The Rebellious Act of Disabled Parenting (with Eliza Hull)

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Introduction – 0:00

 

BLAIR HODGES: This is Relationscapes, the podcast where we map the geography of human connection. I'm journalist Blair Hodges and our guide in this episode is author Eliza Hull.

ELIZA HULL: I'm still the parent. I'm still capable. I do everything for my children just like any non-disabled parent would. But there is something really beautiful when I'm crossing the road and my daughter is holding my hand and telling me to watch out for the step ahead. That, to me, is building a very compassionate, kind human.

BLAIR HODGES: Eliza Hull loves being a parent. Becoming one meant overcoming a lot of stigma because Eliza is disabled. And it's not uncommon for friends, strangers, and even some doctors to tell people with disabilities they just aren't fit for the job. But the reality is there are millions of disabled parents in the United States and in countries like Australia, where Eliza is from. Deaf or blind parents, parents who use wheelchairs or other assistive devices, parents with intellectual disabilities or autoimmune conditions, and more.

We meet some of these parents in Eliza's book, We’ve Got This: Stories by Disabled Parents. What these stories reveal isn't parental weakness. It's systemic prejudice, which Eliza and other disabled parents are fighting to overcome with persistence and creativity. Eliza joins us to talk about it right now.

 

A Rare Book on Disabled Parenting – 01:50

 

BLAIR HODGES: Eliza Hull, welcome to Relationscapes. We're talking about your book, We’ve Got This: Stories by Disabled Parents. It's great to be with you.

ELIZA HULL: Thank you very much for having me.

BLAIR HODGES: So your book exists in part because when you were preparing to become a parent yourself, you spent hours and hours searching bookstores for something that could answer questions you had about parenting. You're a disabled person and you had questions about what the experience might be like to become a parent. Now, there are thousands of parenting books, so many to choose from. Your problem wasn't trying to pick the right one. The problem you faced was you couldn't find one. Talk about that experience.

ELIZA HULL: Yeah, that's right. So I have a condition called Charcot-Marie-Tooth, and I've had that since I was five years old. It affects the way that I walk. It also affects my hands. I fall over a lot. And throughout my life, I guess my parents, whilst they were worried about my disability when it first appeared when I was five and tried to fix it through lots of surgical operations, there was one positive in that they never thought I couldn't be a parent. They always assumed that was something I wanted and could do.

It wasn't until I went to my neurologist, whom I'd been seeing for many years, and I had just met my partner and really wanted to start a family, that I was met with medicalized stigma. He said to me he didn't think I should be a parent. I think that came down to the genetic component of my disability, because I have a 50% chance of passing it on. But he also just thought I couldn't manage. He was worried about me picking up and holding my baby.

And that really set in a lot of vulnerability and shame and anxiety. At the time, I was really just seeking any kind of book I could turn to, to feel less alone in my decision to be a parent, and to know ways to be adaptable—little tips that other disabled parents had discovered—or just to learn what it was going to be like. But when I looked, I couldn't find a book like this. As you said in the introduction, you just get given so many books, stacks of “ways to be a parent.” And yet there wasn't any disabled representation.

I then turned to the Internet and was met with stories often framed in that deficit model—that it would be a negative and a burden for a child to have a parent with a disability. That kind of, “poor children to have a disabled mother or father” narrative. And so that again reinforced the idea that being a disabled parent was a problem, something that ought not happen. That’s why I decided it was time to set the record straight and show that disabled people do make really incredible parents.

BLAIR HODGES: Right. Despite this lack of visibility in bookstores, you point out that in Australia, about 15% of households have at least one parent with a disability. In the United States, it's about 4.8 million households that have a parent with some kind of disability. And yet no books, no discussion. You might find some things online, but there’s a lot of discouragement and stigma.

 

Confronting Medical Stigma Against Disabled Parents – 05:42

 

BLAIR HODGES: And as you mentioned, that also happens in the medical community. You point out here that being a disabled parent is a “rebellious act” because these forces are pushing against you—the medical system and society's assumptions about how to be a proper parent or what a child needs in a parent. Let's talk about that first: the huge force you've already brought up, the medical system. This is a pretty private conversation that you share with us in the book with your neurologist. They told you this wasn't a good idea. When you were in that moment, first of all, were you alone? Were you by yourself or was your partner with you? And how did you react to that feedback?

ELIZA HULL: Yeah, at the time I was alone. I was really just going for a general checkup. I see my neurologist a fair bit to talk about things that are changing with my disability, because it continually changes. I think the first thing I felt was shame. I started to believe him. I thought, “Ah, he's right.”

That's what I had been shown throughout time through the media and the lack of representation—that maybe I shouldn't be a parent, maybe I can't do this, maybe this is a bad idea. Luckily, I had a really supportive partner. When I went home and told him what I'd been told, he turned that around and said, “I just don't believe that. I think we will make a great family.” And now I have two great children that have really turned my life upside down in all the best ways.

But imagine if I had listened. Imagine if I had not gone down that path and instead believed the medicalized stigma and ableism that continues to exist. People are afraid and often turn to this fear-based mentality about what disabled people can and can't do. And often it's very much in that “can't do,” deficit model. Especially when you look at medical professionals—throughout their careers and studies they're taught to fix problems, to change people for what they see as the better.

But actually, life is made up of diverse people. In Australia, 20% of our population have a disability. Instead of looking into that medicalized “let’s fix it” model, why can't we look into fixing the world and changing it so disabled people can exist and live fulfilling lives? The greatest barriers are the attitudes we face and, for me, the physical barriers I face out in the world. It's not how my disability affects me in my home—that's completely accessible, I’ve made it that way. It's when I go out in society and face multiple staircases and paths I can't get around.

