In 2011, Jessica Slice took a strenuous summer hike on the Greek Island of Santorini. She didn't drink enough water and when she returned to her cruise ship, she felt dizzy and nauseated.
She thought it would pass but her symptoms got worse, making it hard for Slice to stand upright without fainting. And they didn't go away.
After years of tests, doctors' appointments, rehabilitation programs, and frustration, Slice was eventually diagnosed with postural orthostatic tachycardia syndrome, or POTS, an autonomic nervous system disorder.
She eventually embrace a new identity: a person with a disability. Becoming disabled radically changed her life, in ways that she says are both difficult and empowering.
Then she became a mom.
Slice's new book, Unfit Parent: A Disabled Mother Challenges An Inaccessible World, chronicles her experiences as a parent with a disability, first as an adoptive parent and then as a biological parent via gestational surrogacy.
Like many parenting memoirs, her book is full of diaper explosions, Googling "how to take care of a newborn," and moments of tenderness. But her story is also defined by physical and emotional challenges that forced her to embrace depending on others.
And that willingness to ask for help, Slice argues, is something all parents — disabled or not — can learn from. Slice offers a perspective from the world of disability justice, a movement that fights against "corrosive perfectionism" and instead advocates for mutual aid, infrastructure that welcomes all bodies, and stronger social safety nets.
"Every parent I know feels like they are one logistical hiccup away from a breakdown," she writes. "How did we get here? Why does parenting feel like an impossible feat that threatens to destroy any person who takes it on?"
Slice spoke with NPR about her book. Their conversation has been edited for clarity and length.
You argue that parenting is about accepting a loss of control. As much as they might like to, parents cannot make their kids do what they want. How did becoming disabled help you come to accept this?
I am, by nature and nurture and being an eldest daughter, a very controlling person. I was that way to an extreme in my 20s. I had this feeling that my own effort could make me happy if I only figured out how to do things well enough: Work hard and eat the right things and plan the perfect week every week. I just thought there was perfection attainable and that I would find satisfaction there. I never understood why I felt like I was crumbling inside. I had this deep, deep kind of dissatisfaction.
At 28, I became disabled. My onset was so sudden and changed my life so profoundly in the course of a day. It took years to accept that I was sick, that I was disabled, and that I would never be well again. In that process, the sense that a good life was within my own power had been taken from me.
So when I became a parent, after becoming disabled, I no longer put pressure on myself as a parent to do everything right. I also don't put pressure on my kids to do everything right. In many ways, my parenting is limited, because I can do a lot less physically than I could before. I mean, dramatically less. But there's something really foundational: I am okay with life not being perfect or beautiful according to all my expectations, and I'm okay with my kids not being those things either. Although, of course, my kids are beautiful.
Our cultural ideas of perfection are often related to capitalism, which gives us the idea we should be productive and independent and not rely on anyone else for any kind of help. What are some examples of how this mindset shift shows up in your parenting?
I don't track [developmental] milestones for my kids. I can't even remember when my first child did anything. I hold this so loosely it doesn't stick in my brain. I believe that if my kids need additional support, I will know because I'm an attentive, involved parent. I don't really care when they're supposed to do things. I'm not always worried about when they will crawl, when they will say a word, or put a thing in a bucket. When they do things, it's very funny and delightful. We have a baby now, and every new thing he does is a shock.
I don't think milestones writ large are a bad idea, but I think within a certain highly competitive, perfectionistic population — largely higher income — milestones are this anxiety-inducing thing.
The milestones are only one example. Releasing control, or this sense that there's a rightness that we need to be aligning with as much as possible, has given me a sense of freedom. I'm not watching my kids, waiting for them to be right or wrong.
Our safety net in the U.S. is so weak, it feels scary that we might need to rely on it. But parenting is, by definition, caring for a vulnerable person. Why is disability so stigmatized in our culture, while parenting is praised?
That's why parenting can feel so jarring. It's this lauded milestone, but when it happens, it hits on something kind of primal: This isn't safe, this isn't good, because there's this interdependence in parenting. When you become a parent, you are entering into a system where you need care. If you're the one who gave birth, certainly, but no matter what, parents always need help. You cannot do every single part of it on your own, and so you become dependent.
And so I think part of why parenting can feel so difficult is because it's a relationship, even unknowingly, with disability. We're terrified of disability. Disability is equated with mortality. And the last thing we want to think about with parenting is that we're fragile, that we're mortal.
Non-disabled people have so much pressure to be invincible: you shouldn't need care, you shouldn't be needy, shouldn't mess up, this shouldn't be hard. If we weren't so scared of disability, then we could fully admit each of our relationships with fragility. When you care with an acceptance of limited capacity, it leaves us open for so much more joy, but also just so much honesty about the experiences we're actually having.
You write about the horrific ways that people with disabilities have been treated by the U.S. health care system: institutionalization, forced sterilization, denial of care. And you personally have had doctors act as gatekeepers around your "fitness" to become a parent. What would justice and equity for people with disabilities look like in reproductive health care?
Justice for disabled people starts very young and goes all the way through. Disabled people are often excluded from or don't have access to inclusive sexual education. And they experience sexual assault at a greater frequency than non-disabled people. Disabled people are much less likely to receive a pregnancy test than a non-disabled person. And a lot of obstetricians and gynecologists don't have accessible [clinics] and training for treating disabled people.
The majority of doctors would prefer to not work with disabled people, according to Dr. Lisa Iezzoni's research. We take so much time and energy and manpower, and doctors are operating in a system that does not allow for that in order to get paid.
Disabled people are often counseled to not reproduce, lest we produce another disabled child. Our second child was born via surrogacy, and people said to me, "Aren't you going to make sure the baby doesn't have your disability?" And I was like, "Well, I really like my life." I don't think that should be the assumption, that we wouldn't want another person with the life I'm living.
Getting a power wheelchair transformed your life. How did parenting change for you once you started using one?
I can stand for about 30 seconds to a minute before I become very symptomatic and start to black out. I can sit upright, unsupported, for three to five minutes. And for the first seven years I was disabled, I truly never considered a power wheelchair. I just thought that the world available to me was the world that I could access if I never had to stand more than 30 seconds.
Then when my daughter was one and started doing more stuff out of the house that I couldn't join her for, like going to the playground and a ballet class, I just really wasn't satisfied missing them. And then I looked into a power wheelchair.
It changed my life. I can go places now. I can be in the world with my kids, but also do my own things. I can go for long walks. I can go inside stores. I get to be in the world again. And now the thing that's limiting is: Where can a wheelchair go and not go? I think people feel very sad for me when they see me in a wheelchair. But it's actually so much more joyful for me than when I didn't have one.
Mara Gordon is a family physician at Cooper Medical School of Rowan University and a contributor to NPR. She writes the Substack newsletter "Chief Complaint."
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