Episode 2: Disabled parenting starts before birth

1 year ago

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