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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley

0:04 Welcome to demand and disrupt the disability podcast. Here, we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Advocato. Press base in global content. Sandra Williams is a retired instructor, mother of two, and grandmother to three girls. She enjoys reading, writing, singing, cooking, and traveling, not necessarily in that order. Thanks for joining us, Sandra.

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

25:56 Oh, 2000 

Kimberly Parsley

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

Sandra Williams

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

Sandra Williams

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

Kimberly Parsley

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

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

This podcast is powered by Pinecast.

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

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

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

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley 0:04

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

Robotic Voice 0:18

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

Kimberly Parsley 0:58

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

Cass Irvin 1:03

Thank you.  Glad to be here.

Kimberly Parsley 1:05

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

Cass Irvin 1:21

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

Kimberly Parsley

Wow.

Cass Irvin

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

Kimberly Parsley 3:06

It's interesting how little things have changed.

Cass Irvin 3:10

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

Kimberly Parsley 6:35

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

Cass Irvin 7:19

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

Kimberly Parsley

Right. 

Cass Irvin

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

Kimberly Parsley 8:53

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

Cass Irvin 9:05

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

Kimberly Parsley 9:30

Warm Springs, Georgia: famously where President Roosevelt went.

Cass Irvin 9:36

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

Kimberly Parsley 10:55

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

Cass Irvin 12:04

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

Kimberly Parsley 13:34

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

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

This podcast is powered by Pinecast.

August 14, 2022

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley  0:00

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

Dr. Kara Ayers 0:43

Oh, gosh, I do not remember.

Kimberly Parsley  0:47

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

Dr. Kara Ayers  0:49

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

Kimberly Parsley  0:57

Yes. So tell me about yourself, Kara.

Dr. Kara Ayers  1:00

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

Kimberly Parsley  2:13

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

Dr. Kara Ayers  2:26

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

Kimberly Parsley  3:33

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

Dr. Kara Ayers  3:57

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

Kimberly Parsley  4:26

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

Dr. Kara Ayers  4:32

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

Dr. Kara Ayers  6:07

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

Kimberly Parsley  8:23

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

Dr. Kara Ayers  9:06

Yes, exactly.

Kimberly Parsley  9:08

Excellent. So tell me about that. 

Dr. Kara Ayers  9:11

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

Kimberly Parsley  10:26

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

Dr. Kara Ayers  10:30

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

Kimberly Parsley  10:57

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

Dr. Kara Ayers

I love that title. 

Kimberly Parsley

Thank you. We brainstormed a long time.

Dr. Kara Ayers  11:20

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

Kimberly Parsley  13:29

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

Dr. Kara Ayers  13:50

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

Kimberly Parsley 15:18

Really. 

Dr. Kara Ayers 15:20

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

Kimberly Parsley  15:53

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

Dr. Kara Ayers  16:05

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

Kimberly Parsley  16:13

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

Dr. Kara Ayers  16:34

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

Kimberly Parsley  19:08

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

Dr. Kara Ayers  19:11

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

Kimberly Parsley  20:06

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

Dr. Kara Ayers  20:12

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

Kimberly Parsley  20:18

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

Dr. Kara Ayers 20:40

Thank you. It was great.

Kimberly Parsley 20:44

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

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

This podcast is powered by Pinecast.

July 27, 2022

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

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

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

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley  0:04

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

Dave Matheis  5:45

Thank you. Welcome.

Kimberly Parsley  5:47

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

Dave Matheis  5:54

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

Kimberly Parsley  8:54

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

Dave Matheis  9:08

I think you're chapter 23.

Kimberly Parsley  9:10

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

Dave Matheis  9:15

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

Kimberly Parsley  9:31

No, only me only I think

Dave Matheis  9:36

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

Kimberly Parsley  9:40

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

Dave Matheis  9:46

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

Kimberly Parsley  13:33

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

Dave Matheis  13:40

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

Kimberly Parsley  15:51

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

Dave Matheis  17:34

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

Kimberly Parsley  22:52

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

Dave Matheis  23:01

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

Kimberly Parsley  23:16

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

Dave Matheis  23:32

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

Kimberly Parsley  24:14

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

Dave Matheis  24:19

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

Kimberly Parsley  24:39

Okay, great. Submit it.

Dave Matheis  24:40

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

Kimberly Parsley  24:56

Ah, right. So many.

Dave Matheis  24:59

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

Kimberly Parsley  26:39

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

Dave Matheis  26:59

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

Kimberly Parsley  27:16

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

Dave Matheis  27:49

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

Kimberly Parsley  27:53

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

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