A Beautiful Conversation That Will Shift Your Thinking About Parenting
What it looks like to parent with acute aliveness
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I get a lot of pitches to interview authors of books on parenting, which delights me as a non-parent invested in the way that parenting practices and parenting “culture” shape everyone’s worlds. I can’t say yes to every pitch, but I do open every book that comes my way — and when I started reading Jessica Slice’s Unfit Parent: A Disabled Mother Challenges an Inaccessible World, I immediately recognized what a perfect fit it was for this newsletter.
Unfit Parent is a book about disability visibility, but it’s also a book about how disability allows you to see norms — in this case, parenting norms — for what they are: cultural constructs. And kinda weird!! To me, that’s the brilliance of this book: it’s like picking up a big rock that’s been mostly buried in the soil, rotating it a few degrees, and then setting it down again. It sticks out! It’s visible, perceivable, in a way it wasn't before.
Whether or not you’re parent — or if you are a parent, regardless of the age of your kids — this interview is like picking up that rock. It’ll stick with you — and hopefully encourage you to buy the book, which is filled with insight that manages to be at once beautiful and razor-sharp. This book is fucking elucidating. I cannot recommend highly enough. Read on and see why.
Just to set a baseline: can we list a few things that able-bodied parents take for granted that are inaccessible to disabled parents? (I’m thinking too about what the small climbing gym did to make a space they hadn’t thought of as *inaccessible* into something that *is* accessible — but how much more welcoming it would have been if it had that capability built in)
Before I was disabled, I thought that wheelchair ramps were everywhere. It also seemed like any time I wanted to park, there were plenty of accessible spots, unused.
Becoming a wheelchair user introduced me to the reality: the world is incredibly inaccessible. Those houses and stores with signs out front saying everyone is welcome? I often can’t go in. Last December, some local parents recently had a “buy nothing” gift exchange. The idea was that we would trade our kids’ unused toys to bolster our holiday gift supply. Brilliant. Except the event was upstairs. I asked the host about alternatives, but nothing materialized, and I had to skip it.
I keep thinking about the idea of taking things for granted. I don’t wish that “I knew how good I had it” when I wasn’t disabled. I do, however, wish I knew how I was unintentionally excluding other people. Instead of regretting that my outlook onf life wasn’t rosier at the time, I regret the narrowness of my perspective.
Not to be too homework-y, but it would be fun to brainstorm in the comments ways we can make our own homes/organizations/communities more welcoming to disabled people.
In the beginning of the book, you talk about how, before someone has kids, it can be impossible to think of how a kid will “fit’ into your daily life. And then, if you have one kid, it feels impossible to understand how two will work, or more. But people just do it. Then you write:
“If you look at my life through the lens of your body, [parenting] may seem unsustainable. But my capacity — for joy, for innovation, for community — is enough.”
When we talk about “enough” and parenting, what are we actually talking about? And why do many people assume that a disabled parent can’t provide it?
Isn’t every parent trying to figure out what it means to be enough? We all come up with a definition formed from our childhood pain, the specific culture we live in, and our value system. For me, the worst-case scenario would be for me to treat my kids the way I treated myself in my twenties. I was relentless and demanding. Nothing was ever good enough. I convinced myself that optimizing myself and my days could make me happy. It was corrosive.
I think every parent would say that they want to make sure their children are safe and loved. But safety means different things to different people. We moved to Canada for our kids’ safety. We still mask indoors. Neither of those choices is ubiquitous, and many people would say they aren’t essential. But, as a wheelchair user, I make a daily choice that some criticize for being unsafe: my 1-year-old rides on my lap in my 450-pound power wheelchair. (I know people think this is unsafe because they tell me.)
The question of who we should be as parents is massive. It’s an entire genre. Authoritative or gentle. Screens or no. Helicopter or free-range. Food freedom or unprocessed. Anytime we are faced with a choice like this, it should be run through a couple of screening tests, in my opinion.
1.) Is it predicated on fear? Is there the implication that making and implementing the right choice can somehow insulate a child from pain? Because that is impossible.
2.) Who makes money? Parenting choices have been co-opted by consumerism. For example, breastfeeding vs. formula. Entire markets have formed around both options.
We determine what kind of parents we want to be by making hundreds of daily choices. I’d argue that very few of them are determinative. I know the things I do not want to be as a mom: absent, cruel, unpredictable, or dishonest. Other than that, I’m always just figuring it out.
There’s this Margaret Atwood poem I have read hundreds of times to my kids. It’s called “You Begin” and starts, “This is your hand.” She is telling her baby what’s in the room. The baby’s hands, the baby’s eyes, a drawing of a fish. As the poem goes on, she looks out at the world and admits that it “is more difficult to learn than I have said…the world burns.”
