What Disabled Parents Can Teach Everyone About Parenting (with Jessica Slice)

Apple Podcasts  |  Spotify  |  Other Apps

 

Intro – 00:00

 

BLAIR HODGES: Welcome to Relationscapes. We're mapping the stories and ideas that shape who we are and how we connect with each other so we can build a more just world. I'm journalist Blair Hodges, and our guide in this episode is author Jessica Slice.

JESSICA SLICE: At that point in my life, I was a runner, I was extremely active. A business owner. I really just didn't think of my body as something that could fail or would fail. And then I woke up and couldn't get out of bed. I was extremely dizzy, and I ended up never feeling well again.

BLAIR HODGES: Before becoming disabled, Jessica was building a business, running miles every day, chasing perfection. Parenthood didn’t fit into that life, especially because Jessica was sure she’d never measure up. But when her body collapsed at 28, everything shifted. Disability stripped away the life she knew, and uncovered something unexpected—she wouldn't have to be perfect to be a mom. But unfortunately, she would have to fight to become one in a world designed to exclude her.

Her new book is called Unfit Parent: A Disabled Mother Challenges an Inaccessible World, and she joins us right now to talk about why we've got to make the future of parenting more accessible, and why everyone will benefit when we do.

 

Disabled Parents on the Defensive – 1:43

 

BLAIR HODGES: Jessica Slice, welcome to Relationscapes.

JESSICA SLICE: Oh, thank you so much for having me.

BLAIR HODGES: At the beginning of these interviews, as a journalist, I always want to start with something to grab a listener’s attention and say, like, this is worth your time, because introductions really set the tone. I loved your introduction because you're kind of wrestling with the decision of how to begin this book. What was going through your mind? What options did you have?

JESSICA SLICE: My first instinct, which wasn't my best instinct, was to start the book with a defense of all the times I have been crucial in my eldest child's life. I wanted to start the book with kind of this defensive posture of, “I'm disabled, but let me prove to you why my child is lucky to have me.”

And when I thought about it more, I realized that I really don't like smelling defensiveness on other people, you know? I think you can really sense the emotion or the intention behind words. And I wanted to do my best to not go in, like, trying to prove myself.

So I took the approach of starting the book describing, I think, not an entirely flattering scene of me parenting, which is just playing very old video games on the couch with my kid.

BLAIR HODGES: Super Mario. You can name drop on this podcast.

JESSICA SLICE: “Sponsored by the 1987 game, Super Mario 3.” [laughter]

BLAIR HODGES: Yeah, sales are gonna skyrocket.

I loved that scene, though. I mean, I think some people might judge that kind of parenting, like, “oh, here's a mom just laying around playing video games with their kid. That doesn't seem like great parenting.” But I think it's just—it can be a part of great parenting.

To me, it seemed just sort of a mundane kind of thing, kind of fun thing you can do with your kids. Maybe that's because I'm a guy. Maybe my male privilege has put me in the position of more often being the fun parent who might want to play video games or something.

JESSICA SLICE: Mm, that's interesting. And I think as a disabled parent, I feel a need, or like a push from society to show that I'm as good or better than other parents and not doing something like just sitting on the sofa.

BLAIR HODGES: And you say you also want to include some of the difficult stuff, the bad stuff, the unflattering stuff in the book. But that can be scary, especially for a parent who's disabled. Talk about what kind of fears might arise.

JESSICA SLICE: Well, you know, a big part of the book—and something I really don't talk about much until the end because I want a reader to get to know the details of disabled parenting before getting to the part where I talk about the worst parts—but the big elephant in the room of disabled parenting is Child Protective Services.

It is a disproportionate number of disabled people who lose their custody of their kids to CPS. One attorney I spoke to for the book said that she has never met a parent who lost custody of their kid who wasn't disabled. And in many states, in 22 states, it's legal to remove a child simply because the parent is disabled.

Every person I spoke to who had given birth had CPS called while they were in the hospital. I did not interview a disabled parent who had not interacted with Child Protective Services. And so, you know, there's this one lane of parenting conversation, to kind of joke about, “Oh, my gosh, I'm such a bad mom! Listen to these things I did.”

But that's an avenue that's not available to parents who lose custody on a regular basis. Far more Black people lose custody of their kids than white people. And I would say that it's probably the same there. Like a Black mom who relies on the social safety net would be far less safe joking about ways she is cutting corners as a parent than a wealthy white mom.

BLAIR HODGES: It sounds like it can be quite risky then, to talk about difficulties of disabled parenting. And as we'll talk about later on, a lot of your early parenting experiences had to do with proving your ability as a parent, because you were already, from the outset, being judged as, “maybe this person isn't worthy to be a parent or able to be a parent,” in the name of protecting kids.

And if any listeners are thinking, “well, I mean, if more kids are getting taken away from disabled parents, maybe that means they're not doing a great job,” I think it's important to point out that if the system is looking at and scrutinizing disabled parents differently than other parents, that is a better way to explain the disparity. Not that parents with disabilities are less worthy or less effective.

JESSICA SLICE: Right. I don't know how much in the weeds you want me to get with this, but when someone works as a social worker or as a doctor or a nurse or a teacher, they're what's called a “mandated reporter,” which means if they see any sign of neglect or abuse, they're obligated to call that into Child Protective Services.

What's complicated is that if they don't, they can be held liable, but also they can be criminally prosecuted. So there is a huge pressure, if you are in these certain positions—a pastor [in some states]— to call in concerns about child abuse. And I think in many ways, ways that is so important. But what's tricky is that disabled parents, because of wage gaps for disabled people, because of reliance on medical care, because of Social Security disability insurance and Social Security insurance, we interact with mandated reporters far more than the average population.

So there's this huge exposure bias. And it's the same for anyone relying on food stamps or WIC or Medicaid. Anyone who is in that position is being exposed to mandated reporters more and is therefore being called in more.

