The Disabled-Parent Myth
Dismantling the Disabled-Parent Myth By Sarah Wheeler, 'Mother of it All' podcast co-host & 'Momspreading' newsletter author. She also writes the parenting column "Good Enough Parent," and has written about parenting, culture, and neurodiversity for Romper, Salon, HuffPost, The New York Times, and more. She has a PhD in educational psychology from the University of California, Berkeley. Photo-Illustration: by The Cut; Photo: Liz Cooper After I gave birth to my first child almost ten years ago, I was a mess. I had a very specific image of the kind of mother I would be — somehow both obsessively devoted to my child and effortlessly easygoing. I was neither, and the resulting dissonance between the plans I’d made for my parenting persona and the reality of life with a newborn was almost unbearable. I’ve never been able to come up with language to explain my specific flavor of overwhelm — though thankfully, our ability to talk about perinatal mood disorders has improved over the years — having not met any particular diagnostic threshold but still knocked completely on my ass. Never, that is, until I encountered author Jessica Slice and began to speak to her about her own experience with motherhood, which she details beautifully and intersperses with oft-ignored research in her new book Unfit Parent: A Disabled Mother Challenges an Inaccessible World. Though Slice and I are both white, upper-middle-class American women just at the right age to ride the wave of millennial parenting anxiety, she did not experience her early days of parenting as a shock. What accounts for this, she argues, is the most visible difference between us — Slice is disabled. When she was 28, Slice fell ill on a hike in Greece and after years of tireless searching was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) — and I am not (or not yet, as Slice reminds me). What do disabled parents understand that others don’t? I asked Slice to elaborate for the lucky masses who have yet to be touched by her ideas. When you first began fostering your infant daughter, as you write in Unfit Parent, your doula told you that she’d never seen a new parent so happy. What do you remember from that time? You know, that comment from Renee, our doula, was a huge relief. I have always remembered my earliest weeks with my eldest child as some of the most peaceful and natural of my life, but I also had a nagging worry that I had created some self-protective rosy picture of those days and that I was actually distracted, anxious, and aimless. It would have been scary to discover I had made it all up. My response to parenting a newborn, and my parenting personality in general, is much different than anyone would expect if they had known me before I became disabled. For my first few decades, I thoroughly bought into the cultural narrative that good behavior and the right actions can give us perfect lives. I remember when a therapist told me I was a perfectionist, and I said no, because I didn’t ever do anything well enough to qualify. If I imagine the nondisabled version of myself parenting, she would have had a very hard time with the newborn days. Those weeks are so sloppy and unpredictable. Newborn babies are kind of terrifying. Even their breathing is erratic. Before my disability, I never stopped moving. I ran and I worked and I traveled and I saw friends. Being with newborns means a lot of boredom. They take a long time to eat and burp and fall asleep. The high-stakes monotony of a newborn would have destroyed me. But my years of disability had forced me to let go of my inflated sense of control. I had to grapple with the fact that bodies fail and lives are, generally, unpredictable. Something that will stick in my mind forever is, as you write, the idea that becoming a parent essentially makes you disabled overnight, and if you’re not used to that, especially in an ableist society, it can be crushing. I’m so glad that meant something to you. In my opinion, a firm delineation between disabled and nondisabled ends up hurting everyone. It leads to the myth that nondisabled people should be indestructible. Under that assumption, suffering is a result of failure. But we all have bodies that have limits and that will stop existing at some point. One definition I like for disability is “needing care,” which I take from Jennifer Fink’s work. Having a baby is a confrontation with our need for care. If you are the person who gave birth, your capacities shift dramatically right at the moment you are supposed to be caring for another person. The suffering during that time is real, but it’s compounded by our fear of being needy. If we weren’t so afraid of needing care from other people — and if society had much better social safety nets — then it wouldn’t be so scary to live in a (probably temporarily) disabled body. There is a direct correlation between how society treats disabled people and how new parents suffer during the first weeks. Let’s talk about how society treats disabled people, especially parents — you have interviewed many disabled parents who have built beautiful families, including University of Florida professor Dr. Jessi Elana Aaron, who performs all her tasks using only her mouth. She faced an incredible amount of adversity in trying to have a child who, by all accounts, is thriving. What do so many doctors, social workers, and others get wrong about disabled parenting, and what damage does it cause? During one of our calls, Dr. Aaron’s 5-year-old son wanted a Popsicle, and I was able to hear how they worked together to get it from the freezer. He climbed behind her on her wheelchair, and she raised the seat so he could reach. She reminded him to move other food out of the way so it didn’t all come crashing down. I FaceTimed with them both, and he was polite, joyful, and curious. He was proud to show me how he rides his mom’s chair with her. But when they go out into the world, they encounter constant judgment. People take photos of them. A driver recently pulled over next to her and warned her that it wasn’t safe to have her son on her wheelchair. Neighbors gossip on Nextdoor. When he was