Episode 1: Friends and Family

2 years ago

July 27, 2022

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

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

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

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley 0:04

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

Dave Matheis 5:45

Thank you. Welcome.

Kimberly Parsley 5:47

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

Dave Matheis 5:54

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

Kimberly Parsley 8:54

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

Dave Matheis 9:08

I think you're chapter 23.

Kimberly Parsley 9:10

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

Dave Matheis 9:15

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

Kimberly Parsley 9:31

No, only me only I think

Dave Matheis 9:36

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

Kimberly Parsley 9:40

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

Dave Matheis 9:46

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

Kimberly Parsley 13:33

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

Dave Matheis 13:40

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

Kimberly Parsley 15:51

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

Dave Matheis 17:34

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

Kimberly Parsley 22:52

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

Dave Matheis 23:01

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

Kimberly Parsley 23:16

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

Dave Matheis 23:32

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

Kimberly Parsley 24:14

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

Dave Matheis 24:19

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

Kimberly Parsley 24:39

Okay, great. Submit it.

Dave Matheis 24:40

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

Kimberly Parsley 24:56

Ah, right. So many.

Dave Matheis 24:59

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

Kimberly Parsley 26:39

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

Dave Matheis 26:59

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

Kimberly Parsley 27:16

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

Dave Matheis 27:49

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

Kimberly Parsley 27:53

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

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