And that also doesn't account for just the inherent bias people have, you know, that if you see a child riding on a wheelchair, you may question the safety of that situation. And that's an inherent bias not based on fact. And that's even separate from mandated reporters. And so the rate that kids are removed actually has almost nothing to do with parenting capacity and has to do with a flawed system and flawed people.

And I may be spending too much time on this, but I also want to say almost any of the positions that a mandated reporter has, is an impossible job to get if you're disabled. And so, like, I'm a social worker, and I encountered a lot of difficulty getting my degree. And so actually, very few social workers are disabled. Very few doctors are disabled. Twenty-five percent of people are disabled and two percent of doctors are. And so not only are mandated reporters more exposed to disabled people, they are much less likely to be disabled and to have the lived experience as a disabled person.

So the system is flawed from, like, 40 directions all at once. And the result is, disabled people lose our children.

BLAIR HODGES: We'll get back to this a little bit later on to talk about things the system could do differently. But I also want to recommend to listeners another episode we did on Child Protective Services with Jessica Pryce, an earlier episode that goes into the racism inherent in the system, and it intersects a lot with conversations of disability, too. People can check that episode out.

 

Disabled People Aren’t Your Object Lesson – 9:00

 

BLAIR HODGES: All right, so as you're starting this book out, you're worried about talking about the bad stuff or the difficult stuff. But also, there's a risk on the other side, the good stuff, because sometimes stories about people with disabilities or stories by people with disabilities can become a sort of “inspiration p*rn.”

Or like, “supercrip” is a phrase I learned in disability studies, the idea that stories about disabilities can inspire us and can lift us up, which can turn disabled people into tools to make us have a smile on our face. We might see a cute story of a kid with Down syndrome getting to play on the basketball team, and isn't that great? And he gets to go in and shoot one basket, and hip, hip, hooray.

So you're also juggling how to talk about lessons people can learn from disabled parents, but without making people with disabilities mere object lessons. Talk about doing that dance.

JESSICA SLICE: Well, I mean, it's obviously extremely tricky. One, when you are complimented for doing a very normal thing, that presumes some level of deficiency or incompetence. Like, that's a real kind of red flag of inspiration p*rn. What people say, or, you know, an example I refer to is one time I was in Oakland sitting outside a coffee shop, drinking macchiato and reading a book, and someone came up to me and said, “Good for you!”

And, I mean, kind of good for me for? Like, taking a moment to myself and reading on a nice day? But I don't think that's what they meant. I think they meant, like…

BLAIR HODGES: You're a macchiato fan!

JESSICA SLICE: [laughter] Good for you for knowing that espresso is delicious!”

But I think they were saying, like, good for you for leaving the house? For being outside?

You know, it was really hard, and yeah.

But I will also say, you can kind of smell it when people are seeing you as an object. Just like you can smell you when someone's disingenuous in writing. I know it when it's happening. There's this sense of pity.

There's also people who choose to pray for me in public or who offer advice or yell.

BLAIR HODGES: Do they use a childlike voice with you ever? Or kind of look down at you if you're in your chair and be like, “Oh, hello! Hi!”

JESSICA SLICE: One of my favorite is, yeah, I was actually waiting for my dog at the vet. I was in my wheelchair and I was reading, I think, the Times, like the actual paper, and a man came up and said, “Hello, would you like to pet my little cat? And I was like, “no, thanks.” [laughter]

BLAIR HODGES: Uh, thank you, sir.

JESSICA SLICE: I'm just a grown up. I'm still a grownup. [laughing]

BLAIR HODGES: So weird.

JESSICA SLICE: So bizarre.

BLAIR HODGES: I think people are trying to cope with their—maybe they feel uncomfortable so they're gonna overcompensate. It sort of reminds me of how some boomer parents will, when they're telling you a story, be like “Oh, I met the loveliest man on the train, and he was Mexican…” And they add these details where you're like, I didn't need to know that. That's not pertinent to this story. But I think it comes out of discomfort?

 

Learning With Disabled People – 12:08

 

JESSICA SLICE: Yeah. But the thing that is so tricky, and the needle to thread in this book is that I actually do believe disabled people have unique and particular wisdom to offer as parents You know, I both don't want to be praised for doing very normal things, but also, we have some lessons to teach about parenting.

And, you know, you could argue that is being praised for doing a very normal thing, which is parenting. But I think it's that when you look at someone with pity, and then you feel like, “Well, good on you for still existing despite your tragic life,” that does not feel good. When you say, “Oh, you have had a different experience than me, and I would love to learn what you have discovered from your particular viewpoint,” that does not feel like pity. That feels like respect. And it feels like we're now equals and we both have something to offer.

BLAIR HODGES: And I think, in addition—and this really stands out in your book is—some of the lessons that people who aren't as disabled can learn actually demand things of us, actually demand things of other people.

Instead of just being inspired and getting a nice feel-good buzz, you're calling attention to systemic issues. You're calling out prejudices. You're talking about things that have the tendency to make people uncomfortable if they're not familiar with disabled people or if they don't have the same types of disabilities or haven't experienced disability. And so I think that's another component, okay, it can be inspiring, but is it also challenging?

And I think your book has lots of advice that can improve people's experience of parenting, regardless of their abilities, and also it makes demands on readers, because the world could be better in general for people with disabilities, and that would make it better for everybody.

JESSICA SLICE: Right.

BLAIR HODGES: But that's gonna make people have to do stuff. And people don't wanna do stuff.

JESSICA SLICE: Right. That's a good point. If you sense that your interaction with a disabled person is making you reevaluate or change, that's probably a respectful interaction.

BLAIR HODGES: Right. Well, I wanna tell people before we move on about the intended audience for your book. You're writing for disabled parents, for solidarity and connection. They'll recognize themselves there, get some catharsis and maybe some inspiration. Disabled communities are excellent at giving each other tips like, “here's how we do this.” So that's number one.

Number two, you're talking to non-disabled people or less-disabled people so they can reconsider what disability means in general and how society can change to learn from and accommodate disability better in ways that would benefit everyone.

