Dancing in Iron Shoes

Space Unicorns, I leave you with a Question.

I have an open-door policy when it comes to able-bodied writers asking me questions about disability and the crafting of disabled characters. Whether it’s specific questions about disabled experiences, or a borrowed detail here and there to help build a nuanced disabled character. Any writer working on a specific project may approach me, and if their questions fall within the bounds of my own experience, I will answer them as thoroughly and honestly as I can.

You can learn everything about a writer from the kinds of questions they choose to ask. A writer who asks thoughtful, engaging questions will go on to write a thoughtful, engaging story. A writer who’s just hoping to kick the can of disability research down the road a little will soon discover that their work’s only just beginning. 

And every now and again, a writer will ask you a question you’ve never been asked. Sometimes, it’s a question so vital and basic you can’t believe nobody thought to ask it before, including you.

What do you want to see more of in representations of disability?

What do YOU want to see more of in representations of disability?

I actually had to think awhile about how to answer it. Of course there are the self-evident answers: I want characters who are well-rounded, who are real, who are interesting. Characters who live honestly within their limitations without ever being consumed by them. But let’s assume the writer who asks this question is already planning on doing these things as part of writing a halfway decent story. What, specifically, do I as a disabled reader want to read more of?

The answer I came up with was that I wanted characters whose disabled bodies felt lived-in. I wanted to see characters whose disabilities were nothing new to them, who had inhabited their bodies for their entire lives (or at least a good long time) and who knew how to navigate their possibly deeply inconvenient worlds without thinking very much about it. 

The trouble for me is that disabled characters as written by able-bodied writers tend to spend a lot of time thinking about disability, and feeling things about it. Bran Stark, one of the more prominent disabled protagonists right now, spends an awful lot of his inner life lamenting his broken body, even five books later. Around book four, I would have loved to experience a little less lamenting and a little more of Bran adapting to the new limitations of his body. What’s Bran’s day-to-day like? Apart from a convenient supernaturally gentle giant, what clever medieval assistive technologies have the household clergy dreamed up to help their lord get around Winterfell? (The handsome man at my elbow would like to point out that George R.R. Martin did rather thoughtfully line the walls of Bran’s bedroom with weight-bearing bars.) What does he think about in the moments when he’s pissing, or bathing or eating or scratching an itch? There’s gotta be whole hours where even Bran Stark doesn’t think about his broken back at all.

Tyrion Lannister, A Song of Ice and Fire’s born-disabled (by Westeros standards, anyway) protagonist doesn’t often fare much better. Though he’s figured out how to get by in his world by hook or by crook, he’s still awfully bogged down by the way all the big people treat him. Here’s the thing, though. If you’ve been treated the same way by crappy people all your life, you tend not to let it linger in your thoughts too long. You learn what people’s expectations and judgements of you are pretty quickly, and you learn how to get out around them.

If I roll into a room where a great big oblivious able-bodied person has already decided I’m not worth listening to, I don’t waste time getting angry because I’m not being listened to. Maybe I ought to, but I don’t. I’m already too busy thinking of ways to subvert this person’s expectations, to force their attention in order to get what I need. That’s not cynicism or bitterness; it’s adaptation, and all humans do it. 

When a disabled character can’t stop thinking about disability, what that tells me is that the author can’t stop thinking about disability. They can’t imagine what it’s like to live and work and play and flirt and fuck in my body, even for a few paragraphs. There are able-bodied writers who can imagine all sorts of other fantastical lives (boys and girls who live as wolves while they sleep, young men who live in the shadow of a great wall of ice and never grow warm) but can’t figure out how an eight-year-old boy gets by, moment by moment, without desperately wanting to walk.

At Worldcon this year, I attended a panel on older female characters in science fiction and fantasy. In expressing what irked her about young authors trying to write older characters, one panelist hit the nail on the head. “Young people don’t really understand just how boring everyday pain is,” she said.

Ha! There’s the rub. When able-bodied twenty-six-year-old writers think about the pain or inconvenience of disability, they can’t imagine living with it. Trying to explain to young, fit twenty-somethings about my chronic pain was like revealing to them that I spent my evenings dancing in iron shoes so the devil wouldn’t eat me. “You mean you’re in pain all the time?” as their eyes got wide and round.

Continual pain seems so impossible to them, so unaccountable, like something that would take up all your thoughts, and every bit of every story you were ever in. It would be its own subplot, running through the story like a dark, noisy river. And for some disabled people it does exactly that. But for me—for many of us—pain is just there. It’s well-traveled territory. We know the ins and outs of it so well it doesn’t mean much to us anymore, other than a muscle relaxant, or a quick soak in the tub, or a lie-down. It’s part of the rhythms of being alive, more of a character quirk than a subplot.

Yes, I am in some level of pain, pretty much all the time. Yes, my life is at times horribly undignified and inconvenient. And the minute I finish writing this essay, I’m going to stop thinking about it entirely. Until tomorrow morning when I have a lower-back spasm that gives me sailor-mouth for a few minutes. After which time I will get up, take a hot soak, and eat, and work, and play.

That’s just my boring, totally ordinary life.

Writers should be able to find the boring bits in any kind of life, cut most of them out for the sake of pacing, and then sprinkle a few choice bits back in. That’s realism.         

So, that’s my Answer. As a writer with a relatively stable and very visible disability, what I want to see in disability representation is more ordinariness, more boring bits. More basic adaptation.

But the answer to this Question is different for every one of us. So what are your answers, my dear sweet space unicorns? Think long and hard to yourselves, and then maybe write it down someplace for some of us writers to read. I invite you to be specific, to be wild, to be ambitious, to be strange. As of this moment.

What do you want to see?


Nicolette Barischoff

Nicolette Barischoff has spastic cerebral palsy, which has only made her more awesome. She qualified for SFWA with her first three stories, published in Long Hidden, Accessing the Future, and Unlikely Story’s The Journal of Unlikely Academia. Her work has been spoken aloud by the wonderful people of PodCastle, and one of her novelettes is mandatory reading at the University of Texas, Dallas. She edited the personal essays section of Uncanny Magazine’s Disabled People Destroy Science Fiction, which won a Hugo Award. She’s also a fierce advocate for disability and body-positivity, which has occasionally landed her in trouble. She made the front page of CBS New York, who called her activism “public pornography” and suggested her face was a public order crime. She has the exact same chair as Professor X, and it is also powered by Cerebro.

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