BLAIR HODGES: Right.

ELIZA HULL: You know, they're not made with disabled people in mind. So I think it's tricky to change that medicalized model for many medical professionals, but I'm starting to see a real shift, which is great.

BLAIR HODGES: You mentioned how your neurologist was thinking in terms of whether you would pass a condition on, right? And this is something not every parent in the book of essays has to deal with. Some parents are paralyzed in an accident or have a condition that's not genetic that they won't pass on. But yours had a 50/50 chance.

You had your first child, and then when you decided to have a second child, you faced even more opposition. You talk about a conversation with an OB and one with a sonographer who was doing the sonogram, and you got more negativity.

ELIZA HULL: Yeah. I think at that point I'd already had a child, and they still didn’t believe I could be a parent. One person even said, “Well, you won’t be doing this again, will you?” They really didn’t want me to go ahead with the pregnancy.

BLAIR HODGES: Right.

ELIZA HULL: I guess they were always seeking to make sure that my child was non-disabled and, in their eyes, perfect.

BLAIR HODGES: It’s like a weird attempt at preventative medicine or something—which would prevent the existence of these kids.

ELIZA HULL: Exactly. It would prevent the existence of these kids. But also, how can we ever know what a child will or won’t have, or develop, or experience in their life? I think it’s that model of trying to control what happens. For me, the most vulnerable part of being a disabled parent was the possibility of passing on my disability.

In the end, I just had to keep going back to the question: do I want to be in the world? And I have had a really great life. I am disabled and I’ve been disabled all my life, since I was five, so basically since I can remember. I’ve lived a really fulfilling life. In fact, I’d go as far as saying that being disabled has made my life better. I am a singer, and I feel like it’s given me a broader sense of what the world is. It’s given me more emotion, feeling—I understand a different perspective. I love to advocate for others. I feel like it’s enabled me to see how wonderful diversity makes this world. For that, I’m thankful for having a disability.

As I said, the greatest obstacles that I and all the parents in this book face are generally out in society—when we go to medical appointments, when we go out in the community and we’re ridiculed, stared at, laughed at, or when we face physical barriers in a world not built for us. That’s why it was hard to make the decision to have a child. Part of me knew what world I was bringing them into. A world where, if they were disabled, they would face discrimination. A world where, if they were disabled, they might not be able to move around like non-disabled people. But ultimately I came back to remembering who I am and knowing that I am the best person to make this decision because I’ve lived it.

 

A Positive Experience with Medical Professionals – 12:47

 

BLAIR HODGES: The book has so many instances of that kind of strength—people taking a similar journey that you did, questioning whether they could be parents, wondering how it was possible, facing opposition, and making the decision to become a parent anyway. I guess maybe I shouldn’t have been so surprised how often negative comments would happen, or how often people described being laughed at. It’s painful to read the experiences of these parents and the stigma they’re facing. I’m thinking of Cathy—apologies, I don’t know how to pronounce her last name. Reay ?

ELIZA HULL: Cathy Reay.

BLAIR HODGES: Ray, okay. She was basically asked straight up by her doctor if she wanted to keep her baby who had dwarfism like hers. She was already pregnant, and the doctor said, “Do you want to keep this?” To a person who has that condition! Which is basically saying, “Are you even worth having around in the world?” It’s shocking. Some of these stories are pretty shocking and eye-opening for me, as a generally able-bodied person, to know the kinds of things people are hearing. What about on the flip side? Were there any stories in the book where people had a positive experience with medical professionals—supportive experiences, rather than negative?

ELIZA HULL: Yeah, I think you’re spot on about Cathy’s experience. When I spoke about discrimination in society, she was one of the parents I was really thinking about. Being short-statured and having dwarfism is, in my opinion, one of the most discriminated, ridiculed, and stigmatized disabilities. Often it’s seen as a joke or made fun of. Historically, we’ve seen people with dwarfism portrayed as the “seven dwarfs” or as comedy jokes in films. That has fed the idea that having achondroplasia or dwarfism is a real negative. When actually, Cathy is a successful writer with a brilliant life and family.

So again, it’s these misconceptions that feed into ableist ideas about what disability is or what the experience of disability is. But there are positive stories too. One in the book is by Dani Izzie, an American mother who had a really positive experience with her medical professionals. She’s a quadriplegic and wheelchair user. She wondered whether she should be put into what’s called a “high-risk pregnancy.” She was given a choice, and she ended up deciding to go into the high-risk category. In the end, that was fitting because she had twins—and if you’re going to have twins, you’d have to go into that high-risk space anyway.

Throughout the whole pregnancy, her doctors were so supportive. They constantly told her, “You’ve got this, you can do it.” They gave her a lot of choice, freedom, and support. When I spoke to her for the book and asked what it was like in the medical space, I was pleasantly surprised that she came back and said it was absolutely fantastic. To be honest, it was potentially one of the only stories that came back like that.

BLAIR HODGES: Yeah, it seemed like the exception to the rule. We’ll come back to Dani in a little bit because her story is powerful—as all of them are. Preparing for the interview is difficult because every contribution to this book has something unique to offer in addition to hitting common themes like the ones we’re talking about already.