So you've got multiple audiences. And one of the difficulties with talking to disabled parents is that about ten percent of parents have disabilities, and a lot of them deal with being lower income based on work disparities or ability. So a market for this book might be tricky. If you wanted to sell to disabled people only, I think publishers might be like, “Maybe there's not an audience for that.” Did you encounter that at all as you were pitching the book?

JESSICA SLICE: So, you know, it's funny, this book really came—I didn't pitch the book, I guess, is the answer to that question. Beacon Press approached me about the book. I've written elsewhere about disabled parenting, and that's kind of my lane. And they liked my writing, and we came up with the book together. And I think this particular publisher has such a commitment to printing and supporting books that will change the conversation and advance the conversation, you know, that's really the ethos of the publisher. I didn't have to do a ton of market convincing.

I will say that as I've written the book, it became clear to me that it is a book for all people. You know, I think that the first blurber I contacted was Ed Young. And he's not disabled and not a parent. But I have for a long time admired his writing. And I also find he's sort of morally unimpeachable. I just really respect his commitment to his own values, and I sensed that in his writing and in his work. And I once searched my text messages for Ed Young, and it was horrifying how many times I had sent his articles to friends!

It's like, just this long list.

BLAIR HODGES: Obsessed much? [laughter]

JESSICA SLICE: Yeah, this is, I mean, real professional admiration. But I just think, like, this is the ideal writer. And so when I finished the manuscript and it was time to get blurbs, I told the publisher I wanted to see if he would blurb it. One, he has no idea who I am. And two, he is not the market for this book.

But I sent him the book and he warned me that while he would spend a little time with it, if it didn't feel like a fit, I should not take it personally. But he's not a parent, not disabled. And he did read it. And when he was partway through, he sent me an email and he said, “Just so you know, this book is changing my life. I cannot recommend it more highly and I want everyone to read it.” And then he finished it—

BLAIR HODGES: You’re like, “Well, thanks for the blurb!”

JESSICA SLICE: Yeah! And then he finished it and wrote me a very, very kind blurb. And I had written the book hoping it would speak to all people because it really speaks to our shared fragility, our shared mortality, the fact that we are all wrestling with bodies that break and lives that end. And I was so relieved that this person I've spent years respecting saw that in the book and spoke to that.

And so I'm hoping that it does that for others once it's out in the world.

 

When Jessica Became Disabled – 17:42

 

BLAIR HODGES: It certainly did for me. This is a central theme of the book, about what disability can do when people sit down and think about disability. Here's a quote from you. “It forces a reckoning with our collective fragility and mortality.” And I think people spend a lot of time running away from our fragility and away from our mortality.

This is actually something you can relate to in ways that some other disabled people can't, because you have an acquired disability. In other words, we can think about people who were born with disabilities and it's just part of their life for as long as they can remember. But you became disabled in 2011. You were 28 years old by then, and even then you didn't personally identify as disabled for seven more years.

Tell us about your experience of becoming disabled and embracing that as an identity.

JESSICA SLICE: My story of becoming disabled. I'll do a short version. I was on a hike on Santorini in Greece. I encountered a pack of wild dogs, which feels germane to the story, although nothing happened with the dogs, but because of them, I had to go off the path and add a lot of time to the hike. And I was already overheated when I saw the dogs.

I ended up developing heat exhaustion and I got very, very sick, but assumed that I would be fine the next day. I was, at that point in my life I was a runner. I had run seven miles the day before. I was extremely active. A business owner. I really just didn't think of my body as something that could fail or would fail.

And then the day after the hike, I woke up and couldn't get out of bed. I was extremely dizzy. And I ended up never feeling well again. That that hike triggered, and what I have since learned is, it triggered a neurological condition, dysautonomia, which is actually quite common with Long COVID so it's now much more known than it was at that time.

And that in my case, it was due to a connective tissue disorder, Ehlers Danlos syndrome, which is genetic. I learned that when my sister, a year after I got sick, also developed the same symptoms. Well, no, no. So she got sick three years after me, because the first two years I was sick, I didn't have a diagnosis, and then I got diagnosed, and then a year after that I found out it was genetic. And then it was still four more years of thinking I could find a way to not be sick.

BLAIR HODGES: Yeah. Fix it.

JESSICA SLICE: Yeah. And I am—you know, I think it sort of oozes out of me, like I'm an extremely motivated, high achieving person. And so when I learned there were exercises I could do, there were medicines I could take, there were ways I could eat that would make me not sick anymore, I just fully committed.

I did this extremely exhausting yearlong cardiac rehab plan that caused intense discomfort every day. And I stuck with it. And it did almost nothing. I did everything anyone said and I wasn't improving. So I eventually had to come to terms with the fact that this is the body I live in.

And at that time, because of grad school, I started to read some disability theory. And it was really the first time I had started to think that what I was experiencing—which is a body that is profoundly symptomatic, uses a wheelchair, has a disability placard, gets Social Security, disability income, like, has a lot of reasons already to think I'm disabled. But it had truly not crossed my mind. And I started to read disability theory and I was like, oh, I'm disabled. I'm not sick. And for me, that realization, instead of this lonely experience of losing the life and body I loved, I switched to joining a community of people.

I now became part of this group of people that has always existed and has built these systems and groups and ways of being and ways of thinking and loving, and it just, it felt like coming alive to realize I was disabled and part of the disability community. It helped me feel like part of the world again.

And through that, I also reevaluated the way I saw my own transition from healthy to sick. Instead of, like, that was my life: good, and now my life is bad, I actually saw my existence with a new subjectivity, because I think we always have subjectivity—

BLAIR HODGES: The way we think about ourselves, is that what you mean, subjectivity?

JESSICA SLICE: Yeah. And the way we think about anything is subjective. You know, there is no view from nowhere.

BLAIR HODGES: In other words, it's personal. Like we're seeing it from where we are. We're not this objective mind floating in space that can see all truth or something.

JESSICA SLICE: No, we are terrible at that. You know, we can't see anything objectively at all, including ourselves.

