I Am Partially Deaf and I Write to Be Heard

Why can’t the abled world fit into our world?

One of my first memories of my hearing is this: I am sitting on the steps of a mobile health clinic, a van which has come, bearing college-aged volunteers, to my elementary school in rural Georgia to test children’s hearing and vision. I failed the first test which is why I am here, banished to the steps of the van as a volunteer explains to my mother what is wrong with me.

I am partially deaf. We knew this. I was born that way due to a genetic malformation. But what surprises my mother is what the volunteer explains, “She can’t hear her own voice in her head.”

I’m out of reach but not—despite being hard of hearing—out of earshot. And I know this isn’t true.

I start to speak up about it, “I can hear myself.”

“She doesn’t know,” the volunteer insists, talking over me. “She doesn’t know what she’s like.”

As a partially deaf person, I have spent my life being told what I am like from people who don’t share my disability. I have been told I am exotic by lovers, thoughtful by friends, a good listener by students. Mysterious, flighty, reserved, distracted by teachers, professors, security guards, an ex-mother-in-law.

My family says I became a writer because I spent a lot of time alone; I invented stories to deal with the silence. But my whole world was silence: I became a writer, in part, so that people might listen to my own lived experiences having the body I do, in the world as it is.

So many of the conversations about disability are led by abled people, telling us how much they are inspired by us—but not responding to what we need. Not wanting to know about the actual lives we lead, which are just as interesting, important, valid, difficult, and ordinary as lives in abled bodies.

I became a writer to be heard.

*

In my very first memory, age three or so, I am writing. Or, trying to. I’m sitting below the kitchen table as my parents have dinner above me. I’m scribbling on paper, trying to get it down: how I feel, or what my parents are like, or probably how I’m mad at them for some reason or other.

I was the first child of three, and the only one with a hearing disability. When I was old enough to ask why I was different, my mom told me it was a “fluke.” I was a fluke, and what happened to me was an accident, like how my sister was born with a strawberry birthmark on her shoulder. But unlike the birthmark, which disappeared, fading after a few years, my hearing difference is with me for life.

In some ways, I’ll never know what I miss. In others, I do know, constantly.

I dropped out of swimming, ballet, singing, acting. I mostly received good grades in school, but with teacher or professor comments such as: I wish you spoke up more. I wanted to say back, “I wish you did too, so I could have heard you.” I dropped my theatre major my first year of college because I thought a writing major would be easier with my disability; after all, you do it alone in a room, silently. I had done it forever and done it alone.

I guess I didn’t know, at first, about the creative writing workshop, an essential class to the writing major, and one that centered on spoken feedback: The writer listens as their work is discussed. But what if the writer has a hearing loss?

But what if the writer has a hearing loss? 

It’s not uncommon for traditional writing workshops to doubt the experiences and gate-keep the work and language of writers who are labeled different in some way. My workshop experiences—and for most of my education, I had to go through many workshops, overwhelmingly with professors who were white, male, and abled—were no different. The workshop doubted incidents written in my nonfiction, even my poetry.

Workshops either were silent when I wrote about violence or questioned why I didn’t speak about it more—which takes on larger meaning given that women with disabilities are more likely to be sexually abused or assaulted than abled women, and hard of hearing and d/Deaf women also experience higher rates of domestic violence. I remember a male student saying repeatedly he just didn’t believe, as I had written about in an essay, that I would have once fallen for an older male teacher who had abused his power over me.

But I had.

The workshop often struggled with my language. Many comments I received were along the lines of my work was too complicated, too hard. Why did I say things so many times? I remember a professor once commented that I always had to say something, then say it again, then say it again. But I can think of no better summation of what listening and thinking is like for a hard of hearing person: Did I hear that right? Was it this word? Or that word?

I didn’t get much out of writing workshops, because I had a hard time hearing, and because people had a hard time hearing me, understanding or believing my lived experiences. I sometimes felt as if other students and professors didn’t want to hear about what life can be like for someone with hearing loss: how we are passed over for jobs, struggle to earn even a fraction of what abled employees do, and have a stronger likelihood of experiencing abuse.

*

Though I studied writing from undergraduate through my PhD, I was never assigned any readings by writers who were physically disabled beyond Flannery O’Connor (whose work featuring physical disabilities as grotesque always made me feel bad about myself on some level).

