Show notes
What RFK gets wrong and why "being healthy for our kids' sake" shouldn't be the goal, with author Jessica Slice.You are listening to Burnt Toast!Today, my guest is Jessica Slice, a disabled mom and author of the brilliant new book, Unfit Parent: A Disabled Mother Challenges an Inaccessible World.Jessica is also the co-author of Dateable: Swiping Right, Hooking Up, and Settling Down While Chronically Ill and Disabled, and This Is How We Play: A Celebration of Disability and Adaptation, as well as the forthcoming This Is How We Talk and We Belong. She has been published in The New York Times, The Washington Post, Alice Wong’s bestselling Disability Visibility and more.As Jessica puts it, she originally wrote this book for disabled parents because their stories are not told or centered. But Jessica soon realized she was writing a book for all parents, because becoming a parent is its own kind of experience with disability.There are so many important intersections between disability, justice and fat liberation. One that I think about a lot is how both groups come up against the question: Don’t we owe it to our kids to be healthy? Jessica’s perspective on these issues is expansive, inclusive and enlightening. I know you will get so much out of this conversation and from reading unfit parent.You can take 10 percent off Unfit Parent, or any book we talk about on the podcast, if you order it from the Burnt Toast Bookshop, along with a copy of Fat Talk! (This also applies if you’ve previously bought Fat Talk from them. Just use the code FATTALK at checkout.)PS. If you enjoy today’s conversation, please tap the heart on this post — likes are one of the biggest drivers of traffic from Substack’s Notes, so that’s a super easy, free way to support the show!Follow Jessica: Jessicaslice.com. I’m on Instagram @JessicaSlice, I have a Substack where I send monthly notes about Disabled Parenting, and then usually try to get people to read whatever poem I’m fixated on that month.Episode 190 TranscriptJessicaI am an author and a mom, and Unfit Parent, which is the book we’re here to talk about, is my third book. But it’s really the book that has my whole heart. And it talks about disabled parenting, which is the thing I care very much about.VirginiaI tore through this book. My copy is dog-eared every three pages, I think. It’s such a rich book. There’s so much in here. There’s so much for parents of all abilities—it just resonates in so many ways.Let’s start by having you talk a little bit about how you define disability. You have a very expansive definition, and I think more listeners may identify with it than they even realize.JessicaSo I have really thought a lot about the best definition for disability. And ultimately, I think everyone is better off if we don’t commit to a super firm delineation between disabled and not disabled. Because I think that delineation like ends up othering disabled people and further perpetuating stigma. And then I also think it puts a really inappropriate amount of pressure on non-disabled people that they should be sort of limitless and all powerful and show no weakness and hyper independent.My definition is, if you benefit from the disability rights or the disability justice movement, then you are disabled.It’s pretty easy to take that and say, “Well, everyone does.” Because anyone who pushes a stroller benefits from a curb cut or ramps, and additional time on testing is used for a lot of kids. So if you expand it too much, then everyone’s included. But I think that’s kind of fine! Having gone from someone who was not disabled to pretty disabled, I don’t feel threatened by having an inclusive and broad definition.VirginiaMore people in the club would not be a bad thing. It would actually make it easier to advocate for the changes we need.JessicaExactly, exactly.VirginiaThat’s super helpful, and I just want to encourage listeners who are new to conversations about disability rights to keep that broad framing in mind as we go, because so often, we do really silo off into “able-bodied” vs “disabled.” So I appreciate you grounding us there.JessicaEspecially for parents! When there’s this assumption that they’re not disabled and then therefore parenting shouldn’t be hard, or you shouldn’t be exhausted, or you shouldn’t need help, or you should be able to find the strength within yourself and the willpower to do all you need to do. I think that really particularly hurts parents.VirginiaI underlined this part of the book, where you wrote about your own journey towards claiming “disabled” as an identity:When my body shifted at 28 from one that could run work long hours and travel internationally to one that must mostly rest, I believed that I would go back to my old life once I solved the puzzle of my body. Until the hike in Greece during which I became disabled, I had the false belief that the life I wanted was a matter of sufficient effort and prudent decision making.I read that and thought, well, this is also really describing diet culture. Because an experience a lot of us have had around gaining weight is that if we just work hard enough and have healthy habits and make the right choices, we’ll lose it. We’ll get back to that level of thin privilege we once enjoyed.I’m just curious if that parallel resonates with you? Maybe it