And I just started to notice that I liked my life. That if I stopped assuming I didn't like it, I did like it. I like slow days. I like the way it's changed the way I think. I like the way it's changed my emotions. I like the way it's changed my relationships. I like being alive. And I like my life now more than I did fourteen years ago before I became disabled. And I think it was realizing I was disabled that was sort of this gateway to feeling alive again.

 

Parents Are Exhausted and Feel Inadequate – 23:27

 

BLAIR HODGES: I'd like to come back to that thought of liking your life better now. But first you move the discussion into parenting more broadly, because as you point out, parents, by and large, are pretty exhausted right now, generally.

JESSICA SLICE: Yes.

BLAIR HODGES: Like, exhaustion and parenting are going hand in hand. So you're like, hey, this shouldn't be a big leap for everyone to think about disability and parenting. Because parenting is difficult, and there's going to be stuff people can relate to. What's interesting is, you say most of your friends who are parents and who are not disabled or are barely hanging on, so what would it be like to be a parent and be disabled?

I gotta ask you about this. So instead of feeling like those parents actually had it easy, you didn't look at them and be like, “oh, you guys are exhausted? We'll try not being able to stand up for longer than 30 seconds without, like, feeling you're gonna pass out!”

JESSICA SLICE: Yeah!

BLAIR HODGES: You didn't do that move. Instead, you started feeling like an imposter. And I'm like, why? Like, why not say, “You guys got it easy,” instead of like, “maybe I'm kind of an imposter parent”?

JESSICA SLICE: I think it was because there were all these examples of parenting that I have been constantly exposed to, in media, in books and shows and with my friends. And all of the examples didn't look like me and didn't perform like me.

And there's this—the one I thought of is the mom pacing around a room trying to soothe a child, you know, I cannot pace. That would be impossible. Or the harried mom driving between practices and school. And, you know, I don't drive. There's just all these examples—the mom cooking and running around the kitchen. You know, I do not cook because we don't have an accessible kitchen. So I can't really use my own kitchen very well.

And there were just all these ways of being a parent where I didn't see myself. And so it made me think, well, maybe I'm not really a parent.

BLAIR HODGES: What started changing your mind about that?

JESSICA SLICE: Well, writing about it. I wrote a piece in 2019 about feeling like an imposter, and I heard from hundreds of disabled parents saying, like, “me too!” And I think hearing the details of other disabled people parenting, they felt like real parents to me. And so it made it seem like I could be too.

I think choosing to spend more time in the world of disabled parenting, just choosing to spend time in the world of disability in general, gave me community and a sense of place and a sense of connection. I started to reevaluate the way I see my own parenting.

And then, as you might be getting to, I actually thought, “Oh, and my parenting actually has some unique and valuable features of it that non disabled parenting doesn't have.”

BLAIR HODGES: Yes, we will move to that. But I also want to point out this chapter, you based some of it on the work of Kathryn Goldstein. This is a Harvard fellow and a journalist who you interviewed for the book. And she advocates for working mothers. And in her work, she's identified a list of factors that make parenting tough for everybody.

And you present those to us and then show how people with disabilities are sort of the canaries in the coal mine when it comes to these factors. We can see them even more clearly in the lives of people with disabilities. What does she bring up that's making parenting hard right now?

JESSICA SLICE: You know, I think one that I really have noticed and that she mentioned is this pressure to have individuality as a parent, to not need help, to be able to manage everything on your own, which is impossible for everyone.

BLAIR HODGES: Or at least buy the right supplies. That'll help you do it.

JESSICA SLICE: Well, right? I mean, that's what she didn't mention. But I think about it a lot. The consumerism.

BLAIR HODGES: Ah, you add that.

JESSICA SLICE: Yeah. Which is this thought that if we just buy the right thing, or if we can buy enough things, that parenting will become possible and easy and beautiful. And that's just fundamentally not true also.

BLAIR HODGES: And I think you add that to her research because you probably have seen all this stuff, but as a disabled person, not a lot of this stuff is built for disabled people. So you might see these offered solutions, but the consumerism often falls flat. One, because a lot of disabled people don't have the money for it, or two, because they're not built for disabled people.

So you're like, cool that you came up with these contraptions stuff, but like, we can't use that.

JESSICA SLICE: That's exactly right. I mean, that's kind of what I get at in the book, is that we have to reject the consumerism as the answer because we can't use the beautiful products. And so we invent our own. And they're often pretty crappy looking. Like, you know, they're these in-home event inventions, which, I think they're, they're gorgeous and interesting and you know, great examples of creativity. But it's not this brand of parenting that you're fed on social media at least.

So there's individuality, and then there's also workplace culture. It's difficult to get enough parental leave, particularly in the US, less so in Canada where we are. But still, it is difficult to make enough money for your family and have enough time with your kids.

That is a difficult or really an impossible thing to do.

Three, the social safety nets are inadequate, particularly in the US where I'm from. And four is gender inequity, which is something I was just writing about today because disability forces changed gender dynamics in cishet households. Like in our household, my husband does all the laundry and makes all the meals and you know, I'm the money guy and I'm doing a lot of stuff behind the scenes.

But my own tendency to be hyper-controlling would mean that if I weren't disabled, I would likely be doing ninety percent of everything. And so disability has forced a changed gender dynamic. But in many households, there's a great deal of gender inequity with, you know, they talk about emotional labor and invisible labor and then actual physical labor. And the combination of all those things means that the woman in the household often carries more.

 

How Becoming Disabled Helped Change Her Mind About Parenting – 29:44

 

BLAIR HODGES: So with all those factors combining, people might feel like being a parent is just maybe not a great idea. How was that for you? Did you always want to be a parent? Did you bring this from before you were disabled? How did you know, and how did you decide to become a parent?

JESSICA SLICE: I don't think I write about this a ton. I maybe touch on it, but I did not want to be a parent. And that was mostly because I thought I would be a terrible parent. Before I was disabled, I knew that the way my perfectionism and my relentlessness worked inside my own brain meant that if I were tasked with caring for another person and raising them and helping them be emotionally healthy, I would be completely ill-suited for that task.

