A Wound in the Shape of Your Words

July is Disability Pride Month

Jul 31, 2023

It took a long time for me to start writing about my disability, for reasons that I’m still untangling. One reason is that I was already so public. Any stranger who saw me on the street already knew one of the most intimate things about me, that I had a body that looked markedly different than others: shorter of stature, with a limb difference that meant I didn’t have all five fingers on each hand. Did I owe anybody anything more than that? Keeping something for myself – what went on in my own mind, what I thought about my body – felt like a small way to reclaim myself from others, to hold a boundary that could keep me safe.

Another reason was that I worried that if I started writing about my disabled body, the identity would swallow me whole. If I was disabled, could I write about anything else, or would it be all anybody wanted to hear from me? It was certainly all anybody asked about, and they did so with wild abandon. People of all ages still stop me in the street to ask me what happened to my hands. Just last year, while teaching my Intro to Memoir Class, a student walked up to me after our first class. I assumed she had a question about the homework assignment or maybe wanted to clarify something I’d said. “I’m a doctor, so I just have to know,” she said. “What is your diagnosis? It was all I could think about while you were teaching.” It felt like I’d suddenly shrunk before her, stripped of all my authority in this classroom, reduced to a medical diagnosis.

If my disability was all anybody wanted to know about – to the point that grown adults would be incapable of concentrating on anything else I was saying when they paid for my knowledge and experience – then it was the last thing I’d give them. I didn’t want to satisfy their curiosity. I wanted to tell people my favorite color and why I liked The Beatles so much and what I thought about as I was trying to get to sleep and what my favorite smell in the world was and why I liked to listen to songs on repeat and where I most wanted to travel. But nobody asked about that

The last reason that I’ll mention here is the one I regret the most: I didn’t write about my disability because I didn’t think it was important. I’m a voracious reader; there is a running joke in my family that as a child I’d check out 7 books from the library the day before a family beach week and read 2 of them before we left for the beach. And yes I could still relate to Sylvia Plath’s quandaries about which fig to pick from the fig tree when there were so many choices and I could relate to Whitman’s maximalist love for the world around him and certainly I could relate to Ralph Ellison’s creeping feeling that he was in plain sight and yet nobody could really see him. But until I was in my late twenties I never read about a character whose body looked and moved through the world like mine. If nobody is talking about it, I figured, when I was very young, then it must not be that important.

My first attempt to write about my body was in 2012 when I was accepted into an MFA program for creative nonfiction. I’d entered the program with that express purpose. I was the only person in the program writing about the way my visibly disabled body moved through the world. I’d been encouraged to think of this experience as unique, but the other side of that coin is isolation.

Every single professor of mine recommended the same book to me as encouragement and inspiration, a book that had made the author somewhat of a celebrity in the literary circles of New York City, but that I found intense and depressing. I didn’t see much of myself in her words. When I googled the author I learned that she’d died by suicide soon after publication. I wondered if I was doing something wrong, if I was meant to write the way she did, see the world the way she did. I didn’t know who could answer those questions for me. It threw me off balance.

I found that it took so much energy to write about myself when I felt like I was one of the very few passing through this uncharted terrain. I always thought of myself as edgy, ahead of my time. But the truth was that I followed the world as it was laid out to me. And I didn’t have confidence in my own observations and impressions if I couldn’t see them also reflected in the books and art that I consumed.

So much has changed in ten years. After years of teaching and writing about everything else, I slowly waded back into the conversation about my body. Now, on Instagram, there are hundreds of writers exploring this topic, forming a community, passing stories back and forth.

I first stumbled upon Rebekah Taussig (@sitting_pretty), who, in her words, is “narrating life from my ordinary, resilient disabled body.” An Instagram post from February 12th, 2019 made me stop in my tracks. The photo is of Rebekah, a young white woman with an edgy blonde haircut, sitting in her wheelchair wearing a stylish party dress, waving her hands in the air in a way that makes it look like she’s dancing.