doesn’t at all! But wondering if you see this kind of diet culture driven mindset, does that show up elsewhere in our cultural attitudes around disability?JessicaYes, I very much relate to that. And have been following your work and Aubrey Gordon’s work for a while and other anti-diet activists.I think so much of the conversation overlaps. It’s a myth that there’s an ideal body, and pursuing this ideal body ends up hurting especially fat people and especially disabled people, but it hurts everyone to have this one type of body that we’re all trying to get, whether that’s based on size or ability.VirginiaIt just seems like it’s a mindset we apply to so many aspects of our life, too. We think, “Well, if I just do everything right, then I’m going to have this outcome and I’m going to achieve this goal or this ideal.” And so much of life is learning how often that’s just not the case.JessicaSo I became disabled, as you know, very suddenly in one day. But it was the onset of a genetic condition. In the years prior to being disabled, I exercised every day, or five to seven days a week. I was always trying to optimize my eating. I was like, “Oh, okay, I’ll have oatmeal, but then I also need to add chia seeds and then walnuts, and then blueberries, and then almond butter. Like, how can this be the very best bowl of oatmeal? And then should I add protein powder, too?” And then lunch, it was like, “Okay, well, definitely fish. Like, I need omega three, and then fruit and vegetables, and then some complex carbs.” I was just considering every meal I ate. And then I became disabled—so obviously, eating and exercising that way didn’t insulate me from that, right?VirginiaYeah, so fascinating. Because people think they’re making their bodies bulletproof.JessicaExactly that. Someone who ate like that should have been able to do anything.So after I became disabled it took a while to get a diagnosis. And then it took me years to accept that I was disabled and that I would always be sick. And during that time, I tried any sort of therapeutic diet that was recommended to me, like cutting out gluten and then dairy, or much more protein, or no sugar, or suddenly nightshades were the enemy, and all these iterations.As a hyper-achiever, I fully committed to each of these things. And then nothing helped. I mean, it’s not going to fix the makeup of my body to do those things. And I’ve now accepted the way my body is.But it’s funny now that I have a real acceptance of my body and a much more distant relationship with the food I eat, I would say I eat probably below average. I have a bowl of fiber cereal in the morning, and then I need a lot of food each day. My second breakfast is usually a bagel with butter, cream cheese, bacon on it. I also add cucumber as a nod to health.VirginiaA little cooling crunch. I get it.JessicaAnd then I have on my to do list every day “eat a vegetable,” which, if I compare that to the way I was before disabled, is hilarious. But I don’t know, this actually feels like a much healthier way to be, if you sort of shift the definition of health into humane. And without the delusion that my diet will solve everything, or really solve anything. Like I kind of just see it as like, all right, I eat as much as I need to, to give me energy. I mean, I also eat for pleasure. But my diet has shifted totally since becoming disabled, and I like it much better this way.VirginiaIt sounds like becoming disabled—I don’t want to oversimplify this—sort of gave you permission to prioritize pleasure with food more. And take up more space with that.JessicaYeah, and also not think about eating as, like, “I better not mess this up.”VirginiaYou talked a lot in the book about your struggles with perfectionism. There was a line I loved: “Becoming disabled dismantled something corrosive about my perfectionism.” That one resonates.JessicaRight? Exactly, exactly. And I think diet culture, as you talk about, has so much overlap with health culture, like wellness culture. That idea that you can do one last thing to optimize your life or your mornings or your days or your body.And you know, wellness culture wasn’t in full force—because I came I became disabled in 2011 and it was pre-Instagram, or very early Instagram. Something culturally was a little different then. But, oh my goodness, if I weren’t disabled now, I can only imagine how much I’d be cold plunging.VirginiaThat was the early days of Goop and Michael Pollan, and that sort of diet culture. Now we’re just like, “All of that times a million, please.”JessicaYes, right, right.VirginiaA major arc of the book is your own story of becoming a mom. One piece that I really want to talk about is how your experience of the early weeks of parenting was so much more joyful and less panicked than what many able-bodied parents experience—myself very much included.My first daughter was born with a congenital heart condition, so I was plunged into new parenting and into parenting a child with a disability, right off the bat in a pretty intense way. And when I was reading your experience, I was thinking, wow, there could have been so many moments of less struggle and less panic if I’d had the kind of preparation you’d had.JessicaI’m sorry, that sounds like a really hard way to be introduced to parenting.VirginiaIt was a cold plunge, for