That there was such a kind of toxic, high-pressure disaster inside of me that it would ooze out all over any innocent baby I were to bring into my life.

BLAIR HODGES: I like when you said, I think it was your therapist who said, “you're a perfectionist.” And you're like, “no, I'm not. I'm not. I'm not good enough to be one.” [laughs]

JESSICA SLICE: I've never done anything well enough to be a perfectionist. She was like, yeah, that's the whole thing.

BLAIR HODGES: So what shifted? If you had those kind of fears, people might expect becoming disabled would just amplify them. Like, okay, well, that kind of does it for me.

JESSICA SLICE: And, you know—and I don't want to say this is true for all disabled people, but for me, disability pried that perfectionism out of my hands. I cannot succeed and achieve and perform anywhere close to perfect. Now I have to rest so much. The limits of my body are so firm that it forces me to do a lot of things halfway. My house is messier than I want it to be. I work much, much, much less than I would ever want to each day. Every part of my life is changed by my disability. And I discovered…

Yeah, I want to make sure to answer this, like, as truthfully as I possibly can.

BLAIR HODGES: You can lie too, if you want. [laughter]

JESSICA SLICE: Well, I think this is the crux of it so I want to make sure I do it right.

BLAIR HODGES: Okay, good.

JESSICA SLICE: I learned that I like myself and that I am a good and interesting and worthwhile person without that achievement and without perfection. And that a very slow life spent mostly in bed with an uninteresting diet and no travel is a good life.

And that I am worthwhile. And I think that liking myself, and I think that loving my life, makes me a very, very good parent.

 

External and Internal Obstacles – 32:55

 

BLAIR HODGES: When you arrive at that for yourself, you're still gonna face more obstacles. You talk about how deciding to parent—for whatever reason, you dealt with infertility, so you had to go through that and then get into the foster care system and deal with all the obstacles you met there. So there's a lot of external prejudice and obstacles, and also some lingering internal shame and doubts.

Maybe give us an example of each of those, the kind of external prejudice that a disabled parent might face and some internal shame or doubts a disabled parent might feel.

JESSICA SLICE: I was someone who did not have much attachment to physically carrying a child. And so when I was told that for me it would be dangerous, I let it go pretty easily. And that's not the experience for many people. For whatever reason, that's something I did not have a strong attachment to.

A lot of disabled people I interviewed for the book are dissuaded from becoming pregnant. It's very difficult to get accessible pregnancy care. There are people who are dissuaded both because doctors don't know what to do with them, but also because they're worried about the disabled person having a disabled child. You know, there's that prejudice.

For me, the obstacle was because we wanted to be foster parents, we had to get a doctor to say I was physically capable of parenting. And that was an extremely scary thing to ask. He ended up saying yes without reservation, but I was very nervous to get that.

BLAIR HODGES: Yeah. It's a beautiful scene. Cause he's like, “a child would be lucky to have you as a parent.” But all the anguish and turmoil that you had to go through to even get to that point. I mean, it's a lovely thing that the doctor said, but the circumstance itself is very difficult.

JESSICA SLICE: Right.

BLAIR HODGES: And I don't know what word to use for that. Difficult?

JESSICA SLICE: No, it is—[laughter]

BLAIR HODGES: It's not good!

JESSICA SLICE: Bad!

BLAIR HODGES: Bad.

JESSICA SLICE: You know, I interviewed this Harvard doctor, Paige Church, and she's a disabled parent. And she also had to get a doctor to say she could parent when she adopted.

BLAIR HODGES: She's a doctor.

JESSICA SLICE: Yeah. She's just this extremely high achiever, very competent. And she also had to go to someone and it's this, like, supplication of, “will you say I'm good enough to parent?”

BLAIR HODGES: And then there are the classes you had to do. That sounded like a nightmare because of what your body needs. Like, temperature's a real issue for you. Where your body's postured is an issue. What you're sitting on. They are going to put you in this classroom that's not set up for any of this stuff and expect you to sit there for, was it like six hours at a time or something?

JESSICA SLICE: Four six-hour sessions.

BLAIR HODGES: And they're like, “if you can't do it, maybe you can't be a parent. Maybe you're not good enough. This kind of proves our point.” And you're like, but parenting isn't like this!

JESSICA SLICE: Yeah. I have now been a parent for eight years and at no point has anyone made me sit upright in a hot room for six hours. [laughter]

BLAIR HODGES: Yeah!

JESSICA SLICE: It’s never once come up.

BLAIR HODGES: Yeah, now, you've missed a few things. Like you talk about when your kiddo went to the hospital, it was hard for you to stay home. So there are some things to consider there. But again, this gets back to the fact that you're not parenting alone, that you have other resources. And that ultimately no parent is totally alone.

What if a parent is sick? Like, I got the shingles really bad once and I was down and out for more than a week. And I fortunately have a partner who could take care of our kids when I was down. Nobody's asking me, “well, what's gonna happen if you get sick? What's gonna happen to your kids?” Nobody's asking me that.

JESSICA SLICE: Right. Yes. This expectation that “anything I couldn't do is an indication that I shouldn't do anything” is flawed. You can't do everything. I think you're not disabled, but I also know you are not infinitely powerful, and you don't have every single skill your partner has. You don't have every single skill every other parent has. We all have certain strengths and weaknesses as humans. I don't think disability is wholly different.

And I would also say, you know, the hospital example is a tricky one because I don't know that I think ambulances should necessarily be accessible in case there's a disabled mom. Like, I don't know that it would make sense for ambulances to be big enough to allow for my power wheelchair to fit inside.

But there's a lot of things I've missed that I think are pure accessibility issues. You know, if my child went to a school and I couldn't enter her classroom for two years, in that case I place the blame firmly on the school's accessibility and not on my body.

BLAIR HODGES: How'd they get around ADA [Americans with Disabilities Act]? Was it like a historic building or something?

JESSICA SLICE: Yeah.

