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They were telling stories about my body even before they could see it. Stories of caution, of conjecture. “She’s not as big as she should be by now,” said the doctors. “There’s something wrong, but we don’t know what it is.” So, a cesarian section brought me into the world 6 weeks early. The rest of my body looked like other babies, in miniature, but to everyone’s surprise my hands had formed differently. My left arm was fused at the elbow and always sat at a ninety-degree angle. I had only one finger on each hand. I weighed one pound, sixteen ounces.
My mother lay in the cold white hospital room as doctors filtered in with bits of news, more stories about my body. “Her chances of survival aren’t good,” they said, leaving no room for questions. “Her weight is already dropping. She’s in intensive care.” “Babies born this prematurely usually experience severe brain damage,” said another doctor “You should prepare yourself for that outcome.”
***
At twenty-six I scour the available therapists on Psychology Today. It’s my first time seeing a therapist. I look for one who specializes in relationships and who is located near my office so I can fit it into my lunchbreak. There are only a few who are taking new clients, and I choose the oldest, thinking that she might be wise.
It’s summer, and the air is stifling as I walk the few blocks to her office. During our first meeting I tell her that I’m there because I’m ready to start dating for the first time. I’d never seen anyone with a body like mine who was in a relationship and so this felt like uncharted territory. This new therapist could be a guide. She seems excited at the thought, and requests that between sessions I think of places to volunteer as a way of meeting new people.
Toward the end of our second session, she looks me up and down, expensive-looking gold earrings jangling loudly in her ears. “I’ve been thinking about your problem.” Problem seems like a surprising word; I wonder what she’s referring to. “Men are very superficial. Last session we talked about volunteering as a way to meet single men. Perhaps you could volunteer at a center for the blind. That way you could meet a man who could love you for who you really are.”
I stand up and walk out of her office, my body knowing the way before my brain can calculate what I’m doing. I never contact her again, but for years my brain repeats her story because it’s a story I’ve heard from others, too, about what kind of love my body is worthy of receiving. I can only be loved by someone who can’t see my body. Maybe she’s right.
Later that week I’m waiting for the train at my neighborhood subway stop when a man humbly bows and hands me a few crumpled dollar bills. It’s not the first time this has happened, but I’m too tired to refuse it. I take the money and nod my head. “Bless you,” he says. I’m thankful for the connection of another person, that I get to witness kindness in a day where maybe others don’t, but I wonder what story he’s telling himself about my body that makes him choose me for his misdirected generosity.
***
I’m twenty-eight and getting a master’s degree in creative writing. I’m the only visibly disabled member of the class and I’m trying, for the first time, to write about my body. We sit in classrooms high above a noisy city, sharing a long table, our stories on papers fanned out with red marks and penciled thoughts. I write something funny and grateful, and the class wants to know about my pain. “Are you being funny to cover over the shame?” they ask. They cock their heads almost in unison, asking questions about my stories that I haven’t even thought to ask myself yet. I’m not sure. Maybe? But pain and shame are the only stories I’ve ever heard about what it means to be in a body like mine. I’m trying to show them that there’s also something else, a kind of joy.
I don’t have the words for it yet, but I’m spending my days in these classrooms trying to excavate my own story from the mountain of other people’s narratives that have attached to my body like little remoras. Narratives I didn’t even know I was carrying have lodged so deeply that I have a hard time telling which ones belong to me. It will take a lifetime to untangle them, to wrestle the stories of my body away from people who don’t even know what they are taking away.
***
I’m 31 and on a date with the man who will become my husband. It’s the first time I’m picking him up in my car and I don’t know what he’ll think when he sees that I perch in the driver’s seat on a makeshift cushion and that two blocky knobs latch on the steering wheel so I can grip it. The car has been modified just for me. My feet sit on two heavy pedal extenders, the gear shift is latched with a rubber band. My body stiffens as his eyes explore the car. He doesn’t say anything. Instead, he smiles as his hands roam across the unfamiliar knobs and buttons. I feel my body relax. I smile.
***
Eight years later, Roe v Wade is overturned on an unassuming Friday morning. I feel the news in my body first. It’s the same feeling I had the morning after the 2016 Presidential election of a man who will make some bodies less safe in the world. It’s a feeling I’ve felt before, from a time I can’t identify or maybe even know at all: involuntarily stooped over, like I’ve been punched in the gut, like someone is stepping on me. I think of the people whose bodies will not be able to choose; it’s a feeling I know well.
I can’t stop thinking about what I’ve recently begun telling my creative writing students. It’s not something I heard in my graduate writing program. I didn’t even know if it was real. All I knew is that each time, it held true for me.
Make your writing practice an embodied experience, I tell them. I always stop here to see if they are listening, to see if there are any sparks of recognition. I say it slowly because it’s important. When you’re writing, or revising, you should learn to listen to your body. In workshop, when you’re receiving comments from other writers, listen to your body.
