For many of us, finding a disability community – at whatever age it happens – feels like coming home. But growing up disabled can often be a lonely experience. I grew up in a very rural area where there were few disabled kids and disability stigma ran rampant. Labeled a “Special Ed” kid (a term I hate, along with “special needs” – my needs aren’t special), I was mostly kept separate from “mainstream” kids and I had few friends.
From the time I was a toddler, I was categorized as having developmental delays but they weren’t officially diagnosed until later in my childhood as autism, dyspraxia, dysgraphia, Tourette syndrome, and a grab bag of other “not otherwise specified” delays that kept me always feeling a step behind my peers. In my rural community, to be disabled was to be stigmatized and shut out, no matter how hard I tried to fit in. Like a lot of misfit kids, I found friends in fictional characters instead.
Fictional Characters
Every new book or TV show I discovered had the initial thrill of offering me a doorway into a world where I was as accepted and loved in the same way my favorite characters were. From the outside, friendships seemed so easy. They seemed easy for my classmates, too, but my developmental disabilities meant something always got lost in translation when I tried to approach them. Even the ones who weren’t outright cruel to me treated me with a kind of
patronizing kindness that, I would eventually realize, wasn’t real friendship.
Since my favorite stories usually revolved around an established group of friends, I didn’t have to worry about
trying to befriend them and being rejected. I imagined I was already part of the gang. The problem was, none of the characters in the books and shows I loved had the same experiences I did. None of them were separated from other students in “special” classes, and as I got older and my genetic disorder began to progress into a more noticeable physical disability –especially once I became a wheelchair user – I couldn’t help but notice how often these characters went on adventures I wouldn’t be able to keep up with.
I devoured Baby-Sitters Club books, but I wasn’t considered “mature” enough to babysit even though many of my peers already did. I was so obsessed with the show Ghostwriter that I spent two years with a ballpoint pen hung on a chain around my neck like the mystery-solving kids on the show, but I had to wonder if their ghost pen pal would even want to write to me when I couldn’t go to school with the other kids.
Gabe Moses
Even when it wasn’t so obvious, it was there. In my favorite book series, the Wayside School books, there was a character who nobody liked. But her lack of friends came from her meanness and not caring whether anyone liked her or not. I wanted to be liked, but I couldn’t seem to crack the code.
For a while, I even tried being mean like Kathy in the books because I thought then at least there was a reason I didn’t have friends, something I could change if I wanted to. But I didn’t want to be mean. I just wanted to belong. Being
disabled and isolated is feeling like even your imaginary friends don’t want to hang out with you.
Finding a Disabled Community Like My Favorite Fictional Characters
For me, the answer was finding a disability community in real life, but that took a long time. I joined disabled meet-up groups. I went to rallies and marches where half of us rolled. I attended a camp for disabled adults. And I found a writing circle comprised of other disabled writers that led to some of my closest friendships as well as much of my success as a writer.
But finally getting to spend time around other disabled people, especially book-loving disabled people like myself, made me realize that I wasn’t alone in wishing those stories more explicitly made room for people like us. I think I would have had a much easier time if I’d had access to a disability community sooner, but I also think that if I’d seen a depiction of a friend group that included someone like me or better yet, a friend group made up of people like me – it would have made me believe that was possible in real life. I wouldn’t have spent so much time feeling like I was all alone.
Disabled Fictional Characters Don’t Need An Explanation.
I’m grown up now, but I still love escaping into books and genre TV shows, and this is still happening. Just last year, an actress, Rachel Miner, who’d played my favorite side character on my favorite cult TV show Supernatural – and had been out of the spotlight for a few years, in part taking a break from acting due to Multiple Sclerosis spoke about returning to play the character as a wheelchair user. When that didn’t happen, the show’s producers decided to bring her back but always show her seated rather than have her use her wheelchair. Fans gloated about how they’d been right in saying that wouldn’t work, how portraying the character in a wheelchair wouldn’t have made any sense.
But why do we (disabled people) have to make sense? Why does there have to be a reason we’re disabled, something that drives the plot or contributes something significant to the story? Why can’t we just exist?
Where Are the Disabled Fictional Characters?
It’s this same attitude – that the presence of a disabled character must be justified as necessary to the story – that makes me apprehensive when I do see someone who looks like me show up in a story I’m getting into. Will they be a fully fleshed-out character with their own needs, desires, and motivations? Will the plot accommodate them taking full part in the action of the story? Or will they be a plot device, existing only to provide a shocking twist when their
disability isn’t what it seems? Will they be truly befriended, loved, and cared for by the other characters? Will they be pitied and patronized in service of showing what good people those other, abled characters are? Will they be accepted as part of the gang, or will they teach the others a “valuable lesson” then never be seen again?
My path out of the self-doubt that comes with a lack of representation was community, but community and representation are so closely linked that it’s hard to separate them. Would isolated disabled people like me be able to find better, more accurate representation if they had access to a disability community to model it for them? Would they have an easier time finding that community if they had ever seen it portrayed in the stories they sought out?
Looking Forward to the Future
I never got my wheelchair-using demon or my junior sleuth with developmental disabilities. I did, finally, find some real-life friends. But most of the time we connected over the lack of both community connection and relatable representation growing up. With no one to show us how to become the people we wanted to be, we had to navigate the thorny path of figuring it out on our own. It took much longer and led many of us into negative experiences and mistakes. Hopefully, the next disabled generation gets there sooner by having access to people like them as a compass in the real world and in the fictional one too.
What are your thoughts? Who were your favorite characters growing up? Would you have liked to see more disabled characters in your favorite books, shows, and movies? I’d love to know. Comment below. Please share. I also wrote this article. Click here.
BIO
Gabe Moses is a writer of middle grade and young adult fiction centered around disabled characters with recurring themes of small-town alienation and misunderstood monsters. He has contributed to The Body is Not An Apology and Original Plumbing. Gabe has written in several poetry and fiction anthologies. He probably wrote this with a cat on his lap. You can reach him on @mabegoses
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