BLAIR HODGES: Okay…

JESSICA SLICE: I mean, also the historic building thing, don't get me started! There's a lot of places with just one step that could build a ramp pretty easily. And they're like, sorry, it's too... And people get very proud about being grandfathered out of ADA. I'm like, that's not a brag. It just means you're excluding us.

And so I think there are also cases where I haven't been able to go to things where I refuse to say that's a deficiency of my body.

 

Embracing Our Shared Fragility – 38:07

 

BLAIR HODGES: It's a great point. Another great point you raise, and we've kind of talked about it a little bit, is that even apparently able bodies can get caught out by problems in the medical system. You interviewed Jordan, one of the mothers in the book, who saw herself as a really strong, independent person who could achieve whatever she put her mind to.

But then she experienced infertility, which really took the wind out of her sails of being this independent person. But then also, child loss crushed that mentality. She learned through her experiences that she was vulnerable. Disability is always hovering in the background for anybody.

JESSICA SLICE: Right. I mean, I think people really don't like to think about disability and really like to pretend that they're very far away from it, because it's a reminder that everything is fragile. But I think carrying kids and giving birth is often a forced reckoning with fragility, and it's often a reminder that nothing is promised and that everything is fragile.

I included her story in the book, I mean, I think I said it explicitly. Why? Because she is such a unique example in that she had had almost zero hardships up until becoming pregnant. And so her experience of infertility and pregnancy loss and, you know, repeated pregnancy loss and just complete and utter heartache was so profoundly destabilizing to her and extremely lonely, because society's encouragement to ignore our fragility meant that she thought she was invincible. And so when she got there, the ground disappeared from underneath her feet.

I think if we all had a better understanding that not knowing what will happen is the thing we share, that when the worst thing happens, when we suffer, we won't feel the bottom drop out that way.

We will suffer, but we will feel connected to other people. We will feel like, here I am in our shared suffering that we all have, that we all experience, instead of, “what's wrong with me. Why have I gone off the path that I'm supposed to be on,” which is a idealized life?

 

What Disabled People Can Teach About the First Week – 40:26

 

BLAIR HODGES: Yeah. I loved your chapter called “The First Week” because it touches on this exact point. A lot of parents, and especially mothers, talk about the first few weeks after labor and delivery and having a kid as a living nightmare. Sleep is an issue. Their bodies are feeling like they're alien to them, and all the pain and all the recovery.

Whereas your experience, I mean, you were a foster parent but with a young child, so only kind of similar there. But you had a terrific beginning. It was sort of wonderful. And it wasn't just you. You've talked to other disabled parents and even some who have delivered their own children who also had a great beginning.

And you saw this pattern emerge where you're like, okay, people with disabilities seem a little more likely to be able to weather that first really difficult period.

JESSICA SLICE: Yes. That was the most surprising part of writing the book, actually, because I did so many interviews for this book. I knew I wanted to write about the beginning because it's such an emotional time for everyone. But what I expected is that there would be this set of complications or set of concerns or set of difficulties for disabled people and then a different set for non-disabled people. And that I would sort of compare and contrast approaches.

But what I found is that, in all but one case, disabled people said, “oh, yeah, it was fine.” And every nondisabled person I talked to said, “this was the worst week of my life.” And I was like, what is happening here?

And really, it took a long time to write that chapter because I had to really think through it. I kept doing more and more interviews and I actually still continue, when I come across a disabled person who has had kids, I ask them about their first week. And so far it has stayed true.

So I don't have “IRB approval.” This isn't an official study, but I have continued to ask these questions.

What I'll go back to also is the disabled people in many cases had profound medical complications. One woman I spoke to, Jocelyna, who's incredible, she does most of her parenting with only her mouth and she doesn't have really any strength in any of her limbs, and her childcare fell through right after she gave birth. She had a family member coming into town to help, and it didn't work out. So she had to do almost all of her baby care while recovering from giving birth with only her mouth. And she had invented this crib blanket pulley situation that I've seen photos of, it's ingenious. And she did it all. And I was like, “oh, my gosh, this sounds terrible. How was it?” She's like, “oh, it was fine. It was a wonderful time of bonding. We just were in bed together for a week, getting to know each other.” And I was like, what is this about disability that makes this huge transition with a lot of physical agony and so much uncertainty not bad. Why is that?

BLAIR HODGES: Yeah!

JESSICA SLICE: Yeah!

BLAIR HODGES: What'd you find?

JESSICA SLICE: Well, I mean, nothing official, but my thesis, which is backed up by some research, is that disability forces us to practice adaptation, and to practice a familiarity with discomfort, and slowness, and like I keep saying, fragility. So when you think you know how it's going to go with a newborn, then it never goes that way, and disabled people are accustomed to being like, “okay, that didn't work. Let's try another thing. Let's try another thing,” you know?

When there's an obstacle, we face so many ridiculous obstacles on a daily basis that newborn-related obstacles are just par for the course. That's one reason.

Second, a lot of disabled people experience chronic pain and unreliable bodies and discouraging interactions with medical care. And so the actual recovery from giving birth for a disabled person is not so far outside a standard daily experience.

BLAIR HODGES: Which is so sad! [laughter]

And that's an indictment, right? Of, you have a whole chapter on medical care. I love your caveats. You're not like, “see, and this makes disabled people the best. Like, be like us!” You're like, “okay, you can learn these things from us. Also, these systems could change to make it better for everybody.”

Also, just because you're disabled doesn't mean you're going to have all these qualities or have the opportunity to develop all these qualities. Your caveats are really important here. You're like, I'm not saying everybody with a disability becomes a super parent or super flexible and is amazing. I'm also not saying that those who do indicate that we don't have to change the system.

You're pointing out all of those things. It's a nuanced argument.

JESSICA SLICE: Yes.

BLAIR HODGES: I don't know if the algorithm's gonna favor the nuanced argument. I don't think it will!

JESSICA SLICE: I'll say no.

BLAIR HODGES: We’re not gonna see TikTok reels about this. Like, TikTok about nuance, here we go.

