We're Worried About The Wrong Things

The Myth of American Motherhood Is Inherently Ableist

The current construction of American motherhood is built on optimization. A good mother feeds her children the best food, gives her children the best education, and nurtures them in the best home. A good mother has the best skin, the best wardrobe, and the best body. She wields control in order to prove her goodness. To herself and to anyone watching.

A good mother’s end goal is, of course, a “happy, healthy,” child, which we broadly accept as unimpeachable. By spending her life in pursuit of her children’s health and happiness, a good mother will be gifted a “happy, healthy” life. But rarely, in the context of “good” American parenting, do we consider what we mean when we say “happy,” or what we mean when we say “healthy.”

Jessica Slice

’s beautiful, urgent new book, Unfit Parent: A Disabled Mother Challenges An Inaccessible World, is one of the most paradigm-shifting books about modern motherhood I’ve read in recent memory. In it, Jessica considers how our ableism, and our cultural understandings and misunderstandings of care inform a life, inform a parent, inform a family, inform a society. Jessica’s been receiving much deserved rave reviews in The Cut, The Atlantic, The Washington Post, Romper, and PBS Newshour, and I can’t say enough good things about Unfit Parent.

The first of many aha moments in your book came for me in your description of your first week of motherhood. You write about your first week as a mother and note that you had been primed by nondisabled mothers to experience this first week as the hardest week of your life, but you had a very different experience. So did many other disabled parents you spoke to.

“Nondisabled parents described the first week as some of the most challenging days of their lives: harrowing, destabilizing, and terrifying. In all but one case, disabled parents had different responses: their first weeks were . . . fine.”

As a nondisabled mother who has described my first weeks of motherhood exactly as you describe (harrowing, destabilizing, terrifying), this chapter absolutely rewired my brain. How does ableism and a cultural denial of human need inform the postpartum experience for all parents?

I worried about how nondisabled parents would react to this chapter because, if overly simplified, it could seem like I’m blaming them for suffering and making the ludicrous suggestion that they should have just become disabled before having kids. It’s not that at all.

There are a couple of ways of looking at the phenomenon. One, disabled people have been so profoundly rejected by consumerism and perfectionistic/ideal body culture that we end up with some distance from the lies it tells. Our culture makes it clear that we have failed and that our bodies are not welcomed in many places. So when that same culture tells us that we should be able to perform some ideal version of parenthood and that the right purchases can make it all beautiful, we are skeptical. In many cases, there are no “right” purchases available to us.

Two, and I think this is a lot of it, having a baby is, always, a relationship with disability and as a culture we are terrified of needing care. The person who gives birth is temporarily disabled by recovery and newborns are exceedingly precarious and demanding (aka disabled). Becoming a parent is crashing into an identity that we are taught to fear.

If we were to embrace our profound need for one another, then not only would disabled people be less excluded, but becoming a parent would be far less jarring for nondisabled people. The painful and fragile early days wouldn’t feel nearly as threatening. This element is complicated, of course, by the fact that our pitiful social safety nets make high care needs quite dangerous. But if becoming a parent puts you in league with others fighting for liberation, it might feel more empowering.

I wrote “MAHA” in the margins of so many pages of your book. I recently saw this chilling interview with a leader of the MAHA movement, and she says “If RFK is able to do what he needs to do as head of the HHS, we won’t even need healthcare. I’m saying we won’t be going to the doctors because we won’t be sick.” I’ll let you tackle the many reasons this statement reveals so much about a generally accepted ableist understanding of “sickness” and “wellness.”

MAHA is definitely an extreme version of it (and unscientific and dangerous), but I think the movement grows from something that impacts all of us — widespread avoidance of our mortality. We want so badly to find a way out of what actually unites all of us: our bodies will fail. The people we love will suffer. We are comforted by the delusion that health is up to us.

When we scramble to avoid that truth, we end up kind of frantic and desperate, trying to ignore what we actually know. In my experience, acknowledging that so little is in our control makes everything feel more precious.

The idea that there is someone “keeping us sick” is such a comforting sentiment if you think about it. Because that means if we were to take down the enemy, we could escape our physical fragility. The reality: we will continue to make a bunch of hard and imperfect decisions for our families and nothing will allow us to outrun what, always, comes for us all.

I am devastated when I imagine my kids suffering. I work to keep them safe forever, but I know I will fail. I would rather live in this honest and painful tension.

Momfluencer culture thrives on the toxic, commonly accepted idea that mothers are solely responsible for their children’s wellbeing, and that mothers should have the tools within themselves and within their insular family unit to guarantee their children’s thriving. I think most nondisabled people intuitively understand that perfectionism and the relentless drive to self-optimize is bad, but how does it specifically impact disabled folks?

