human Service Field In Three States: Ohio, Indiana, And, Of Course, Kentucky.  It Has Been My Pleasure To Advocate For Consumers With All Kinds Of Disabilities Who Are Clients Of Vocational Rehabilitation.  On July 31st, 2015, I Retired From Full-Time Employment With The Commonwealth Of Kentucky As -- 

Kimberly Parsley:

Congratulations. 

Gerry Gordon-Brown:

Yeah.  As Director Of The Kentucky Client Assistance Program.  Throughout My Many Years Of Employment, I Have Received Many Awards.  To Name A Few, The Arthur Campbell, Jr. Advocacy Award In 2011.  The Charles Mcdowell Education And Advocacy Award In 2007.  And In 2007, I Was Inducted Into The Kentucky Civil Rights Hall Of Fame. 

Kimberly Parsley:

Wow.  

Gerry Gordon-Brown:

Okay?  In 2000 I Received The University Of Louisville Disability Awareness Award, Which Is The Bill Cox Lifetime Achievement Award.

On A Personal Level, Like I Stated, I Have One Daughter.  I Have A Wonderful Daughter, Carla Elizabeth, Who Is Married To A Wonderful Son-In-Law, Kevin, And I Have Three Grandsons Whom I Refer To As My Three Wise Men, Jaren, Jalen, And Javon.  I Attend Church And I Go To The Kentucky Center For The Arts, And Then When I Have A Little Free Time, I Work And Play With My Wonderful Great-Grandchildren.  I Have Four.  I Have Four, One Boy And Three Girls, From The Ages Of Seven To Seven Months.  And That's Basically It On My Life Story.  

Kimberly Parsley:

Wow.  Wow.  That Is A Lot.  

Gerry Gordon-Brown:

Is That Okay?  

Kimberly Parsley:

That Is Wonderful.  Yes.  That Is A Lot.  So Tell Me About Your Experience Marching With Dr. king In The Sixties.  

Gerry Gordon-Brown:

Okay.  With Pleasure.  I Marched With Dr. king On March 5th, 1964, In Frankfort, To The Capitol To Lobby For The State Public Accommodation Bill.  Dr. king Led 10,000 Black And White Kentuckians To The Capitol.  Marching With Dr. king Was Jackie Robinson, The First Black Major League Baseball Player.  A Famous Activist By The Name Of Reverend Wyatt Tee Walker And Lots And Lots Of Students From Kentucky State College, Me Being One Of Them.  Having Marched With Dr. king Was One Of The Major Highlights Of My Senior Year At Kentucky State College, Which, Of Course, Is Now A University.  I Graduated With A Bachelor Of Arts Degree In Sociology And A Minor In History In May 1964.  Dr. king Came To Kentucky Frequently Because His Brother, Reverend A.D. King Was Pastor Of Zion Baptist Church In Louisville.  I Also Attended Churches -- The Church When He Came To Town To Speak.  He Was Very Personable And Friendly At All Times, Both At The March And In Louisville.  Legislatures In The General Assembly Refused To Pass The 1964 House Bill Number 197, Which Was Desegregating Public Accommodations.  Nevertheless, In 1966 The Governor Of Kentucky Signed The Civil Rights Act Into Law.  There Were Two Anniversary Celebrations Of The March On Frankfort, First, 40th Anniversary Commemoration Of The March Of Frankfort Was Held March 3rd, 2004, Then On March 5th, 2014, We Celebrated The 50th Anniversary Of The Civil Rights March On Frankfort.  It Was A Wonderful Occasion.  My Family Came From Louisville And All My Staff And Her Family Marched With Me.  There Was A Very Large Crowd Of Supporters That Came To Frankfort From Around The Kentucky Commonwealth.  That's Basically It Unless You Have Questions, Kim. 

Kimberly Parsley:

Wow.  Well, I -- How Close Were You Able To Get To Dr. king During That March?  I Don't Think A Lot Of People Know About That March At Frankfort, Do They?  

Gerry Gordon-Brown:

Oh, Okay.  Okay.  Let Me See.  Say What You Said, The Last Part, Because I Was -- It Was Being Blocked With The Recording Part.  

Kimberly Parsley:

I Have To Remember.  I Said I Don't Think A Lot Of People Know About That March On -- At Frankfort, Do They, Here In Kentucky?  

Gerry Gordon-Brown:

Okay.  They Probably Don't.  Probably The Only Time That They -- Like They Knew About It Was When We Had The Anniversary Celebration, Okay, The One In 2004, And Then The Big One For The 50th, It Was A Wealth Of People, A Lot Of People In Frankfort.  

Kimberly Parsley:

Really?  

Gerry Gordon-Brown:

In 2014. 

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

And Various Speakers.  John J. Johnson And Others, Many Others Who Spoke At That Particular Time.  

Kimberly Parsley:

Uh-Huh.  Uh-Huh.  So I'm Thinking Of Questions To Ask Here About That.  So How Did You Feel?  This Is A Question I Didn't Send You.  So In '64, That Bill Didn't Pass. 

Gerry Gordon-Brown:

No, It Did Not Pass, You Know, Which Was A Disappointment For Us, But We Had Done The Best We Could As Far As Drumming Up Support For It.  The Support Was There, But The Legislature, They Refused To.  They Refused To Pass It.  Fortunately, The Governor At That Time, Ned Breathitt, He Did Sign Into Law The Civil Rights Act Law In 1966.  Nothing Was Really Done Until 1966.  

Kimberly Parsley:

Uh-Huh.  Uh-Huh.  But It's Always Important To Get Those -- That Groundswell Of Support, Isn't It?  

Gerry Gordon-Brown:

Oh, That's Really To Bring Notice And Then, Of Course, There Was A Lot Of Written Up In The Newspapers Around The -- Around The State, You Know, Lexington, Louisville, So Forth And So On. 

Kimberly Parsley:

Uh-Huh.  Uh-Huh.  Yeah.  

Gerry Gordon-Brown:

So I Have Learned Over Time That The Newspaper Reporters Really Can Put Emphasis On Certain Topics That's Going On In The Community.  

Kimberly Parsley:

Huh.  Uh-Huh.  And Do You Think That Method Is Effective Still Today?  

Gerry Gordon-Brown:

Oh, Yeah, I Think It's Effective.  I Think -- I Think It's Very Effective, Because Otherwise, Kim, I Don't Think You Would Know.  

Kimberly Parsley:

Right. 

Gerry Gordon-Brown:

You Know, It Would Be Kept -- Kept So Quiet, But By Being In The Newspapers -- And Of Course I Realize We're In The Tech Age, Technology, But Everybody Doesn't Have A Computer, You Know. 

Kimberly Parsley:

Right.  Right.  

Gerry Gordon-Brown:

And Then, Of Course, The Television Too.  So Yes, But I Really Don't Want To Leave The Newspaper Out, Because Personally, I Really -- We Subscribe, I Subscribe To The Louisville Paper. 

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

I Like Paper.  I Like The Hard Copy In My Hand.  

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

So I Can Read It.  

Kimberly Parsley:

Uh-Huh.  One Of The Things That We're Trying To Do Is Get Legislation That Would Make It Illegal To Take Away The Children Of A Parent Just Because The Parent Is Disabled, Because That Is Legal Right Now To Remove -- Remove A Child From The Home Simply Because The Parent Is Disabled, And That's Something We're Working On Overturning Right Now.  So Maybe We Need To Try To Get Some Newspaper Coverage.  

Gerry Gordon-Brown:

Oh, Yeah, I Think -- I Think The Newspaper Coverage Would Add More Weight To Our Particular Situation, And That's What I Was Going To Bring Up Too, Toward The End, About Our Book And Also The Fact That We Have This Ugly Law In Kentucky That Can Take Away Your Child Or Children Because You Have A Disability. 

Kimberly Parsley:

Yes.  

Gerry Gordon-Brown:

Which Is An Insult.  It's An Insult. 

Kimberly Parsley:

It Is.  It Is An Insult.  And You Know What, I Think I Will -- We Will Arrange To Have This -- The Link To This Podcast Sent To Legislators, And, You Know, They Don't Want To Be Lumped In With The Legislators In 1964, Right, Who Refused To Pass Legislation Desegregating Kentucky. 

Gerry Gordon-Brown:

Oh, Yes.  We Can't Do Too Much.  And We're -- It's -- Our Time Has Come, And The Time Is Now.  

Kimberly Parsley:

Excellent.  That's Awesome.  You're So Right.  So The Next Thing, We're Talking About Disability.  Tell Me How You Think The Disability Rights Movement Intersects, How Does Disability Rights Intersect With The Civil Rights Movement Of The Sixties?  

Gerry Gordon-Brown:

Okay.  Okay.  Disability Intersects With The Civil Rights Movement In The 1960s Or Even Now, I Think, Because We As Persons With Disabilities At That Time Were Fighting For Our Rights And Equality On All Areas, Even As Minorities.  Even Though I'm African American, We Were Fighting -- We're Fighting The Same Battle, Basically, Because We Were Being Discriminated Against.  When I Say "We," I Mean We As Minorities And We As Persons With Disabilities Were Being Discriminated Against In Such Areas As Housing, Employment, And Transportation.  I Just Named A Few, But There Are Other Areas, Of Course, Of Which We Were Being Discriminated Against.  For Me Personally, I Was Discriminated Against By The Local Hospital, Kim.  

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

I Passed Out -- I Passed Out In The Park During The Month Of June, Which Was Very, Very Hot, And Had To Be Transported To The Emergency Room.  In The Process Of Being Transferred To The Emergency Room And Going Through The Application Process, After It Was All Done, I Was Trying To Get My Hospital Bill Paid, But I Had To Have My Records, And, Kim, When I Got My Records, Believe It Or Not, The Nurse Had Put In The Record That I Was Mentally Retarded.  

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

Then I Tried To Do Advocacy On My Own Part With The Records Department Of That Local Hospital, But It Didn't Work, And I Ended Up Having To Get The Support Of A Lawyer.  So With The Support Of The Lawyer, I Got That Information Taken Out Of My File At That Hospital.  But Yes, We're Still Being Discriminated Against.  

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

When We -- When I Was Working Here In Louisville At The Center For Accessible Living, On A Weekend, The Derby Weekend, Back Early On, We Worked With Adapt.  Do You Remember Adapt?  

Kimberly Parsley:

Uh-Huh.  Yes.  Uh-Huh.  

Gerry Gordon-Brown:

Okay.  Adapt Representatives Came To Louisville On The Derby Weekend, And We Blocked The Buses. 

Kimberly Parsley:

Oh. 

Gerry Gordon-Brown:

Okay?  

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

As A Result Of Blocking The Buses, Tarc Decided To Hire A Person To Work With Us And To Make The Tarc Buses Accessible So -- 

Kimberly Parsley:

Do You Know What That Stands For?  

Gerry Gordon-Brown:

That Was A Really Extraordinary Event. 

Kimberly Parsley:

That Is.  Can You Tell People, What Is It, Tarc?  What Does That Stand For?  

Gerry Gordon-Brown:

Transit Authority Of River City.  

Kimberly Parsley:

Yeah.  Okay.  Okay.  Yes.  That's What That Is.  

Gerry Gordon-Brown:

Yes.  And Tarc Is For The -- Well, It Was The Bus -- Bus Service, The Local City Bus Service Here In Louisville. 

Kimberly Parsley:

And What Was The Effect That Had?  

Gerry Gordon-Brown:

Well, They Were Embarrassed, First Of All, Because We Had People In Wheelchairs That Was Parked In Front Of The Bus.  They Were Embarrassed, So With That Embarrassment, It Opened Up Services For Us.  So We Eventually Had Services, They Made Them Accessible To Us, They Were -- We Were Able To Ride The Buses.

Kimberly Parsley:

Excellent.  That's Awesome. 

Gerry Gordon-Brown:

And Then Later On, You Know, We Had The Ada, Americans With Disabilities Act, But, Of Course, That Didn't Pass Until 1990, But Anyway, It Still Opened The Door, I Feel, For More Protection For Us As Persons With Disabilities.

Kimberly Parsley:

So Martin Luther King Day Celebrations Are Coming Up On Monday, January 16th, This Year.  So Tell Me, How Do You Feel On That Day?  What Do You Do To Celebrate And How Do You Feel On That Day?  

Gerry Gordon-Brown:

Okay.  In The Past, Kimberly, Here In Louisville, They Usually Have A Parade, A Parade On Broadway, And We -- And In The Past I Have Participated In That And Drove Our Car In That Parade And Took The Children With Me.  And Then Also We Would End Up At A Local Church For Speeches And Also Various Persons Receiving Awards.  I -- The Man That Was In Charge Of That Has Passed Away, So I Don't Know, I Assume It's Still Going On, But Even If That Is Not Going On, There Are Various Ceremonies, So To Speak, Around The City That Take Place In Memory Of Martin Luther King.  

Kimberly Parsley:

Okay.  Is There Anything Else You Want To Talk About About Dr. king Or About Activism, Anything At All?  

Gerry Gordon-Brown:

Yes.  Yes.  I Wanted To Add Just A Few More Things.  Number One Was Our Book.  Okay?  

Kimberly Parsley:

Okay.  

Gerry Gordon-Brown:

Our Book, A Celebration Of Families, Stories Of Parents With Disabilities, Edited By Dave Matheis.  

Kimberly Parsley:

Yes.  Uh-Huh.  

Gerry Gordon-Brown:

I Just Wanted To Raise That, Because You And I, Among Others, We Did A Great Job With The Book, And Then Also With outstanding Help From Dave Roberts -- From Dave Matheis. 