 

Thinking About Genetic Conditions – 16:52

 

BLAIR HODGES: You mentioned fears you had about the possibility of passing on your genetic condition to your children and you're a proudly disabled person. You've enjoyed your life and you said that you're in some ways have a certain gratitude about the things you've learned from being disabled, which isn't to dismiss the difficult things about it or to ignore the social stigmas against it or the obstacles that it raises. But you still had enough sort of internalized ableism to worry for your children and not necessarily want them to have that same thing.

And so people would wonder, like you have the kids, did your condition pass on and have you talked with them about whether it could have or whether it couldn't have? You know, how has that worked out?

ELIZA HULL: Yeah, I think that I would be lying if I said that I don't. You know, there's nothing part of me that is wondering. So I've got two children now, an eight-year-old and a three-year-old, and they're both not showing any signs of my disability. And saying that, my disability is one that can happen at any point in your life.

So for me, my symptoms started happening at age five, but you can develop my disability at the age of 10, 15, 20. Sometimes people don't ever show symptoms even though they're a carrier. And some people might start to develop symptoms at age 60. So we're unsure at this point in time. The only way that I can test for this is through a—what I class as a very horrible test. It's like electric shocks that go—you have to go through your system to be able to see if you have nerve damage.

As a child I remember having these nerve testing and it was traumatic and just really a lot of pain and confronting as a child to not really know why. And so I think I don't want to put my kids through that. And I would only do that if they were showing symptoms. And I'm even unsure if I would do it at that point just because it is what I remember. So—such a traumatic, painful experience.

BLAIR HODGES: I'm thinking of other parents too that kind of had the same worry. Sam Drummond is one, he's another person in the book who has dwarfism. And he talked about the experience of dwarfism in ways that I hadn't encountered—that it can be very physically painful. He talks about walking around his neighborhood and the kind of physical pain in his body and his joints, in his arms and legs.

And he's really candid about worrying about his own daughter's experience of pain and physical pain and also emotional pain and the sort of social stigma that she'll face. And he says this is his moment of great doubt. Here's a quote from him. He says, “Can I feel this grief and also still be disability proud?”

So to be proud of who he is as a person, but also grieve the fact of the pain and the fact of giving that pain to a child. And wrestling with that. I see so many people in your book and you yourself seem to have had that same question of, like, can I experience this grief and let it be what it is, but also be proud of who I am?

ELIZA HULL: Yeah, I think that you can. That's my answer to that because I see it taking place through these disabled parents and I feel it myself. And I think that as, you know, human experience, I think we can feel both shame and pride at once.

And, you know, I think as a disabled person, when I walk into a room, I can feel really visible in that people look at me. Some people laugh—generally groups of men for some reason think it's a funny idea to have a laugh. But I can also—whilst I can feel very visible, I can also feel very invisible in that I can feel like people don't know how to speak to me, or don't, or sometimes I'll have people speak to my partner instead of me. Like say, “Does she need a chair?” Or, you know, instead—I'm right, I'm right there.

And yet—yeah, yeah. So I think as a human we can feel, you know, two very contradicting experiences at once. And I think that is very true, especially when we think about the people that we love. And as I said, you know, that I think it can feel like you can feel guilt if you pass on your disability. But I think that that guilt, as I said, comes from the world we live in most—for the most part, the world, the inaccessible, ableist world that we live in.

So I think we—when we fear our children's experiences, we just want our [children] to live fulfilling, happy lives and to live in a world as a disabled person that is hard and has barriers. I think that that's where the fear comes from. So I guess that's where I find my passion—is trying to eliminate, or at least change, if I can, some of these barriers that we face by, you know, having representation of disabled people and disabled parents and showing, I think, makes for a kinder world.

 

Helpful Kids – 22:31

 

BLAIR HODGES: That's Eliza Hull, editor of the book we're talking about, We've Got This: Essays by Disabled Parents. I really enjoyed seeing the parenting that the parents are doing. It wasn't just a book about the decision to become a parent or the kind of obstacles that are faced in that quest, but also just what it was like to be a parent.

For example, there are some parents who didn't want to make their children have to perform caregiving roles unnecessarily or whatever. I'm thinking, for example, of deaf parents Brent and Mel Phillips. They don't expect their hearing kids to interpret for them, for example. So there's this negotiation that can happen—a parent with disabilities—where in some ways they might lean on their children or rely on their children, and in other ways they want to give their kids independence and not give their kids the sense of obligation toward them or sort of, quote, burden them with, you know, caring for a parent.

So talk about that tension a little bit and how you've experienced that, and what you learned in talking to other parents with disabilities.

ELIZA HULL: Well, I realized, you know, I think that what Brent is… it's so important that we are, like, as disabled people, we all feel and experience the world differently and we all have different opinions. And that is what I think is so incredible.

You know, I think it's important to say when you meet one disabled person, you meet one disabled person. Like, you're not going to meet… yeah, you just—we all experience the world differently.

And I think Brent's experience is extremely valid because, you know, he—him and his partner are both deaf, both his children are hearing, and he doesn't want his children to have to interpret for them. He wants to show his children that he's capable, because he is capable.

He's a CEO of an incredible huge organization here in Australia. He's, you know, part of parliament in advising the disability minister. He is a football lover. He's, you know—he's just a great person. And I think he shows so well what a deaf person can and does achieve in this country that I live in.

But I think I realized that this kind of idea that a child shouldn't take on any caring responsibilities is kind of, in my opinion, a little bit ableist. I realized that I'd kind of been fed this lie—that to have a child care for others was like I wasn't fulfilling my role as a parent. I wasn't good enough, actually.

