07-04-2025
The world often judges disabled parents. What if it listened to them?
When she was younger, before she became disabled, Jessica Slice would occasionally wonder what parenthood might look like someday — how a child (or two, or three) would fit within her familiar routines, her regular morning runs, her work, her social outings with friends.
But by the time she became a parent eight years ago — when she and her husband brought home their foster daughter as a newborn, a child they would later adopt — everything about Slice's reality had been transformed. At 30, she was diagnosed with postural orthostatic tachycardia syndrome, or POTS, which affects the body's ability to regulate heart rate, blood pressure, temperature and digestion; a year later, Slice would learn that her POTS was caused by an underlying genetic condition called Ehlers-Danlos syndrome, which affects connective tissues in the joints, tendons, skin, blood vessels and organs.
What this means for Slice, an author and speaker based in Toronto, is that she can stand or walk for only a minute at a time. She can sit upright, unsupported, for very brief periods; most of her day must be spent reclined. Her joints dislocate easily, and she experiences nerve and motor issues in her hands. Her muscles ache constantly. At temperatures above 73 degrees, she will quickly develop dangerous heat exhaustion. Within these physical limitations, she is a devoted and determined parent to her 8-year-old daughter and 1-year-old son.
Slice's forthcoming memoir, 'Unfit Parent: A Disabled Mother Challenges an Inaccessible World,' interweaves her personal experience with a deeper, researched examination of what it means to be a disabled parent in a culture that prizes individualism and fears disability. But the book also offers an illuminating perspective that applies to all parents. Disabled people have no choice but to learn how to be adaptable, and how to reject the impossible expectations of modern parenting; freed of those constraints, Slice says, their wisdom offers a hopeful new framing of what it means to be a parent.
Slice spoke with The Washington Post about her forthcoming book and her thoughts on disabled (and nondisabled) parenting. The following conversation has been edited for length and clarity.
Can you talk about what parenting looks like for you, how you've learned to accommodate the physical limits of your disability?
So one thing is that I don't yet live in an accessible home, which is a real goal of mine, so when I'm home, I'm mostly in bed because my wheelchair can't get most places in my house. So we do more in bed than I think most parents would want to admit, and I think it's okay! I feed my kids in bed. They eat chicken nuggets in bed, my youngest has bottles in bed, I change diapers in bed. My eldest has curly hair, and her hair takes a few hours to do, and we do that in bed. As soon as they wake up, they both get in bed with me. Maybe it's my own insecurity, but there is this sense that doing things in bed is lazy or halfway — but I think my kids feel really safe and cozy in bed with me. I just have to wash the quilt a lot more often.
How have your kids adapted to this?
I'm noticing with my 8-year-old, she's really willing to mention when something doesn't work with her. And I think that's because there is a sense in our family that it's okay if you can't do something. And often her limitations are more emotional limitations, but I'd like to think that I've set an example of it being okay to be limited. I think she's learning really important skills about empathy. When we go out the door, the three of us, she puts him in my lap, she opens the door, she turns around and locks it behind us. She is part of the team getting us out of the house. Oh — and she does Legos all the time, and whenever she builds anything, it always has a ramp. Even if the thing is, like, a dinosaur spaceship, it will have a ramp going up.
You write about the ways that parenthood — starting from the very first weeks parenting a newborn — are perceived very differently between disabled and nondisabled parents. Can you talk about that?
I had planned on just writing about the difference in experience between the two groups, but then I did a few interviews, and I was so surprised that nondisabled people had a much harder time adjusting to parenthood. At this point, I've interviewed about two dozen disabled parents and two dozen nondisabled parents. Nondisabled parents described those first weeks as profoundly destabilizing, one of the most harrowing times of their lives; it made them wonder if they could handle it. And all but one disabled parent said, 'It was okay! It was fine!' There were wild stories, too. [One woman,] Jessie Owen, had twins, and she's quadriplegic, she had high blood pressure giving birth, and she kept having to go back to the hospital after the delivery — but she was completely unfazed by it. She was like, 'It wasn't bad!' So I was like, what is happening here? It can't be that the only answer is that you need to be disabled in order to adjust to parenthood.
So what do you think is at the root of that difference of experience?
I do think that disability has a lot of overlapping skill sets with caring for a newborn. The familiarity with a very precarious and fragile body, and the need to put physical demands right at the top of the priority list — that's often part of disability. Plus, a lot of problem-solving.
And then I think another huge part of it is that, as a society, we're taught to fear disability. And labor and delivery is sort of an automatic relationship with temporary disability, and often people aren't expecting that. They have a baby, and they're temporarily disabled, and they're taking care of a baby, and in many ways a baby is like a disabled person. There's disability everywhere, and society has been telling you for decades that this is a terrible way to live. So for nondisabled people, there is this fear. A lot of people I spoke to described that there was this feeling of their bodies being weak and unpredictable that hit at something primal and core in them.
