Why I Don’t Talk About My Disability

Hi, there. I’m Kaitlin. I’m a library associate, a writer, and a student. You might know me from my time on Twitter or Instagram where I post book-related content. But there’s something else I want to talk about as well.

I’m hard of hearing.

You probably didn’t know that, right? It’s not something I talk about nowadays because I don’t know how. As someone who was raised orally, without sign language or a deaf community, it’s always been hard to figure out where I fit into the disability conversation. But I know how important these conversations are. If I don’t say something, someone else will—and I don’t want someone else to speak for me. So let me start by saying that I’m only speaking for myself in this post. My experience is not universal. Every single disabled person has their own lives and experiences and what I have to say may not apply to anyone else.

I decided to write this post after considering the representation in my own writing. I worry about my future books and career and how I’ll make it. I’m someone who wants to be an author and work in publishing. Big dreams, right? But I know how hard it is to make it in this industry no matter what role you assume. Authors have to fight to be heard. Editing jobs are so hard to secure. I worry that I’ll be cut from the race before I even have a chance to prove I deserve to be there—possibly because of society’s attitute toward disabled people.

Let me start at the beginning.

I was born with a hearing disability. At birth, I had diminished hearing in my left ear due to unknown causes. By the end of kindergarten, I was totally deaf in my left ear. I can’t hear anything out of it. No amount of snapping, yelling, or whispering is magically going to make it work again. And trust me—people have tried to see if I’m “seriously deaf,” usually unwelcomingly. I have what is called “single-sided deafness.” It means that I need people to stand on my right side if we’re walking together in order to be able to hear them. It means I went to speech therapy as a kid. It means that I have hearing aids.

I get along pretty well. In most situations, you’d never even be able to tell how much work I put into being able to hear you. If I’m one-on-one with someone in a quiet environment, and they’re not on my deaf side, then I don’t struggle or miss any of the conversation. In the settings that I do struggle, I feel lost. I still remember the time I was in high school and a girl off-handedly asked “What are you, deaf?” in response to my request for her to repeat something she’d said when I hadn’t quite heard it. I didn’t have a response to her question. A few second passed and she said, “Oh, right.” And continued on with her conversation. As if the comment didn’t remind me that people are not willing to slow down. If I can’t keep up—if I need to be told something again—people don’t like that. So I tend to only tell people when I feel it’s absolutely necessary. If I’m dating someone. Close friends. If I’m in a situation where I don’t want people to think I’m just not paying attention. I’m selective because it’s safer.

It was in high school that I really started to explore my identity as someone who is hard of hearing. I watched Bill Vicar’s ASL video lessons on YouTube. Some of my friends took interest in learning ASL, too, and my teachers were supportive. I joined the Deaf community on Tumblr, trying to connect with people who were like me. I was able to explore this whole new world that I actually had a space in and, for a while, it was great. That’s not to say everything fell into place perfectly. Even now, I’m still triyng to figure everything out as much as I was back then.

But eventually, I stopped using Tumblr. I didn’t keep up to date with the community anymore after I moved to Georgia. I had so much going on in my real life that being online wasn’t a priority. But the thought always comes back to me: Where do I belong in the conversations surrounding disability?

Where does my disability fit into my identity? My writing?

I hadn’t once read a book with a main character that has my specific type of hearing disability until I read Maggie Stiefvater’s The Raven Cycle series. One of the main characters, Adam Parrish, went deaf in his left ear late in the series. That’s one character. Where are the rest?

As a writer, disability representation is something of which I’m keenly aware. Primarily, I write young adult manuscripts which means I’m writing for teenagers. Teenagers who deserve to see themselves on page in a healthy, real way. It’s no secret that disability representation in fiction isn’t stellar. From non-disabled authors writing our stories to stigmatized characters, finding disabled rep feels like climbing a mountain at times. The burden of correcting poor representation always falls on us—the disabled. And while disabled rep should be written by those who are actually disabled, we shouldn’t have to also exhuast our time and energy making sure non-disabled people don’t harm us through their portrayals of us.

I don’t want my stories, my books, to be dwindled down to their representation. I don’t want to forever be educating people on my disability. There are so many wonderful, amazing disability activists in the world who do amazing work. But I don’t know how to balance being an activist, for myself and other people like me, with everything else I want to be. A poet. An editor. A writer. Simply, I just want to exist. I want my stories to exist—my wonderful, hard of hearing characters with all their flaws, their hopes, their dreams. I don’t want to be in this constant fight for them, or me, just to say, We deserve to exist. Because that shouldn’t need to be said. It should just be an undisputable fact.

I worry about my career as well. I won’t say I’m worried about how my disability will affect my career—because it shouldn’t affect my career. But publishing isn’t always fair or kind. Neither is the world. Deaf people are more likely to face struggles in finding employment. I can’t imagine how the stigma surrounding hearing loss might affect my goal of finding a job in publishing. I always hesitate before telling someone I’m hard of hearing. Because how will they react? Will they tell me they’d rather die than live without their hearing, as has happened before? Will I get turned down for a job (that I’m fully capable of)? Will people’s perceptions of me change because they don’t know how to interact with someone who’s disabled and it’s easier for them to just not interact with me at all?

I don’t know the answers to any of these questions. But I know my experience. And I know who I want to be in the world, as a writer, and who I want to be for other people. And so I’m still learning, and listening, and being. And I’m still writing. So that’s why I don’t talk about my disability. It’s an ongoing conversation with myself as I figure out what being disabled means for me both as a person and a writer.

I’m still reconciling my identity as hard of hearing person with the rest of me. I know there’s so much more I could write on this subject. But I wanted to intersect my identity as a writer with my disability, and I hope I’ve been able to illuminate what my experience has been like.

Thank you, so, so much for reading.

5 comments

  1. Your writing style just pulls me in. You’re very talented!

    You’re absolutely right about needing more disability representation. I found few books about disability as a kid, and I did a ton of reading. I hope the children of tomorrow will get more books treating disability as something normal and worth accepting.

    Like

    • Thank you so much! I’m so hoping kids get more books that represent them! Growing up, I can’t recall many books that had disabled characters. I’m glad to see it’s changed, at least somewhat. I know it’s a mountain to climb, though, and I’m hoping disability in media will become more widely accepted.

      Like

      • Yes, representation is so important. It benefits non-disabled kids, too, to learn more about natural human diversity and understand that there’s nothing “wrong” with it.

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s