Then, toward the end, she directs the baby’s attention back to the room. “Your hand is a warm stone I hold between two words.” The final stanza takes us again to the baby’s hand.
It begins, it has an end,
this is what you will
come back to, this is your hand.
I think this poem is my value system. Can I teach my kids to tell the truth about the world and themselves? Despite everything, will they know that they can always come back to me, to this room, to themselves?
There’s a thread of the book that I’ve seen surface in a lot of recent work from disabled writers: that disability forces, then makes space, for a perceptiveness that many able-bodied people lack — in part because they’re just doing life on accelerated mode.
I appreciated how you put it to Glamour: “Becoming disabled pushed me into a relationship with actual life and actual people and our collective reality of all being fragile. It pushed me into being alive in a way that I wasn’t able to access before.”
How does that acute aliveness show up in your parenting?
I love that phrasing: accelerated mode. Sometimes, when I talk about my before and after with respect to disability, I worry that I oversimplify it. Before I wasn’t happy. Now I am. But it’s actually that happiness has a reduced significance in my life now.
The day I got sick/became disabled, I was on a hike on Santorini with my then-partner. The trip was expensive. Every choice felt critical. What would be the best breakfast? Would it be more authentic to ride a donkey up the hill or take a cable car? Which hike would give the ideal view of the blue domes? My whole life was like that. After the hike, sick with the heat exhaustion that would trigger my permanent disability, I took the time to change into “cafe clothes” before sitting down for lunch.
What’s underneath this kind of perfection-driven compulsion? I was trying to be the most alive — believing that the fullest life was a function of removing all flaws so they didn’t obstruct my view. Through my willpower, I could engineer happiness for myself.
My life now is like this: I spend almost all of my hours in my adjustable bed, and when I’m not in bed, I’m in my power wheelchair. I no longer travel. My diet is mediocre. I wake up in the morning and take the medication that allows me to sit up. While I wait for it to work, I practice French, listen to an audiobook, and wait for my children to join me in bed. My body always hurts — every single minute of the day. I shower twice a week. My eldest eats frozen chicken nuggets for lunch every day with so much ketchup that we call it “mountain in the middle.”
Here is the actual difference: my manic attempt to live a good life separated me from anything true. That kind of striving was a distraction from the truths that I feared most: every person dies; every relationship I cherish will end in separation; our bodies are fragile.
Becoming disabled forced me to look at the awful truth of our frailty and temporality. It’s the last thing I wanted to do. But, eventually, after years of denial and adjustment and finally acceptance, that reckoning with our mortality was my way through. I had to accept that as much as I want to avoid suffering and want even more for my kids to avoid suffering, none of us will.
It was then that I finally started to live my actual life. I try to ease my own suffering and that of others. I seek to participate in a more just world. But I will not succeed. Scrambling to fix my life and thinking I could was obfuscation. Working to ease my children’s pain, while knowing I can’t, is being alive.
To drill down a little deeper on that question — I was really struck by your description of your first months with Baby K and your experiences with the New Mothers group. You felt a keen sense of difference — and not because you were disabled, or because you hadn’t given birth to Baby K. Can you talk a bit about the differences you felt between you and these new moms when it came to the import of choice?
Well, my perspective on those differences has shifted over time! When I was part of that group, I felt embarrassed and like everyone else had received a script that I hadn’t. It’s also worth noting that many people feel like the odd one out when they join a group. Since we are only privy to our own internal experience, it’s easy to feel like everyone else in the group is the same and you are unique.
Caveats aside, there were some concrete differences between me and the other moms. First, I was the only one who wasn’t breastfeeding or attempting to breastfeed. Also, those who did supplement with formula all imported it from Germany (we used grocery store formula paid for by the county). Discussions often went back to the best German websites and shipping times. The first thing I noticed when I joined the group, which embarrassed me a lot at the time, was that they all had similar strollers. Mine was what’s called an “umbrella stroller,” named because it folds up small like an umbrella. It felt like they drove up to the cocktail party in SUVs and I pulled up on a razor scooter.
There was also a shared dialect that I didn’t speak. In part because my husband and I became parents with twelve hours’ notice: we were foster parents and were not expecting to get a call about a newborn. I hadn’t had the time to study and become fluent in the language of wonder weeks and sleep training and baby wearing. But there was something else — a sense that parenting could be optimized or solved.