So whereas I see it as like: I'm still the parent, I'm still capable, I do it, you know, everything for my children, just like any non-disabled parent would. But there is something really beautiful—as I'm crossing the road and my daughter is holding my hand and telling me, you know, to watch out for the step ahead. Or, you know, sometimes she might move the toys on the floor because she knows that I might trip on them.

That, to me, is building a very compassionate, kind human being that I'm seeing play out in her schooling, where teachers are saying that she's just a very caring, inclusive person. So I just think it's building my child's capacity to be a good person.

I don't see it as a burden on her. I see it as the opposite. I see our family showing her a way in the world that is just ultimately very kind and thoughtful of others.

So I guess when I started to worry about those things, it made me realize that maybe that was just due to thinking I had to do it all—or if I had help or support, that I was somehow less than.

But I think, you know what I do also love about Brent's example of his not wanting his children to interpret for him—he actually speaks about his child wanting to interpret for him. You know, for instance, when they're going to pick up takeaway food, his daughter says, "Please, please, can I interpret for you?" Like, she loves it.

And they're actually now learning sign language at their school. And, yeah, the two children have been brought up learning both Auslan—sign language is called here—whereas it's called American Sign Language in America.

Yeah, learning Auslan as well as learning English at the same time as children, and how that's just, again, built up their capacity to be great communicators in two beautiful languages. So now they're actually the teachers of sign language—helping the actual teachers at school.

So it's wonderful that by learning sign language at school, their family is less stigmatized. And I think there are a couple of stories in the book where it shows just how, you know, if you have that representation in school and learn about disability, that you start to reduce the stigma that people face.

 

Teaching Kids About Disabilities – 27:44

 

BLAIR HODGES: I also enjoyed reading parents’ stories about their own curious kids and how their kids reacted to disabilities and learn about it as they grow. Your young daughter asked one day, "Mommy, why do you walk like a penguin?" She's learning about your disability and just asking you such a sweet question.

And we see kids throughout the book that are learning about their parents’ disabilities, and it's not always all at the same time. And some parents kind of don't talk about it as much compared to other parents. I'm thinking of, like, Jasper Peach, who's a queer parent with fibromyalgia, and they're sort of like, "I'm not sure when I really want to unpack this with my kids."

And then other parents couldn't hide it if they wanted to—your daughter asked about the way you walked, for example. And so we do get to learn about different conditions and different parents and different people, and how they talk to their own children about disabilities.

As you were interviewing different people or going through different stories, did it shed light on your own parenting? What are some of the things you learned as you encountered different parent–child interactions and how they learned about their parents’ disabilities?

ELIZA HULL: Yeah, I think that it was, as you say, it was such a beautiful experience when my daughter noticed for the first time. And instead of seeing it as, like, tragic, she saw it as just, "Ah, why do you walk like a penguin, Mum?" And then, you know, we had a laugh together and then I explained it.

And some other children, you know, noticing it—like, for instance, two deaf parents, Brent and his children, they actually just started to tell their parents when someone was at the door before they had a visual cue. When someone comes to their door and the alarm—you know, the doorbell goes off—they have a flashing light. But sometimes the children would actually tell them, "Oh, someone's knocking on the door right now."

Or they would tell, you know, somebody—they also had a buzzer that they would wear and it was a vibrating alarm if one of the babies at the time was crying, it's called a cry alarm, and it would buzz if the baby was crying. But sometimes the other child would say, you know, just before it started to buzz, "I can hear the other child crying."

And so it was like, yeah, starting to realize, "Oh, my parents can't hear," or "My parents can't see." And I think what every story shows is that it just becomes normality, doesn't it? Like, it doesn't change anything. Yeah—it just is. It's just quite neutral.

The way kids see it is neutral. They don't see it as the best thing, most positive thing, but they also don't see it as a negative thing. They just see it as what their—how their family exists in the world.

And I kind of really appreciate the way children see disability. I think that fear and stigma of disabilities is often learned over time and taught over time. So I think seeing it from children's eyes, it's a beautiful thing.

 

When Kids Absorb Stigma – 31:01

 

BLAIR HODGES: It is a really beautiful thing. There can also be some growing pains along the way. It's tragic when the societal stigmas get picked up by the children themselves and changes how they see their parents. There's this heartbreaking story in the book written by Micheline Lee and she's an Asian woman raising a boy who's white, which she says already raises some eyebrows because it's much less common to see an Asian parent raising a white child than to see a white parent who has an Asian child.

And I mean, it's also appearance based, but Micheline also uses a wheelchair. She tells a story that happened one day when she arrived at her child's school to pick him up and she accidentally tipped out of the chair onto the ground and she was stuck there. And off in the distance she could see her child and her child saw her. And she saw that her child saw her and he looked ashamed. And he didn't come over to help her, he just left her there on the ground.

This is a young child absorbing stigmas around disability and then feeling shame about it, not knowing exactly what to do with that shame. It's such a heartbreaking story.

ELIZA HULL: Yeah, it is like she is an incredible writer and when I read her story, I cried. And in fact, I. Every time I read it, I cry. I think that when you are just truly vulnerable. Yeah, it just is so beautiful to read. And she doesn't hide anything in her writing. She really speaks from the heart.

And yeah, I did wonder whether, I think, you know, as you grow up as a child, like, you start to at times pull away from your parents, don't you? And I think that my parents didn't have a disability, but I still felt that. I still kind of was like, oh, mom, don't drop me right at the front so everyone can see.