Kimberly Parsley:

Uh-Huh.  Yes.  

Gerry Gordon-Brown:

So Definitely Our Book. 

Kimberly Parsley:

Right. 

Gerry Gordon-Brown:

I Wanted To Say Thank You For Inviting Me To Speak About Martin Luther King. 

Kimberly Parsley:

Oh, It's Been Wonderful.  Thank You For Making The Time For Me.  I Appreciate It.  And We're Going To Get This Episode Out As Soon As We Can.  Thank You, Gerry Gordon-Brown, For Joining Us.  I Appreciate It So Much. 

Gerry Gordon-Brown:

You Are Most Welcome.

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Keith Hosey and I talk about the hard things; the genetic implications of having children, disability pride, and multiple disabilities. We end on a high note. Keith is working to bring a chapter of ADAPT, a Disability activism organization, to Kentucky.

If you are interested in helping get the ADAPT chapter off the ground, email [email protected]. Put ADAPT in the subject line, and I will forward it on to Keith.

To learn more about ADAPT, visit adapt.org.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 0:05 Welcome to Demand and Disrupt, the disability podcast. We are here to learn how to advocate for ourselves and each other. This podcast is supported with funds from the Advocado Press, based in Louisville, Kentucky.

Hello! Welcome! Thanks, everyone, for tuning into Demand and Disrupt, the disability Podcast. Today, we've got a treat for you. We're going to be talking to Keith Hosey, a longtime disability advocate. That's what he's been doing his whole life – his whole working career is advocating for the rights of people with disabilities. We're going to talk about a lot of things. We're going to talk about parenting, like we do (that's usually how we start) and, and some genetic stuff about Keith's disability and how that impacted it. And, then, we're going to talk about mental health. And, since we're right here in the thick of the holidays, I think it's a good time just to remind everyone to, you know, take care of yourself. It's tough out there. You know, it's true what they say, “Put your own oxygen mask on first.” You can't take care of other people if you're not taking care of yourself. So, do that for yourself. It's, a, it's not surrender, it's not wait, it's the grown-up, mature thing to do: take care of yourself first. Take care of other people, but, you know, look after yourself. When you've done too much, say, “That's it!” The perfect gift does not exist, the perfect food… Well, I don't know, I made a really awesome banana pudding… But, you know what I am saying – banana pudding is probably not the best way to take care of yourself, but, you know, “Feed your soul,” that's what I say. So, here we go with Keith Hosey.

Okay, welcome, Keith Hosey! Tell me about yourself, Keith.

Keith Hosey 1:47 Hi, thanks for having me! I am a 40-something white male. I go by he, him. I have short, brown, buzzed hair and a short beard, which is also mostly brown now (though there's a little bit of gray creeping in). And I am a dad and a husband and I am a scuba diver (though I haven't been in a while). And I have some disabilities and I was in this book that you might know about. So, I was asked to come on and talk to you, Kimberly.

Kimberly Parsley 2:32 Yes! Yes. And I'm glad you did, finally, because I reached out to you, like, second. And it's taken us this long: all these many, low, these many months!

Keith Hosey 2:43 I am so sorry. My schedule was very busy for a little while. Thankfully, it has died down. But, in the interim, I've had the pleasure to listen to your earlier episodes and I love the podcast so far. I might be iffy on this episode.

Kimberly Parsley 2:58 No. Thank you for saying that. We're having a good time, were getting… It's wonderful to me to get to tell the stories, especially of parents, because I just don't think there was a lot out there before the book, which is (I always need to mention the title), “A Celebration of Family: Stories of Parents with Disabilities.” And it was put together and edited by our favorite, Dave Mattheis, [whom] we do love dearly. So…

Keith Hosey Yes.

Kimberly Parsley Now, Keith, one of the things I wanted to talk to you about, because you and I share some genetic disadvantages which kind of had to come into play when we were deciding whether or not to have kids. Do you want to talk about that a little bit?

Keith Hosey 3:42 Sure, absolutely. So, I have, I was born with severe bilateral club feet – that, that’s the diagnosis. It is a genetic disability and there is a chance to pass it on. It was passed to me from both sides of the family – one uncle, one of my dad's brothers, also has club feet and one of my mom's uncles had club feed. So, it combined into me in like, like The Wonder Twins to create my situation. So, when we were talking about having a child, thinking about having a child, that was certainly one of the things that went into our conversation, is, “Will this child also be born with club feet? We don't know.” So, so, luckily for me, this wasn't too long ago and there were already lots of groups on the internet and even some groups on Facebook at the time. And I found community! I found other people with my condition, my specific condition – club feet – and they were all different ages and with all different experiences and severities. And I talked to some of them a little bit about it and I, and from them, I got some good information. And, eventually, my wife and I decided, you know, that shouldn't even be a factor in our decision of having a child, because, of course, we'd love our child with a disability. You know, it wouldn't impact any quality of life that we could see. So, it almost became a moot point at a certain time.

Kimberly Parsley 5:41 Yeah. A lot the same. I mean, the chapter, my chapter in the book is called, “Everything in Life Is a Roll of Dice.” So, I think that tells you how, the way we went with that, too. So, in, in retrospect, you know, and when you're going through, though, making that decision, it is gut wrenching, isn't it?

Keith Hosey 6:02 It is, because you can't have that discussion without deep introspection onto your own life and the struggles you may have, I mean, I can, I'll speak for myself, and the struggles that I had growing up. I had somewhere around a baker's dozen of surgeries from when I was six weeks old until the last one, which I was a sophomore in high school. So, you know, and the thought of having a child have to go through something like that was, was more in my decision making than the thought of having a child with some type of disability. And, so, some of what I did was do some research into current treatments of club feet, because, hey, it was 30 years later and surely someone's figured something out. And there are new treatments and different treatments and, you know, I think that, again, it just, eventually, it just kind of made sense, that, “Why would, why are we even worrying about this?”

Kimberly Parsley 7:25 Uhuh, yeah. Exactly. It’s a… You know, I want to, I always say when we talk about this is I, my choice does not have any bearing on anyone else's choice. And their choice shouldn't have any bearing on mine. I always say that, choice being the operative word there. Um, and I want to kind of pivot and talk about disability pride, because you said something. I did not, I did not realize that disability pride is a hot topic.

Keith Hosey It’s a great topic!

Kimberly Parsley 8:03 Well. It's uh, it’s, it’s, you know: people got issues! People have views, though, about this, both ways.

Keith Hosey I'm sure.

Kimberly Parsley So, it's like you said you didn't want your child to go through – and let us say you did have a beautiful, healthy daughter, right?

Keith Hosey Yeah. Yes, that is correct. So, spoiler alert: it all turned out fine in the end. (laughter)

Keith Hosey Yeah, absolutely.

Kimberly Parsley Yeah. Either way, it would have turned out fine in the end, but Keith has a beautiful daughter. Kayla, is that her name?

Keith Hosey 8:41 Her name is Kayla and she fools a lot of people into thinking that she is sweet. (laughter) But, she is definitely a nine year old girl.

Kimberly Parsley 8:51 Oh, they're tricky at that age! They are tricky.

Keith Hosey 8:54 I love her very much, though.

Kimberly Parsley 8:57 So much! So much love with, for your, your kids. But, now, you said you wouldn't want your child to go through that. And same here. My daughter, my daughter has had three surgeries on her eyes already, so… I wouldn't trade her for nothing at all. But, you know, a lot of people who I talk to who are disabled and I asked them about disability pride and they say that no, they would not consider themselves, that is not a label that they would wear. Disability is not a label that they wear proudly. And I think the thinking is, because if they could choose, they would choose not to be disabled.

Keith Hosey Right.

Kimberly Parsley Um, so can you talk a little bit about, because you're pretty open about disability pride. Can you talk a little bit about that?

Keith Hosey 10:01 Absolutely! First of all, you're giving away all of our inside secrets to non-disabled. (chuckle) They're not supposed to know we would all choose to not be disabled, come on! (chuckle) No. And, in all seriousness, I think that's actually a true statement, because, if you ask me tomorrow, I would want… I live with chronic pain, I would want that to go away. My migraines, I have migraines, I have depression, I have anxiety. Heck, yeah! If I could snap my fingers and make that go away, I would. But, that doesn't mean that I'm not proud to be a member of the disability community. And that's where I think the hang up there is, is I'm not necessarily proud of my disabilities, because they bring me challenges and sometimes pain and, and lots of times as you know, financial costs.

Kimberly Parsley Amen to that. Yeah.

Keith Hosey It’s not cheap to be disabled, right?

Kimberly Parsley 11:09 So, so not cheap. So not cheap.

Keith Hosey 11:12 Yeah. But, but it's not, it’s not so much that, but it's a sense of community and being proud of the community that we, we could have and do have around our disability identity. This subculture that exists not only just generally around disability, but you even have subcultures within our subculture: you have deaf culture; you have, you know, blind culture is a little, you know; it's different things. You have the Autistic community; they have, you know, their own cultural things going on and it’s all just, I think, really cool. And, and the people that miss it, because they don't see us all as people, they’re missing really beautiful stuff, you know. Movies and, I mean, the first time I ever saw a deaf storyteller, it was amazing to see them work, you know.

We have just amazing stories within our community, too. We have a rich history. Unfortunately, a lot of that history is fighting for our rights and fighting for space and fighting for equity and inclusion. But, even within those fights, you find community and pride. You look at, you know, the sit in, in San Francisco, in 1977 and you have all different types of people with all different types of disabilities, united, right to get pressure on the government. And, you know, I just, that's when I talk about disability pride, or when I, and I can only speak for myself, but, but, from what I've seen, there are many other people out there. You know, Chicago has a Disability Pride Parade every year. So, you know, it's not just, like, Keith Hosey’s idea. I look for many other, many, many other disabled advocates, but it's this idea that we have community, and we should see the bright spots, the bright spots in our community.

Kimberly Parsley 13:53 Yeah. As soon as, I mean, the first… I think I've told you before, I had a kid 14 years ago – had my son 14 years ago and, honestly, I just never got any more information til, like, I don't know, I last week or something. It's just, I was so focused on, you know, the parenting that I just missed a lot. But, when I get back into, like, reading about, you know, disability goals, disability culture and where were we and things, that was the first time I heard the phrase, “Disability Pride.” And, I have to tell you, it absolutely stirred something in me, that, “Damn! This is a thing now,” you know. And it was amazing and I was, like, “Yeah, I am proud to be in this community,” because I met you, I met Karissa who we've had on the show, so many, so many awesome people I know, so many people's histories. And it's not, it's not the overcoming thing, you know. I mean, it's not the inspiration of, ‘Oh, it's this group of people who've done so much in such terrible circumstances.’

Keith Hosey Right.

Kimberly Parsley It's not that. It's just this group of people. I've had to, as you can tell, I have had to search my own thoughts about this and, so, I think, ‘Okay, what is the opposite of pride?’ And the opposite of pride, as best I can tell, is shame. And shame is what they want us to have.

Keith Hosey Absolutely.

Kimberly Parsley And I'm not, and I'm not doing that. And I'm not, I’m not going to pers, I'm not going, I'm not, I don't want my daughter to see that. So, if the opposite of pride is shame, then, heck yeah, I'm proud! So, anyway, so, that was, that went some places, didn't it? (chuckle)

Keith Hosey 15:45 I think that was awesome. You know, and you touched on something, too. As a, you know, as a mother with a disability raising a child with a disability, you know, how you raise that child makes all the difference. Sondra, who is one of the chapters in our book…

Kimberly Parsley 16:07 Yes. I talked to Sondra.

Keith Hosey 16:08 She is an amazing individual: not because she's blind and she did all the things she did; she's just, like, a really cool person!

Kimberly Parsley Absolutely.

Keith Hosey And I've gotten to learn her story a little more, I've done a couple panels with her and then I had her do a spot for me at work. And her, her parents were blind and her dad worked his whole life and his expectation was that his blind daughter would work when she was old enough to work and… George W. Bush coined it – something about the slow prejudice of low expectations. And part of disability pride is saying that we can be part of community – we can be 100% part of the community – if we have the right supports and if the barriers are brought down. You know?

Kimberly Parsley 17:06 Yeah, yep. And, you know, we’ll, we’ll teach people how to do community; we’ll teach compassion; we'll teach you how, we'll teach other people how to, you know, how to bring people in fully to community. So, yeah. And, you know, you mentioned having chronic migraines and, and things and it seems to me like, sometimes, that may be, I mean, it's extra disability, it's other stuff that that you have, that sometimes that might be more disabling to you than the genetic issue.

Keith Hosey 17:43 Sometimes it is. It's like a fight between them, sometimes. You know, ‘Who wants to control my life the most?’ So, yeah, no, it, it is. I, you know, I do have chronic pain as a result of my last surgery that I had on one of my feet and I do deal with that every day, of course. But, there are days where, if I get a “migraine,” “he” gets front of the class, like, you know; “he's” in the limo and everyone else is on the curb, because that's all I can deal with. So, that, yeah, when I, when I get, when I get one of those migraines, I'm out for hours, if not the whole day, and everything else is secondary at that point. It doesn’t matter if I'm in a, you know, if I'm having a depressive episode, it doesn't matter if my foot hurts, the migraine is front seat.

Kimberly Parsley 18:48 And, so, how does that impact your parenting?

