Episode 21: That’s Not Cool

This week, Kimberly expresses her frustrations at the voting process, and later talks to parent activist Lindsay Brillhart about parenting with a Disability and advocating for a child who also has a disability.

The nonprofit group Lindsay mentions, TASP, can be found at Achancetoparent.net

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

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

Send comments and questions to [email protected]

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

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

Transcription

Kimberly Parsley 00:03 Welcome to Demand and Disrupt: The Disability Podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Advocato Press, based in Louisville, Kentucky. Kimberly Parsley Welcome to Demand and Disrupt: The Disability Podcast. I am Kimberly Parsley and I am here with Lisa McKinley. Hey, Lisa! How are you doing? Lisa McKinley 00:26 Hey, everybody! How is it going, Kimberly? Kimberly Parsley 00:30 It's going. Like, it's just sort of going. I was gonna say it's going good, but it's really not. Lisa McKinley 00:38 Well, that happens. I know it's been one of those weeks. Kimberly Parsley 00:42 It seems like it has. It seems like it has for lots of people, not just me. We’re recording this on election week here in Kentucky. We have off-year elections. No spoilers here – we re-elected governor Andy Beshear. I went to vote nearby, just down the road. Lisa McKinley 01:06 How was that? Kimberly Parsley 01:10 I'm trying to think of how it was that won’t make me have to have an explicit warning on this podcast episode. It was not good, Lisa. It was not great! Not great. Used to love where we used to vote. Before the pandemic, we’d go down to the fire station in our neighborhood or our community and they knew me. They would have the electronic voting machine ready to go; it would be up and running at the fire station. So, the kids would get to play on the fire truck while Michael and I voted. It was nice. It was great! That has no longer been my experience since 2020. This week, I go in to vote. Now, these were not volunteers working in the poll, okay (because I'm very respectful of volunteer coworkers), but these were not volunteers. They were actual employees of I don't even know what, but something. When I finally asked someone said she was an employee of the DMV. I was like, “Well, that explains why you don't know how to deal with blind people, I guess!” Lisa McKinley 02:21 So, people who should know; who should have their act together. Kimberly Parsley 02:25 Well, there should be training. There should be training and I will complain to the proper authorities. If anyone knows who I can complain to, please let me know. So, here's what happened. I go in and they're like, “Do you have your ID?” “Yes.” Michael shows them an ID, Michael and I together, and she says, “Does she have an ID?” I say, “Yes, she does.” So, I hand her my ID. So, Michael signs the thing and she says, “Can she sign her name?” Then, I start waving and I'm like, “Hey, look! Yes, she can! She's good, thanks!” So, I sign my name and then they hand me a paper ballot and give me a pen. I'm like, “No. There should be an electronic ballot or a machine that I can use for that.” And she says, “Oh. Well, if you want to do that, then we have to go through the process of spoiling this ballot or he could just (he being Michael, I guess) he could just help you.” So, I am like, “No. It's my right to vote independently and I want to exercise that right.“ She audibly sighs, “Okay.” I'm like, “Gee! Sorry I put you out, lady who's supposedly getting paid to be here!” So, then we go over to the electronic voting machine and it wasn’t even plugged in. No one knows how to work it, except… wait for it… my husband! He turns on the machine. Yeah! He turns on the machine and everything. Then, the woman says, “Okay, there you go.” I was like, “There should be headphones. This should be talking, that's sort of the point.” She sighs again. She goes looking all around, “Where's the headphones? Where's the headphones?” Now, keep in mind I've already been here over half an hour. There wasn’t a line, but I've already been here over half an hour, right. They find the headphones but they can't find where it place in at. So, Michael, again (thank God for my husband – I do love him dearly) finds the headphone port. He's like, “I think it's here, where this picture of a headphone jack is. I think this panel has to come up.” She was like, “Okay.” She does nothing else, though, so Michael’s like, “Okay, I'm taking it off!” So, he takes it off and he gets it and we plug it in and I use the machine and I vote. It’s so stupid, because now it has to print out a paper ballot. So, now I go to scan the ballot and it says, “Ballot cannot scan, because this is a provisional ballot.” The woman says, “Why did you cast a provisional ballot?” I'm like, “You set it up!” [frustrated laughter] So, to the poll lady who’s acting put out, the others were like, “You must have hit something when you turned it on or something, because it's a provisional ballot.” “Well, I guess we're gonna have to spoil this one!” she says in a particular tone. So, this is a second spoiled ballot. Lisa McKinley Was she annoyed? Kimberly