As you know, I became disabled at 28, so I experienced a stark before and after. I am positive that if I had become a mom before disability, I would have believed in my own power and capacity to help my children thrive. I would have demonstrated to them that the only defensible life is an optimized one.

Becoming disabled forced me to reevaluate how I judge my own life and my own days. I am a slower, messier, and less efficient person. But the changes weren’t only internal. I also lost my income, a long-term relationship, and my sense of safety in the world by becoming disabled. It took years to find my footing again after my disability onset. But when I did, I realized I was part of a culture that prioritized community, innovation, flexibility, and acceptance. The values of disability culture were much more honest and attainable.

Those values have served me as a parent, despite the many ways that my parenting does not live up to influencer standards. Critically, I think those values serve my kids. They do not witness a mom living with the manic obsession with perfection that I had in my twenties. They witness a mom who expresses needs, rests a lot, has a mediocre diet, and orders grocery store cakes last-minute for birthdays. When they watch me go easy on myself, I think it’s permission for them to live that way, too.

Throughout the book, you highlight (again and again!) the creativity, adaptability, and joy of disabled people, and by the time you shared statistics about disabled people reporting greater life satisfaction than nondisabled people, I wasn’t remotely surprised. But can we talk about even the framing of that question - and how your perspective on “wellbeing” has shifted throughout your life and your work?

This question was bouncing around in my head this morning. I was in my adjustable bed (where I spend about 20 hours of the day) with my 1-year-old sprawled across my lap and chest drinking a bottle. He had one hand petting his barely-there hair and his other hand was up near my face, with a finger in my mouth. He flicked my lower lip over and over, never breaking eye contact.

I was there with him.

A number of other things were happening at that moment. My ribs really hurt today, and I injured my hip while sleeping last night. I am, as always, behind on everything and the house is messy. I am also grieving a friend who recently died, and I’m worried about another loved one’s health.

I had the thought that disability gives me tiny moments. Something about my always-suffering body and the strength of disability culture has invited me back to the smallest moments of my life. It gave me the ability for many things to be true at once and took away the promise that I could fix the hard parts.

This is kind of a new thought and may land somewhere else, but it feels true. I was noticing every little lip flick. His dimpled knuckles. His long torso and mushy legs.

That seems like well-being, right?

“Ableism lies and says that parenting correctly is possible.” THIS SENTENCE RIGHT HERE. Your book is full of keys to a greater understanding of life, but wow wow wow, this touches on so much re: popular motherhood culture, doesn’t it?

Wow. Thank you. Yes, I guess that it’s kind of the thesis of the book. That parenting feels impossible for everyone in part because we are all so steeped in ableism. Ableism tells so many lies: the most obvious is that it’s worse to be disabled (which is a quick skip over to thinking that disabled people are worse). But it also says that weakness is failure and that suffering is avoidable. All parents encounter their own weakness and all parents suffer. Ableism both grows from and perpetuates our current parenting system, demanding almost unlimited energy, financial resources, and superhuman durability.

If we could let go of the myth that there is an attainable and correct way to be a person, then we would more easily reject the related myth with respect to parenthood.

Willpower - it’s such a powerful engine enabling so many of our most harmful power structures. I think the idea of willpower (or rugged individualism or personal responsibility or grit or or or) is also responsible for so much human suffering. Could you talk about that a bit?

I am primed, both culturally and by my personality, to think that I can solve almost any problem through my own willpower. When I became sick in 2011, I woke up every day committed to not being sick. I spent two years seeing doctors and looking for a diagnosis, and once I had one (POTS) and was told that 50% of people with it can recover (an outdated statistic), I knew I would be someone who “overcame.”

There was an exercise protocol that claimed it could cure POTS, and I bought in fully, with the support of my cardiologist. It required going to a cardiac rehabilitation center three times per week and forcing my body to do supervised exercises that brought extreme dizziness, nausea, and weakness. Every time I went to rehab, I almost fainted. I spent the duration between visits recovering. I couldn’t drive to the center because I was too weak, and I had to coordinate rides with friends and acquaintances.

My entire life was in service of not being sick.

I finished the protocol after 16 months and was devastated to discover that it had not measurably improved my daily symptoms. A small bit of cardiac conditioning helps me, but I reach the point of diminishing returns quickly.

Around that time, my little sister developed symptoms of POTS, and we learned that we have a genetic connective tissue disorder (hEDS) that causes our POTS. For those with POTS secondary to EDS, there is no 50% statistic. I was not going to recover.

I was devastated to learn that I would experience painful and restrictive symptoms for the rest of my life. I had thought that, with enough effort, I could escape this physical suffering. Coming to terms with the limits of my power was very difficult.