Keith Hosey 18:52 You know, it, it has impacted my parenting, because I, there have been times where I just could not function other than acute, taking care of the acuteness of my condition at that point. And I think Kayla adapted to it pretty well. You know, little kids scream and, and are loud and make lots of noise and, at a very young age, you know, she learned – I actually didn't develop my mental health conditions until she was actually born; she was maybe two or three. But, even at five or six, she knew, ‘Daddy's head hurts; I need to be quiet, because it really hurts.’ And there were times where, you know, Daddy didn't go to the zoo with them, because he had a migraine that day or something. So, you know, it's impacted it in that way. Thankfully, I am now actually on a new migraine medicine that I can take when I get one and it does a good job of knocking it down enough that I can function. But…

Kimberly Parsley That is great!

Keith Hosey Yeah. There was a time where that wasn't the case.

Kimberly Parsley 20:16 I have, I have just, you know, heard of people having migraines. They sound truly, truly, just dreadful. Dreadful! Just debilitating, right? I mean…

Keith Hosey 20:26 And they're all so different, you know, because, for example, I mean, mine: I, I feel it throughout my body; I actually, I know a migraine is coming on, because limbs will go numb, sometimes. Or I'll get a tingling kind of, like, the Spidey sense from Spider Man: I'll get a tingling on the back of my neck and I’ll know that, you know, it’s, I have a migraine coming on?

Kimberly Parsley 21:01 Yeah, yeah. You know, you said that little kids make lots of noise. I, it does not stop. (laughter) My 14 year old son is noisy. Just noisy! All the things he does are noisy! His gadgets are noisy. Lots and lots of noise.

Keith Hosey 21:22 It's just a different noise, right?

Kimberly Parsley 21:26 It's just a different noise, but it's not any lower. Yeah, exactly. So, so good luck! (chuckle)

Keith Hosey Thank you.

Kimberly Parsley So, last thing I want to talk about is I do want to find out, tell me all about ADAPT and explain that for our listeners who might not know what ADAPT is, because super cool, ADAPT is.

Keith Hosey 21:45 Yeah. So, ADAPT, speaking of disability history…

Kimberly Parsley 21:53 It stands for something new now, right? Something different.

Keith Hosey 21:56 You're right. Yes. So, I am searching for the letters. So, ADAPT: they used to be all about public transportation; that’s what the PT was in ADAPT. And, in the 80s – late 70s, 80s – ADAPT organized and they're all about direct action and they… So, throughout, across the country – they started in Colorado and then throughout the country – they started blocking buses to get accessible buses. This was before the ADA. They, they would, some of them would chain themselves to buses or they would just park their wheelchairs right all around the bus so that the bus could not move. We, we had that happen in Louisville – Arthur Campbell was one of those people in Louisville that, that blocked the bus.

Kimberly Parsley 23:01 Huge shout out to Arthur Campbell! He wants to be on the podcast, so we are working on it.

Keith Hosey 23:05 One of my favorites.

Kimberly Parsley I'm, absolutely.

Keith Hosey So, so, now, now they are more focused on attendant care and access to attendant care. But, it’s a national organization that has local chapters that are about advocacy and that are kind of like our radical wing: they're not afraid to show up and block doorways and demand answers. And, so, I, I have a dream to bring ADAPT to Kentucky; we don't have a chapter here, in Kentucky.

Kimberly Parsley 23:49 Wow! So, so how close are you? Because, I'm in for that. Count me in, I want to help with that.

Keith Hosey 23:56 If any of our listeners have about $10,000.00…

Kimberly Parsley 24:00 So, we’re going that way are we? (laughter)

Keith Hosey 24:03 Well, I will tell you, this has just been something that I've worked on since, I don't know if you remember 2017? They called it “The Summer of ADAPT” and, essentially, ADAPT saved the ACA that summer. They were the, the… Congress was working to repeal a number of parts and basically just gut it and ADAPT showed up. They, they showed up in DC and they showed up at their local, local places. And, I just remember, you know, I knew of ADAPT and I had heard stories of the old days of, you know, Arthur blocking the bus on Chestnut St. But, then to see these people protesting in DC right outside of Mitch McConnell's office, being carried out of their wheelchairs for our, all of our health care. And, and I had a friend, I have a friend who is involved with ADAPT in Alaska and, you know, they, Alaska was instrumental with Senator Murkowski and, and getting those couple of people to decide not to get rid of the ACA and ADAPT essentially save the ACA that summer. And, then I thought, you know, ‘We should have had ADAPT here in Kentucky; we should have been at our senators’ and our representatives’ offices fighting for this.’

Kimberly Parsley 25:48 Yeah. And the ACA, of course, is the Affordable Care Act.

Keith Hosey 25:56 Yes. I’m sorry, the… And, then, and, so, so, ever since then, I've just been talking to people about it, you know, “Wouldn’t it be cool if this happened?” What didn't, why don't, why don't why don't we do this?” You know, there's, there's problems, you know, and I want every tool in the belt. You know, you don't always need the blunt edge, but, you know, some, you want every option out there when you're advocating. And, so we have some interested individuals and we've had a couple of zoom meetings over the last couple of months. We've reached out, we’ve spoken to some individuals with National ADAPT and, essentially, you know, we're working towards it. So, hopefully, one day, you know, and when I say, “Bring ADAPT to write Kentucky,” that's not outside people: that's, that's us being trained in starting a chapter and doing direct actions.

Kimberly Parsley 27:02 So, if anybody wants to help out or wants to find out more, they can email us here at demandanddisrupt@gmail,com and I'll forward that on to you. Sound good?

Keith Hosey That sounds fantastic.

Kimberly Parsley And if any wants to, anyone wants to send checks, that's, that's wonderful. Send money, right? Also great?

Keith Hosey 27:23 Absolutely.

Kimberly Parsley 27:25 All right. Well, Keith, that is all I have to talk about. It's been great! You're always wonderful to talk to. I, best wishes, I hope we get adapt in Kentucky and start making some differences there. So, thanks for joining me.

Keith Hosey Thanks for having me, Kimberly.

Kimberly Parsley Thanks, Keith, for joining us and for looking into getting a chapter of ADAPT started here in Kentucky. And, for you listening, Keith wanted me to mention that the $10,000 he mentioned would be nice, but that is in no way required by adapt to start a chapter. It's just that, you know, organization takes money and mailings take money, you know. Things take money to get something off the ground and we want to get ADAPT off the ground, we want it to be successful! So, if you're interested, there's a link to ADAPT in the show notes where you can check out what they’ve done and see more about them. And, also, you know, send me an email at [email protected] and I will forward that on to Keith. Thanks, everyone. Bye bye. Thanks to Chris Duncan, for our theme music. Thanks to Steve Moore for our, providing our transcription. Support comes from the Center for Accessible Living in Louisville, Kentucky. And you can find links to buy the book, “A Celebration of Family: Stories of Parents with Disabilities” in our show. Thanks, everyone!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Traditional is not a word Carissa Johnson would ever use to describe her upbringing, but one thing that upbringing taught her was that love can be found anywhere. Her disability had nothing to do with her choice to adopt, but it does shape how she teaches her seven year old son, Will, that all people everywhere are worthy of love. I talk with Carissa about family, fairness, and the social model of disability.

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.

How to register to vote or change your registration, go to vote.org. The deadline for voter registration in Kentucky is October 11, 2022. You can register in person, online, or by mail.

Vote.org

Then Kimberly tells a story about how she almost died (not really) by poisoned yogurt and we hear part two of Kimberly‘s interview with Cass Irvin.

After you listen to the episode, go register to vote. If you’re already registered, go make your voting plan. Where will you vote? How will you vote, in person or by mail? Do you need to line up transportation? How about your identification card, is it up-to-date? Make your plan today!

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 0:05

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 Advocado Press, based in Louisville, Ky. 

Kimberly Parsley 0:21

Hello, disruptors.  We're doing a special episode of Demand and Disrupt all about voter registration. In Ky., our voter registration deadline is October 11.  So, we’re going to be pushing this episode out really, really soon.  And, so, what you're going to do is go to vote.gov. That's VOTE dot GOV. And it's going to bring up a box for you to pick your state or territory. If you live in Ky., pick Ky.  And, then, there'll be a, you'll have to tap on something that says, ‘Find out how to register in your area,’ or something like that.  And, then, once you click that button, that's going to take you to Ky.'s website. If you chose Ky., it’ll take you to Ky.'s website to either pick to register, to vote by mail on the website or [pick] information about how to register in person.  So, everything you need, you can start out at vote – that’s your starting place.  And, if you're in Ky., like I am, then, your deadline to register to vote is October 11. And I know that's coming up real soon. So that's October the 11th. Don't forget to do that – very important! 

Always vote!  You'll hear that many, many times on this podcast.  But, since those of you haven't registered before, if you did that, I'm going to show my appreciation for that by telling you a funny story in a segment that I call, “Stupid Stuff That Happens to Blind People.”  Actually, this is not necessarily a segment.  But, hey, you never know – it could be.  So, Saturday, my family and I got up and Michael usually handles most things food related in the house and that's just because I'm lazy.  I may have convinced him that I couldn't do it. I may have, I may not have, but I may have.  Anyway, so, he was doing that and he got me – this is what I get, see, for dishonesty. He, I had what we call Yogurt with Crunchies, which is Greek yogurt with, like, whatever – not even a little bit good for you granola that we have in the house.  So, that’s what I had.  

And, so, I sat down with my Yogurt with Crunchies and it did not smell the way honey-vanilla yogurt should smell; it smelled different.  And, so, I said, “Did you check the date on this?”  And he said, “Yes, I did.“ And I said, “Are you sure?”  And he said, “Yes!”  Now, my husband has many excellent qualities; many, many good things about my husband, but an awareness of time is not one of those. So, he got the, the container out of the garbage, because he had thrown it away.  And it said, “Yeah, I checked; it says September 27.”  “Uh huh. Right [I said]. And what's today?”  “Um…” he said (and today, as it turned out, was October 1; notably later than September 22nd or September 27). So, now, I have been known to eat things that were a day or two out of date, you know, whatever, but not coupled with bad smell. You know? If it smells bad and it's out of date, then that just seals the deal right there. You don't eat that.  Right. So, I did not eat it and, then, proceeded to almost be convinced that my husband was trying to poison me. I mean, it's true: not everyone would blame him if he did.  I get that, I understand: I'm not an easy, easy person to live with.  However, really?  Poison by yogurt? It seems excessive. So, what I wonder is do other, other blind people deal with this, too?  It's like someone else's sense of sight tops all the other awesome senses that we as blind people have. Like, I can smell things, I can hear things… It doesn't matter. Someone else's sense of sight tops that and I am therefore less, because I do not have that superpower, aka SIGHT. 

So, I'm wondering if anyone else has this kind of thing happen?  If you want to send it in, just put in the subject line,  ‘The Segment Stuff That Blind People Put Up With or ‘Stuff Deaf People Put Up With’ or, it really, just anything.  So, what you want to do is you want to go on your phone.  Tell me if this this kind of stuff happens to y'all – I'm really interested! So, you want to go to your, on your phone to your voice memos app or equivalent, whatever. And you want to just record whatever. If you've had a similar story, a similar thing happens to you, you want to record that and you want to send an email to demand and [email protected] and then just attach that file. Just send me, send me that story as a file attachment: demand and [email protected]. I would love to hear from you. Thanks, y'all!

Kimberly Parsley 5:38

And now here's part two of my recent interview with Cass Ervin. Hello and welcome Cass Ervin. It is wonderful to have you with us.

Cass Irvin 5:48

Thank you glad to be here.

Kimberly Parsley 5:50

I think sometimes we forget that government is not, it’s not, it's not the weather.  Okay?  It's not some magical entity.  It is people and those people work for us. They are to do the will of the people and we are the people every day and we have to, we have to, every day, we have to be making our will known to the people in government.  That is called representative democracy and that is what we have.

Cass Irvin 6:27

That's why we need to register and vote.

Kimberly Parsley 6:30

That’s true, that’s true.  That's why we need to register in and vote.  Cass, what is the state of voting for disabled people right now?  What does it look like?

Cass Irvin 6:41

Is that one of those open-ended questions which I've decided I hate?  (chuckles) Okay.  Again, I'm not so sure I can speak exactly of what's happening across the country; because, David Allgood could help you with that more; because, I'm, again, not keeping up on what everybody else is doing. I know that when I see people complain on any of the news broadcasts or whatever, I think, ‘Are you, but, are you voting? Are you complaining without doing anything about it?’ It's so easy to complain, but it's not easy to get out and do something on your own to make change. But if you don't do it, as the slogan goes, who's gonna do it? 

Voting has always been important to me, because I realized, disabled or not, it was something I could do. And I'm not gonna say it's been easy, because I've been voting since I was 18.  No.  Yes, 18.  And, um, at different times in my life, it was hard and many times in my life, like the last 30 years or more, it’s been easier. But, I vote absentee and that's a whole, another discussion with the way politics have been the last couple of years.  I never worried about my absentee ballot.

Kimberly Parsley 8:20

Do you think it's important for disabled people to continue to be able to vote via absentee ballot?

Cass Irvin 8:27

Oh, sure!  You know, if they're qualified, yes, definitely! I mean, I think anybody can. I mean, I don't know if in Ky. we've been able to vote and just put, put it in a box, you know, a voting box?  I don't even remember, because, you know, I vote absentee and I don't pay attention to how other people have to vote. I know you can early vote, but anything that makes it easier to vote… I mean, come on!  If you're going to cheat, you're going to do something big!  You’re not gonna have a couple of people mark a ballot wrong and…

Kimberly Parsley 9:02

Right. 

