I spent most of my youth trying to find books that reflected aspects of myself, looking far and wide, throughout genres and fandoms that were as disparate as my tastes. It took until I was 17 to find a hero worth my time.
The problem I have isn’t unusual: 57 million Americans share it—I’m disabled. I have what’s called Congenital Rubella Syndrome, and that means I’m partially deafblind. I’m part of a small group, relatively speaking, compared to some of the other disabilities that are out there, and I don’t expect to find perfect renditions of deafblindness between the pages of a space opera (though someday I hope to write it).
But I have been able to find characters who feel like slivers of myself. Some were recently written—like Riko from KC Alexander’s Necrotech, who has a prosthesis). Another came to be in the mid-1980s—Miles Vorkosigan, born with a science-fictional form of dwarfism that leaves him prone to injury, and featured in more than a dozen books by Lois McMaster Bujold.
You’ll note neither of these characters has my disability—but they don’t have to.
Disability narratives aren’t just about the actual disability, but the experience of what it is like to be disabled. What I like about both of these characters, in equal measure, is their fearlessness. They have it in different capacities, over a wide range of experiences, but neither is limited by what society thinks they should do.
Miles gave me permission to tell stories like my own. Look, when every narrative you’ve ever read that had to do with disability was about transcending disability—soaring above it, ignoring it, pretending it doesn’t matter—just finding one about the day-to-day reality of it was important.
Every time I pick up a Miles book, it’s inescapable—his body is an inescapable fact, and it forces the reader to confront what his life is like. There’s not a single Vorkosigan book that doesn’t address who Miles is and what his life is like. And that’s the truth—I don’t wake up in the morning and forget that I can’t see out of one eye. I have to put in my shell and my hearing aid, and sometimes take eyedrops that burn my retina (if it were useful). Miles can’t escape the fact that his bones break easily, or that he uses crutches sometimes, or that it takes longer for him to heal.
I can’t escape, and neither can he. But what we can do is thrive in the bodies we were born with. That’s the other thing I love about Miles—his disability isn’t from a tragic accident (well, it is, but not because of anything he did). He and I both were disabled at a time when we couldn’t prevent it—before birth.
We had to grow up with bodies that defied us, with bodies which exist on a learning curve. When I met Miles on the page, he made me feel less alone, and the experience gave me permission to write about what it means to be disabled, and what it means to live outside the margins of what people think disability should look like.
I’m hopeful the future will bring more stories where disability isn’t a footnote or a sidebar, but something the reader can’t escape. If you’re a disabled reader, you should be able to live in the skin of the character, and if you’re non-disabled, you should be unable to escape the idea that for the moment, you’re in a disabled narrative.
These narratives build empathy, but far more importantly, they build empowerment. For people like myself, we need more stories that reflect what it’s like to live in a disabled body, not narratives that erase disability or boil it down to a characteristic. Disability is a part of me, like it’s a part of Miles. Like it’s a part of Millie in Mishell Baker’s Borderline, affected with borderline personality disorder. Like Necrotech’s Riko learns it is a part of her.
Disability is part and parcel to the narrative, not a side quest.
In addition to being our newest contributor, Elsa Sjunneson-Henry is the guest editor of Uncanny Magazine‘s upcoming special issue Disabled People Destroy Science Fiction.