Home » General » Writing About Disability: An Insider’s Confession

Writing About Disability: An Insider’s Confession

As a writer with a disability, I have a confession to make. Whenever I see a book has a character with a hearing loss, my first reaction is not “Yay! Diversity!” It should be, but life has taught me to be cautious.

My first reaction involves the urge to step back and walk away. My first reaction doesn’t know if the author did his/her research. My first reaction doesn’t want to be right.

Having had a hearing loss all my life, I know one fact very, very well: people think they know hearing loss. They don’t. Hearing loss is one of those topics that everyone knows about. It’s common knowledge. But this “common knowledge” rarely involves the truth of not hearing.

Case in point: I started learning ASL when I was in college. My mother mentioned this to a family member. The response? “Shouldn’t she learn to lipread?”

1) I wasn’t taking ASL for my own benefit, not at first. 2) I’ve been lipreading my entire life; it’s not an exact science. In fact, the lips only show 20% of the words, the rest is inferred. 3) If I managed to communicate well, why did I need lipreading?

Nothing against the masses, just the simple fact of what a common notion does when put into action. I’m sure those with other disabilities will say the same. The public knows about the variety of disabilities one can have. But unless we’re actively involved, we don’t know shit.

Back to writing. Sadly, most books I have picked up with a character who has a hearing loss lead me to banging my head with my Kindle. True fact. There aren’t many, but after you read a few that are so far off the mark it isn’t even funny, you grow leery. I oftentimes try and research if the author has any personal experience prior to picking up the book.

This doesn’t mean an author can’t do research and do it right. One can. It’s been done. However, it takes the right type of author, the right type of research, to make it happen. I read a more recent novel with a Deaf main character (capital D to denote someone culturally Deaf, not just a person with a hearing loss). I bit my lip, shut down my apprehension, and read.

On the whole, this author did her research. So points for her. And she had the character in a career that many wouldn’t think to put a Deaf person in, so double points. BUT, and this is capitalized because it is huge, there were many instances in the novel that were so far off from reality I ended up banging my head with my Kindle. One small example: the continued use of first names in ASL, as in “Hi Laura, how are you?” Nope. ASL only uses sign names for those not present, or when teaching a baby their own name.

At the end of the day, research is great, but you can’t know everything. In my own research in areas I don’t have personal knowledge on, I seek out personal experiences. Since I look at the world differently due to my ears, I try and find the little nuances that make the research ring true. I won’t get it all right, and that’s okay. I don’t expect someone to get it all right with hearing loss. Even if I’m banging my head with my Kindle, if the author shows respect and understanding, that’s half the battle. And that warms my heart.

But when someone gets it wrong, the damage is huge. Even in fiction, people read novels and acquire knowledge they previously didn’t have. So if a novel depicts false information, then that false information spreads. To be fair, I feel the same way about social workers receiving a bad rap in novels, since I worked as one for a decade.

I will probably always need a moment before checking out a novel with a character who has a hearing loss. The fear of it being done wrong is huge. I do hope, with the push for diversity in books, more and more people will do their research, will put respect first in their art.

In some ways, I want to leave the disabled characters to those of us with personal knowledge. This may be selfish of me, as I write about characters with a hearing loss and I’m damn proud of my work. But like many minority groups, we want our own voices heard. Not yours, not your interpretation of what our world should be like. The truth. From us.

You might be able to walk a mile in someone else’s shoes, but can you put those shoes on as they do? Can you walk and interact and have your outsider status be invisible? Can you say with 100% conviction that this is right? Think about this the next time you write about someone different than yourself.

I know I do. My goal is to make those other disabilities appear as truthful and fleshed out as my hearing loss characters. The bar is set high, since hearing loss is my life, my degree, my work. I know I won’t be 100%. But I aim for damn close

Do you?

This post also appears in support of the #WriteInclusively movement. Click here for more information.

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2 thoughts on “Writing About Disability: An Insider’s Confession

  1. This was a great post. I have a young adult story idea and the MC is deaf–born that way. I’m excited about the story, but I want to get it right. And facing research is overwhelming because I have no experience with the Deaf community. There’s also medical aspects I’ll need to research.

    I know part of my research will have to be talking to people because I need both sides. Not only what it’s like for the deaf person, but also the other (hearing) family members too.

    Your post reminded me also that I’ll need to Google something like what you wrote–how writers get things wrong when writing about deaf people. I’m not sure if there’s many blog posts out there like yours, but hopefully I’ll find more.

    But it’s those little details. Something like not using a person’s name in dialogue that is being signed. Those are the things I’d like to get right.

    I’ve saved your post for future reference. I haven’t officially started my research yet, but hopefully soon I can get going on it.

    • Good luck with your research, and thank you in advance for wanting to do the research in the first place! Something to get you started: most deaf children are born to hearing parents. You will need to decide how the parents react to the hearing loss. Many Deaf children feel estranged from their family due to communication. Bottom line: a hearing person views hearing loss as something to be fixed, a Deaf/HoH person views it as part of their culture. Right there is a huge divide.

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