sure. She’s amazing. But it was a cold plunge.JessicaThat chapter really surprised me. I decided to interview a few disabled and a few non-disabled parents to try to see if there were different trends about the struggles of the first week. I expected disabled parents to describe more complicated recoveries from giving birth and that the difficulties would be maybe heightened, because there’s just a much greater chance of having the gestational parent hospitalized after birth, or to experience complications. And what I discovered in the first interviews is that every non-disabled person I interviewed talked about how becoming a parent was the time they went to war. I mean, it was just so much agony, even from friends I hadn’t realized how much agony they had been in. I thought so much about this, about why this is and, but it seems to be that almost across the board a uniquely challenging time is when you become a parent.But then, when I talked to the disabled people the first few interviews, they all said, “oh, it’s fine. It was fine.” And then I was like, well, how was your recovery? And one person said, well, I had preeclampsia after giving birth and I had really bad side effects and had to keep going to the hospital. Oh, and I had given birth to twins. Oh, and Child Protective Services visited—and they were describing all this stuff, but saying, “and that happened, but it was fine.”Disabled parents were like, no, it was fine. I knew we’d figure it out. And then the another disabled person I talked to, she was like, “Well, I do everything with only my mouth because of my disability, and I had someone coming to help me the first week, but they ended up backing out, so I had to recover from a c-section while caring for a child alone with only the use of my like mouth and neck muscles.” And she was like, “But we figured it out! It was a good bonding time!”VirginiaI mean that story! I was like, okay, okay.JessicaYes. I was like, what is happening here? But the thing is, it was true for me, too. I became a parent, and I remember talking to my therapist at the time, and I was like, “I think something’s wrong with me, because this is only good. I was like, where’s the anxiety? Should I have anxiety? Why don’t I have it?” Because I’m not a laid back person. And I just felt so preternaturally peaceful.So then I interviewed more non-disabled people and more disabled people and the trend continued with one exception. And at this point, I’ve interviewed about two dozen in each group, and it’s held steady.VirginiaWow.JessicaAnd I’ve thought a lot about it. The answer can’t be that everyone should just become disabled before having a kid. And it’s not like disabled people are better in some core way. So I’ve ended up coming down to these three explanations.One, becoming disabled or being disabled has so much overlap with becoming a parent. There’s a skill set that you develop as a disabled person in response to what it’s like to live day to day with a very, very needy body. What is it like to live day in, day out, with body-based problems that present themselves completely unpredictably, and with limited social resources to deal with them? There’s this problem solving and comfort that’s inherent with disability. And so when it comes to parenting the Venn diagram of skills is overlapped.VirginiaYou talked about sitting on the floor to make your bottles, or the woman who only used her mouth talked about the system she had in place to be able to make the bottles by the bed. There is so much creative problem solving.JessicaDr. Jessi Elana Aaron, who you were talking about, she had gotten her PhD and become a tenured professor, all with her disability. And so she had been practicing these incredible creative innovations for decades. So when it came to parenting, she wasn’t like, “Oh no, how do I use this body for the first time?” She’d been doing it for a long time in many contexts. So that’s one part.But then the other part is that I think becoming a parent, especially if you’re the one who is pregnant, is becoming disabled temporarily. And I think that is very, very challenging, if you live in a society, which we all do, where being disabled is a worst case scenario for a body. We are told that it is better to be dead than disabled. It’s understandable that someone might want to be dead instead of disabled. We’re reminded constantly that health is the ideal, and falling away from health is is to be avoided at all costs.Recovering from giving birth, I think, is a lot like becoming disabled. So suddenly you are living in a body that’s not safe in our world. And that that touches on something so primal. It’s like, How can I possibly survive with this new kind of body?And then I think babies are the ultimate disabled person. Because they’re so erratic and so needy. You know, we had a baby about a year ago, and I was noticing his breathing at the beginning. It was just like, sometimes fast and sometimes slow, and then sometimes he would not breathe for a bit, and I was having to pay attention to every sip of his bottle he took. It’s like you have this heightened attention to the to the way a body is working and the fragility of that tiny little body. It’s like, oh, my god, we’re all just fragile bodies and we could…
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