Cass Irvin 9:03

I mean, and that's why I like to vote at the polls, which I've mostly done, because I'm there with other people and they can look and go, ‘Oh, well she can, she's coming to vote,’ or, ‘I should feel bad about making excuses about coming to vote when she comes to vote.’ And, you know, I just liked the process. And you know, it's not been easy, like I said. I got several big adventures that have happened while trying to vote, including having to go down a flight of steps and a wheelchair. 

Kimberly Parsley

Oh, my gosh!

Cass Irvin

But you know, it’s, it’s our chance to say what we feel and then if something didn't go our way we can say well, at least we did our duty and we've been out we voted

Kimberly Parsley 9:54

To me, I think voting is so fundamental to who I am.  I mean, we, my, my precinct – my voting precinct where I live – they know me, they know my family.  We go vote at the fire department and there's somebody there who ago led my kids play on the firetruck if it's there and my kids see us voting.  And those, those women – and it is women; it is. So, when they talk about, you know, not really, verbal attacks or whatever on poll workers, that's largely women.  That is largely women and older women and they're volunteering their time.  And they’ve been doing it for years and it, it bothers me that we aren't showing them the proper respect that we should. And I mean, they, they… 

I know that I am very likely the only person who uses the talking voting booth.  I know that I am. But I, I would bet money that they make sure it's there for me, because they, they know I'm coming. They know, if it's election day, they're gonna see the Parsleys and, so, they make sure that I have what I need to vote in privacy, independently. And it, it hurts, hurts me in my feelings, as my daughter says, that people are questioning those people's veracity and their patriotism; that, those people who I feel sure have, have fought for me.  And, I mean, I know now there's talk of going back to paper ballots.  Well, I'm blind; I don't, I don't know how I'm going to do that. I don't believe necessarily that it's more secure than what I've been doing all along.  So…

Cass Irvin 11:54

The first time I voted, my aunt was a precinct worker. It was a couple, maybe six blocks, from my house and somebody pushed me in my wheelchair all the way down there. And my aunt was a precinct worker and, because I could not reach – this was a booth with levers in it. And once you got the booth, you pulled the curtain and, of course, me and my wheelchair, that kind of stuck out. And, because I couldn't really reach the buttons, a poll worker who was Democratic and a poll worker who was Republican had to go in the booth with me and, you know, they were supposed to help me cast my ballot.  And my aunt pushed the key or what it, lever forward straight democratic. And I said, “Wait!” And she said, “What?”  (this is my aunt) and I said, “I wasn't gonna vote that way.”  And she said, “You weren’t gonna vote Democratic?!”  And I said, “Well, it was just one person I wanted to vote for who wasn't.” And she said, “Well, who?”  And I told her, I told her and she said, “Oh.  Well, you just flip this one up.”  And she flipped one up which was, supposedly meant I voted for the other person.  And it was, like, ‘What!’  You know, ‘This is my vote; this isn’t your vote!’  That was really fun.

Kimberly Parsley 13:17

It is!  Yes, yes.  Wow, wow.  My first, my first foray into advocacy was, uh… You know, after the ADA was signed, many of those old polling places that were inaccessible were moved into courthouses or even some in larger churches, schools; you know, places that were accessible.  Voting booths were… And there was actually a, a movement, so much as you can call anything political in Butler County, Ky., a movement.  But, there was a very local movement to stop this, because it was, they said, ‘government overreach,’ that ‘we [the politicians] would not be able to go and do our handshaking and politicking as normal,’ which meant doing it the same way they’d always done it in places… I know the place that my mom voted at the time. I think I wasn't even ready to cast my first vote.  [correction] That was the election for me to cast my first vote.  It was, like, in this, this was an, a place barely bigger than, like, outhouse. I mean, it was tiny! It was a tiny, tiny place!  Exactly, with the voting machines like you talked about; it was one of those with steps up to it: no way a wheelchair could get into it. Goodness knows they'd never thought about a blind person coming in to vote at all. But this person leading this movement wanted to make sure that that's the way it stayed.  And, so, my first act of resistance was to write an article to put in the paper about why that violated my civil rights.  And, I mean, obviously, I won and I've never looked back. So, but I feel like, I feel like people like you showed us how to do it. You showed us how to organize, you showed us how to keep our heads, you showed us how to take the small steps.  So, tell me what you think those of us doing the work now: demanding change and disrupting the systems.  What can we do in the future? What do we need to do?

Cass Irvin 15:32

Hmmm… This might sound strange, but think about working for politicians? Think about trying to educate them. Think about trying to show up where they are and get to tho, know them, because if they believe in your issues, they can do as much for you as a bunch of us marching on Washington can do.  Well, I know that's hard to say, but… I mean, you do one of two things: you either get the people who make decisions on your side or you work to get those people to learn what your focus is, so they'll make decisions for you. I mean, disabled people, if… Well, it, every time I start to say something that I think what's contrary, contrary to that, because, you know, when you're in this business, you work very hard and people keep trying to tell you things you can't do.  That’s why it's hard for me to tell somebody else what they need to do, because… 

I have a friend and, I'll tell you, for the last 30 years, she showed up and then one year, she decided she had a voice!  And the reason she decided she had a voice was because we were talking on the phone and I asked her to talk to me about the problems with our transit authority. And she did and I recorded it and, then, I transcribed that recording and I gave it to her.  And I said, “This is what you said, isn't it?”  And she said, “Yes.”  And I said, “Well, just say this to Tarc.”  I mean, people sometimes have the words, it's just they need help to get it done or they control pass just need to be around other people to support what they're doing. Did I answer your question?

Kimberly Parsley 17:40

Yes. Yes, you did. Yes, you did. It's not an answer I wanted.  I wanted there to be something easier.  (laughter)  But, yeah, that makes that makes perfect sense, tho.

Cass Irvin 17:50

Let me tell you something else. Let me tell you something else. When you get a win, even if it's just a little win, it makes you feel so empowered, so strong, so capable. And the only example I have of that is, you know, I've been around for a long time, I used to talk to politicians all the time, whenever there was a public hearing. And I went to a public hearing for, a Ky. delegation was at a local neighborhood museum just wanting to hear from the people about, because they were, you know, Frankfort, they were trying to decide what their constituents needed. So, you know, we all got up and had a chance to speak. And I had my papers on my hands, because I usually write down what I want to say. And, so, when it was my turn to speak, I said, “You have to excuse me,” I said, “I'm very nervous.”  I mean, I'm shaking my papers, because I'm very nervous. And one of the senators, Ky. State Senators, sitting up, you know, on the desk or whatever you call it, you know, waiting to hear from us, said, “Cass Irvin, you're a liar.”  (chuckles) Scared me to death! And it was David Karam and he said, “I have never heard you nervous! I've seen you speak many times, never heard you nervous!” You know, I mean, it made me immediately more tense, but then relaxed at the same time, because, you know, I knew they knew I was talking, you know, knew what I was talking about.  And it was, it's all personal experience: you just take what happens to you, personally, and you try to frame it in a way they can understand.

Kimberly Parsley 19:59

Yeah.  Take, make it personal.  Make it personal and the more the people who control the levers of power know you, then, maybe that, it has an impact on them, on each vote they take.

Cass Irvin 20:13

And David Karam went on to run, like, Ky. tourist agency downtown.  So, any, I'm sure he's known accessibility ever since we've done all this.  It’s, it’s what I do.  It’s what, you know, it's important work.

Kimberly Parsley 20:36

It is.  It is!  And I personally thank you for doing the import, the important work.

Cass Irvin 20:41

It's very rewarding. Personally.

Kimberly Parsley 20:46

Thanks, Cass Irvin, for joining us and for your lifetime of service to people with disabilities. Thanks to Chris Onken for our theme music.  Thanks to Steve Moore for our, providing our transcription.  Support comes from the Center for Accessible Living, in Louisville, Ky.  And you can find links to buy the book, A Celebration of Family: Stories of Parents with Disabilities, in our show notes.  Thanks everyone!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Sandra Williams refused to let anything stand between her and motherhood. Starting out as a foster mom, she is now the grandmother of three little girls. She reflects on her own mothering journey, as well as that of her mother and grandmother.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley

0:04 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 base in global content. Sandra Williams is a retired instructor, mother of two, and grandmother to three girls. She enjoys reading, writing, singing, cooking, and traveling, not necessarily in that order. Thanks for joining us, Sandra.

Sandra Williams

0:32 Thank you so very much for having me.

Kimberly Parsley

0:35 So in your chapter in the book, you start out talking about your parents now. Your your father was blind, is that correct? That is correct. Yes. And that was from a rare genetic disorder. Is that right?

Sandra Williams

0:54 It? Yes. It's quite rare. It's called Peters anomaly. And of course, back then, in 1935. When he was born, no one. No one knew that. Really. Then he was just blind. And he was the only one of his siblings and in the family tree to that point that was blind and he was born totally blind. Hmm. Well,

Kimberly Parsley

1:22 I know I know a thing or two about genetic disorders having one myself they can, when that when they crop up like that you've really got nothing to fall back home. No way. And gosh, man was in 1990. I can't imagine that being 35. That would be terrifying. And your and your mother was not born blind? Is that correct?

Sandra Williams

1:43 Well, she was born blind, but she didn't have to. It was a it was a tragedy, I guess at birth.

Kimberly Parsley

1:56 Tell me about that. Yeah, tell me about that

Sandra Williams

1:58 Well, my, my grandparents lived in the western part of the state, Bowling Green to be exact. And, um, my mom 

Kimberly Parsley

2:11 Bowling Green being where I am right now. So my apologies for my city.

Sandra Williams

2:18 But, um, they lived there. And I guess this was 1941. And when it came time for my grandmother to deliver, my grandfather took her to the local hospital here. And they were denied entrance to the hospital because of their race. He was sent back home and had to use a a midwife. And when the midwife delivered my mother, she apparently used the forceps to tightly and put them around my mother's head and squeezed there by damaging the optic nerve. And my grandparents found this out when my mother was a little bit older, and they apparently brought her to Louisville, and had her eyes examined because to look at my mother's eyes, they look perfectly normal. It was that the optic nerve was damaged when her head was held too tightly.

Kimberly Parsley

3:40 Wow, that that is tragic. And so you were born, where? Where were you born?

Sandra Williams

3:49 I was born in a small town in Illinois, Lincoln, Illinois. And my entrance into the world was I don't know if it was remarkable or not maybe because you know, both of my parents were blind. So even though it was Oh my I'm gonna say the year even though 1964 The right thing was still very much a thing. So that being the case, because my mother was afforded the opportunity to go to the local hospital, however, I'm not certain they wanted it known that my mom was at the local hospital. So my birth certificate says that I am. I'm white. Yeah, as the sister next in line to me, so I'm not sure that He wanted to documented, you know, that people who weren't White were afforded the opportunity to have a baby in that hospital. Wow. And,

Kimberly Parsley

5:14 you know, that's not that long ago, that is a tragically short time ago for that to still be happening. So the, the shadow of racism is is long. And I think I don't think we've seen, I don't think we've gotten out of that, that terrible shadow yet. So, and you and your sisters, did you inherit the genetic disorder from your father? Is that right?

Sandra Williams

5:41 We did. Um, I learned later I started trying to do research on this disease when I was in college the first time. And back then there was not a whole lot. But it was at that time, when I first started doing some research, it was known that it was a condition that took place in the first trimester of a woman's pregnancy, when the eye is developing. When the eye develops, there are it's developed in stages. And there are parts of the eye that are supposed to be separate from one another, the lens, the cornea, the iris, they're all separate entities, but in this genetic defect, they don't separate and the eyes can be fused together. Now, when that happens that I don't know if that's what causes the glaucoma, but the fetus can have in utero glaucoma. Now, my eye was separated, more so than my sister. So when I was born, my eyes looked like I'm so distinct people are distinct Iris, the white part. They were distinct and remained so for quite a lot of my life, they are not so now. But when my sisters were born, their eyes were all over a blue color, meaning that they had had the glaucoma in neutral, and that their separate parts of the eyes were not so separate. So it meant when they were born, they saw less than I did.

Kimberly Parsley

7:46 And you you recite, so at what age did you become sort of, I guess, legally blind or blind to the point that life as normal was going to have to change?

Sandra Williams

8:00 Well, I don't know if I ever had normal. I think my normal was so much different than what others might consider to be normal. I grew up or even as a young child, I realized I might be different. When I felt three, three and a half. Up until the time I thought that all daddies had guide dogs and that their guide dogs helped them get to work. I thought that all mommies read bedtime stories with their fingers. I didn't know I had a rude awakening when some kids across the street that I snuck out of the house to get to and try to play with said they want me because I was blind and your mommy's blind and your daddy's blind and we don't want you and and so it was about three and a half and I and I ran home crying asking my mom, you know, am I blind? What's blind? So yes, she explained about seeing at that time, my vision I remember not long ago reading some old papers from when I was in elementary school. And at that point on my vision, I wasn't legally blind. My vision said I was 20 over 113 I started having severe headaches and white outs where everything would just go like a white bog and then couldn't see anything. I was probably 15 and a half or 16. We had moved to Kentucky by then. And I was taken to the Lions Eye Institute by some school personnel to figure out what was what might be problem after they figured out I wasn't having a nervous breakdown. I was mental. Now they thought such and went in and found I'm doubt that I had exceedingly high pressures, I mean, a pressure and a person by should be about 1214. Mine was 65. So it was causing pain and I was put on some medication. And at that time, it was supposed to be the end all be all in, you know, helping to treat glaucoma. So I took pills. And I took eyedrops, and, you know, to try to maintain the vision I had as well as to afford me some comfort pressures that high are not comfortable.