When a piece of writing is finished, I say, you’ll feel it in your body. What does finished feel like for you? The first few times I wondered if they’d listen to someone whose body didn’t look like any of theirs, or if my words were already drowned out by the stories they were telling themselves about which bodies are listened to and which are ignored. But I guess maybe that’s what teaching is, right? A way to share something you know with others? So I keep saying it.
Listen to your body, I say. This is so important. This is a part of the process. Don’t ever stop listening to your body. When another student’s feedback rings true, you’ll feel it in your body, I say. When you write the truth, you’ll feel it in your body.
A version of this essay won 2nd place in the RCWMS annual essay contest in 2023. The writing prompt for the contest was “bodily autonomy.”
Each July this publication highlights Disability Pride Month, a month that honors the history, the lives, the achievements and the struggles of the disability community.
Read the essay that was inspired by Disability Pride Month last year here.
Resources for Disabled Writers
Last year for Disability Pride Month I curated a list of books that have influenced the way I think about my own body and its place in the world. (That list has been updated for 2024 and can be found in my Bookshop Affiliate Page. Purchasing books directly from this list supports me as well as local independent bookstores.)
This year I’ve been focused on gathering resources for writers and creatives who identify as disabled/chronically ill/neurodiverse. I’ve posted the list on my website, and included a form (at the bottom of the page) where anyone can submit their own relevant additions. Here’s what I have so far. I’m hoping this list will continue to grow:
Writing & Media Related Organizations
Disabled Writers: a resource to help editors connect with disabled writers and journalists, and journalists connect with disabled sources. Their goal is to promote paid opportunities for multiply marginalized members of the disability community, and to encourage editors and journalists to think of disabled people for stories that stretch beyond disability issues.
The Inevitable Foundation: “Empowering mid-level disabled writers with the job placement, professional development, funding, networking and mentorship they need to build thriving careers in the entertainment industry.”
The Perkoff Prize at The Missouri Review: “The Perkoff Prize is a tri-genre contest that awards $1000 and publication each to writers of the best story, set of poems, and essay that engage in evocative ways with health and medicine as judged by the editors.”
Rooted in Rights: “Rooted in Rights tells disability stories by disabled people. Since 2015 we’ve produced short videos, short and long form documentary pieces, blogs, trainings, resources, and events.”
The Squeaky Wheel: Disability Satire for Disabled People, a great place to submit satire and humor pieces.
Zoeglossia: a community for poets with disabilities.
Grants, Fellowships, Residencies & Scholarships
Awesome Disability: Launched in April 2017, Awesome Disability is an independent chapter of the Awesome Foundation, a global community that provides micro-grants with no strings attached.
Deaf Artist Residency Program at the Anderson Center: “Anderson Center at Tower View provides residencies of two to four weeks’ duration from May through October each year. Since 2014 the Anderson Center at Tower View has offered such month-long residencies in alternating years to small groups of Deaf artists, including poets, fiction writers, and nonfiction writers, whose native or adoptive language is American Sign Language (ASL). Supported by the National Endowment for the Arts, the Anderson Center's Deaf Artist Residency is the only program in the country that is Deaf-centric. It was developed with the goal of contributing to the creation of a network of Deaf culture-creators in Minnesota and the United States.”
Disability Visibility Scholarships for Esme Wang’s The Unexpected Shape Writing Academy: The Disability Visibility Fellowships are sponsored by Alice Wong (she/her), a disabled activist, writer, editor, and community organizer. Each of the ten fellowships will give the recipient full access to The Unexpected Shape Academy and Writing Intensive for three months.
The Judy Neri Scholarship for Disabled Poets (The Writer’s Center): “Judy was was a writer in Silver Spring, Maryland, and a passionate supporter of the DC area poetry community. In Judy’s memory, each year, The Writer’s Center will award scholarships of $250 to 4 recipients (which may be used toward 1 or more workshops at The Writer’s Center).”
NBCUniversal Tony Coelho Media Scholarship
Stimpunks Creators Grant: arts grants for disabled and neurodivergent creatives
VSA Playwright Discovery Program at The Kennedy Center (ages 14-19)
Virginia Center for the Creative Arts (VCCA) - Marian Treger Fellowship for Enduring Creativity: This VCCA fellowship is intended to support women artists (fiction writers, screenwriters, or visual artists) emerging in mid-life and beyond, whose creative paths, like Marian Treger’s, may have been detoured or hindered by chronic health conditions or disabilities.
Cool Stuff for Writers
The Disability Dispensary: lots of swag for disabled writers, designed by writer and activist Kelly Dawson.
Happy Disability Pride Month!
Allison
You are reading the intangibles, by writer and creative writing instructor Allison Kirkland. This publication is geared toward writers of memoir and creative nonfiction and the people who love them.
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Beautiful. Thank you 💜
I appreciate what you have shared in this writing. You are an amazing woman and I am honored to be part of this journey as you reveal your thoughts and experiences.