But in doing so, the way I see the whole world changed. I was able to join the ranks of other disabled people — a company I am very lucky to keep. My judgment of other people also changed. So did my politics. When people suffer financially, mentally, or otherwise, it’s easy to blame them for their pain. It allows us to tell ourselves that we could never experience it. We would simply work harder or better.

I learned to acknowledge that while sometimes our own failures cause suffering, often it’s due to entrenched systems and the very nature of being human. The impossible effort to ease the suffering of ourselves and others is part of what makes life meaningful, partially because we will never succeed.

You underscore so many grim data points that impact a disabled person’s ability to thrive. The legal rights of disabled parents, medical autonomy, socioeconomic stability, and reproductive healthcare, are just a few ways disabled people’s lives are made more difficult. I’m struck again and again by how the siloing of American culture really allows variously privileged people to go through life entirely ignorant of systemic injustices - if those specific systemic injustices don’t directly impact their lives. Can we talk about this a bit? Why is this?

It’s shocking that in 31 states, a disabled person can legally be sterilized against their will and that most people don’t know this. Even those who care about reproductive rights. Disabled sterilization laws are active, and a state most recently passed one in 2019. Twenty percent of the country is disabled. Reproductive justice conversations MUST include disabled people.

I wish I fully knew why these conversations end up siloed. As for disability, I think a lack of accessibility is often at the root (and what’s at the root below that? Disdain?). Disabled people are underrepresented in almost every field (for example, around 2 percent of doctors are disabled). The people making decisions are not disabled, so their perspectives are limited.

Limited accessibility leads to low representation, which leads to limited perspectives, which perpetuates discriminatory laws, which leads to low accessibility and on and on and on. Those who currently have positions of power must insist on including disabled people at the top.

We should be included not only because we deserve to be there but because everyone benefits from a disability-influenced system. For one, almost everyone ends up disabled at some point. Two, disabled inclusion creates a system that allows for the variety of needs that all humans experience.

It may seem overly simplistic to say that the answer to siloed activism is representation, but I do think it’s a good first step.

Can we talk a bit about the dangers in essentializing someone’s personhood? In your chapter on selective abortions, you talk about how genetic counselors, when talking to a pregnant person who has just received a prenatal medical diagnosis for their fetus, are likely to lead with everything their child can not do. You point out that because disabled people’s lives are made so invisible (in the world because of structural barriers and in the media because of a failure of representation), it’s very hard for nondisabled people to imagine a person behind whatever the health condition might be. To illustrate this point, you imagine what a genetic counselor might say to someone pregnant with a fetus with your condition and compare it to how you’d describe your life. Here’s a snippet:

Your child will be in pain every day of their life. They have a high likelihood of developing digestive and neurological complications. They should avoid most contact sports because of the risk of injury. They will need regular ocular and cardiovascular testing to monitor for additional complications. Many people hEDS need to use wheelchairs at least some of the time. In some cases, pregnancy is dangerous for a person hEDS. Many cannot work or the type of jobs they can do is limited.

She will live in Paris and Berkeley. She will marry a generous partner, and together they will adopt a baby who is joy personified. She will, in her late thirties, discover she’s a writer and will find deep purpose and connection through that work. She will laugh easily and cry easily and will hate cooked carrots and will love clothes and have dozens of houseplants and will think about coffee as she’s falling asleep at night and will read poetry every morning. She will hold on tightly to her friendships and when she turns forty, dozens of those friends will send voice recordings of themselves reading her favorite poems. She will tend towards optimism and hope.

Nondisabled people’s failure of imagination when it comes to envisioning a disabled person’s life isn’t somehow “natural” - it stems from the way humans have structured society, right? You also show how such a failure of imagination has real life and death consequences for disabled people.

This was another section I was nervous to write. With reproductive care under attack, any implied criticism of abortion is risky. But I do think it’s important to talk about what it means when doctors are trained in a way that equates death and disability. There is this term that doctors use a lot — quality of life — and the presumption is that disabled people have a lower quality of life than their nondisabled counterparts. That assumption is not born out. In fact, there is a whole line of philosophical inquiry formed around the fact that disabled people are far happier than anyone expects (called the disability paradox).

When a person is pregnant, and a doctor defines a fetus’s future by physical or intellectual limitations, that definition excludes the full scope of the potential life. Only one smart part of their reality is illustrated here. Of course, abortion should be available to all who want it, and our broken social safety net often means that families cannot afford to have a disabled child, but we should still make sure that when a pregnant person receives a description of a disabling condition, they also hear from people who actually have that diagnosis.