JESSICA SLICE: Well, there's a number of things I talk about in the book that are rooted in nuance that I have a lot of concern about. But you know, then there's also this, like, I talked to this OBGYN at UCLA who works with mostly disabled people. And I talked to her actually after the book was finished, but her opinion is that people are sold such a bill of goods about having a kid!

Like they're told this is going to be this magical time of falling in love with a baby. And that she thinks disabled people somehow are insulated from being sold that lie. I think there’s just our familiarity with medical care and with bodies and neediness and interdependence and all these things, so that the adjustment feels a little different.

But a lot of non-disabled people, particularly those who have had limited other physical struggles, the reality differs so dramatically from what they expect. And when expectations fall short, that's where a lot of suffering comes from. And so she blames it on that, which I think is true.

 

Against Individualism – 46:34

 

JESSICA SLICE: I also—and this is like, a little more complicated, but I think you and your listeners can handle it. I think recovering from giving birth and caring for a newborn is where the line between disabled and not disabled vanishes. I think a person who has given birth, their body is temporarily disabled, you know? C-section recovery, vaginal birth recovery, those are hard, painful processes. And I think that that is a version of disability.

I also think, you know, if you define disability as a body that needs, a body that's dependent, a body that's unreliable, then a baby is like the ultimate disabled person. And I think being a person who has given birth with a baby who is so needy is this relationship with interdependence, a relationship with unreliability, a relationship with community need, with stillness, with all of these features of disability that are terrifying.

And I think it's because we reject all of those qualities in society and then you suddenly are forced to live in them. And without comfort with disability, without comfort with independence, with interdependence, without that kind of comfort, that time is horrible. And so I actually think including a comfort with disability in general would then insulate people in that first week and it wouldn't be as terrifying.

BLAIR HODGES: Right. And this connects up with how we mentioned CPS earlier and I said we'd get back to some changes you’d like to see. I'll just mention right here, you'd like to see a shift away in people's mindsets from this fake ideal of individualistic parenting.

JESSICA SLICE: Yes.

BLAIR HODGES: Toward models of community parenting, toward systems that can help parents who need additional help, away from individualism, basically.

And I think behind that, I wonder how much a drive for privacy is behind some of that. Like, people don't want the state involved as much or they don't want to involve other people because there's a drive for privacy.

But I think that's a balance we need to do way better at striking. Maybe privacy can become way too extreme and we're hurting ourselves in expecting individualism because we don't want anybody in our business or whatever.

JESSICA SLICE: Yeah.

BLAIR HODGES: I think that's the tradeoff we make, the reason people might be resisting. Because I was just trying to think, like, why are we resisting this? Like, why don't we want help? You know?

JESSICA SLICE: Well, I have an idea. And it's that we don't want to die. And I think the transitive property of it is, if we have needs, then we are weak. If we are weak, then we are mortal. If we are mortal, then this life ends. And anything that gets anywhere close to our mortality, we just want to stay far, far away from.

And I think disability is a reminder of mortality, but I also think giving birth is a reminder of mortality. I think babies are a reminder of mortality. And I think confronting that reality is devastating. And it also causes very real and practical pain.

There's this one mom I interviewed for the book who's non-disabled, and her baby had to go to the hospital regularly after birth. And it was about a half mile away. And the mom walked the baby to the hospital every couple days. And when she was talking to me, she said, “on that walk, my back hurt so much. I was so weak, I was so dizzy. And I thought, how can I go on like this? Will my life ever improve?”

And all I kept thinking is, why did no one give this lady a wheelchair? Like, there are literal things for this, you know, and it's get a walk.

BLAIR HODGES: There's an invention for that!

JESSICA SLICE: Yeah! You just don't have to walk. And I thought, we are so scared of disability and so scared of our bodies being fragile that we will suffer over and over and over again instead of saying, like, I need help. I can't do this. Please, someone put me in a chair. And that felt like a real example of why that week is hard.

BLAIR HODGES: That's Jessica Slice. We're talking about her book, Unfit: A Disabled Mother Challenges an Inaccessible World. Her work has appeared in places like The New York Times’s Modern Love column, in the Washington Post, Glamour and Cosmopolitan. And she's also author of a couple other books. There's a book called Swiping Right, Hooking Up and Settling Down While Chronically Ill and Disabled, and a book called This Is How We Play: A Celebration of Disability and Adaptation. You can follow her work online at jessicaslice.com

 

Living a Worthwhile Life – 51:18

 

BLAIR HODGES: Jessica, let's talk now about ableism. You say that perhaps the biggest assumption people make about people with disabilities—and it's one you shared earlier in your life—is that being disabled just makes people fundamentally unhappy. This connects to what you were just saying about weakness, death, et cetera.

People think being disabled is just a bad life. I mean, doctors warn against having children with disabilities, and anyone who's had a kid has probably had this kind of conversation with a doctor if some sort of genetic abnormality or genetic difference is detected.
In the book, you have an example of this medicalized conversation. I wanted you to read what someone might hear from a doctor about a disabled life, the kind of warning parents might get.

Do you mind reading that for us?

JESSICA SLICE: Okay.

In the near future, researchers will likely identify the genetic markers of my condition, Hypermobile Ehlers-Danlos syndrome (hEDS). I imagine amniocentesis revealing that abnormality and a genetic counselor or doctor explaining what it means.

“Your child will be in pain every day of their life. They have a high likelihood of developing digestive and neurological complications. They should avoid most contact sports because of the risk of injury. They will need regular ocular and cardiovascular testing to monitor for additional complications. Many people with hEDS need to have wheelchairs at least some of the time. In some cases, pregnancy is dangerous for a person with hEDS. Many cannot work, or the type of job they can do is limited.”

BLAIR HODGES: And you say that all of that's true, but you also say a description of your illness doesn't begin to describe the reality of your life. I love the paragraph you add to this. Things the doctor couldn't have predicted about you.

JESSICA SLICE: She will live in Paris and Berkeley. She will marry a generous partner, and together they will adopt a baby who is joy personified. She will, in her late 30s, discover she's a writer and will find deep purpose and connection through that work. She will laugh easily and cry easily and will hate cooked carrots and will love clothes and have dozens of houseplants and will think about coffee as she's falling asleep at night, and will read poetry every morning.

