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

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

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

Send comments and questions to [email protected]

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

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

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

This podcast is powered by Pinecast.

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley 00:06 Welcome to Demand and Disrupt, the disability podcast. Here we will learn to advocate for ourselves and each other. This podcast is supported with funds from the Advocado press, based in Louisville, Kentucky.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Rick We did.

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

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

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

Rick 11:54 Well, I never…

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

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

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

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

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

Rick No. Never did! [chuckle]

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

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

Kimberly Parsley They don't.

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

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

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

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

Rick No. I was mainstreamed.

Kimberly Parsley Oh, you were. Okay.

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

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

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

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

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

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

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

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

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

Sayer Hello.

Marissa 20:56 Hi, love!

Sayer How are you today?

Marissa I'm wonderful! Happy Friday.

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

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

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

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

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

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

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

Marissa 22:34 Awww! Have a lovely weekend!

Sayer You, too!

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

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

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

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

Kimberly Parsley 22:58 Yes, we have…

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

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

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

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

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

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

Marissa It's a dream come true.

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

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

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

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

Marissa 25:30 Thanks for having me.

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

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

This podcast is powered by Pinecast.

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

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

Kimberly Parsley:

Wow. 

Gerry Gordon-Brown:

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

Kimberly Parsley:

Congratulations. 

Gerry Gordon-Brown:

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

Kimberly Parsley:

Wow.  

Gerry Gordon-Brown:

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

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

Kimberly Parsley:

Wow.  Wow.  That Is A Lot.  

Gerry Gordon-Brown:

Is That Okay?  

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

Really?  

Gerry Gordon-Brown:

In 2014. 

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  Uh-Huh.  Yeah.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

Right. 

Gerry Gordon-Brown:

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

Kimberly Parsley:

Right.  Right.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

So I Can Read It.  

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

Yes.  

Gerry Gordon-Brown:

Which Is An Insult.  It's An Insult. 

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  Yes.  Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Oh. 

Gerry Gordon-Brown:

Okay?  

Kimberly Parsley:

Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Do You Know What That Stands For?  

Gerry Gordon-Brown:

That Was A Really Extraordinary Event. 

Kimberly Parsley:

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

Gerry Gordon-Brown:

Transit Authority Of River City.  

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

And What Was The Effect That Had?  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Excellent.  That's Awesome. 

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

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

Kimberly Parsley:

Okay.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Yes.  Uh-Huh.  

Gerry Gordon-Brown:

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

Kimberly Parsley:

Uh-Huh.  Yes.  

Gerry Gordon-Brown:

So Definitely Our Book. 

Kimberly Parsley:

Right. 

Gerry Gordon-Brown:

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

Kimberly Parsley:

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

Gerry Gordon-Brown:

You Are Most Welcome.

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

This podcast is powered by Pinecast.

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

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

To learn more about ADAPT, visit adapt.org.

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

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

Send comments and questions to [email protected]

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

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

Transcript

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

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

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

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

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

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

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

Keith Hosey Yes.

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

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

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

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

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

Keith Hosey It’s a great topic!

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

Keith Hosey I'm sure.

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

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

Keith Hosey Yeah, absolutely.

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

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

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

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

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

Keith Hosey Right.

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

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

Kimberly Parsley Amen to that. Yeah.

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

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

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

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

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

Keith Hosey Right.

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

Keith Hosey Absolutely.

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

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

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

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

Kimberly Parsley Absolutely.

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

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

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

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

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

Kimberly Parsley That is great!

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

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

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

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

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

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

Keith Hosey Thank you.

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

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

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

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

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

Keith Hosey 23:05 One of my favorites.

Kimberly Parsley I'm, absolutely.

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

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

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

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

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

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

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

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

Keith Hosey That sounds fantastic.

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

Keith Hosey 27:23 Absolutely.

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

Keith Hosey Thanks for having me, Kimberly.

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

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

This podcast is powered by Pinecast.

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

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

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

Send comments and questions to [email protected]

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

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

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

This podcast is powered by Pinecast.