Parsley Oh, yes! It’s all my fault! How dare a blind person come in and try to exercise my right as a citizen to vote! This was just really putting a cramp in her bag; she was not impressed. Not impressed with me being there at all. And Michael and I are sitting there waiting for them to spoil the second ballot and looking at all the different things and all the different ways no one who's disabled can vote in this place. Like, in order to get in, we saw them helping an elderly gentleman in a walker up the step to get into the place. Really? That’s not cool. Not cool! There is a ramp into the building, but that's not where they set up the voting machines. They're not trying to be helpful for people with disabilities at all. Then, I hear them telling someone, “You got to make sure you don't get out of the lines when you're filling that in; you can't get out of that line.” So, I'm like, “What about someone who has Parkinson's and has tremors or other disabilities where manual dexterity is challenging?” That's not cool! God help them if they've got to go to the electronic voting machine! So, what I ended up doing was just saying, “Okay, forget it! Michael will fill out my ballot!” Lisa McKinley But, that's never gonna do. Right? Kimberly Parsley No, that's not what I want to do and that's not cool. And what pisses me off the most about this? I, when I was 19 years old, the ADA had just passed and there was a whole, can I say shitstorm? Lisa McKinley 07:32 [laughter] I was going to say, “Ladies and gentlemen, this is Kimberly trying to decide whether or not to bite her tongue!” Kimberly Parsley 07:38 [laughter] Yes! That's what this is. There was a whole shitstorm in the small town where I lived about having to move polling places away from where they'd always been into the schools because of ADA, “So all these disabled people could have their ramps and get in to vote and how dare they mess up our politicking and all our fun and our traditions!” More than 30 years on, I'm still fighting this fight. When I was 19, I wrote a letter to the editor of the paper, I went to Frankfort to talk to the Legislative Research Committee. Yet 30 years on, this still! Lisa McKinley 08:19 I'm kind of torn in the sense that it should not be this way. Right? But at the same time, I realize that we as disabled people are not top-of-mind awareness to whoever is setting these things up. But then maybe we should be, but how do we do that and should we have already arrived there? Kimberly Parsley 08:48 I would love to have just been an afterthought, but I don't think I was thought of at all. I mean, it's annoying to me that everywhere you go in the course of your day, you're always reminded, “The world isn't really set up for you. We'd really rather you not inconvenience us with your presence.” And I am totally fed up with it! So, I needed to take a couple of days to figure out how to channel this rage into something that can maybe bring about change and not just raise my blood pressure. [aggravated laughter] Lisa McKinley 09:33 Well, I'm sorry that happened! That sucks! There’s no better word. Yet, we deal with that stuff all the time. Example: when they asked Michael, “Can she sign this?” Kimberly Parsley Oh, yes. Lisa McKinley “Can she do that?” I was just somewhere the other day and the lady I usually walk with wasn’t there. So, another lady goes up to my husband and says, “So-and-so is not here today, so I'm going to walk with her if that's okay.” Duhhh! You can address me!“ And I've said that before. I used to be really snarky about it when I was younger. Kimberly Parsley 10:29 When you had the energy for it? Lisa McKinley 10:33 Yes! I’d be at a restaurant for instance and someone would ask, “What would she like to drink?” to somebody who was with me and I would answer, “SHE would like a Sprite!” You know. Kimberly Parsley 10:39 Yes. It gets so old! One of the things I think is particularly dangerous about this kind of thing (maybe dangerous is too harsh a word): the more that people try to erase you the more you feel erased. And that's not cool! That's not cool for us. That's not cool for our kids! That's not cool for… I mean, people with disabilities are the largest minority; we keep hearing that. So, it’s not just a few of us; there's a lot of us and we can't risk being erased! We've got to stand together and make sure that we're seen and that we're heard. Possibly loudly and with expletives (but maybe that's just me)! Lisa McKinley 11:34 Yes. I'm starting to embrace this “respect me” attitude, because I've always been the type of person to just get along. “I want to make myself small and not inconvenience anyone.” But, you know what? In 2023, I am gonna take my space… Kimberly Parsley There you go! Awesome. I love it! Lisa McKinley I am here! You're gonna see me, you're gonna listen to me! If that inconveniences you, so be it. Kimberly Parsley 12:07 Yes! I love it! I love it! That makes me happy to hear you say that. It really does. It makes me happy! Speaking of being heard, I'm going to stop ranting now. Well, I mean, I will still rant, of course. I'll just not do it on this particular episode anymore or this subject. But speaking of being heard, Lisa, how do you listen to podcasts? Lisa McKinley 12:29 Well, I do not subscribe to podcasts