When characters with disabilities are portrayed as inspirational or overcoming obstacles just for living their daily lives, it sends a message that a life with a disability is a burden. What message does that send to young people?
Severe, chronic vertigo associated with migraines like mine is a “silent” disability, one people can’t see. Many people are compassionate. But others lack sensitivity, assume you’re faking it or just have a headache and will get over it.
I’ve never written fiction about living with Crohn’s, and to be honest, I’ve never wanted to. Perhaps because I still feel what I felt for years growing up: that nobody wants to hear about my annoying, humiliating misery. Yet I know, intellectually, that this is a shame, because there should be more characters in YA literature who live with chronic illnesses like IBD.
Ever seen the Allstate commercial? “I’m a random windstorm. Shaky, shaky.” Well, sometimes that’s how life feels when you’re a kid with disabilities. Because I’m both very random and my life can be, well, pretty shaky.
Did you know in the US it’s illegal to drive within six months after having a seizure? Even under supervision, even just around the block, I wasn’t trusted behind a wheel.
According to pop culture, mentally ill people are magically more creative, filled with a manic drive to create art that pushes them to the brink until they finally explode.
After second grade, I stopped reading most books unless they were assigned for class. Even then, I often didn’t read them. The reason being, when I read a sentence, I often didn’t understand it. Somewhere between my eyes seeing the words and my brain, the phrase disappeared into the ether.
When I received my diagnosis of Asperger’s syndrome seven years ago, I thought of all the young people today who face the social challenges and bullying that I faced decades earlier. I wanted to create a character like me, but one who fights back against the way others treat her in a way that I never did.
It wasn’t until I was an adult that I could finally understand that from the time of my diagnosis, my education was not going to be “complete,” because I did not have the full access I needed. It was as if intensive speech therapy and itinerant teachers were more important than having a sign language interpreter in my classes.
I have to accumulate all the data from these varying experiences and use them to define myself. Otherwise, others will do it for me.