She will hold on tightly to her friendships, and when she turns 40, dozens of those friends will send voice recordings of themselves reading her favorite poems. She will tend towards optimism and hope.

BLAIR HODGES: You said earlier that you would have believed, in the past, that you wouldn't have liked this life. In the book, you say if you could go back in time and tell your 28-year-old self, or maybe read that doctor's paragraph to them, your past self might be horrified, but that somehow you do prefer your life now. Tell us about that transition.

JESSICA SLICE: I think that, for me, disability made me feel like I'm part of the world.

I want to be so careful with how I talk about suffering because suffering is suffering. It's miserable.

BLAIR HODGES: And you mentioned that some people with disabilities don't prefer the change. You're not saying everyone should.

JESSICA SLICE: I just think we have the right to say we do. And people have the right to allow their imagination to consider more ways of having a good life than just saying, all that matters is my health. And there are other ways to define a good life. For me, I feel like I'm part of this story now. I'm in the world.

The thing that we all share is that we suffer. And that is true for every person. And when I was so manically desperate to achieve and to never experience anything bad and to do every trip as beautifully as possible and to eat every meal at the very best restaurants and to have the most fun with my friends and to have everything, everything, everything good, I was refusing to see this whole thing that is true, that we all suffer

I like the honesty of my life now. I like the slowness of my life now. I like that it's forced me to tell the truth about myself and to myself. I like disabled people. I like their creativity and their joy and their strength and their determination to change things despite many forces pushing back against us. Yeah. I just like it. Which is surprising to me. But it is true.

BLAIR HODGES: There's a quote here that I'm gonna put on a little note card and keep it where I can see it. You say, “What a gift, to learn that we're terrible at predicting what will give us meaning and joy.”

JESSICA SLICE: Yeah.

BLAIR HODGES: Yeah. And you found research that backs this up, that when people ask people with disabilities, when it's been studied, what is your quality of life? What do people expect the quality of life to be for people with disabilities, and what do people with disabilities actually say about their lives? Those numbers are very different.

JESSICA SLICE: Yes. And the vast majority of people who become disabled, their life reaches the same level of satisfaction that it did before that. There are many things that make a life hard, and there are many things that make life easy, but actually, our ability to enjoy our life is far more complicated than we think. And we are truly very, very bad at knowing what will make us happy. I think we're terrible at it.

BLAIR HODGES: And maybe we're good at finding happiness when we just need to sometimes.

JESSICA SLICE: Yeah. I recently listened to an interview with someone who said he thinks people seek medical or scientific solutions for existential problems, and it really struck me as true. I think wrestling with the reality of our lives is difficult and painful, and we seek a way out from that. But I think the only way is through.

BLAIR HODGES: I think about that, too. If they could find a cure for some of these diseases—and I want researchers to do it! I know that can sneak over into ableism, especially when people talk about abortion and elective abortion for people with disabilities. But it's also, to me, part of the mission of alleviating suffering in the world.

And I think you could still enjoy so many of the things you enjoy and not have your condition, but having your body has connected you with people that you wouldn't have otherwise been connected with, and has given you things to think about that you might never have thought about. Or at least maybe not until you're elderly and your body's changing.

And then, if we're lucky enough to live that long, most people will become disabled in certain ways in our lives. And your book is also a great reminder of that.

And as we mentioned, the book goes through thinking about medical care in the context of disability, thinking about Child Protective Services, thinking about how to make a home comfortable, about being a parent and seeing your kid grow, like pretty soon they're not just sitting on the little rug and playing with their toys, they're crawling. “Oh, no!” What's a disabled parent gonna do then? Then it's not fun enough for them to just go down to the end of the street with you in your chair and they want to go because the world's getting bigger. And what do parents do?

You talk about all of these things in ways that really connected with my experiences of parenting. I can't recommend this book enough, thank you. Because, yeah, it gives me a new perspective, but also so much of it's familiar as well.

JESSICA SLICE: Thank you very much. I appreciate that.

 

Regrets, Challenges, & Surprises – 59:09

 

BLAIR HODGES: And with that, let's talk about Regrets, Challenges, & Surprises. It's the last thing I always bring up. Your book's brand new, right? Like, we're doing this as the book is just coming out. Is there anything that you, looking back, would change about it? Maybe there's nothing, that's fine. Some people say, nope, nothing I would change.

Or what was most challenging about writing it?

And then maybe surprises. Anything you learned in the process of making this book?

JESSICA SLICE: The regret is that the book has to cover such a breadth of topics, because it's really one of the first books about disabled parenting, which is shocking. I mean, ten percent of parents is a lot of people, and any one part of the book could have been much longer and included more life experiences.

BLAIR HODGES: Each chapter could be a book.

JESSICA SLICE: Yeah. Each chapter could be a series of books. I mean, it's wild. And so inevitably, I have left people out of the book. There are stories and experiences that can't or haven't been included. And I think my regret is that someone will look for themselves in it and not find themselves and I wish it could be as inclusive and diverse as possible. I have done my best.

BLAIR HODGES: It's a great introduction. I mean, I hope it inspires more and more work. We need a lot more work in this area. Congratulations on being a pioneer.

JESSICA SLICE: Thank you.

BLAIR HODGES: Jessica, this has been a lot of fun. Thanks for talking with us about the book.

JESSICA SLICE: Thanks for having me.

 

Outro – 1:00:39

 

BLAIR HODGES: Thanks for joining me here at Relationscapes. If this is your first time here, I'm happy to welcome you! Hope you'll stick around and check out some other episodes. If this isn't your first time, thank you for coming back. I hope you'll take a moment to rate and review the show in Apple Podcasts. We've stalled out with just 65 ratings. We can do way better than that. If you love something, say something, that's my creed. Go to Apple Podcasts, search up the show, scroll down to Ratings & Reviews and leave yours. 

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

 

[Note: Transcripts are lightly edited for readability.]