a baby, she had to switch physical therapists because her PT said she couldn’t travel to appointments with her son in a carrier on her chair. Medical discrimination is likely due, in large part, to the fact that 25 percent of people are disabled, but only 3 percent of doctors are. If medical school were accessible, then disabled people would be present to change the culture. I have my MSW, but I almost didn’t finish my social-work program because I couldn’t find an accessible field placement. Without disabled social workers, how can fair decisions be made about a disabled person’s capacity to parent? Our lives are a mystery to nondisabled people because we are excluded from mainstream society. Dr. Aaron and I talked about the misconception that nondisabled people have some objective view on bodies and that disabled people are too biased to really understand. It’s a complete logical fallacy. There is no view from nowhere. All people have bodies and minds and form their opinions from inside of them. Every one of us is biased, and any good decision needs a broad collection of biases. You also talk about the “disability paradox” — that disabled people actually report high qualities of life, but when you survey nondisabled people, they expect disabled people to be deeply unhappy. In fact, you’ve heard some harrowing stories of prospective disabled parents being dissuaded from having children “like them.” Medical professionals often assume that a disabled person would not want to have a child with their same disability (if it’s a genetic condition). It’s an interesting assumption, because the pregnant (or to-be-pregnant) person is the one who knows what it’s like to have the disability. One person I spoke with, Dr. Paige Church, is a neonatologist and pediatrician at Harvard with spina bifida. Colleagues frequently bring her in to counsel their patients who have learned, through in-utero testing, that their babies will be born with spina bifida. She reflected on the conflict between her own lived experience as someone with spina bifida (a very full and rich life with a job she loves) and the assumption that her colleagues make that fetal abnormalities likely indicate termination. Dr. Church calls it a medical failure of imagination. She said that her medical training equated death and disability, which, obviously, is not her lived experience. She is very much alive. The truth is disabled people are about as likely to report a good quality of life as a nondisabled person, despite assumptions to the contrary. Also, most (not all) people who become disabled find that they regain the prior levels of life satisfaction. The irony, of course, is that there is one population who reports a lower-than-average level of life satisfaction: doctors. If you had told me in 2010 that in 15 years I would be living in Canada and spending my time either in an adjustable bed or a power wheelchair, and leaving my house a couple of times each week, I would have been horrified. And I also would have been wrong. I am happier now than I was before my disability. Also, research backs me up. Disability and dissatisfaction are not correlated. Lots of people are unhappy! Disabled and not. I think about suffering a lot (obviously). My body suffers. So many disabled people suffer. Doesn’t that matter? I am always in pain (every single moment of every single day). But suffering isn’t what separates disabled people from nondisabled; it’s what unites all of us. The standard quality-of-life measurement is missing something. It makes humans two-dimensional. We need a new metric. Now that you’re eight years into parenting and welcomed a second child via surrogate last year, have you found a new metric? In 2014, I had just ended a 12-year relationship, was unemployed and incomeless, and learned I would spend the rest of my life disabled. Those were some very, very hard months. I spent a lot of time missing my former body. I couldn’t believe how little I did each day. One week, I did almost nothing except teach my bigheaded dog named Ben Nevis to fetch a sock. I had these thrifted yellow sofas printed with sea creatures and flowers. I loved them. I spent my mornings on those couches, reading poetry and journaling and, often, crying. I started writing a message to myself. “This, too, is a day of your life.” I was trying to learn that while my life in 2010 had been full of trips and parties and money, sofa days counted, too. I wasn’t trying to make the most of them or pretend they were easy — I just needed to remind myself that they were. They were days; I was alive. That has stuck with me. I judge myself by my ability to live my actual life. I don’t have to think these days are easy or remarkable. I just have to live them. What do you think that philosophy teaches your kids? Do you think they experience the world differently from having a disabled parent? Oh, goodness, yes. There are many things I cannot do with them or for them. They also see the world as less fair than they otherwise would because of a lack of accessibility. My 8-year-old is distraught every time I can’t enter a store or school with her due to a lack of stairs. My limitations give them permission to be needy. When I imagine the perfectionist version of myself parenting them, I cringe. I would have been relentless. They would have always felt insufficient. Thank goodness for a family structure that allows for fragility. I think my philosophy of living the days I have teaches my kids to value what I do: acceptance. One of the greatest lessons you’ve taught me is that fear of disability is fear of dependence — but dependence is inevitable and critical to a fulfilling life, especially as a parent. Right, that brings us back to: Presuming that disabled and nondisabled lives are fundamentally different hurts everyone. Disabled people aren’t helpless, and nondisabled people aren’t invincible. We all need interdependent systems to survive. And if we carry with us the misconception that we should be able to figure things out on our own, we end up with shame on top of suffering. Needing care does not disqualify you from providing care. The Disabled-Parent Myth