which I what I hear is what most people do. They find a podcast they really like and then they subscribe so that they are aware when new podcasts come out. But I basically ask my Alexa device to play the podcast that I'm interested in. I will say, “Play the latest episode of Dateline” and I can do the same thing with the iPhone. I can ask Siri, “Play the latest episode of Demand and Disrupt” and she will start playing it for me. If I want to find a new podcast that I… The thing with subscribing, I guess – correct me if I'm wrong – you can kind of browse and see what kind of podcasts there are that you might be interested in. Right? Kimberly Parsley 13:28 You can with a podcast app, like on your phone. I assume on the computer, too, although that's not how I do it. I mentioned to one of my friends that I was going to be recording for the podcast and she was like, “I need to listen to your podcast. How do I do that?” I was like, “Oh, okay. You have a podcast app on your phone.” And she says, “I don't think I do.” [laughter] I'm pretty sure you do! I'm pretty sure you do. So, I thought, “It'd be good to just walk people through. Maybe unawareness of podcast apps is a common thing.” Maybe some people would like the way that you do it. That would be cool when I'm moving around the house to be able to listen to a podcast that way. That's not usually how I do it. So, certainly the Echo devices and I assume it's the same way with Google Assistant. What are the others? I assume it works pretty much the same way. The way I do it is I use a podcast app. The one I use is called Downcast. It's very blind-person friendly, it’s very voiceover friendly on the iPhone and I think they have an Android app, also, but I'm not totally certain about that. But that's the one I use. There are some others. There's one called Overcast. There's one called Castro. There are lots of podcast apps. Whatever phone you have, if you just search for podcasts, it'll tell you. I mean, all phones come loaded with an app. Then, once you're in that app you would say, “Search for Demand and Disrupt” and it would come up. Then, once you click on Demand and Disrupt, there's usually (I think visually) a symbol or icon. I'm told it's represented as like a plus sign for add. Usually up in the right hand corner, I think, or it'll say, “Subscribe” or “Follow” or such. Follow one of those and then you'll just tap on that or double tap, then you're subscribed. Then, you’ll just go to your podcast app and go up to the top usually and you can tap on something and it'll refresh your feed. You'll get the newest episodes in there. That’s how I do it. And now I'm going to try the Echo device way. Lisa McKinley 15:55 It is convenient. You can also ask her (Alexa) for podcast recommendations. Now, in the last week or so I've noticed it’s started giving me updates. I'll get this little “Do-Do” sound tone on the Alexa, which means there's a notification. It will say, “A new episode of Demand and Disrupt has posted. Would you like to listen?” Kimberly Parsley 16:29 Really? Wow, that's cool! What if you say no? Will it just hold it for later? Can you just get it later? Lisa McKinley 16:34 I have said no, because I wasn't where I could listen at the moment. I don't really know what it did with it, but at least I know it's available. It's there; you go and ask to hear it later. Kimberly Parsley 16:47 Well, that is cool! So, we hope that people have found this useful; this walkthrough of how to subscribe to podcasts and different ways to listen to podcasts. If you use a different app that we haven't mentioned and you want us to mention it, I mentioned it or you listen to podcasts in a totally different way, let us know. Send us an email at [email protected]. We would love to hear from you! Speaking of hearing from people, we are going to hear my interview with Lindsey Brillhart. She is one of the parents featured in the book, A Celebration of Family: Stories of Parents with Disabilities. I was privileged to get to talk to her. So, here’s my interview with Lindsay. So, where here today with Lindsey Brillhart. Hello, Lindsay! Welcome to Demand and Disrupt: The Disability Podcast! Lindsay Brillhart Hi, Kimberly! Kimberly Parsley How Are You Doing? Lindsay Brillhart 17:48 I am awesome! I’m glad to do this. Kimberly Parsley 17:55 Excellent! I'm so glad to hear it. Now, you live where? Tell us where you are from, again? Lindsay Brillhart 18:02 I live near Cincinnati, Ohio. Kimberly Parsley 18:04 Okay. Are you on the Ohio side or the Kentucky side? Lindsay Brillhart On the Ohio side. Kimberly Parsley 18:11 Okay. All right. Well, will you go ahead and tell us about yourself and about your disability, Lindsay? Lindsay Brillhart 18:17 Okay. I have a partner that I've had for 14 years and I have a almost 13 daughter and a 22 year old daughter – two girls. Julie is 22 and Sarah is almost 13. I talk more about Sarah. Sarah has a more significant disability, so it’s more about her, but I love to include my other daughter in everything as well. I have Asperger's Syndrome. Kimberly Parsley 18:55 Okay. Tell me about some of the supports that you need for daily activities due to the Asperger's Syndrome. Lindsay Brillhart 19:04 A lot of the supports I need are to just have reminders and keep organized. I have