Disabled People: Writing Ourselves into Existence

I believe our community stories need to be documented,
and that they are sacred…
I want to write with the desire to heal myself
and my communities
by telling some truths. –
Leah Lakshmi Piepzna Samarasinha

My disability arrived with my first birthday. By the time I became an adult, I’d had tons of disability-related experiences but absolutely no idea how to put them into words. I grew up in the early years of television when there were only 4 channels, so everyone watched the same shows.

Television showed me a world where white people were the norm. They lived in stand-alone homes in the suburbs with trimmed grass in front and back yards. And they were all nondisabled.

My family related to those shows. They could see themselves in the dream of moving from our multi-flat working class white neighborhood to a white middle class suburb. I could not.

Where were the disabled people? According to this cultural arbitrator, we didn’t exist. Occasionally in a show someone was sick enough to be hospitalized where they either got cured or died. So I turned to books.

There I found disabled people but they were tragic (Tiny Tim), undesirable (Quasimodo), or cured (Heidi).

I rarely found anything written by a disabled person and when I did they were always trying to be as nondisabled as possible.

I yearned for words and images that reflected my disabled life experiences. Each time I tried to write my stories, I struggled with self-imposed censorship. Don’t tell your truth, I told myself, no one will understand. Since I couldn’t write the truth, I didn’t write anything.

I didn’t know that there are words for telling disabled truths until I was in my mid-20s and heard disabled poet Cheryl Marie Wade talk about gnarly hands gliding across marshmallow thighs. Cheryl wore skirts so that she could lift them up as she stated, in her lover’s voice, “the scars on your knee come together like lips, smiling.”

That moment gave me the key to the libraries of disability dreams, of disability possibilities, of disability language.

I remember the power of someone I could not even see across the crowded room, speaking my truth with love and passion and joy.

Decades later I would see performances by Sins Invalid,a performace project on disability and sexuality; the physically integrated Axis Dance Troupe; PHAMALY, a theater company with all disabled actors, and other performing groups that filled those disability libraries.

But it was the power of words that shifted me. Before Cheryl I hadn’t known that loving a disabled body was even a possibility. I didn’t know that we could create language that provided self-loving mirrors of our existence. I didn’t know that a bodymind like mine could not only be loved but be desired.

I appreciated Neil Marcus writing “Disability is an ingenious way to live” or Tobin Siebers stating “disability is always a positive.” In their words I was reminded of our communal disability fabulousness.

But still I hesitated. They could be brave enough to put these words out into the world. But not me.

Even though I am a great talker through writing my internal battle wages between society’s hatred of me and my desire to live and be loved.

I would periodically get asked to write something and I would freeze. Writing is not an automatic skill for me. I feared exposing my truth of daily survival.

There was too much to say, too much hurt when I wrote the words down, too much fear. I struggle/d with getting words onto paper.

Often I would read this quote from Audre Lorde, black lesbian feminist and in later life, disabled:

“I write for those women who do not speak, for those who do not have a voice because they were so terrified, because we are taught to respect fear more than ourselves. We’ve been taught that silence would save us, but it won’t.”

This reminded me that the need to write my truth is not just for me but for those who will never write.

Tanis Doe

Then Tanis Doe came into my life. A brilliant multi-disabled queer woman who had a PhD by the age I’d finished college, she showed me the importance of having a writing buddy. You’re not alone, she would remind me. Just write it down, you don’t have to publish it.

As Cheryl Wade said, sharing your work with other disabled writers creates “a pool of safety that you can float in while you figure out what the hell it is you feel, even, what you want to express about the experience of disability.”

When I had finally wrote my truth down Tanis would read every draft, challenge my ideas or choice of words and even do a rewrite if I asked. After a while I was writing pieces with her, often by the third draft not knowing what I’d wrote and what she wrote. Just striving for more clarity of thought, more accurate word choices, better storytelling.

Sometimes the writing got published in my name alone, sometimes in both our names. We’d discuss who needed that particular publication more in order to decide who was first author.

Tanis taught me that writing is about just doing the writing but also about not worrying about the how the writing will be received. She taught me to put words on paper and show them to someone who would read them with love and provide gentle shoves to make it better.

Tanis also taught me the importance of writing for academic publications. I’d gone to a teacher’s college where footnotes were optional. The world of academic writing was about graduate school, elitism, and obtuse language. In other words, a world far from my own life.

But Tanis showed me that academic writing was just a style, a code that I could learn. She pushed me to write down my big ideas, to plant my intellectual seeds not only in community spaces but also in academic ones. She took my writing from lesbian zines to mainstream academic journals and book chapters.

Before Tanis died unexpectedly in 2004, she had mentored me into a writer.

These days I think about Tanis a lot. Her photograph is on my refrigerator and the three things she loved (naked women, Snapple and sunflowers) are tattooed on my arm.

Telling Our Stories

I think about how other disabled folks get mentored as writers. How many stories go untold. As Leah Lakshmi Piepzna Samarasinha says:

If there’s not disability space that centers
queer and trans people of color,
sex workers, poor people, all of the above, elders, young people,
we won’t know that there’s similar stories.

Thanks to the work of many disabled writers there are now disabled-led publications that provide feedback, training and networking for writers. For the Disabled Writers community that is building and expanding disabled journalism. For all the disabled bloggers and the myriad ways they are mentoring, supporting and training disabled writers. For all the people burning up social media with disability truths that were unthinkable to write down during most of my life. Everyday I learn more.

I am especially grateful when I read something that shifts my thinking: Chris Bell calling out White Disability Studies; Vilissa Thompson framing #DisabilityTooWhite; Leroy Moore teaching about Community Scholars; Christine Miserandino framing Spoon Theory.

My wish for every disabled writer is to have the support that they want and need. That they have engaged writing buddies, such as I have with Naomi Ortiz. That they find thoughtful and knowledgeable editors so they can grow and hone their ideas with just the right words. That they are sought out by publishers who appreciate their often difficult journey to writing disability truths.

Reclamation Press

Victoria Lewis, disabled professor and actor, reminds us that writings by disabled people rarely get published or produced because we never get past the nondisabled cultural gatekeepers.

At Reclamation Press we invite disabled writers to share their truths in fiction and nonfiction. We focus on publishing wisdom from disability communities.

By that we mean that we publish people who are proudly identify as disabled. People who see disability as a gift in their lives – one that shapes their perspectives and opens new pathways. People who, through living at multiple intersections of difference from the white nondisabled world, imagine new and more interesting worlds.

I never planned to do this but the amazing Elizabeth (“Ibby”) Grace fell into my life a while back and led me to writing a book and now I work with her publishing books.

Becoming a publisher is a huge leap from being a writer. I’m enormously grateful for the writers, editors and publishers who blaze the trails and for the mentors who guide me on these writing journeys.

Books are expensive to make. The job of Reclamation Press is publish books by disabled writers because the world needs them. If you agree with our mission, please support our Indiegogo campaign so we can get four great books into print as soon as possible.

What writing by a disabled author changed your perspective?

Please continue the conversation in the comments.