You know, I think that, yeah, like, I think there is that time where you just start to want to feel that independence. So I guess I think as disabled people, we can be really hard on ourselves. And I think that we, over time and over the years, due to like the stigma that we have faced and the staring and the laughing, we feel a lot of shame.

We feel a lot of internalized ableism. Sometimes we are afraid of who we are. And I think that really comes through in Micheline's story. And, you know, I'd be. I'd be curious to speak to her son now and say, yeah, whether he remembers that experience and why he didn't want to go near her at that time.

And I, you know, who knows? But I think a lot of it can be just, you know, that feeling of when we're around our peers as young people wanting to fit in and to have a parent that might, you know, look or act slightly different can be hard as a child because we, as children, we do just want to fit in, don't we? We want to be accepted.

BLAIR HODGES: And for Micheline to kind of tell that story, there's a temptation there to make some huge, big revelation about it, or to use it to kind of teach a point. It seemed like she. She just wanted to share that experience of hers. And she wasn't necessarily trying to be inspiring with that story, but rather just to explore what it's like to be a parent with a disability.

 

Inspiration Porn – 34:21

 

BLAIR HODGES: There are other people in the book, like Nina Tame, for example, who talks about the problem of having to be inspirational by default. This idea that if you're a disabled parent, people are going to say things to you. Like, they might be an improvement on the sort of negative comments people get, but it'd be like, aren't you a hero?

Or like, look at you go. You know, sort of trying to encourage you. Which is also sort of its own ableism, sort of condescension about, you know, I'm just a person going about my business. I really don't need applause from. From onlookers here. So the pressure of being inspirational by default is another thing that parents with disabilities face.
And that's one that I hadn't really spent a lot of time thinking about myself. So that was eye opening.

ELIZA HULL: Yeah. An incredible Australian disability advocate who has unfortunately passed away, Stella Young, coined the term inspiration porn. And that is when you, yeah, are told that you are inspiring just for doing very ordinary things. For instance, Stella was nominated for an award as a young person, and she was like, what have I done?

Like, all I've been doing is at the time watching, you know, Buffy the Vampire TV episodes after school and coming, you know, going to school and coming home and doing not much. Why would I be nominated for an award? And I think that's. Yeah, I really liked that analogy. And I think as a parent, it can feel like that.

Just. I think it was about two days ago, I was just down the street with my kids and someone came up to me and said, God, you do so well. You just. You do. You're amazing. It's like, I looked around, I'm like, all I'm doing is going into the shop like everybody else with my two kids.

BLAIR HODGES: And you're used to, like, this is your life, you know?

ELIZA HULL: Yeah, I didn't. It didn't feel remarkable at the time.

BLAIR HODGES: Yeah.

ELIZA HULL: But I guess that, again, is. Is that media representation is that disability has been really seen as tragic so often it will be like, you'll see an advertised, you know, ads or movies where someone will have an accident and, you know, their whole life is tragic. It's over. The life as they knew it is gone.

You know, it's really seen in that kind of doom and gloom. Or it's often portrayed as that real, like inspirational, like they're just so incredible, aren't they? And often it is the, you know, seen as the disabled. It's seen as that othering language of, you know, people over there, not people within our community.

It's very kind of othering language and often euphemisms like special or handicapped or differently abled, just giving it a go, just trying, being incredible. And often we're just living our lives and doing very ordinary things. I think that we can be inspiring. But, you know, I see us inspiring when we do incredible, inspiring things like when we're sports people or great musicians or artists or doing things that are remarkable, not just living ordinary daily lives.

 

Burden or Supercrip – 37:38

 

BLAIR HODGES: Yeah. This reminds me of Lucy and James Catchpole. They talk about this too. They're a disabled couple, so both of the parents are disabled. James is an amputee and Lucy uses a wheelchair. And wow. To see Lucy talk about what it's like to see people interact with her partner. And they'll say things to him like, aren't you incredible?

Aren't you amazing? Because here you're this amputee and you're really carrying the load for your family, which is to. For her, what she's really hearing is, wow, isn't Lucy such a burden? Isn't Lucy such a problem and a drag and what a hero you are for pulling her through. And so she talks about this tension between what's been called the Supercrip, which is sort of this like superhero type person with a disability who's so incredible versus being a burden.

And that there are expectations put on people with disabilities to perform one of those roles, to accept the role of Supercrip and really live it out to inspire people or to accept that you're just a burden and a problem for other people. And in their marriage, it's happening between partners because one of them is being perceived as a Supercrip and one of them is being perceived as a burden.
And that, that story, I think, really, really gets at the heart of that dynamic of Supercrip versus being a burden.

ELIZA HULL: Yeah, you're spot on there. And I think they, they, yeah, they share that experience so well. Don't know it. Their story. And in fact, they've just written a children's book called You're So Amazing. And it's about a boy. Yeah, a boy with one leg. And at school people just keep saying how incredible he is, but he's just like the other child.

He's just doing ordinary things and just what that can feel like to be seen as the, you know, inspiration poster child. When you just feel like every other child. Yeah, it can feel. Yeah. Really patronizing, actually. And it did the other day when. When I experienced that because I was just being very ordinary at the time.

BLAIR HODGES: Right. It's like you don't need those extra kudos. You don't need that pat on the back. You need a door that opens automatically or a curb cut that allows you to walk to a place. You need accessibility. You don't necessarily need cheerleading. You need changes in the physical environment that make it better for you to get around. That would be a lot better than any sort of applause that strangers might give you on the street.

