In ‘Unfit Parent’, a disabled mom shares parenting lessons, for everyone

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.

Then she became a mom.

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?”

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? 

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.

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? 

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.

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.