Between the Lines: Disability Invisibility in Literature

U.S. Air Force Photo/Airman 1st Class Kyle Johnson

Editor's Note:

Sara Nović is the author of the novel Girl at War, which won an American Library Association Award, was an LA Times Book Prize finalist, and is forthcoming in 13 more languages. She holds an MFA in fiction and literary translation from Columbia University, and is an Assistant Professor of Creative Writing at Stockton University, a public liberal arts school in southern New Jersey. She lives in Philadelphia.

For a long time, when I realized I was losing my hearing, I tried to hide it. It was around sixth grade, I think, when I failed my first official hearing screening. They’d run the tests in the auditorium at the start of the year, and we’d sit with our back to the board operator with headphones on, raise our hands at the sound of the beep.

When I was through, the parent volunteer who had administered my test looked me over, scrawled something on a pair of forms. I was to give one to my parents to alert them of the failure, and another to my homeroom teacher to put me on the schedule for a retest.

“Do you have a cold? Allergies?” the woman asked. “Your ears could be clogged from that.”

“Yeah, allergies,” I said, “That’s probably it.”

But my ears weren’t clogged; I felt fine, save for my heart now banging hard against my chest — I never failed anything. What was wrong with me? I threw the note for my parents in the garbage.

The retest took place in the nurse’s office. Instead of raising my hand, the nurse and I were situated on the opposite sides of a sheer curtain, and I was to say “yes,” when I heard the tone. I watched her press the buttons through the part in the curtain that divided us, and “passed” the test.

I was an introvert who diligently copied the notes off the chalkboard, did my homework, read voraciously. Teachers, stretched thin by large class sizes, generally left me alone to concentrate their efforts on “problem” students. For years, neither they nor I knew I was missing much.

Eventually I was fitted with hearing aids, an FM system. Both my family and I were ashamed.  We didn’t know any deaf people; I’d only seen a deaf character once in some cloying Hallmark movie. I was alone, and broken, different from my parents, my classmates, and even the characters in my books. Books, which had always been my safe haven.

I began to seek out deaf characters, but with little luck. The few I found—like John Singer in McCullers’ The Heart is a Lonely Hunter, Nick Andros in King’s The Stand — were both crafted by hearing people, and didn’t fare particularly well. Singer and his companion Spiros struggle, isolated, throughout the novel, then die, Singer by his own hand. Andros, though a drifter with a strange series of birth defects that leave him unable to make any sound, manages slightly better, or I had sufficiently lowered the bar by the time I found him: At least there were deaf characters. At least Andros survived the apocalypse, had thoughts, sometimes.

I was lucky, though: Eventually I met other Deaf people and learned American Sign Language (ASL), found myself to be not a broken version of a hearing person, but heiress to a complex, beautiful, and funny language and close-knit community. Finding my people gave me the confidence I needed to start writing seriously, albeit privately. But for a long time, though writing was the thing I loved most in the world, I didn’t dare consider myself a writer, not a real one. I’ve attributed this to a few reasons over the years: garden-variety naiveté, internalized sexism, or the fact that I was the first in my family to go to college. But lately I’ve been thinking it might have more to do with representation, the fact that when I needed them most, books failed me. I never saw myself, my hopes, my struggles, nor any fully-rendered d/Deaf person’s, played out on the page. And where were the deaf women? The deaf characters with friends and lovers, bad habits and weird food preferences, with half-baked plans, fears, dreams? The d/Deaf writers? How much more painfully absent were recognizable characters for deaf people of color, LGBTQIA people, or those who are autistic or disabled? How has our canon fallen so far short of reflecting the reality of our human experience?

And how many artists and writers have we lost this way? While we writers say it’s the job of literature to make people think, to cultivate empathy, generations of readers have been shown time and again that their experiences are not worth space on the page. While hearing and able-bodied children are encouraged to dream big, deaf and disabled children are conditioned to strive for invisibility, aspire to normalcy.

Today, I’ve found a few Deaf writer heroes of my own—Louise Stern and Douglas Bullard, and myriad ASL poets and storytellers — and deaf and disabled kids can see a glimpses of themselves on the page in comics like El Deafo, and the Hawkeye reboot, and X-Men. But overall, the literary world has a lot of catching up to do. We must stop narrowing the scope of our world to what makes the majority feel comfortable. In doing so, we perpetuate a single narrative, an ableist one, and stunt our field’s capacity for innovation with the voices we lock out; the consequences reach far beyond the authenticity of the world of any given novel, and into the world at large.