ELIZA HULL: Yes. Spot on. If you're feeling that passionate and inspired, why don't you then look at your local community? Or look at your workplace or the building and think, well, why don't we make some changes here? I think it's spot on.

BLAIR HODGES: Yeah. Right. Yeah. That's Eliza Hull. And we're talking about the book *We've Got This: Essays by Disabled Parents.* And the subtitle says it all—it's full of essays by disabled parents. These are fantastic explorations of what it's like to be a parent who's deaf or blind or a quadriplegic or someone with dwarfism or autoimmune disorders. All kinds of parents with all kinds of disabilities, all of them talking about what it's like to be a parent and how parenting works for them.

 

Parental Vulnerabilities – 40:53

 

BLAIR HODGES: Let's talk about vulnerabilities. A lot of the chapters discuss, as we've kind of covered so far, how built environments make it difficult and how they have to be really adaptive in certain ways to raise their kids. And Cathy—we talked about her a little bit earlier—she's a single mom with dwarfism and she talks about the fierce love that she has for her kids. She says she doesn't regret becoming a parent, but she also candidly says that she wishes that she had a better understanding of what it was going to be like ahead of time. A more realistic look at what it would be like to become a parent.

I think that could be a scary confession to make, to say, yeah, I'm glad I'm a parent and I'm doing this thing, but also, wow, it is actually really hard and it's a lot different than what I thought it would be. That's a different story than “look at me go, we can do this, anyone can be a parent.” That kind of confession of vulnerability stands out in the book. And a number of people you include here express that vulnerability.

ELIZA HULL: I think that's a universal experience of parenting. The way that we live in society now is isolating to be a parent. We don't live in community where we feel held. We don't have that kind of tight-knit family that we live with anymore necessarily. And so it can be a very lonely experience to be a parent, whether you have a disability or not.

I think Cathy's really beautifully put it—that it is hard. And just because we do parent and can parent, in my opinion, I know I say it in my chapter, actually I feel like we as disabled people are set up to be parents because we have lived in inaccessible worlds where we constantly have to adapt. For instance, when I go into a building, I have to scan the building and go, okay, there's a step there, I have to hold on to that to get up. I can see an accessible toilet, but I have to move that cleaning equipment to get through the door. You're constantly having to look at a world that isn't built for you and navigate it and problem solve and be flexible. Parenting really requires all of those skills.

I think we also can be quite hard on ourselves because at times we are set up to fail by medical professionals and we feel like we have to prove ourselves. So when people question whether we have the ability to parent or whether we're going to make good parents, I often say yes—we are so set up for it and we are so willing to give it all we've got because of that fear, that our children will be taken from us, which still happens worldwide to many disabled parents.

But I still think what Cathy said—that she wishes she knew how hard it was—is very true. And I would go as far as to say that's across the board for all parenting.

 

Government Surveillance – 44:23

 

BLAIR HODGES: Yes, it certainly resonated with me. I also liked how Dani put it. We mentioned Dani a little bit earlier—she's the mom of twins who's quadriplegic. And here's a quote from her. She says, “I believe when it comes to talking about the challenges of parenting with a disability, we need to have a space for it. It's emotionally difficult to share the challenges because I'm often afraid people will judge me or discriminate against me. Like, they'll finally catch me out and say, ah, see, you can't do it all.”

And as you mentioned, that fear can be very grounded in reality. I'm thinking about parents with intellectual disabilities in particular, which several of your chapters cover, and one couple in particular where Child Protective Services was going to get involved and question their right to even have their children—which would be terrifying. Maybe spend a little time on those experiences.

ELIZA HULL: Yeah, what Danny speaks about, I think, is for me what the online space has been. Having this book, having now an online space where we interact as disabled people has just been so incredible—to have that community where you can share little hacks or little ways that you do things, how you can adapt. You know, I might say to them, “How are you getting your child out of the cot? Is there any way that I could do it?” And we just kind of bounce ideas off each other. So that’s been a really beautiful space and a space to let our guard down.

I think what Danny said is so true: the fear that we’re going to be caught out or that we’re going to be seen as not capable is really hard. And as you said, parents with intellectual disability have this times a million. And often, as we’ve mentioned, parenting is complicated and hard and isolating. But when you have an intellectual disability, there are obviously added complexities.

What I think is still so problematic is just lack of support. Parents are, in my opinion, really set up to fail because they’re being watched, they’re being discriminated against, and they’re not being given any adequate support or education to be able to look after their children. What often happens is that parents feel really overwhelmed.

And, you know, there are times when you are not going to get everything right, and that happens to all parents. Like, I remember when I brought my first child home, I was like, “Gosh, how do we do this? We haven’t really been taught. Do we wake her up? Do we let her sleep?” You don’t really have the answers. So when you have an intellectual disability and you’re not given any support, you’re not given any help, you’re not given any education—you’re just kind of set on your way—it’s really, really challenging.

And, yeah, as you said, often children are taken from their families. We’ve got this family that share their experience of having to go through the court system to be able to keep their child, and having the judge within the court system say to them that he was just so apologetic that they had to even fight for their right to keep their child. They obviously were discriminated against, and they have proven over time that they are competent, incredible parents. I know that family really well and their child is thriving and doing so well. They have a great support network around them—their parents live right near them on both sides—and just a really successful family.

So the fact that they had to constantly be monitored and watched and often stigmatized and discriminated against and then fight to be able to keep their child is really appalling. For me, it just feeds into that discriminatory, ableist view that we don’t make great parents or we don’t make competent parents, when we actually have proven that we do. That family is a great example of turning it around, but it took a huge toll on those parents.