Kimberly Parsley

10:42 And you'd later found that one of the adverse effects of one of those drugs was infertility. Is that right?

Sandra Williams

10:51 Yes, that's the only thing my my doctor's could figure because all my pieces and parts were in working order. There should have been nothing to prevent me from conceiving. However, I couldn't. And through a list of any and every medication that I had ever taken, and the finger was pointed at a particular pill that I took to help with the glaucoma. And of course, you know, the glaucoma doctors either didn't know or might have figured, Hey, she's blind, she probably won't have children, I don't know. But there was nothing ever said to me about that medicine might cause an infertility issue.

Kimberly Parsley

11:48 But you are in the book, a celebration of family stories of parents with disabilities. So you did begin your parenting journey. You want to tell us a little about that.

Sandra Williams

12:01 I began my parenting journey when I was really young. I saw on television, a news story about a baby that needed a home and the baby was blind. And it's funny that baby isn't another chapter in the in the book. But I saw that and I was looking at that on television with my mom. And I said one day, you know, I want to do that. But I tried everything in the traditional way I got married. My husband and I talked about having children. We attempted and that didn't work well. Because I I just could not. I couldn't conceive when two doctors did all that temperature taking in everything and and it didn't happen. And at the same time I was going through more stages in this vision loss. And at that time, you know, I had had a cornea transplant and a cryo surgery, which means pretty much a needle is inserted into your eye, and they freeze it to try to get your pressure to go down. So it had some surgeries. I didn't do too well with that. As far as my attitude, I was just sad and angry. I was still in my early 20s My husband didn't do too well with that. Apparently, we didn't do well with it together and he went away. And I had to deal with that. And I was still very, very young. By this time I'm in my middle 20s Well, I tried to do the marriage thing again. This time. The person I was married to wasn't able to have children. But we had agreed before the marriage that we wouldn't adopt. So I was thinking I was gonna you know, live that adoption dream I had. So time went on and on and my vision got worse. I had a couple of more transplants, a couple of more glaucoma surgeries. And we went, we were in Kentucky by this time because when we, my second husband and I moved to Illinois for a while. But we moved back to Kentucky and went decided to go through the state's adopt shun program. So as a powerful we went in and we really were not met with any issues about because he was visually impaired as well. We were not met with any real discrimination on the basis of our vision. We went in there just like every other couple with the hopes of bringing have a child, not necessarily a baby. So we went through the classes. And I guess we finished those sometime in 1995 into five, first of 96. And I don't know, when I got really close to this baby or a little person being in our lives, my husband told me he was going bowling, but he never came back. So that was a little painful. So I, instructor of the class, I said, Well, when I get my life together, because after you go through divorce, and you've been married a while, you know, you build up things, a house, you know, all that. And I lost all that. So I said, When I get my life together, we'll be able to do this as a single parent. I was told that I would. So I said, Okay, so after he left, I spent the next probably three years rebuilding my life. Working, saving, finding a better, a well, a place to live, that wasn't my really nice house, and just just trying to, you know, take the steps, you know, talking to someone and just trying to heal. Or I thought it was a good idea to bring a little person into my life.

Kimberly Parsley

16:35 And when you did you got a son? 16:39 And yes, it did.

Kimberly Parsley

16:43 And he, he had some challenges, is that correct?

Sandra Williams

16:48 My son had some challenges. I when it came time for me to think about this, again, it was 1999. And I called the state and asked, you know, what I needed to do to get back on the list to adopt and everything. And they said, Well, hey, we have a new set of classes. And if you want to take these classes, it's called concurrent planning. And if a child is placed with you, you will have the first opportunity to adopt that child. So you would foster and then you could adopt, would you like to go through the classes? And I said, No, okay, why not? So I went through the class, that was probably for six weeks. And I got out of the class on it was probably January, January, something and of the year 2000. And I didn't think too much about it. And I went through some difficult times, then. My my, I just started a new job working for the city of Louisville. I was actually on the mayor's personal staff. So I just started a new job. My grandmother, my maternal grandmother, passed away, had to deal with a funeral. And a week after she passed away, her sister, one of my great aunts passed away. And then after that, a week after that, a very dear friend passed away. So I was taking funeral leave and everything. And then I get a call from the state. Hi, we have a boy. We think he's blind. And I'm thinking, oh, yeah, give give the blind woman the blind baby. Yeah, I'll take him. And, you know, it was probably gin, February 27 28th, almost the end of February and they called and I said, Okay, what, what do I do? And they said, well, we'll bring him to you. Wow, that's interesting. We'll bring him to you. So, you know, I didn't have anything because they told me this baby was going to be nine months old. And the only thing I had in my house, I had a bassinet, well, nine months old. bassinet, I had a little rattle. I didn't that's all I had. And I thought, Oh, what am I gonna do? And I was friends with a lady who had fostered probably at that time around 300. Babies who all were high risk feeding to everything. She took all sorts of babies so they wouldn't have to go into the local for lack of a better word orphanage and Chinar adopted them. So I called or he said, do nine month old babies eat food. What really need. I was totally panicked. And that was about 10 o'clock at night. She said, let me find someone to watch the kids. She had two or three babies at that time. And she said, I'll be there. So she came over, she took me to Kroger, and we bought baby cereal and baby food. And, you know, so very early in March, I think it was around March 3. I went home from work and was waiting for this baby and a state car pulled in front of my house, knocked on my door and said, Are you Miss Williams? I said, Yes, I am. So here's your baby. And he put this thing into my arms. kind of big. A hefty cinch, sack. And he said, here's this thing to have a nice day. Now this thing he put in my arms was soaking wet. He'd been at court all day, that's the process, they have to do a process and put the baby into care. So there I was standing in my tiny little living room looking down at this human being I could still see some. And it was love at first sight. He had the big eyes and the long lashes. And as I look at this human, I mean that my heart just over flowed with with a motion for this baby. But I knew in that same instance, that there wasn't everything wasn't as it should be. I could feel that the bottom part of him was heavier than the top part of him and no, not because he was soaking wet. But I wasn't sure so I put him on the couch beside me. And I figure nine months old should move around while I'm trying to change this diaper. But he didn't move his legs. And he didn't move anything from his hips down. He would wave around with his head and he didn't make noise. He nine months old, are supposed to COO and gurgle. And I'd worked in a preschool. So I knew about kids. And this one didn't do what kids should do. So I spent that afternoon trying to learn this little human and first thing I did I got a bottle wasn't sure whether you were supposed to heat up a nine month old bottle or not. But I did. And I put it in his mouth. And the lid. Oh, I'm so embarrassed. The lid promptly fell off. So I pretty much almost do now. So I picked him up. And I took him in the kitchen. I didn't have a baby tub because I didn't even know that at this point. And I put them in the sink and I washed them off. I washed me and trust us again. Later my mom came and I'm like here mom, what what do I do with it? And she to notice that he wasn't doing what? What a baby at nine month should do.

Kimberly Parsley

23:17 And what what ended up being was there a diagnosis of of something going on?

Sandra Williams

23:23 When he was about I did foster him for quite a while. But it's about 13 months, I took him to Rolla just because I knew something wasn't right. And I put him in our first steps program. program that works with babies, little people who are not developing as they should. So I put them in first steps and invites visually impaired preschool services. Say he had a severe severe nystagmus meaning that the eyes just bounced around and put enough focus so he was in that. But they recommended that I take him to a neurologist. So I did and you know there's the room in the hospital. If you had anyone in the hospital, you know the room. And after they do the tests they call the family to the room. Well, I was by myself see I did most of this by myself. So I went the room by myself very nervous, sitting across from neurologists and those individuals can be somewhat intimidating, big words. That attitude and he looked at me and he said you know he said there was water on you know in his brainstem. He said it would probably be okay but he said my son would never walk, talk or no Oh, who I was. He also said that no one would fault me. If I just gave him back. And I, I just sat there, you know, the stomach dropping that feeling and, and I said, Where's my baby. And they went and brought him to me. And I picked him up, held him in my arms and walked out of the hospital, got on the bus and went back home. Knowing that I was not giving this baby back, you know, if I were afforded the opportunity to adopt him knowing that I would do as a parent, whatever I needed to do to help him thrive and develop to live the best life he could.

Kimberly Parsley

25:51 That is amazing. What What year was this?

Sandra Williams

25:56 Oh, 2000 

Kimberly Parsley

26:05 And a doctor thought it was okay to completely dismiss a human being or our a woman's feelings about that. That is truly incredible. So let's fast forward until me How is your son now? I know in the book, you say he did walk, and he does know who you are. So tell us about that.

Sandra Williams

26:25 It's just you know, so I have a lot of I was I was fortunate and blessed. I I had a lot of awesome support. So you know, my parents, you know, supported me and absolutely. I ended up naming my son, Sean Michael. That's pretty. They adored Sean Michael. And my sister's a dog on Michael. And, you know, he didn't walk when he should have walked he was about up. And we were in a doctor's office waiting to fit him for another pair of braces. And I had to put him down to dig out my insurance card and I he could stand by me but he would never walk. So I go to him up by my money. And I was digging in my purse for the insurance card. And I reached out to find him and he was gone. So I started sobbing in the orthopedic office because he had walked and that was the first time he walked. And once he was taught, even though he wore braces, you know he wanted to go he wanted to roll balls he wanted to. So he got a basketball in his hand when he was probably three. I started preschool at three, and about eight I put him in Special Olympics, and he did bowling and he's done something with a ball that either rolls or bounces or is pitched ever since that time. He did pretty well in school. I mean, he was on the altered portfolio. So and we won't even talk about my feelings about that. But I felt very diligently he remained on on our role. Three years of middle school, sixth, seventh and eighth. And it was awesome. Sitting in that middle school. Jimmy's graduated from eighth grade. And he was the only student in the EC II program who has maintained grades for honor roll. He was only one of about eight or 10 Kids in the whole school. And that was one of the biggest schools in Jefferson County. So I was I was a little bit proud. He did a lot of things that no one thought he could do one time in school, there was an announcement and it said apparently that if anyone wanted to try out for the African American History Month program, they needed to raise their hand and their teacher would let them know what to do. And my the teacher called me and she said Mrs. Williams Sean raised his hand but the school has never let. I didn't like the word let never let a child from my class participate in the assembly. And I said my child will participate. If he tell him what to do. I'll help him if he gets picked. Yay. If he doesn't, that's okay. But he should be afforded that opportunity. So he had to memorized a portion of Martin Luther King's, I had a dream address. Well, I helped him with that. And we were so tired, you know, and we were going on, created equal and all this thing. And they had been also talking about Abraham Lincoln. I said, Sean, like, but we're gonna do this one more time than mom has to go to bed because we're too tired. Tell me, tell me the address. And he said, Four score and seven and went on to talk about my he had combined the two addresses. It was it was awesome. But the next day, you try it out. The teacher calls me and I guess Shawn was probably fifth grade, fourth or fifth grade. The teacher called me and said, Shawn had memorized more of the I had a dream speech than any of the other kids who are not in an AC e classroom. So when I was sitting out

Sandra Williams

31:19 In the big program, he had all this suit and tie and I was a proud mama. He got the the first his class got to be the first kid that went on this major field trip to Washington DC. Now they were a little scared. So I had to be a chaperone. And they said, Well, you can't just chaperone your own child. You have to have two other boys. I said give them here. And they were not easy kids. They were just little bad boys. We got along just fine.

Kimberly Parsley

31:51 Thanks to Sandra Williams for joining us today. And thanks everyone else for listening by. Thanks to Chris Ankin for our theme music thanks to Steve Moore for our providing our transcription support comes from the Center for Accessible living in Louisville, Kentucky. And you can find links to buy the book a celebration of family stories of parents with disabilities in our show notes thanks everyone.

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

Cass Irvin was disabled by polio when she was nine years old and is a wheelchair user. In her thirties she began serving on local and state boards of disability organizations and has been involved with civil rights and arts organizations most of her life.

She was a co-founder of The Disability Rag magazine and contributing editor from 1984-92. She credits The Rag, a magazine that covers the disability rights movement from a civil rights perspective, for being a fertile and welcoming place where disability writers could grow.

Cass Irvin has been an instructor of Disability History & Culture for the Jefferson County Public Schools. She directed Access to the Arts, Inc., an arts and disability advocacy organization in Louisville, KY. and she was the first disability activist inducted into the Kentucky Civil Rights Hall of Fame.

“I consider myself a teacher and a storyteller,” she says. Her memoir, Home Bound, was published by Temple University Press in 2004 and tells the story of her growth as an activist and writer.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley 0:04

Welcome to Demand and Disrupt disability podcast.  Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Avocado Press, based in Louisville, Kentucky.

Robotic Voice 0:18

Cass Irvin was disabled by polio when she was nine years old and is a wheelchair user.  In her 30s, she began serving on local and state boards of disability organizations. She was a co-founder of The Disability Rag magazine, which covered the disability rights movement from a civil rights perspective. She was an instructor of disability history and culture for the Jefferson County Public Schools. She directed Access to The Arts, Inc., an arts and disability advocacy organization in Louisville, Kentucky. She was the first disability activist inducted into The Kentucky Civil Rights Hall of Fame. Her memoir, Homebound, was published by Temple University Press in 2004.  Cass Irvin is a legend in the disability community.

Kimberly Parsley 0:58

Hello and welcome, Cass Irvin. It is wonderful to have you with us.