a calendar and everything else, but still some days (we all have them) I need reminders about things. For example, my people that come and help me out, they remind me to make sure that I have everything together for the next day for my family. They make sure I get healthy meals. When my daughter, Sarah, was younger, I didn't have the best of healthy meals and I have healthy meals now. So, I can make sure that my Sarah has everything that she needs, because she is autistic, nonverbal and she has cerebral palsy and she doesn’t speak. But we have a PECS communication system, which basically means we have a book of things that she likes and she can show me a picture. For example, there's a picture of mashed potatoes and it says, “Mashed Potatoes” on the bottom. She likes mashed potatoes, so she can hand me the picture to say, “Mom, I want mashed potatoes,” in that type of way. She does make noises and things and we're learning with her videos. She loves to watch cartoons and stuff like that, but they’re smart cartoons. For example, one of the cartoons asks, “Do you know this letter?” and my Sarah makes a particular noise, “Ummm.” It's something close to that. So, we’re like, “Good! You know what that letter is!” She knows her letters. She's in seventh grade. So, she's learning a lot through the videos and things that she watches. Kimberly Parsley 21:10 I see. What other things have you had to do to adapt to Sarah? Lindsay Brillhart 21:15 I've had to learn how to parent her. When you parent a daughter that is autistic nonverbal, you don't know how to parent them at first. With my Julie, my Julie is totally verbal and can be on her own. She lives with my mom, because my family went through some rough times. We're doing better now, but we went through some rough times and Julie decided to stay at my mom's house. She has a bedroom at my house, but she prefers to stay with my mom. But I get to see her a lot. Example: yesterday. We went to lunch yesterday before I took Julie to work. I drove her, but she took me to lunch. And other things like that. So, we do get to go out. But I get a lot of the extra supports for doing things with Sarah, because I have never been with a child that is nonverbal. So, I get some extra supports with her. Kimberly Parsley 22:17 Well, that’s great! So, tell me about Sarah. Does she go to public school? Is she in a different program? Lindsay Brillhart 22:24 Sarah goes to a special school. In the beginning, Sarah went to a public school that had an autistic program and they had different things. I've learned recently that Sarah is a level four. Basically, it means that Sarah's in school with about 30 kids that have different kinds of special needs. It’s all special needs and they're integrated in different ways for those kids. Kimberly Parsley 23:01 I see. Okay. And she's doing well there and thriving? Lindsay Brillhart 23:05 She is doing well and thriving. Kimberly Parsley 23:08 Excellent! I'm glad to hear it. Now, you are featured in the book, A Celebration of Family: Stories of Parents with Disabilities. One of the things you talk about is when you were pregnant with Julie, your first child, you were afraid she would be taken away from you. Do you want to talk a little about that? Lindsay Brillhart 23:32 Yes. I have a dad and a grandfather who were in the medical community and they thought that I couldn't parent Julie. So, what I did before I had her: they wanted me to go through a parenting course of a pretend, fake baby – a doll – for about a week or two weeks. When I got this pretend baby, I got diapers, I got bottles, I got everything to take care of this baby and I had to learn to take care of her. It was all recorded, everything I did well with her, everything I did well with that baby and I did very, very well. So, I got to prove to my family that it was something good for me. Kimberly Parsley 24:25 And the reason you were worried about that is because there was a law on the books in Ohio that the state could take children away from parents with disabilities. Right? Lindsay Brillhart 24:41 Absolutely. And they have worked [on changing the law] since that and that was, oh my goodness, a while ago – almost 20 years ago! They're working on making it better. Dr. Kara Ayers (she’s in the book as well) has done a lot of work. I haven’t done as much work with that, but I've done a lot of other work. The work that I do now to do with that is to talk to people that are going into the system – talk to professionals that are coming into the system – to learn about people that have disabilities, because a lot of the people, when they come into the professions, when it comes to this system, they don't know what it's like to work with somebody with a disability. So, I do and I've trained probably about 2000 people in the past few years just to get them learning about people with disabilities: that we are real and we are out here. And the successful stories? Yes, we've seen some not successful stories, but I like to let them know that we have some successful stores out here. Kimberly Parsley 25:57 I read in the book where you mentioned a group called Partners in Policymaking. Is that correct? Tell me about that group. Lindsay Brillhart 26:05 Yes. When we came, I got involved with that through the county. I got