There’s also another family in the book, Ricardo and Donna. They’re American parents, and I think their experience was really great for me to see, because they were more supported. While they still faced some discrimination and stigma, they felt like they weren’t set up to fail—that they were actually supported by the people around them. They’ve just had a great family, and their son now has his own children.

So I think we do see people with intellectual disabilities make great parents. But what we need—and I think this is across the board for all parents—is support. What we need is education as well.

 

Focus on Structural Issues – 50:10

 

BLAIR HODGES: Right. We need to focus on structural solutions, not just individual ones. And this is a recurring theme on Relationscapes. I'm thinking, for example, of Angela Tucker's episode on adoption, on transracial adoption, where she talks about how, as societies, we often decide to invest a lot of money in certain ways—for example, toward the adoption system itself—and we're willing to pump some money into that to help children become adopted. But we're not as willing to invest on the other side of that, to help parents who otherwise wouldn't want to send their kids away, who wouldn't want to have their children adopted by other families.

So we wouldn't have as many kids being removed from homes to begin with if we would invest on that other side. If we would address the structural issues impacting those families, we could invest in better supportive safety nets for families. That could be a whole episode in and of itself.

ELIZA HULL: Absolutely. I think you're right. The more funding needs to go into more support so that we don't set up these parents to fail. I think it's important to note that there are going to be times when it is unsafe for a child to be with their parents—but that is whether you have a disability or not.

BLAIR HODGES: Right.

ELIZA HULL: There are some parents where it is just unsafe for that child to be with that parent.

BLAIR HODGES: It's more likely, when someone has a disability, for the system to say, “Oh, this is unsafe, let's remove the kids,” rather than, “This is unsafe, and let's figure out how to make it safer.”

ELIZA HULL: Exactly. Yeah, exactly. I think you're right. It just feeds into the discrimination that we as disabled people face.

BLAIR HODGES: Basically. “Oh, they shouldn’t be parents anyway. Let’s remove them.”

ELIZA HULL: Exactly.

BLAIR HODGES: Let's talk about strengths here more than the vulnerabilities. What really stayed with me from this book is how normal so much of the parenting here is, how relatable so much of it was, and how adaptive disabled parents can be with their own kids. So many of your contributors talked about navigating this ableist world.

And, like you said, you've had to exercise problem solving that’s helped you be a better parent, be more adaptable, assess the situation, and come up with creative solutions. That also doesn’t turn people with disabilities into simple object lessons or inspiration-less heroes.

But I have this quote that you wrote in the introduction, where you say, “The stories in this book show us how rigid the conventional template of parenting is, and these parents display an inner strength that any parent would envy and could learn from.” So the adaptability, creativity, and energy of these parents with disabilities is something that any parent, with or without disabilities, could benefit from taking a look at.

ELIZA HULL: Absolutely. Yes. I think you're spot on there. I think it's odd that we think parenting has to look a certain way, that it has to fit a certain template, and if you go outside of that, it’s problematic. What each parent is showing the reader is that, yes, we might do things a little differently, but we do things successfully, and we have skills we’ve learned over time—or even just recently, if we’ve acquired a disability—that make us more successful as parents.

There are things I do differently. For example, there were times when I knew it might not be safe for me to hold my child and go down the stairs. So we would make a game of it, and we would go down one by one together, having fun and singing a song as we were doing it.

Sometimes I don’t walk very fast at all, but that has enabled us to notice nature or look at the flowers. I’m also really patient because I would have to sit. I was a wheelchair user throughout school and had many medical appointments, so I had to be patient and wait a lot. That has built my ability to just be patient with my children.

I try to see the real positives we provide, but I think the biggest positive is what the children we are creating—through having a diverse family, whatever that looks like—are becoming: resilient, kind, thoughtful, and open. Children who have learned that through having a disabled parent.

BLAIR HODGES: That’s Eliza Hull. She’s editor of the collection We’ve Got This: Essays by Disabled Parents. She’s also a contemporary musician, disability advocate, and writer based in regional Victoria, Australia. She’s been published in places like Growing Up Disabled in Australia. She has a children’s book titled Come Over to My House. Her music has been used in TV and film. She’s also received awards for her music: the Arts Access Australian National Leadership Award, the Women in Music Award, and the Music Victoria Award. So a lot of music, writing, and disability activism.

Eliza, before we go, I should also say there’s a ton of stuff in the book that we didn’t even have time to touch on. There are chapters that deal with the loss of children, infertility, IVF, and a lot of different disabilities that we couldn’t touch on today. People really need to check the book out to get more of a sense of what we missed.

 

Regrets, Challenges, & Surprises – 55:51

 

BLAIR HODGES: I want to end with our segment that we always end with. It’s called Regrets, Challenges, & Surprises. This is when I ask the author to talk about something they regret about the book now that it’s out, maybe something they would like to change, or they can talk about achievements, challenges, or what the biggest challenge was in putting the book together. They can also talk about something that surprised them in the course of making the book—a big takeaway, something unexpected.

You can speak to one, two, or all three of those. It’s kind of a choose-your-own-adventure: Regrets, Challenges, and Surprises.

ELIZA HULL: I guess the biggest challenge was there are just so many disabled parents out there in the world and so many interesting, unique stories. I wanted to make sure that I had a real cross-section of people of colour, people that were identified as queer, varying disabilities as well, to make sure, you know, disability doesn't just look like a wheelchair user, doesn't look like one thing.