Cass Irvin 1:03

Thank you.  Glad to be here.

Kimberly Parsley 1:05

Well, thank you for joining us. I am in awe of your writing and your work. You're a real legend in the disability community in Kentucky and further afield.  So, can you tell me a little bit about how you got involved in disability advocacy?

Cass Irvin 1:21

Probably, I got involved with disability advocacy, because I had a problem with an agency that told me that I was not college material and, thus, they weren't going to pay for my college education. 

Kimberly Parsley

Wow.

Cass Irvin

And, at the time, I thought, “Well, I guess that…” – there was the rehab department, Kentucky Department for Rehab in Kentucky. It sounded okay to me, because, you know, disabled people can't do what everybody else does. But, I ran into a woman who was disabled who told me that, because of certain laws, it was not really, I mean, and because of my disability, they really couldn't reject me and say that I wasn't qualified to go to college, especially since/because my family went to college, my parents put me through college my first year, anyway. So, when I went back to the rehab department and said, “Well, I've been going to college and it seems like I'm handling it okay and you guys need to pay for me.”  Now, believe me, I was scared to death! But I just knew that sometimes when things don't seem right, you should try to complain about them. And they sent somebody from Frankfort to Louisville to interview me to make sure that the person who said I could not qualify for rehab educate – I mean, college education paid through the rehab department – that I should take special tests just to prove that I could.  And I did and I passed.  It was a lot of rigmarole, just because somebody made a bad decision.

Kimberly Parsley 3:06

It's interesting how little things have changed.

Cass Irvin 3:10

No, no, it's not. I mean, I wish it wasn't. But, you know, things: it's just always hard for people to be able to stand up for themselves.  You know, whatever group of people that they are.  When I was little, things weren't accessible and I was pretty much of a shut in. And a lady that we knew who worked for my mom had a friend who had a daughter and they decided that I needed to get out and this young lady could go places with me. And, you know, that would be good for me and good for her and she could earn a little money.  And we get in a yellow cab and, strangely enough, a little kid in a wheelchair could get in the back of a yellow cab, wheelchair and all. And we went downtown to a theater to watch a movie. It was like a big deal. She handled me in the chair by herself. I mean, it was just a manual chair. And, so, we decided we’d go to see a movie and we went. Gee, I don't know how to explain this, because people who don't know what movie theaters were like in the old days downtown.  But, you go up to the window and, you know, ask about the times of the movie and how much.  And we did that.  She could reach the window, because she wasn't in a wheelchair. So, she went to the window and she said, you know, ‘When are the movies playing?  How long?’ because we only had so much time to be downtown. And the guy told her how long the movie was, when it started. And then then she said, ‘How much?’ and he told her how much.  And then she said, ‘I’d like two tickets, please.’ And he said, ‘I can't let you in.‘ And I was really embarrassed, because I thought, “Gosh, I should remember that.”  When I went to theater with Mommy and Daddy, you know, I had to sit in the back of the theater. And, you know, my chair was a fire hazard, so Daddy put me in a seat. But, this young woman couldn't do that.  But, I was, so I was very embarrassed that I didn't think about this. And I said, “I'm sorry, I should have known better.”  And he said, you know, I realized I can't go in and he said, ‘No, it's not you, it's her.’ And he pointed to my friend and I realized, “Oh,” you know, “she's black.”  And it really hurt.  I mean, I've felt real pain, like somebody had said something really bad to me and I have been, I've had that kind of feeling before when someone would say something like that to me as a disabled person.  And I just, you know, I was furious!  I thought, “I'm gonna go home, I'm going to tell my daddy.  My daddy knows people, he's gonna fuss at them. We're gonna write to the newspaper.  We'll,” you know, “We'll go create a stir.”  And, of course, I came home and found out that was going to do me no good, because this was in the 50s and black people couldn't go into movie theaters. She could walk, I couldn't walk; but, I could go in and she couldn’t: that didn't make any sense to me. And, when we feel that for somebody else, it's easier to fight. It made me realize it's easier to fight for other people than to fight for yourself.

Kimberly Parsley 6:35

Well, I think it's maybe cliche for a blind person to quote Helen Keller, but she famously said, “Until all of us are free, none of us are free.”  And, yes, I think that is so, so true. And I think rights for many groups, disabled included, have really been threatened in the last bit. And, I mean, there are probably several reasons for that and, probably, some we don't even understand.  But, what, what is your, what do you think about that? What do you think about the state of civil rights and civil liberties, in general?  But, in disability rights, in particular?  What do you think about the state of disability rights and disability justice right now?

Cass Irvin 7:19

Probably, that's a better question to ask David and people that are in the fray right now, because I'm really not, and I'm not optimistic. But, that maybe is because I don't know what everybody else is doing. And that's kind of been my choice, because in the last couple of years, thanks to COVID. I mean, I'd already kind of semi-retired and didn't run around as much. And then COVID came and, it was like, “Oh, well! I'm not going out now!” I mean, I don't, I'm sorry, I don't want to get sick because somebody else is not being careful. 

Kimberly Parsley

Right. 

Cass Irvin

And so, um, so I really can't comment on what I think it is, except for the fact that, I think in many ways, because of the gay rights movement and, just, many more groups of people are realizing they have rights and they need to fight for them. And I think, because of that, you know, we're more conscious of it. I don't know if that means we're kind of bored with it by now or see too much of it, but I just want things to happen, so people realize they can make change even if it's not a huge change. It's kind of hard to fight the big fights. But, sometimes it's not too hard just to get to a meeting/to show up, so somebody says, ‘Oh, some of those people are here. This issue must be interest to those people, too.’

Kimberly Parsley 8:53

So, you said before we started recording that housing and personal care attendants were the issues that were closest to your heart. Do you want to talk about that?

Cass Irvin 9:05

Well, I've been lucky enough to have never lived in an institution. I went to Warm Springs, Georgia, for rehabilitation and that was semi-institution.  But, because it was a rehab facility, but it was more like a campus. And that's where I learned a lot about disability/existing in disability in the world. 

Kimberly Parsley 9:30

Warm Springs, Georgia: famously where President Roosevelt went.

Cass Irvin 9:36

Yes, right. Yeah. And he's one of my heroes. And, you know, at Warm Springs, you learn how to live in the world with, you know, with a disability.  And it doesn't mean you're segregated.  And you learn how to make things accessible. And I was lucky enough that my parents had a house that was, I mean, once we had ramps it was pretty accessible on the first floor.  I mean, I can just get into every room in the house.  I needed a wheelchair, didn't have to worry about steps when we once we got ramps. At a certain point in my life, I had a motorized wheelchair so I could get around more.  This is my parents’ house, but I live in it. Now that they're no longer here and for many years, I've lived in it with personal assistants. And I think it may be in the something I sent you: the most important thing is home to people. And this is my home. And when Daddy was ill and in an institution – a hospital – he wanted to only go home. And, so, home is really important.  And a nursing home is my other choice. So, you know, I'm not choosing a nursing home as long as I have that choice.

Kimberly Parsley 10:55

Yeah. I, I had a spinal cord operation in 2016 that left me, just, I had to relearn everything. I had to relearn how to walk, how to feed myself, how to groom myself, get dressed, everything. And I still haven't regained the use in my left hand. And I was in a rehabilitation facility for a month and all I could think about everyday was getting home. I had two, two small children at the time. Fortunately, my mother is around and very active with our family.  And, so, she had my kids, she was taking care of the kids. And Michael, my husband, was, he was down at the hospital with me; this is called Stallworth and it's affiliated with Vanderbilt and that, it was awesome and they did so much for me. But, it was not home. And I wanted to be home so much with, with my kids and my family. So, yeah, you're absolutely right. And can you talk a little bit about the struggle that housing is for disability, for disabled people?

Cass Irvin 12:04

You know, housing, if you're a person with a disability and you have money, you can handle it, like anything.  But, if you're a disabled person that doesn't have a lot of money or someone who's older and things get more and more difficult, they want to put you in a nursing home. And there's all kinds of housing between here and a nursing home.  And a nursing home, one of the things disabled people have always exclaimed or shouted is, ‘Nursing homes are way more expensive than a personal home!’ That's just normal. And people should be able to get many services in their own home. And, if they can, then whether you're my dad living on Cumberland Lake in his cottage all by himself or me here in the city, when you need personal assistance, if you can have it in your home, you can still live there. And I think that's the way most people want to go.  Older people, we have so many friends, family whose older relatives have had to all of a sudden move somewhere else.  And they become totally different people, because they're not in their home. And I think that's different. But, I also think, like I said, once you start talking about categories of people, then you try to think of the most convenient, easy way to take care of them and that's why you have nursing homes.

Kimberly Parsley 13:34

Thanks, Cass Irvin, for joining us and for your lifetime of service to people with disabilities. Thanks to Chris Ankin for music.  Thanks to Joe Hodge for technical support. If you have questions or comments, send them to [email protected].  If you liked the podcast, please consider leaving a review. If you really liked the podcast, go ahead and subscribe and tell others about us. Until next time, thanks for listening!

Find out more at https://demand-and-disrupt.pinecast.co

This podcast is powered by Pinecast.

August 14, 2022

I talk to Dr. Kara Ayers, disability parenting researcher and parent of three children. We talk about the decisions around weather and how to begin our families. You can follow Kara’s work on Twitter @DrKaraAyers or her family life on Instagram @KaraAyers.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley  0:00

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 Advocado Press based in Louisville, Kentucky. Dr. Karen Ayers is an associate professor at Cincinnati Children's Hospital Medical Center, and the University of Cincinnati Center for Excellence in Developmental Disabilities. She's a researcher who studies parenting with a disability, and healthcare inequities faced by people with disabilities. She is also the mother of three children, ages 5, 12 and 17. Welcome Dr. Ayers. Here, tell me a little about yourself. You are chapter is it three or four in the book?

Dr. Kara Ayers 0:43

Oh, gosh, I do not remember.

Kimberly Parsley  0:47

You're higher than me. I'm 23.

Dr. Kara Ayers  0:49

I wish we had our editor Dave, he knows us all by heart.

Kimberly Parsley  0:57

Yes. So tell me about yourself, Kara.

Dr. Kara Ayers  1:00

Yeah, well, I had the opportunity to share my most cherished role in the book as Mother, I'm a mom to three kids, a 15 year old, a 12 year old, and a five year old. So back to school season for us right now is busy and exciting. I am a proud disabled woman, also the wife to a disabled man. So we have a lot of disability happening in our house, which to us is a positive part of life and a part of our identity. I have osteogenesis imperfecta (OI), which is a genetic condition that causes my bones to break more easily than most. And it's also a type of dwarfism. So I'm a little person who uses a wheelchair for mobility. And let's see, professionally, I am a psychologist and I research. So I don't see patients in my current role. Instead, I do research and training, teaching about a number of different disability issues, including parenting with a disability. So I have what I consider to be the really good fortune to both, you know, live that role, and then also study it to hopefully help more people understand that we're out there. And we're leading families like everybody else.

Kimberly Parsley  2:13

That's, that's interesting that you mentioned you're a proud, disabled person. Now, I know there's a lot of not really controversy, but a lot of head scratching about the whole disability pride issue. Do you want to speak to that?

Dr. Kara Ayers  2:26

Yeah, I think that everyone kind of comes to their own. And I don't even know if comes to a point because I think it's always evolving. But I think, you know, identity is a personal matter that is often unique for each individual. And I didn't always identify with pride in my disability. I think that when I started to learn that other people did, it was surprising to me, because I had more endorsed  what society tries to teach us about disability is that it's something to overcome. And so I somewhere in my college years had a shift of perspective, largely by being around other people with disabilities to really think about how what if the things that I achieved aren't despite disability, but are influenced by the fact that I have these experiences, and, you know, the lessons that I've learned from not only being who I am, but also I have the good fortune to be connected to our community, which is, I think, really cool.

Kimberly Parsley  3:33

I agree. Absolutely. I you, you came to it so much earlier than I did. You said in college, I very, very recently came to that I'm still struggling with this on my own as I, you know, listen to people talk about disability pride. So I'm but definitely, I am proud of the people I know, you know, in the community, it's a wonderful group of people willing to help and well, just in general, they're just great people.

Dr. Kara Ayers  3:57

Pride means like, we have to love every part of our disability itself. I mean, there are parts of my disability. I'm not sure about yours, but mine, you know, brings pain, literal pains sometimes, it's like, I definitely have to love that. So yeah, I do walk, you know, I try to figure out the balance between I don't want to be all kind of overly saccharine. You know, like, there's nothing challenging about it. But I do feel like you can have pride in the midst of that.

Kimberly Parsley  4:26

Yeah, I do. I do agree. So now tell me about your parenting journey. 

Dr. Kara Ayers  4:32

My husband and I both knew we wanted to be parents. We sought some advice from experts largely from going our disability OI, has conferences where medical experts largely volunteer their time and will kind of answer questions of course, it's all kind of like, informal a bit, you know, but it's a rare opportunity to talk to people who specialize in your rare condition. So we had gotten information that way about, you know, things like, genetically, what would be the odds of us having a healthy pregnancy or what would be the odds of us passing on OI or not. So we felt like we needed to educate ourselves about all of those things, and also have a lot of, you know, heart to heart discussions with each other, and also with ourselves. And kind of, it's a culmination of all that we pursued pregnancy with our first and was fortunate to have a healthy pregnancy with her in 2010. She's my 12 year old. And she was born without OI, which we feel is just exactly who she was meant to be just as we believe we are meant to be who we are. So it's a little tricky, because I think, you know, some people feel as though it was like, she was lucky or were lucky. I feel like luck has kind of strange connotations, because I don't feel like that I was unlucky to be born this way. So, you know, it's just tricky. But so then we knew, yeah, yeah, I’m saying.