You talk a lot in this book about capitalism and consumerism-driven parenting, and how that can be 'suffocating' for all parents — how does this look different from the perspective of disabled parents?
I was cautious to talk too much about capitalism, but there was no avoiding it because the fact is that consumerism and parenting are pretty bound up together. But what can be freeing about disability is that so much of the product choices are not available to disabled people. Our crib choice is what we can get our child in and out of. Whatever car seat is light enough to carry on top of your wheelchair. In my case, I don't use a stroller at all, I have a $30 Velcro strap that a friend added additional fabric onto, so that I can have my infant on my wheelchair. The disability mindset is to take a step back and say: Actually what do I need? What is the reality of my body or my life? If I can admit that no product can insulate us from discomfort or pain, what is the best way forward? That is the disabled wisdom.
What you shared about being a disabled parent in public was really striking. Can you explain why that experience can feel so scary and vulnerable?
Parenting in public as a disabled person is hard because people often have opinions — and I think all parents are used to people in public having opinions, but when you're disabled, there is the added threat that a disproportionate number of disabled parents lose custody of their kids, so that commentary has an added weight. I think when a nondisabled person sees a disabled person parenting in a way that feels unfamiliar, it's like — 'That doesn't seem safe,' and that's because we want so badly to know what safe is. In an ableist society, you can say, 'Well, if that is wrong, then I don't have to worry about my own safety because at least I'm not doing that.' But it's just a distraction from this thing we all share, which is that we're doing our best, in public, and everything is a choice.
What can nondisabled people do to better be aware of that dynamic, or to offer support?
Thinking about access on a disabled person's behalf can feel so nice. When one of my kids' friends' parents says, 'Oh, I looked into the access and there is a ramp, but the bathroom's down some stairs, what can I do to make it more accessible?' or 'I called ahead and this one hallway might be too narrow for your wheelchair' — I'm just constantly doing that work, so when anyone takes some of that work on, it feels really loving.
Circling back to this looming threat of losing custody, can you talk about the relationship between Child Protective Services and disabled parents?
I really thought the concerns about CPS were overstated. But then when I started to research and interview, I was like, oh, these are understated. Because disabled people are often poor, they have a lot of interaction with government services, with Social Security, with Medicaid, and in each of those contexts, the person they're interacting with is a mandated reporter. And most mandated reporters are not disabled. And so you have a nondisabled person in the position of judging the fitness of a disabled parent. And also, the reliance on services and the need for help is itself considered a red flag. Even though every parent needs so much help — it's just that people with money can pay for that help. But the result of all of that is that disabled people lose custody of their kids a lot. But it isn't possible to get a good statistic because, for all sorts of complicated reasons, parents' disabilities aren't tracked in a national database of child removals.
There is a really profound idea at the heart of this book — that ableism is born of a fear of need, and a fear of death. How do we begin to rewire that way of thinking?
I think about the fear of mortality a lot because I really think the way I lived before becoming disabled was just this manic attempt to ignore my own fragility and my own mortality. And when I became disabled, everything I was working for was no longer possible. I went from being a business owner and a runner and out with friends most nights of the week, and within a few months I was in a one-bedroom apartment watching Lifetime shows with my sister, with no income. I grieved, and then I accepted my body. And then I found other people who are also disabled. I started reading a lot more poetry. I think what I found is that, actually, all it took for me was telling the truth. What it took was having to sit still and admit: I am afraid of losing people I love, and I'm afraid of no longer being alive. But the miracle of life is that we want to be here, and we want to be with the people we love, and we know it will always end. And we cannot eat or exercise or cold plunge or work ourselves away from that reality.
There is so much happening politically right now — the Americans With Disabilities Act is under threat, there are cuts to medical research and the Department of Education, and so many other imperiled programs and services that are vital to disabled parents and families. What do you hope that people might take away from your book especially in that context?
I think that a tendency we all have with politics is to think of ways that whatever is happening has nothing to do with us. To think that it could never be our loved one who was sent to El Salvador, or that I would never be caught at a border crossing, or that we wouldn't lose our Social Security income. To feel like there's some distance between us and current events. That's the same distance of thinking there's an immovable line between us and disability, between us and fragility. So I think that the first step is the same as when we're thinking about disability — that this is actually happening to all of us, and there is nothing special about me that will insulate me from injustice or pain or suffering. I have no idea how to change everything. But at the very least, you have to tell the truth, and go from there.