involved with that, because I wanted things to be done better. Right before I had my little girl, there was a case (it’s all in my story) about a little boy named Marcus Faisal who actually lived in Ohio. He had family in Kentucky. He had autism and he went for a long weekend with his foster family. He had family, but he was adopted into the system and he had a foster family. Well, long story, sad story: the little boy got burned in the fire. The foster family left him in the closet for a weekend (it’s how he got burned in the fire). They didn't want them (the authorities) finding his remains and things like that. So, they’ve made it harder for people with disabilities. It makes me sad, because I don't want anything like that to happen to anybody. I think that people with disabilities should be out there and be known/to be known. We all have struggles, nobody's perfect in this world. I just want people to know that, “Hey, there are people out here that have kids with disabilities, but they have extra help and they can do things better for their families.” Kimberly Parsley 27:35 Yes! That was a truly, truly tragic, horrific story! Tell me about your work with TASP. Lindsay Brillhart 27:48 TASP stands for The Association for Successful Parenting. The website is attached to parent.org. I have worked with them for, oh my goodness, since right before my Sarah was born. I got involved with them, because of Partners and Policy, actually. Because of Partners and Policy, I had a lady that lived in Columbus, which is about two hours from me, say, “Do you want to go to this conference with me?” So, I went with the lady. I met her in the area where she was and I went with her to this conference. [As a result] I have been involved with this organization for 15 years as a part of my life. So, we help make sure that families get their stories known, because a lot of the families don't get their stories known and we want families to be out there and living successfully. Kimberly Parsley 28:58 Okay. What can people with disabilities do to advocate for themselves? Or what can people do to advocate for their children with disabilities? What are some things that people can do? Lindsay Brillhart 29:10 Let me give you some examples of a few things I've done. Telling my story in the book. I think that helps get disability awareness out there. Talking to people. Not just people in the book, I talk to people weekly about my story with my Sarah just to make sure that things are getting taken care of. For example, we're still working on my said medical doctors about things they don’t understand. With Sarah, some of her medical doctors are fellows, which are basically people going into medicine from college to be doctors and things like that. I still have issues, because they don’t understand people with disabilities. So, advocate, advocate, advocate for your kids! That's one big thing. We're working on making it better for them. Kimberly Parsley 30:02 Yeah. Do you find the medical system challenging to navigate? Lindsay Brillhart 30:09 Yes! Even when I have a dad and I have a grandfather [who were in medicine]. My dad is retired and my grandfather's not living anymore, but I still have family nurses and stuff like that. Even with that, yes, absolutely! I have learned to talk to them and just tell them about Sarah and make sure that my Sarah comes first, make sure that person comes first always. Kimberly Parsley 30:36 Did you get better at that over time? Was that hard for you to do in the beginning? Lindsay Brillhart 30:40 There are sometimes I have struggled with it [nervous laughter]. But yes, I'm always getting better at doing that. Kimberly Parsley 30:47 So, would that be your advice to other people? Just start and it'll get easier and better over time? Lindsay Brillhart 30:53 Yes. And your stories can always change. They are not gonna stay the same. They will get better every time you tell your story. I have people that I have told my story to 20,000 times, maybe (a lot of times) and they learn different things about me every single time that I present with them. Kimberly Parsley 31:16 Great! Well, thank you for sharing your experience with us, Lindsay. I’ll link to the organizations you mentioned in the show notes. I appreciate you joining us today! 31:27 I appreciate you interviewing me. I hope everybody has a good day! Kimberly Parsley 31:31 Thank you! If you like the podcast, remember to follow or subscribe so you never miss an episode. If you really liked the podcast, we'd love it if you could leave us a rating or review on Apple podcasts or Spotify or wherever you get your podcasts. That helps more people to find us. If you really, really liked the podcast, then please tell someone about it either in person or send them an email or just share the link on social media. Thank you all. Every bit helps and it makes a huge difference for us. If you'd like a transcript, please send us an email to [email protected] and put “transcript” in the subject line. Thanks to Steve Moore for helping us out with transcripts. Thanks to Chris Onkin for our theme music. Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Kentucky. You can find links to buy the book A Celebration of Family: Stories of Parents with Disabilities in our show notes. Thanks, everyone!

