Episode 7: Tough Topics

9 months ago

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

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

To learn more about ADAPT, visit adapt.org.

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

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

Send comments and questions to [email protected]

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

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


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

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

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

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

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

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

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

Keith Hosey Yes.

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

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

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

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

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

Keith Hosey It’s a great topic!

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

Keith Hosey I'm sure.

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

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

Keith Hosey Yeah, absolutely.

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

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

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

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

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

Keith Hosey Right.

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

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

Kimberly Parsley Amen to that. Yeah.

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

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

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

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

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

Keith Hosey Right.

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

Keith Hosey Absolutely.

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

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

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

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

Kimberly Parsley Absolutely.

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

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

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

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

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

Kimberly Parsley That is great!

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

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

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

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

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

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

Keith Hosey Thank you.

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

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

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

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

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

Keith Hosey 23:05 One of my favorites.

Kimberly Parsley I'm, absolutely.

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

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

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

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

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

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

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

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

Keith Hosey That sounds fantastic.

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

Keith Hosey 27:23 Absolutely.

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

Keith Hosey Thanks for having me, Kimberly.

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

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Kimberly Parsley