Rebekah Taussig, photo courtesy of her Instagram account @sitting_pretty

The text accompanying it says:

“I’m sorry you’re disabled.” It was heartfelt, earnest, and I’m sure kindly meant. Wait, what? I hadn’t seen it coming. I certainly hadn’t been feeling that way myself. But it quickly dawned on me. I’ve been emphasizing the hard lately. The painful, the scary. And this folds into one of the most prolific narratives of disability we’re already used to hearing. Disability as tragedy. Profound, comprehensive loss. Cut off from joy. The slippery part here is that some of these descriptions are true. I’ve named some of these truths lately. This is hard. I’m scared. All true. The problem isn’t that disability is never tragic or hard. The problem is that tragedy alone is a gross oversimplification. It’s starved for the meatiness of the real experience.
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There are lots of things that are hard. Motherhood. Graduate school. Running a marathon. Being a HUMAN. But even when those experiences are presented to us with all the hard things in the forefront, we don’t say, I’m sorry you’re a mother. I’m sorry you’re getting your PhD. I’m sorry you’re a runner. I’m sorry you’re a human. (Well, maybe runners deserve our condolences. Marathoning sounds like a miserable business to me🙃) We don’t tend to extent pity for these hard things, because we value them. Even when the reward is so small in comparison to the sacrifice, we imagine some kind of trade-off in the works. We recognize that in the grueling sweat and the sleepless nights and the mental agony, a pearl is being made. It’s harder for us to recognize the loss AND something valuable when it comes to disability, but for me, my disabled body has brought enough pearls to wrap around the moon.

I could barely breathe as I read those sentences. I’d never heard anybody express this before, a thought that I figured only belonged to me. The both/and, the nuance of what it means to live in a body different from the norm. She felt it. She wrote it. Now I got to read it. Her work — I later read her book — answered questions for me that had been sitting at the edges of my mind, questions that I thought were small but were actually big, taking up space where they didn’t need to be. Questions like: if my body looks different, can I have everything I want or do I have to settle for a lesser life? Do other disabled women feel more trepidation around dating than women who aren’t disabled? How do you navigate meeting new people if you look visibly different, and am I doing it wrong? When I read her words something in me felt stronger, more settled.

Since she launched – and I found – her Instagram account she’s published a book, gotten married and had a child and she’s writing about the unique journey of disabled parenting. I’d never seen a visibly disabled parent before I saw her images on Instagram. (Have you?)

Reading her words unleashed a hunger I hadn’t known that I had. I was hungry for more of this, this feeling of seeing myself reflected in the world. Being known is validating. Being known is scary. Once you’re known you can’t shrink away anymore because you’ve felt something different, something better than shrinking.

I sought out more books by writers with bodies that work differently, look different, feel different. This year I was fortunate to read Easy Beauty, by Chloé Cooper Jones, a recent finalist for the Pulitzer Prize. My copy of this book is full of underlined sentences, exclamation points filling the margins.

Photo courtesy of Chloé Cooper Jones’s instagram account

On page 165 she writes:

There was one other kid in my elementary school with a disability. She was autistic […] I was her true twin in the eyes of our teachers. We were lumped together, disqualified together, and I didn’t want to be disqualified, and so I thought that meant I didn’t want to be considered disabled […] I learned to resist my identity in a grasp at agency and failed to contemplate how I may have, instead, learned to seek my place in a disabled community, one that might have helped me feel less alone.

I had to sit with that paragraph for a long time, feeling everything: the anger of dismissing my own experience for so many years, the joy at being recognized, the sadness that this vital recognition didn’t happen until I was in middle age. Sometimes while reading Easy Beauty I just had to sit and breathe for a moment, tears pricking my eyes, before I could turn the page. There had also been a few disabled kids in school with me, and in summer camps. I thought then of how I would avoid them, too, scared that we would be lumped together, that others would assume we were the same. By turning away from them, I was also turning away from myself.