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

This podcast is powered by Pinecast.

Episode 20: The Business of Care

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

Below are links to the items mentioned in the podcast:

Federal Trade Commission Fraud Reporting

New Adaptive Costumes for Halloween

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

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

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

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

This podcast is powered by Pinecast.

Episode 19: Handed A Greater Purpose

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!

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

This podcast is powered by Pinecast.

Episode 18: Supported Employment: What Is It, and Who Does It Help?

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!

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

This podcast is powered by Pinecast.

Episode 17: Journey toward greater independence

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.

Episode 16: All Things Independent Living

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.

Episode 15: Protection and Advocacy, and the low down on sub minimum wage

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

Episode 14: Getting Where We Need To Be: Transportation in Kentucky

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.

Episode 13: Accommodation is Collaboration

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.

Episode 12: Turning the Tables

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

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.

Episode 11: Blindness Mentor

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

Episode 30: Getting Around

Episode 29: Help is out there, and it’s available at 0% interest!

Episode 28: From Dancing to Disney

Episode 27: We’ve Got This

Episode 26: I am Alive

Episode 25: Empowering Parents

Episode 24: Rerun: Still Marching!

Episode 23: Wrap It Up!

Episode 22: When Government is Part of the Solution

Episode 21: That’s Not Cool

Transcription

Episode 20: The Business of Care

Transcript

Episode 19: Handed A Greater Purpose

Transcript

Episode 18: Supported Employment: What Is It, and Who Does It Help?

Transcript

Episode 17: Journey toward greater independence

Transcript

Episode 16: All Things Independent Living

Transcript

Episode 15: Protection and Advocacy, and the low down on sub minimum wage

Transcript

Episode 14: Getting Where We Need To Be: Transportation in Kentucky

Transcript

Episode 13: Accommodation is Collaboration

Episode 12: Turning the Tables

Transcript

Episode 11: Blindness Mentor

Episode 10: Blind Parenting — the eyes are in the back of the head