I did read the assigned works of many writers who were not disabled, yet had horrible, villainous, or pitiful characters with disabilities, work like Richard III, A Christmas Carol, A Separate Peace, To Kill a Mockingbird, The Curious Incident of the Dog in the Nighttime, Geek Love, Of Mice and Men, One Flew Over the Cuckoo’s Nest . . . the list goes on and on.

These books taught me that disabled people are to be pitied, like pure and pathetic Tiny Tim and his crutch. That disabled people die, often violently, like Finny in A Separate Peace, to aid in the redemption of the abled characters who are the real heroes. Disabled people are never the heroes. Disabled people are in books, like Lenny in Of Mice and Men, Boo in To Kill a Mockingbird, to “teach us a lesson,” and the characters with disabilities are either often saintly or monstrous.

It’s hard not to internalize such uninformed, destructive portrayals of disability, when it’s all you are exposed to, when it’s everywhere, in the culture other people seem to love, like Me Without You, Wonder, Midsommar. In Midsommar, the physically deformed character—who is, of course, a magical and murderous prophet—is literally called “the disabled.”

Why did none of my abled friends who fawned over this movie warn me about this? Why did it surprise them that seeing myself this way on screen would be upsetting and unfair?

To talk about myself rather than be talked about: the isolation, the ignorance of being passed over, told I couldn’t do things, told I am defective, shot down when I spoke up, took years. It is still something I am learning to do, to unlearn the negative portrayals about me.

It wasn’t until my first book of poems won the Vassar Miller Prize from the University of North Texas Press that I researched the life of the disabled poet the prize was named for. On my own, after classes were over, I discovered the work of writers like Meg Day, Jillian Weise, Paul Guest, Alice Wong.

Many of these writers have become friends. I remember the first time Day, a genderqueer poet who is Deaf, called me “kin.” I realized what I had been missing, what had been denied to me: a family of people who understood. Who struggle both to fit in to abled society, to be employed by it, respected by it, and read by it, while at the same time asserting their own identities.

Why should we struggle so much to be accepted by the abled world? Why can’t the abled world fit into our world? I shouldn’t be ashamed of my disability, to hide it as my family taught me, to try to pass as my education taught me, but be proud of it, celebrate it. Write it.

Why can’t the abled world fit into our   world?

Raised by a hearing family, I never met another person my age who was hard of hearing until I was in high school. I never knew there was such a thing as deaf with a lower case “d” meaning the physical condition of being deaf, Deaf with a big “D” meaning Deaf community. What community?

I had none until, in my thirties, I began to learn American Sign Language—a language which was arguably my rightful one, an inheritance which had been kept from me. My professors of ASL were hearing, and all the other students were as well. At times, I felt like a cross between a life studies artist model and a cadaver in the class: I was the thing they were studying. They would sometimes turn to me when issues of Deaf culture came up. Is it true Deaf people are often late?

I had no idea. It was my culture—but it had never been mine. I knew nothing of it.

My favorite of the two professors introduced me to a colleague who was Deaf. I learned the sign for being hearing impaired from him. My professor told him about my work, how I wanted to write about being hard of hearing—not part of any world, the hearing or the Deaf.

That’s going to be beautiful, the man both signed and said orally to me. That’s such an important story.

My story was beautiful? Important? My story, like ASL, is a language I am still trying to master, to make sense of and re-claim after it has been told by so many people who were not me.

Though I started my career as a poet and make my living now in journalism, as a person who hears about half of the world, and must decide how best to interact with it, I found myself the most actualized by writing fiction. I can write a world where there is no ableism. I can invent a life where I am free. Perhaps coincidentally, fiction writing is the one genre I never studied in school.

Are any of my characters partially deaf? I think, in my mind, all of them are. I can see this—and maybe, I hope, other readers who are hearing impaired can recognize it too—in their thoughtfulness, their quiet strength, their deliberation, and their experiences. They struggle to relate in a society not designed for them, and to survive and thrive.

But I plan to make disability explicit in my next novel, to write fiction from a character’s point of view fully my own: a hard of hearing woman, a journalist who writes books, like me. Whether this will make fewer readers pick up the book, turned off by the synopsis, if the character’s disability even makes it into the cover copy, remains to be seen. But I need to do it for me. I need to write disability clearly, the way I have always wanted to be perceived.

You would never know is another thing that has been said about me, so many times, from well-meaning people without hearing loss, thinking they are complimenting me, how I sometimes pass in a world that never wanted me. But I want you to know. I want you to. I write so that you will.