Defining Disability

By Corinne Duyvis

I am autistic.

I remember vividly a time in art school when I mentioned this to a classmate. His immediate reaction: “Ha! I’ve seen autistic people. You’re seriously not autistic.”

It didn’t matter to him that I’d had to drop out of high school the year before, at fourteen, after years of problems directly stemming from my autism. It didn’t matter that I had a diagnosis, or that I fit so many symptoms that my mom and I had laughed reading the list together. No. My classmate had witnessed me at school and deduced: Not Autistic. When he told me that, scoffing, I had to excuse myself to the bathroom and wait several minutes to stop shaking.

Corinne Duyvis
Corinne Duyvis

Other people have long accepted that I’m autistic—but that doesn’t mean they see it the same way I do. My grandmother has done this. Once, I casually mentioned something or other about being disabled, and she almost seemed to panic. “What? You’re not—you’re not disabled!” I gently tried to explain to her that, actually, I was declared unfit to work, and it significantly impacts my day-to-day life, so . . .

“Yeah,” she said, “but you can walk!”

I tried to explain it to her further, but she was deeply uncomfortable with the topic, and quickly dismissed it.

Disability can be visible or invisible, debilitating or casual, and it’s impossible to define Once and For All. Definitions inevitably exclude people who want to be included. The opposite also holds true. Sometimes, you’re including people who don’t want to be. Some autistic and Deaf people don’t consider themselves disabled, simply different. Some elderly people who struggle to walk or hear don’t see that as a disability, but simply as a part of getting older. Some chronically or terminally ill people reject being called disabled, as well. Other people don’t consider themselves “disabled enough” to use the term.

Complex discussions regularly take place within the disability community about identity. These discussions deal with topics such as identity policing, internalized ablism, negative associations, appropriation, transablism, and much more. However important these discussions are, my advice to most people is: don’t define or police anyone’s disability status. It’s not the place or business of people who are not a part of the disability community.

Sometimes, however, we’re faced with the need to define disability for pragmatic reasons. For Malinda, it came up when she was looking at the representation of disabled main characters in the Best Fiction for Young Adults lists. For me, it comes up when moderating Disability in Kidlit. Which characters count? Who can contribute? Which conditions do we want to discuss?

When starting Disability in Kidlit, my co-moderator Kody Keplinger and I chose to include all the “obvious” disabilities, but also anything from mental illness to learning disorders to chronic conditions, which people with and without said conditions sometimes argue don’t “count.” We both know people with the above conditions who do identify as disabled, and they often suffer from exactly the kinds of erasure, misrepresentations, tropes, and stereotypes that we want to discuss and dismantle at Disability in Kidlit. A lot of hurt can come from defining people’s disabilities for them—particularly when it comes to conditions that are often excluded as it is. The broader we draw the line, the less chance of that happening.

That doesn’t make the decisions about which books to include on our lists clear-cut. Sometimes it’s easy to exclude a book, for instance when a character has a temporary injury. Other times, it’s trickier. After all, disability is not only defined by a character’s mental or physical condition, but also by society and circumstances.

Take a character who is legally blind, but wears glasses that correct her vision perfectly. She only notices her bad vision when she has to take off her glasses for bed. She probably doesn’t identify as disabled, because despite the need for assistive equipment, her vision causes minimal changes or discrimination in her daily life.

Now put this same woman in an apocalyptic world and smash her glasses. Write her into a fantastical or historical setting where they haven’t developed corrective lenses yet. All of a sudden, she’s blind. She’s disabled. Same character, same disability, different conditions.

What about people with ADD? People may qualify this condition as an issue, a quirk, a developmental disorder—but not necessarily a disability. For me, when I’m in the store and spend ten minutes staring at different kinds of soap and want to cry because I’m incapable of making a decision, or when I’m so caught up in the maelstrom of ADD indecisiveness and autistic obsessiveness that I stay up until 4 a.m. for a week straight to research insurance options or signing pens, and I’m exhausted, and my mind goes on and on and on, and I know I’m wasting time, I’m skipping meals, missing deadlines, ignoring family, but I cannot stop . . . for me, it’s a disability.

And depression—same thing. Many people with depression don’t identify as disabled. Many others do. What’s the difference? Does it depend on how long their condition lasts—a few months, a few years, a lifetime? Does it depend on how severely it impacts their day-to-day life? On how well their medication or coping mechanisms work for them? On their personal idea of disability, which for many people is a big, scary, and inherently negative concept?

What about someone with a limp that prevents them from climbing or hiking, but never hurts and barely impacts them? (And what about if this person lives in a small mountain village in which climbing and hiking are essential?)

What about a condition which rarely plays up, but is debilitating when it does? What about if someone lives in an idyllic, accessible, ablism-free society, where there is no difference between an inability to walk and an inability to drive? What about something seemingly minor—say, stiff fingers—but being a pianist is this person’s life’s work?

In real life, whenever possible, we can ask whether someone identifies as disabled. In fiction, it’s different.

There are no easy answers. Hopefully, this post addresses some of the complexities and helps people think about disability differently.

A lifelong Amsterdammer, Corinne Duyvis spends her days writing speculative MG and YA novels. She enjoys brutal martial arts and gets her geek on whenever possible. Her debut novel OTHERBOUND, a YA fantasy, is out from Amulet Books on June 17, 2014.