Dr. Kara Ayers  6:07

So then, four years later, we knew, or about actually, two, three years later, we knew we wanted to give her a sibling, but we weren't sure if that was another pregnancy for me or not. And so we pursued adoption. And we brought home our son. He was adopted at age seven from China. And he has achondroplasia which is a different form of dwarfism from ours, but one that is a disability that we felt is very similar to ours in many ways. So we were quite familiar with, like medical aspects, as well as social aspects that we could help him in navigating life. And so there, so he's actually, he was older. So my, my 12 year old has the interesting experience of being the only, the younger, and then now the middle, because in 2017, I had my, our youngest, who's five, and who, now unexpectedly, is yelling for me, but it has so yeah, she was, our last and now I definitely know the experience that saying my heart is full, so but overflowing. I had another healthy pregnancy with her. She also, interestingly, was born without OI. So, you know, genetically, our odds were 75%, that our child would have OI, the only piece of that 75% that we were most concerned about is 25% the baby would inherit both of our genetic mutations, which would be double dominance, which there's really not much literature related to survive ability. But if we look at the research related to achondroplasia in which there's more, it's typically really not good outcomes, usually the babies don't survive pregnancy with a double mutation. So that was the outcome that we were most afraid of. And with every pregnancy we would ever have, we would have a one in four chance of that happening. And then on the flip side, we have the one in four chance that they would inherit neither of our mutated genes. And that is what happened two times for us with our girls so that we have two girls without disabilities, and then our son is the oldest and has disability. 

Kimberly Parsley  8:23

Yeah, those genetic questions are, are hard. My disability is genetic, also, and there was a 50% chance and we have two children, one of them has it and one of them does not. And I am just, I am glad that I and that you had the choice to plan in our families as we as we wanted them. As we, as we envisioned our families being and that we, we were able to make the choices that were right for us. I'm very glad that we had that. So and I know in part of your work, you lead the parenting, Project Disabled Parenting Project, Facebook group, did I get that right?

Dr. Kara Ayers  9:06

Yes, exactly.

Kimberly Parsley  9:08

Excellent. So tell me about that. 

Dr. Kara Ayers  9:11

Yeah, so this originated from research I conducted several years ago involving interviews with parents with disabilities and then we realized from that that there was a real want and need for cross disability peer support. And at that time, you know, this was 2010 where Facebook groups we're not quite as active or common as they are now. So we originally were kind of a website and a blog and connecting people I think in the early days we were even a forum but then we moved on to a Facebook group which is technically closed so we try to create a safe place as you can on a Facebook group, meaning that everyone in the group endorses, says yes to the question that they are either a parent with a disability or a person with a disability who is thinking about parenting So it's kind of figuring it out and getting some of that information. And so yeah, there's all kinds of questions that are brought there ranging from, you know, what are the best strollers for a wheelchair user, to a lot of grappling with, you know, the doubt and the stigma that parents with disabilities face. So there's some opportunity to have those discussions with other people who understand too.

Kimberly Parsley  10:26

And it's for people with all kinds of disabilities, is that correct?

Dr. Kara Ayers  10:30

It is, yes, it's cross disability, that's been kind of a feature of my work, I've, I feel that we largely share more in common than have, you know, distinctions by diagnosis. Of course, when we need our medical care, we, you know, we need to go to specialists that know our particular diagnosis. But outside of that, I feel like many of our experiences are more similar than different. 

Kimberly Parsley  10:57

So one thing I want to ask is, tell me, one of the ways in which you have had to demand, the title of this podcast is Demand and Disrupt. So tell me one of the ways in which you've had to demand equality for yourself as a parent or for your children? 

Dr. Kara Ayers

I love that title. 

Kimberly Parsley

Thank you. We brainstormed a long time.

Dr. Kara Ayers  11:20

Yeah, love it. Well, it's perfect for parenting. Do I feel like Oh, my God, demands on yourself and your body and then also the demands that they make of us, you know, those, we're still in that period with my five year old, you know, working on, let's be less demanding when we have our needs. But yeah, I mean, really, in a lot of ways, I think the act of pursuing parenting, both ways that I have, whether it be through biologically through a pregnancy or through adoption, has, in some ways felt at different points, like a demand and disruption. You know, and that I think you have to be confident enough, or at least put on the face of confidence that you have to keep going, even when other people are, you know, are saying like, well, I don't know, have you thought about this? Or have you thought about that? And in recognizing that, at least for me, No, I hadn't thought of everything. But I had done a lot of thinking and, and, you know, especially I think with, in thinking about adoption, where I guess there was a little bit more even playing field in that all parents have to go through a home study process and kind of demonstrate their qualifications as parents, but we had that additional step to kind of demonstrate qualifications as disabled parents, and also doing that with China, the government, and their perceptions of disability. So there is like this demand and disruption. And I think that it's, you know, it's even hard for me to say like, Oh, was that demanding? Because I'm, I don't know, culturally, I don't think I am a very demanding person, if you meet me and know me, but definitely disruptive. And I guess I, I go about my demands in different ways. You know, I make my case. And I know that the end result is what's most important. And that's, that was definitely true for all three of my, my kids. So yeah,

Kimberly Parsley  13:29

I think having children any, in any, any way, is an act of love and an act of hope. And I feel like that is an act of resistance right now, just to bring that love and hope into the world. So did you Did you face any barriers because of the disabilities in terms of adopting a child from China?

Dr. Kara Ayers  13:50

We were relatively fortunate and that I think not. I mean, now, this is a situation where I will say, you know, luck may come in, because I don't think that I don't think that it's like I prepared myself well enough that I just averted all the questions. Although I, I did try to do like a ton of research and ask questions. And I had a lot of friends who one parent of the couple had a disability. And so I tried to garner information about okay, what questions did you face so that, and I knew we were going to have kind of double that issue, and our agency was not aware of another couple where both parents were in wheelchairs that China had approved for adoption. But what we did try to do was to really make the case that we understood his disability really well, because we were like him in many ways. And, and I think that worked out to our favor. So I mean, our largest barriers were probably in traveling to China. And you know, we took my in-laws with us, and because we knew that we could face, you know, accessibility barriers like we'd never seen before. And we would still have to do whatever it was to make sure we, we, we got all the paperwork done all across China to get him adopted. So we knew we couldn't be like, well, we can't, you know, at one point, there was a building that we needed to sign papers on the fifth floor, and there was no elevator. And you know, whereas in the United States, we could kind of, say, you have to bring it down to us, or I don't know, we felt like we had, the minute you leave US soil as a disabled person, I definitely feel as though I leave a lot behind. 

Kimberly Parsley 15:18

Really. 

Dr. Kara Ayers 15:20

And it's not perfect. Obviously, the ADA is not what I wish it was, but having nothing like that in a foreign country, the few times that I've traveled internationally, it's made me very nervous.

Kimberly Parsley  15:53

I've never tried. I've never traveled out of the country, but it Yeah, it would. It would make me nervous. I hate traveling. I told my husband, I don't want to go any further than the mailbox. That's as far as I'm going.

Dr. Kara Ayers  16:05

I've kind of gotten that way with COVID. Like I yeah, I definitely don't, as much as I used to.

Kimberly Parsley  16:13

Exactly, exactly. So wonderful. Are there any differences in terms of just parenting with your particular disability from the biological standpoint versus the adoption? I have a friend who adopted and she said, adoption is easy, because you haven't just given birth of the child.

Dr. Kara Ayers  16:34

Yeah. Yeah, that was nice. We did. It was funny, because we were really hit by jet lag when we brought him home. But he has always just been just a force of energy that we were like, how does he not have jet lag? Because we were so tired, but he was like springing up, you know, at the crack of dawn. And, and at that time, when we brought him home, we had his sister was four. So we had a four and seven year old and they were like, you know, finally together and just two little balls of energy. But yeah, it was definitely better than having to recover from my disability, I had to have a C section and be planned and so it was also Yeah, so it, it was better in that sense. Yeah, I think in some ways, though, with adoption, brings it still to our, you know, still brings a lot of mysteries. And some of those are, you know, positive. And some of those are really hard. And so I think that part is, is one that that a lot of people don't necessarily think about at least, that's been our experience. Definitely, you know, both a beautiful and a heartbreaking experience. You know, I think it's always there's just so much loss wrapped up in, in our gains, and, and his gains as well. But, yeah, I just think it, but again, in similar ways that I'm just so fortunate to have connections to the disability community, I'm grateful, you know, that he opened the doors that I have connections to China, I never would have thought that when I was a kid growing up in Kentucky. So yes, that's pretty, pretty cool. I actually, you know, before I knew that pregnancy was possible for me, I always thought that adoption would be the only route to parenthood for me. But even after I, you know, had a healthy pregnancy, I really never viewed adoption as a path, you know, because, because pregnancy wasn't one like I didn't view it as a kind of second best option. So I still very much wanted to look into that. And thankfully, it worked out for us, you know, the world changes so, so rapidly that a few years after we adopted Eli, China pretty radically changed their rules, and I'm not sure that we would be approved to adopt again, I'm not sure we would get through like the initial stages. There's some wording there that says that if you have any impairments to any of your limbs, which we have impairments to all of them. So it's hard.

Kimberly Parsley  19:08

Yeah. What prompted that? What prompted that change? Do you know or

Dr. Kara Ayers  19:11

There's, you know, there's like landmines and political stuff with adoption in international countries, and there had been some issues of disruptions, meaning that United States couples or parents would adopt a child and then disrupt once they got back home. And, and China was pretty unhappy about that. So that's what I've heard. I don't know. So they kind of tried to make more stringent rules. They no longer allowed families to adopt two children at once. So there were there were several other rules. It wasn't just the disability kind of factor, but it does hurt my heart because when other young people come to me who have OI and want to know about our adoption journey, I wish I could feel more confident to tell them you know, that they could do this too. You know, it's so hard you can't predict China's system. 

Kimberly Parsley  20:06

You can’t know the vagaries of geopolitics, right. You can never be sure, but maybe they'll maybe they'll change it back, you know? 

Dr. Kara Ayers  20:12

I hope so. And you got to try you don't you really don't know until you go down the road a bit.

Kimberly Parsley  20:18

I can see how it would be heartbreaking. Yeah. To have your heart set on doing that and then realize, because of this, I can't do it. Well, Kara, thank you so much. I appreciate you talking with me. Yeah. And congratulations on your wonderful family. 

Dr. Kara Ayers 20:40

Thank you. It was great.

Kimberly Parsley 20:44

Thanks, Kara, for talking with us. And I'll have links to Kara's work in the show notes. And you can follow her work on Twitter and her home life on Instagram. Thanks, everyone. Bye bye. Thanks to Chris Anggun for music. thanks to Joe Hodge for technical support. If you have questions or comments, send them to [email protected] If you liked the podcast, please consider leaving a review. If you really liked the podcast, go ahead and subscribe and tell others about us. Until next time, thanks for listening.

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July 27, 2022

Dave Matheis is a lifelong advocate and Ally for people with disabilities. Despite not being disabled himself or having anyone in his family who is disabled, he has devoted himself to improving the lives of people with disabilities. Listen to his story and how he got here.

Jason Jones is a husband, father, and one of the people featured in the book "A Celebration of Family: Stories of Parents with Disabilities."

Listen to him tell about his parenting journey, including highs and lows.

This episode also includes an introduction from the host, Kimberly Parsley, another parent featured in the book.

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

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

Send comments and questions to [email protected]

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

Thanks to Steve Moore for the transcription which you can find in the show notes below when they become available.

Transcript

Kimberly Parsley  0:04

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. I want to talk a little about why I was so excited to do this podcast. I love podcasts. I listen to them all the time. That and audiobooks. I was listening to a podcast, we can do hard things by Glennon Doyle, which is an awesome podcast not related to disability but still an awesome podcast. And Abby Wambach, famed Olympian and soccer player was talking about internalized homophobia. And I was like, homophobia, but you're gay, just not a secret. Abby is openly gay. And so I listened to her and I, I thought about it some more. And I was, it dawned on me that, yeah, what she was saying was that she felt that there was something wrong with herself, because she had internalized all of the homophobia that was in the world around her that she saw all the time and every day. And and that's the point at which I realized that I had internalized some ableism an ableist messaging that I that I wasn't enough that I wasn't worthy, and that disabled people in general, were less. If you had told me, I felt that I would have denied it, because I had never thought of it that way. But I remember very clearly, when I was in college, which was quite a while ago, my goal was to get a job in the mainstream sector, because I felt like that was, that was the real mark of success was getting a real job, not a job with working with disability or disability advocacy. And I would love to go back to my college age, self and just smack her on the head for so many things. But in particular for that, because I have since met so many people who work in the disability field, and they are the most, most kind, most caring, but also just most ferocious and ferociously loving, loyal and optimistic people I have ever met. And I have been absolutely blessed to have many of these people in my life. But I didn't, I didn't think of that, then I wanted a different job, a job without the disability label attached to it. And so the demand and disrupt is the name of the podcast at demand is that we that's harkening back to the days of the disability rug, by the advocate opress, here in our in Kentucky. And the advocacy that those people on whose shoulders we stand that those people did to make sure that the ADEA got passed, make sure that disabled people are not seen as not even second class citizens. There were times where even less than that, but I want to honor their legacy by continuing to demand equality, because we don't have it yet. We aren't there yet. The fight has to go on. And they gave us the roadmap for that fight. And I will be forever grateful to those people. And that disrupt part of that of that is the disruption of the patterns that lead to viewing any group of people as though they are somehow less than or unequal. I want to disrupt that way of thinking in the world and in ourselves, because I was carrying that around with me and didn't even know it. And it opened up my life so much to so many more opportunities. Once I saw that there and I disrupted that thinking I said no, you these thoughts are not going to live here anymore. They are not welcome. So the Disrupt is to get rid of those thoughts in ourselves, as well as in the rest of the world. That's a little about me, I'm sure you'll he'll hear more about me as as times go on, I am blind also. I also have a I have a chronic illness. I've lost the use of my left hand. I used to be a writer, and I do still write sound but it's harder because my writing was always done through my fingertips. So now I can't really do that. So I've turned more to shorter things like poetry and also podcasting because I just have to Talk. And as people who know me can tell you, I do that very well. I talk a lot. So I just wanted to introduce myself to everyone and say, Thank you so much for listening and for giving this podcast a try. I hope you enjoy it. Welcome to the inaugural episode of demand, and disrupt where we are talking with Dave Mathis, a longtime advocate for people with disabilities. And he is the editor. And I guess you did some of the writing also of Dave for a new book. Well, it's been out about a year a celebration of family stories of parents with disabilities. Welcome, Dave.