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

Vote.org

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

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley 0:05

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

Kimberly Parsley 0:21

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

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

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

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

Kimberly Parsley 5:38

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

Cass Irvin 5:48

Thank you glad to be here.

Kimberly Parsley 5:50

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

Cass Irvin 6:27

That's why we need to register and vote.

Kimberly Parsley 6:30

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

Cass Irvin 6:41

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

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

Kimberly Parsley 8:20

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

Cass Irvin 8:27

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

Kimberly Parsley 9:02

Right. 

Cass Irvin 9:03

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

Kimberly Parsley

Oh, my gosh!

Cass Irvin

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

Kimberly Parsley 9:54

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

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

Cass Irvin 11:54

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

Kimberly Parsley 13:17

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

Cass Irvin 15:32

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

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

Kimberly Parsley 17:40

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

Cass Irvin 17:50

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

Kimberly Parsley 19:59

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

Cass Irvin 20:13

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

Kimberly Parsley 20:36

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

Cass Irvin 20:41

It's very rewarding. Personally.

Kimberly Parsley 20:46

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

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

This podcast is powered by Pinecast.

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

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

Kimberly Parsley

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

Sandra Williams

25:56 Oh, 2000 

Kimberly Parsley

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

Sandra Williams

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

Sandra Williams

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

Kimberly Parsley

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

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

This podcast is powered by Pinecast.

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

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

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

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley 0:04

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

Robotic Voice 0:18

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

Kimberly Parsley 0:58

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

Cass Irvin 1:03

Thank you.  Glad to be here.

Kimberly Parsley 1:05

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

Cass Irvin 1:21

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

Kimberly Parsley

Wow.

Cass Irvin

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

Kimberly Parsley 3:06

It's interesting how little things have changed.

Cass Irvin 3:10

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

Kimberly Parsley 6:35

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

Cass Irvin 7:19

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

Kimberly Parsley

Right. 

Cass Irvin

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

Kimberly Parsley 8:53

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

Cass Irvin 9:05

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

Kimberly Parsley 9:30

Warm Springs, Georgia: famously where President Roosevelt went.

Cass Irvin 9:36

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

Kimberly Parsley 10:55

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

Cass Irvin 12:04

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

Kimberly Parsley 13:34

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

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

This podcast is powered by Pinecast.

August 14, 2022

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

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

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

Send comments and questions to [email protected]

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

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

Transcript

Kimberly Parsley  0:00

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

Dr. Kara Ayers 0:43

Oh, gosh, I do not remember.

Kimberly Parsley  0:47

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

Dr. Kara Ayers  0:49

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

Kimberly Parsley  0:57

Yes. So tell me about yourself, Kara.

Dr. Kara Ayers  1:00

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

Kimberly Parsley  2:13

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

Dr. Kara Ayers  2:26

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

Kimberly Parsley  3:33

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

Dr. Kara Ayers  3:57

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

Kimberly Parsley  4:26

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

Dr. Kara Ayers  4:32

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

Dr. Kara Ayers  6:07

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

Kimberly Parsley  8:23

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

Dr. Kara Ayers  9:06

Yes, exactly.

Kimberly Parsley  9:08

Excellent. So tell me about that. 

Dr. Kara Ayers  9:11

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

Kimberly Parsley  10:26

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

Dr. Kara Ayers  10:30

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

Kimberly Parsley  10:57

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

Dr. Kara Ayers

I love that title. 

Kimberly Parsley

Thank you. We brainstormed a long time.

Dr. Kara Ayers  11:20

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

Kimberly Parsley  13:29

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

Dr. Kara Ayers  13:50

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

Kimberly Parsley 15:18

Really. 

Dr. Kara Ayers 15:20

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

Kimberly Parsley  15:53

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

Dr. Kara Ayers  16:05

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

Kimberly Parsley  16:13

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

Dr. Kara Ayers  16:34

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

Kimberly Parsley  19:08

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

Dr. Kara Ayers  19:11

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

Kimberly Parsley  20:06

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

Dr. Kara Ayers  20:12

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

Kimberly Parsley  20:18

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

Dr. Kara Ayers 20:40

Thank you. It was great.

Kimberly Parsley 20:44

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

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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