There were many unknowns in K’s early months and her story belongs to her. But I can say this: for her first year, we didn’t know for sure if she’d be leaving in a few weeks, a few months, or never. I am not naturally a laid back person (not even remotely) but I found myself somehow ok with all the uncertainty. I remember telling my therapist at the time that maybe something was wrong with me because I was not worried.
In retrospect, I think it was that becoming disabled had forced me to make peace with uncertainty. I had worked so so hard to have the ideal life but learned that I actually control very little. My own unpredictable body paved the way for me to accept K’s. Without intending to, I had confronted the truth that the right formula or stroller or educational toys cannot insulate any of us.
The section of the book on the child welfare system is so skillfully organized and so powerfully written — which is a tribute to your skill as a writer, but also your exposure to the realities of these system: as a disabled parent, a foster parent, and a former social worker. This is a big ask, but I’d love to have you elaborate more for readers on how disability, paired with race and class and “exposure bias,” shows up in the child welfare system’s understanding of an “unfit parent.”
Wow! That compliment means so much coming from you. Thank you. I worked hard on that chapter. Ok, let me try to explain this succinctly. I will also say that I think it takes reading the actual stories of the people in the book to really see how this plays out in practice. I will focus on disabled people because that’s my topic, but these points apply to other marginalized groups too.
In the US, there are certain occupations that are “mandated reporters”; these include doctors, teachers, social workers, therapists, and law enforcement officers. Each of these people is required, by law, to report any suspicion of child or elder abuse or neglect. Failure to do so can be a felony.
On its face this seems positive: the more people looking out for children, the better. But in practice there are a few issues:
1.) Certain populations are underrepresented among mandated reporters, including disabled people. Under-representation leads to an incomplete picture of what it means to be disabled. For example, if media representations of parents are not disabled, and a mandated reporter’s coworkers are not disabled, but the people who come in and need services are, a skewed perception of disability develops. Imagine if the doctor sharing your office or the social worker across the hall were disabled. How might that change one’s assumptions?
2.) Certain populations interact more with mandated reporters, including disabled people. These are populations that are kept poor by outdated and discriminatory legislation. (For example, the maximum SSI disability payment is $997/month.) Because of poverty, a disabled parent is more likely to rely on WIC and Medicaid and other social safety nets. In each of those settings, they will inevitably interact with mandated reporters.
So, here’s the cycle: a disabled parent interacts with a mandated reporter who is unlikely to be disabled because training programs are often inaccessible. The mandated reporter then has an incomplete picture of disabled parenting because of a lack of disabled parent representation in society in general and in decision making positions.
Let me give you an example from my own field of study. When I was getting my degree in social work, I came very close to not graduating because I was unable to find an accessible field placement. It wasn’t until a professor and I became friends and she created an accessible option for me that I found a way through. I don’t have stats on the percentage of social workers who are disabled, but I know that only 3% of psychologists are (they have similar training to social workers). For reference, 25% of people are disabled and 10% of parents are.
But, I actually think the issue is more than just legislative and procedural. I think that we, collectively, see needing assistance and supports as inferior and as evidence of being unfit to parent. In reality, all parents need an enormous amount of help; it’s just that those who aren’t trapped in poverty can pay for it.
I like to ask researchers about something from the archives that surprised them — and writers doing interviews, like you, about a conversation that challenged or textured what you thought you understood or wanted to write. Did that happen with this book?
Dr. Paige Church was one of my first interviews, and my conversation with her shifted the direction of the book. In 2017, she wrote an op-ed for for JAMA about her experiences as a disabled doctor working with pregnant people. Dr. Church has a complex medical history due to spina bifida and significant daily symptoms, but her disability is often not apparent to others.
Her job includes meeting those who, in prenatal testing, discover that their fetuses have abnormalities. She told me about the “conveyor belt” these patients enter, starting with the prenatal testing and usually ending with pregnancy termination. She has a rich and full life including a job at Harvard. That said, the majority of pregnancies with a prenatal diagnosis of spina bifida are terminated. She explained that while this dynamic is painful, emotionally, she believes it’s often due to a medical “failure of imagination” about what disabled lives can be. Her medical training equated death and disability, but her life does the opposite.
It was that conversation that made me think a bit deeper about what questions around our fitness reveal about how we determine what makes a life worthwhile. It also made me sad for how we have narrowed our collective imagination. Variation and complexity is not only necessary for the survival of our species, but is connected, ineffably, to all that’s beautiful.
Originally, I wanted the book to focus on what disabled parents have to offer the wider parenting conversation, but considering this “failure of imagination” made it clear to me that the question is bigger than that. It’s about how we judge our lives. ●
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