Dave Matheis  5:45

Thank you. Welcome.

Kimberly Parsley  5:47

So tell me about this book and how it got started, where the idea of it came, came from.

Dave Matheis  5:54

Yeah, was working part time for the Center for Accessible living, which is an independent living center in Louisville, Kentucky. And we'd had an ad a couple of conversations with staff members who had disabilities. And they, we talk we were talking about parenting, and we're a couple of them who were parents with significant disabilities. And I just found the the stories, they were telling me to be interesting, you know, one woman mentioned that she had had Child Protective Services called on her for no reason, besides, she had a visual display, visible disability, and a few other episodes like that, and also how positive their parenting experiences were. And so we decided, as a group that maybe as a center for independent living, we should do more on the subject of parenting with a disability. And we I knew a few other parents with significant disabilities, we organized about two or three panels at different events and conferences and meetings, where we have four people with, who are parents talking about their experiences. And they went quite well there were very well received. So and at the same time, I kept discovering more P parents with disabilities that I knew. So we decided at that point, maybe this would be a good subject for a book. And we we went forward with that idea, we felt like it would be a serve as a model for other young people with significant disabilities. Were thinking about parenting or whether they should parenting because these were, you know, for the most part, very positive experiences despite some bias and discrimination. These are positive experiences, and people have been able to work out a number of issues to be very successful parenting. So we we start we started right as COVID Hit the shutdown hit, I guess that would have been spring of 2020, I think is when we started really putting these stories together. And we ended up with 30 different stories in the book. I think it came out pretty well.

Kimberly Parsley  8:54

I think so I've read the it is it is amazing. I hesitate to use the word inspiring as a disabled person myself, I am blind and I full disclosure am in the book. What am I chapter 23?

Dave Matheis  9:08

I think you're chapter 23.

Kimberly Parsley  9:10

I'm not sure how much people had to pay you to get a higher chapter member but whatever I'm not

Dave Matheis  9:15

a must read parent must read chapter and I hope they're so well, I hope nobody thinks that the order was something to do with the quality of the story.

Kimberly Parsley  9:31

No, only me only I think

Dave Matheis  9:36

I did have reasons for putting in place things the way where I put them so

Kimberly Parsley  9:40

so so go ahead and tell me about that. Tell me about the creation of the of the book.

Dave Matheis  9:46

Well, we did and again, this was during COVID Jason Jones and I had developed a bad I think it's seven or eight questions for the panels to use. I didn't have anything with the to do with the operation of the panels. Jason was a moderator. And so there was like an eight questions that he kind of used to as a guide for the panel's. So we kind of formalized that was a quick, we would well, I decided that we would use those questions for everybody's story. So there will be some resemblance or some similarity and what people were talking about. And when we had those questions, I began zoom interviews, do these zoom interviews with people that I knew and who had agreed to take part and in what I would go through the questions, and they would answer him that was recorded through zoom. And when we sent the asset, the recording the audio recording through a transcription software, to get essentially a transcript of the interviews. And the transcript, the transcription software works surprisingly, well, I didn't have to do a whole lot of cleanup. But I did do some reorganization, and some to turn it into a comprehensive narrative each. So in a sense that I didn't really write but I did kind of mold the interviews into a story. That's true in about 20 of the 30 stories. Two other stories in a book, two other chapters in the book are reprints from other publications in the past one about the marriage penalty that people with disabilities face when they're on Social Security benefits, and they get married. And then the other one was about a custody battle the person with a significant disability had when he was getting divorced. And then the remaining seven or eight stories of people actually wrote their own story and sent it to me, I gave them some questions to use as a guide. Some didn't, might use it more than others. Of the stories of the interviews I did. People are allowed to change them, they were allowed to review what I'd written up and change what they wanted. One person did a near real, real light rewrite on her story, which is fine. Other people make significant changes, like to talk about one story that a person turned in. And we, after I got hers, her story, she said to me, we had coffee on her back porch with her and she was telling me all these other things. So we gotta get this stuff in your story. So together, we kind of expanded her. So there, it was, you know, it was an interesting process. You know, we did it a lot of different ways as it turned out.

Kimberly Parsley  13:33

And what surprised you the most, and in talking to all these Disabled Parents, what surprised you the most?

Dave Matheis  13:40

Well, there's a couple of things. First off, and I shouldn't have been surprised at this, because I was talking to people about their families. But the honesty of all the parents was pretty noteworthy, pretty amazing. They really wanted to talk about their family experience and their kids. That was universal. And it shouldn't surprise me because, you know, people like talking about their kids. And what's more important than family to people? All right. Another thing was, you know, it's pretty universal that the in, you know, serve people, some people have bigger obstacles to their parenting than others, you know, family members, medical professionals tell them not to do this. They faced a lot of that and I guess one universal is the resolve these folks had to become parents. And then they would say that would surprise me. This surprised me was that there was one question we asked, basically was what adaptations or assistive tech now ology or assistance was important to you. And becoming an effective parent. And almost universal response to that was? Well, you know, I think my children adapted to me more than I had to adapt to them. really struck me because that, you know, that kind of shows how resilient and adaptable small children are. They just they just learn how to adapt to their parents. And that was almost universal. Hmm.

Kimberly Parsley  15:51

Yeah, I'm sure. It doesn't surprise me that you would have people ready to talk because we get asked the question, how do you insert whatever all the time? So we have lots of answers to. Yes, everybody thinks that there's absolutely no way that we can, parent. And, you know, I think I think that's true. As human beings. I mean, you look at these children who their whole goal in life is just to test gravity constantly. How do any of us do it? How do any of us do it at all? And so that doesn't, doesn't surprise me that people were ready to talk? Well, this podcast is, of course, called demand and disrupt. And it's our tagline is advocating for ourselves and for each other. And as parents, we advocate for our children. But we also have to advocate for each other. And that's something that you have been doing your entire career, even though you do not have a physical disability, am I correct? That's right, you don't have the ability. And but yet you have advocated for people with disabilities. I mean, I met you in 1996 When we were you worked in Frankfurt, and I was just doing an internship internship in Frankfurt. So tell me about that. Tell me about how your your life to took you to being so passionate about helping people with disabilities.

Dave Matheis  17:34

Well, I have no personal connection to disability when I was growing up, basically. But I was a child of the 60s, and you know, period when people were trying to change the world I suppose. In trying to make a difference. So when I got into college, I was I knew I wanted to do something in social services or something to help people I guess, just me and a Helping Professors profession. So I volunteered. I went to Bellarmine College Now University here in Louisville, and I volunteered that was caused the time the cerebral palsy school, and it is what the it was what the title says it was a school for people with physical disabilities, cerebral palsy, but also other physical disabilities. So I wanted to do some volunteer work and they were looking for somebody to help in there. They had a little pool in the school for therapy. And I guess, once or twice a week, for the entire time I was in college, I I helped in the pool. And, and then there was a woman there beyond school age, but she would come in and they had set up a place for her to paint with her teeth. And she she had severe cerebral palsy, she was probably in her 30s at the time. And so much so that you know, she depended on others for her care. And she really couldn't do much at all with their hands because of significance of the cerebral palsy, so she would somebody would paint brush in her in her mouth and she painted with her teeth and she had kind of put something on the bulletin board over Bellman that she would like to talk to people. So I began meeting with her fairly regularly. At the same time I was volunteering at school. And we became really good friends over the years. We did a few things together and visited her house fairly often. And she was kind of encouraged me to go into the disability field. And one thing she wanted to suggest that I do was work at Kent at Easter Seals camp, there was one in Kentucky in Carrollton called Camp chi sock. And then she went to every summer so I applied to go there, they didn't have any positions open, but they were opening a new camp at rough river called Camp green shorts. And I went down there as a 20 year old. And we 21 year old and we it it was just a great experience. Everybody there was it for the same purpose that you know, the staff was there to, to work with these campers with very significant disabilities. And I ended up going back for four summers because it was just such an experience for me. And I even quit two jobs to go back to the camp. And because I graduated in 76 and didn't know what I wanted to do with a history degree. So I worked as a supervisor or what were known as sheltered workshops at the CEP school attached to the CEP school, I did that for nine months. And then I quit one camp. I came back did my student teaching in history in middle school and one thing I learned is that I didn't want to be a teacher. So I got another job and I didn't care for it. So I quit to go back to camp one more time. And then from there, after that was my last summer camp, I worked at the sheltered workshop again, I worked at a special special education teacher for a couple of years, worked at a residential facility for individuals with disabilities for a few years and then I eventually got to state with a got a job with vocational rehabilitation in a central office in Frankfort. Then I went to the office for the blind to work for the cats network for a while the 80 project. This is technology project, then I went back to voc rehab. And finally after all these years, I was managed to hold a job. Then another 23 years of vocational rehabilitation. So that is the how I got involved probably longer than it needed to be.

Kimberly Parsley  22:52

No, no, I'd say I did not know this stuff. I didn't I worked. Like I said we met in Frankfurt, but I did not know this minister. That's very interesting to me.

Dave Matheis  23:01

Yeah. So that's an eye kind of intricate path through the field. And then after I retired in 2017, I went to work part time for the independent living center.

Kimberly Parsley  23:16

So and they're in mobile, and that's where you are. Yeah. Okay. Now tell us where I'll have that link in the show notes. Look from Amazon, Amazon Kindle version. Where else can people get the book right now?

Dave Matheis  23:32

Well, right now. That is the main place through Amazon. We do so locally. At the Carmichael books in Louisville. It's an independent bookstore. It's available there, we've reached out to some other independent bookstores but not very successfully, unfortunately. And we can supply copies directly from the center. If somebody went and say, particularly wanted a quantity of copies of the book for classroom or something else they could they could contact us the Center for assessable living and we could supply them with a quantity of books at a reduced price.

Kimberly Parsley  24:14

Okay, okay. And you're working on getting the book on Bookshare. Is that right? It is on Bookshare

Dave Matheis  24:19

it's been a couple months. Sometime last spring. It finally got on Bookshare I had a tough time connecting with them, but it is on Bookshare and you know, Marissa Roderick, the daughter of one of the parents in the book, I know several people who were able to access it that way.

Kimberly Parsley  24:39

Okay, great. Submit it.

Dave Matheis  24:40

We submitted it to Kentucky talking books. Not long after we published last summer and they still not have recorded a version and probably need to call contact them again. They were backlogged with books to record because of COVID

Kimberly Parsley  24:56

Ah, right. So many.

Dave Matheis  24:59

Okay, Can I say one more thing about the book? You know, one of the reasons we put it together was, I think I mentioned that to help people who, with disabilities who might be considered being parent might consider being parents. So we wanted as many different disabilities represented as possible. So I think we got to pretty much covered, although there's probably a higher representation of people have physical disabilities. But we do have people with mental health issues we have, of course, people who are visually impaired or blind people who are deaf or hard of hearing. We is interesting. I don't think I mentioned but about think 23 of the stories are Kentuckians, but we are having trouble finding people with mental health and intellectual disabilities in Kentucky, who would would be willing to talk so there are a few folks out of state represented in the book. Yeah, we, so we've got, I think, if you're a person with a disability, thinking about becoming a parent, you should be able to find a model in the book, no matter what your disability is.

Kimberly Parsley  26:39

I think that's true. My, my, my oldest child is 13. And I looked for a book like this before, before I had him and it there would there was another book like this, this is a very unique endeavor that I put together.

Dave Matheis  26:59

I'm glad to hear that. That's, that helps you know that it helps. We had a couple of people, there's like three stories of deaf people who acquired disabilities after their parenthood. Just so we have examples of that to

Kimberly Parsley  27:16

outright Yeah. But people don't think about that, do they? That's so interesting. So my next interview is going to be Jason Jones, who you mentioned already, and he has a wonderful story. And all through the next season of our first season of this podcast is going to be featuring people who had something to do with a book or were featured in the book. So thank you very much, Dave, for talking with us. I appreciate all all that you've done for the community over the years. Thank you so much.

Dave Matheis  27:49

And I want to apologize for putting you so far back in the book.

Kimberly Parsley  27:53

Well, thank you. I appreciate that. Thank you.

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