The work of the eyes is done. Go now and do the heart-work on the images imprisoned within you. – Rilke, Letters to a Young Poet

Paula, the protagonist of my latest book, Pivot, is hard of hearing and wears hearing aids. I’ve wanted to write a deaf/hard-of-hearing character for a while now—in part because I’m hard of hearing and want to see stories that reflect that reality. (There are precious few.)

I’ve written about hearing loss before, in essays, in journalistic endeavors, and in regard to sex. All of those pieces helped me understand a little better the ways in which people with disabilities survive and adapt in a world that’s indifferent or outright hostile to those who are different.

And, writing about hearing loss has also illuminated the ways in which I’ve been complicit in my own disenfranchisement and invisibility. Part of this is due to my cowboy do-everything-myself mentality, but another part is that when I have asked for hearing-related help in the past, it often doesn’t change anything. And even when it does, it’s a huge, tiring battle.

Here’s a very small example.

At work, pre-pandemic, we used to have company-wide meetings with several hundred people. I understand much more if I can see a speaker’s lips, and asked HR if I could have a designated seat near the front, a post-it on a chair.

The head of HR told me no.

I could not have a post-it. The easiest accommodation ever! I then had to get my manager and several other people involved and it became a whole ordeal.

Weeks of battling later, I finally got my post-it! But oh my god, it was exhausting. I cried more than once.

(Also, that HR person was eventually fired, though not just because of this.)

So, yeah, I have a hard time asking for help. Because THE FIGHTING. THE CRYING. There were so many things I would have rather been doing than battling over a post-it (not to mention my actual job that they were paying me to do).

In writing Paula’s character, I hoped to stand up for myself, in a way. I hoped to write about some of the unpleasant things people with hearing loss face. And some of the funny things. (There are funny things!)

But, one of the big struggles of writing about hearing loss is that, if I were to accurately portray what a conversation was like, it would be infuriating to read. Every line would be What? And She asked him to repeat himself. And Say that again?

So in the interest of creating a not-super-annoying user experience, I kept the mishearings on the mild side. I did, however, create pockets of blank space where they were relevant to Paula’s character or to the story.

When Paula misses a word, it shows up like [ ].

The other challenge around writing disability has to do with what writer and activist Eli Clare calls the “supercrip” narrative. (Tangentially, you should read Exile and Pride. It’s beautiful and smart and heartbreaking.)

Examples of supercrip narratives include:

A TED talk by a woman who lost a leg but became a gold-medal skier! A podcast about a blind man who rides a bike! An inspiring magazine feature about a girl with Down syndrome who drives a car and has a boyfriend!

Such made-to-inspire stories, Clare argues, imply that disability and achievement are contradictory (however ordinary such achievements may be—plenty of people ride bikes and have boyfriends).

Meaning the only way to be extraordinary is to be like able-bodied people. To “overcome” your disability.

As such, any disabled person who doesn’t isn’t worthy of anyone’s time, respect, or help.

Not long ago, there was a young barista on Instagram (@signingwolf) who made a video expressing his frustration with the ways hearing customers treat him at Starbucks. The post went viral.

He’s heroic. Not because he’s Deaf and a barista—but because he had the audacity to call out the ways in which hearing customers don’t even try to work with him, no matter how hard he works to understand them.

What’s heroic are the ways in which people with disabilities have learned to adapt in a world that largely refuses to adapt for us.

In any case, I wanted to avoid the inspiring disability narrative, which is hard in rom-coms because you kind of want the MCs to achieve all their hopes and dreams. I wanted Paula to be a hero!

And (spoiler) Paula turns out fine, but her hearing loss doesn’t go away. She learns to accept herself and her limitations. She learns to not hide. She learns to ask for help.

These are small things, and yet, these are the only things.

Put that on a post-it.