Each time I read an experience that mirrored mine in these books or Instagram posts, I felt a little bit firmer, like something inside me had become more solid. It made me realize how hollow I’d been before, and how this hollowness was a place where so many things I tried to turn away from resided: shame, self-doubt, uncertainty. Thanks to those writers – who knew this subject was important, and who dared to give readers a little bit more of themselves – I am rooting these things out from their hiding place, and replacing that hollow middle with myself.

I grieve deeply for the time I lost, the time I could have been exploring the nuances of my own experience. But I am overjoyed to see that other writers are taking that work seriously, showing both the darkness and light, writing their books because they know that if they reach one person who needs to hear their words, it will be enough.

This Substack is not only for disabled writers, but on this last day of Disability Pride Month I want you to ask you, writers – disabled or not – what are you *not* writing about?

What are you hiding from?

What feels too difficult to untangle?

What feels like it’s not important enough to devote time to?

There’s a lot of magic in those spaces, waiting to be found.

I’ve always admired this poem by Sean Thomas Dougherty

Want More?

If you’d like to read more books and essays by writers who identify as disabled or who write about differing bodies and minds, this list is a good place to start.

Because I have a physical disability, this selection of books skews toward the physical rather than the mental. This list was originally created in 2023 and has been updated in July 2024.

If you want to purchase any of the books on this list you can find them on my bookshop.org affiliate page. Buying directly from there helps support me as well as local independent bookstores. You can also probably find most of these books at your local library. And if a book that looks interesting isn’t there most libraries take requests from their patrons, so you can request it!

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judy Heumann (memoir)

Chair/Body/Home by Hannah Soyer (essay)

Crip Kinship: The Disability Justice and Art Activism of Sins Invalid by Shayda Kafai (nonfiction)

Deaf Utopia by Nyle DiMarco (memoir)

Demystifying Disability by Emily Ladau (nonfiction)

(This is a fantastic primer for your workplace, book club, or any group that’s trying to better understand how to be an ally to the disability community.)

Disability Visibility: First Person Stories from the Twenty-First Century by Alice Wong (nonfiction anthology)

Disability Intimacy: Essays on Love, Care and Desire edited by Alice Wong (nonfiction)

Disfigured: On Fairytales, Disability and Making Space by Amanda LeDuc (nonfiction)

Easy Beauty: A Memoir by Chloé Cooper Jones (memoir)

A Face for Picasso by Ariel Henley (memoir)

Flesh and Bones: Learning to Love this Body by Liddy Grantland (memoir)

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke (memoir)

I Live a Life Like Yours: A Memoir by Jan Grue (nonfiction, translated from Dutch)

Losing Music: A Memoir by John Cotter (memoir)

I'll Pray For You: And Other Outrageous Things Said to Disabled People by Hannah Setzer (memoir)

The Pretty One by Keah Brown (memoir)

Raising a Rare Girl by Heather Lanier (memoir)

Sitting Pretty: The View from my Ordinary, Resilient, Disabled Body by Rebekah Taussig (Instagram @sittingpretty) (memoir)

Such a Pretty Girl by Nadina LaSpina (memoir)

True Biz by Sara Novic (fiction)

The View from Down Here: Life as a Young Disabled Woman by Lucy Webster (memoir/nonfiction)

We've Got This: Essays by Disabled Parents edited by Eliza Hull (nonfiction)

Year of the Tiger: An Activists Life by Alice Wong (memoir)

Unlearning the Ableist Writing Workshop by Sarah Fawn Montgomery. This primer changed the way I run my writing workshops. (I am also finding it metaphorical that as I type this draft the word ableist has a little red line under it, like it’s misspelled or unrecognized.)

What did I miss? What haven’t I explored yet? Do you have any relevant books/essays you’d like to add?

the intangibles

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