Sometimes disability can be more, you know, I guess more invisible. Like people have chronic health conditions, people are autistic. So trying to make sure that I had a real cross-section of various disabilities, it weighed heavy on me. At night I would go, how can I only have this many stories when so many people were reaching out to me saying, "Can my story be in this book?"

So I think that that was my challenge, but I feel like I got a good mix of people from various locations, varying disabilities, and, yeah, different minority groups as well, to make sure that it was representative of people in the world that have a disability and are parents.

One of the other biggest challenges was the name of the book. So I'm unsure what it's like in America, but here in Australia, we sometimes still today use person-first language. So we say "people with disability."

BLAIR HODGES: Yes. That's the most common in the States.

ELIZA HULL: Okay. It's only starting to really shift now where we're seeing "disabled people," and that is identity-first language. And so I was really nervous about saying Essays by Disabled Parents instead of "Parents with Disabilities." I was nervous that whatever I did, I would get pushback or people saying that that wasn't reflective of their identity or experience.

BLAIR HODGES: Yeah.

ELIZA HULL: But in the end, I decided to choose the one that, in my opinion, was pushing up against ableism, pushing up against this idea that we should hide, that we should fear our disability, that we should fix it or make it go away, and instead choose a label that is part of who we are.

We are disabled by our world that we live in. We are disabled parents. And that's not something that we should feel shame or fear of. So I chose the kind of bold title. That didn't come easy. I was very nervous, and I'm definitely someone that thinks too much. I was nervous about going down that path.

But to be honest, I've not heard one person push back on it, which is, I guess, a telling sign of the time that we're living in, where we are starting to really put our identity first and not see it as something that ought to be hidden.

Because really, person-first language came from a time where we were really othered. It was often, as I said earlier, "the disabled," or "special," or "handicapped," or worse. A lot of disability slurs were used. And so people had to fight for, "I'm a person. Remember, I'm a person." Whereas now, I don't think we need to remind society that we're people. We are. You know, we were kind of moved past that. And so to have our identity up front and center feels like a powerful statement.

BLAIR HODGES: Yeah, I think that's a really important conversation because I can see so many sides of it. On the one hand, I know some people don't want to be called a "disabled person" because they say, "Disability is part of who I am. And if you call me a disabled person, that seems to put more weight on the disability than I want there to be."

But like you said, on the other hand, to say "person with disability" could also be reflective of a certain shame around it or a certain stigma that still surrounds what it's like to be disabled. And so, like you said, I can see different sides of this.

And frankly, I sort of chalked it up to maybe a little regionalism, too. I was like, okay, I know in the United States, and I've done disability studies in graduate school, and it was certainly person-first. Where I've seen the most pushback against that is in the autistic community, where most people in that community certainly don't want to be referred to as "a person with autism." They're like, "What are you talking about? I'm autistic."

So that's really in the United States, at least, where that sort of identity pride exists, and there's not a reluctance there that we see in, I think, some other places. And I think the biggest thing for me is I just try to be tuned into what the communities themselves are saying, how they're representing themselves, and just be responsive to that.

So, to anyone who gets exhausted by all this, wondering why we have to even care or worry about it: It's because we respect people and we want to honor their identity and talk about them in ways that are comfortable for them.

ELIZA HULL: Exactly.

BLAIR HODGES: And it's ongoing. I don't think we're going to hit the one true label that will always be true for all time. So I think being flexible with it matters. But that was a bold choice, and I like it. I think it definitely is representative of the voices you've gathered in the book, which is a collection of vulnerability, but also a collection of pride. Both of those things certainly exist here with these parents.

ELIZA HULL: Absolutely. Yeah. I don't regret it.

BLAIR HODGES: Well, thank you so much, Eliza. This has been great. And like I said, we barely scratched the surface. I hope that people will check out the book, We've Got This: Essays by Disabled Parents. There's a ton to learn in here—not just about what it's like to be disabled, but also for parents in general, or for people that just want to know what parenting is like, people who aren't parents, people who don't want to be parents.

There's just a lot here, a lot of different experiences, and I enjoyed every page of it. I really did.

ELIZA HULL: Thank you so much. Yeah, I agree. It's just human stories that are quite universal. And I really appreciate it when a lot of people say, "I'm not a parent and I'm not disabled, but I absolutely love this book."

BLAIR HODGES: Well, thanks for spending the time with us, Eliza. I really appreciate it.

ELIZA HULL: Thank you.

 

Outro – 01:02:42

 

BLAIR HODGES: Thanks for listening to Relationscapes. Do you have a story about being a disabled parent? I would love to hear about it. My email is blair@firesidepod.org. You can also DM me on Instagram.

And if this episode interested you, I also recommend checking out Jessica Slice's episode, “What Disabled Parents Can Teach Everyone About Parenting.”

I would love it if you would do me a favor and rate and review the show on Apple Podcasts. Reviews are harder to come by lately. I'm not seeing as many come in—maybe everybody was too busy soaking up that sweet summer sunshine—but I want to see more reviews. Send them on in. Go to Apple Podcasts, search Relationscapes, scroll down and go to Rating and Reviews. You can put it in right there. You can also rate the show on Spotify. It's really easy to do it there. That place is kind of hopping right now. I'm seeing a lot more ratings come through Spotify than I am in Apple Podcasts, and it's usually the other way around, so keep that going.

Mates of State provides our theme song. Relationscapes is part of the Dialogue Podcast Network. I'm journalist Blair Hodges in Salt Lake City, and I'll see you again soon.