In spring of 2012, I was preparing to graduate with my M.A. in English. I was teaching with a respected professor and touching up my first real CV. Terrified of the great blankness that would follow graduation, I planned to teach, but I had no idea how I would continue to meet intelligent and fascinating friends. My colleague passed along a call for student essays on the experience of disability, and I accepted — just so I’d have something to occupy those nebulous weeks after graduation.
I worked on the essay, an exploration of how I came to accept my huge dark glasses, and sent it off. I called it “Shades of Shame.” It was the first piece I ever sent out, the first to be accepted.*
Though I had started this blog a few months earlier, I still couldn’t believe that strangers liked my work. I had always written stories and shared them with friends, and I had done well on school essays and presentations. Friends liked my work because they liked me, right? Teachers liked my work because I was passionate about the topic and I followed the directions. Audiences liked my presentations because I enjoyed speaking.
By autumn of 2012, I was teaching my first writing courses and coping with the death of a close friend. I responded to another essay proposal, which led to my piece “Surprised by Disability.” This essay ran in a special issue of Narrative Inquiry in Bioethics, a journal published by Johns Hopkins University. The issue’s theme was “living with the label ‘disability,'” and my essay described the visual rules used to judge abilities and disabilities — rules even invoked by blind people. Again, I was surprised to be accepted, but I felt a greater measure of confidence: I had strong opinions on labels and terms. The acceptance made me crave a platform — the value in having a space where I could speak and others would listen.
In March of 2013, my first published poems appeared in Wordgathering: A Journal of Disability Poetry and Literature. For months I wondered whether I had just gotten lucky. I wouldn’t feel like a real writer until I had published more. After several positive interactions with editors, I realized that this strategy was a harmful lie: I was using publications to calculate my value.
As I began writing about classical music for Minnesota Public Radio, I still felt a powerful hesitation. Moving beyond disability-specific arenas, like Wordgathering and Breath & Shadow, I worried over how to market my blindness. My first article for Classical MPR described my experience of opera with low vision — a pitch I chose for its novelty. That novelty was my ticket into mainstream venues: I had to present a kind of blindness that didn’t scare people. A sense of disability as another (somewhat fascinating) way of life.
For MPR, I wrote about introducing my guide dog to all my musical activities. For a feminist anthology, I wrote about the challenges of being a young, visibly disabled teacher. But every piece that went beyond the safe circle of disability journals held concessions: the little explanations tucked into a line of dialogue, the right terms dropped in inconspicuous places. I had to tell my audience I was a blind woman who didn’t see my disability as a medical defect, but I couldn’t preach.
As I continued to write and teach, I recognized that my postgraduate fear had been refined. Instead of fearing social distance in my personal life, I was now afraid of being shut out by future readers. I was afraid that they would pick up a poem about transcribing love letters in braille and say, “I don’t get this. What’s a Perkins?” I was afraid that they wouldn’t relate to my joy at hearing other canes tapping down the sidewalk.
That fear turned me against myself. If I was really a good writer, my poems couldn’t exclude nondisabled readers. The power of my language would speak to them, transcend all misunderstanding, and help them feel comfortable sharing my experiences. If I was good enough, disability wouldn’t come between us.
In disability theory, this ideal is often called the “supercrip”: the disabled person who strives against all the odds to overcome their disability, struggling and even harming themselves just so others won’t be uncomfortable. Even though I was a sensible activist in my work life, I was supercripping my writing life — taking full responsibility for my readers’ reactions.
I thought readers would refuse to engage with my work not because they were bad people but because of the literary climate. In most stories, usually written by nondisabled people, disability rendered a character novel, tragic, or strictly medical. Disabled characters were saints: their bodies had failed them so they longed for the soul-world. Disabled characters were freaks: their bodies were anomalous and impossible to understand. Disabled characters were tragic: pilots who couldn’t fly anymore, patients whose lives were over, legendary ballerinas now in wheelchairs.
Disability ended stories. It did not begin them. So work that addressed disability, or work by writers with disabilities, had to dance a special jig just to be considered. And that’s how commercial pressure works on writers, even when we’re not being paid.
Such pressure made me question the value of my own experiences. If I wrote about a Perkins brailler, did I have to say “brailler”? What if “braille typewriter” messed up the meter in a poem? Maybe I shouldn’t say Perkins at all. Maybe I shouldn’t say braille.…
Writers fear one thing above rejection: self erasure. The impulse to delete everything I’ve just typed, the voice that says, “No one wants to read about that.” Self erasure is enough to make a writer stop writing — and feel entirely justified in doing so. It wears away every good feeling, every hint of inspiration, every search for a pen or a keyboard. It leaves the writer hollow.
Maybe other writers were born with the strength to fight such erasure, to insist on the value of their perspective. But I had to learn this skill, and I needed mentors to help me find it. From the colleagues who encouraged me to submit to the first editors who accepted my work, I borrowed confidence. When one editor asked me to contribute to a special issue, I snatched up that feeling and planted it somewhere deep.
My salvation came in community. I could submit work to a few places committed to disabled writers. At these journals, the editors had crafted a powerful trust with their readers and their writers. I didn’t feel compelled to footnote each experience, to clarify every nuance. I didn’t have to define braille or tapping canes or the strange play of light that is my vision. I could give myself completely to my art.
Now I sense the weight of what I bring to these platforms. Disabled writers, editors, and readers have set up spaces where we can be heard, where our stories of disability can ignore the dubious authority of precedents. These spaces are necessary playgrounds for all writers, emerging and established. We need room to imagine without erasure.
* This essay is forthcoming in the anthology Barriers and Belonging: Autoethnographies of Disability from Temple University Press.