For Accurate Narratives of Disability, Let People Speak for Themselves

When I was younger, I don’t think I really knew what it meant when my parents told me that my sister has a disability. Maria was born with Down Syndrome—an intellectual and developmental disability. While I watched my friends’ siblings grow up through the “average” public school system, playing sports, going on their first dates, and getting admitted to college, I listened to my parents talk about IEPs and special education paraprofessionals. And being a young bookworm, I tried to attach myself to the few books I could find—”What’s Eating Gilbert Grape” and “Rules”—that actually somewhat explained what I was going through. Unsurprisingly, they were few and far between.

As I started college as a literature major, I realized my love of books outside your average stack of high school classics. I took a few cross-cultural literature classes that sparked my love of learning through narrative across countries, sexualities, and genders. Yet despite my curiosity and hunger for more literature, it wasn’t until the summer after I graduated— when I discovered Cow Tipping Press – that I even thought about writings by people with intellectual and developmental disabilities as being a part of the literary canon. While topics like race, gender, and colonialism were always swimming around in my mind, I hadn’t truly thought about ableism or literary representation of disability despite the fact it’s a part of my life. When I found the Cow Tipping fellowship last summer, I felt like I had found something that I hadn’t known I was looking for: an opportunity for people like my sister to accurately represent themselves.

My family and I have definitely felt the effects of absent disability narratives. Whether these were Down Syndrome-specific comments: “Oh, I love people with Down Syndrome, they’re always happy!” to nosy comments about Maria in general: “So is she high functioning or…?” the lack of representation of people with disabilities leads to rude comments and false assumptions, and they weigh heavy on real people.

If you Google “disabled characters in literature,” you’re going to find a multitude of lists of classics and best sellers written by neurotypical and able-bodied people. In these depictions, there’s an obvious leaning towards sympathy, disadvantages, and stereotypes.

For example, let’s look at Mark Haddon’s “The Curious Case of the Dog in the Night Time.” Consider this quote from Christopher John Francis Boone, Haddon’s autistic protagonist, admiring the comforts of being stuck in an institution: “It was nice in the police cell. It was almost a perfect cube, 2 meters long by 2 meters wide by 2 meters high. It contained approximately 8 cubic meters of air.”

By comparison, consider this quote by Dar Cieminski, a Cow Tipping Press author, who’s musing over restrictive policy and the desire for autonomy and privacy: “Then we got, we have to lift the ban over at our house…So that we can be left alone. We can’t even be left alone at work either. I mean I can understand from a safety point, but not every little thing is a safety thing.”

While both of these quotes concern safety and privacy, the most significant difference is that Cieminski is calling for independence. Isn’t it problematic that a character with an intellectual disability like Boone is comfortable in a police cell, whose bars aren’t all that different than the windows of state hospitals like Willowbrook? Isn’t Cieminski’s advocacy more powerful?

Or look at this simple quote from Charlie Gordon, a character with an intellectual disability, in “Flowers for Algernon”:  “I just want to be smart like other pepul so I can have lots of frends,” versus Cow Tipping Press author Ethan Bussiere’s bold self-love: “Come and take me on/‘Cause I’m ready to become/What I’m meant to become!”

The shift in confidence and eloquence is stark. This is what happens when difference is embraced and resources are accessible to people with disabilities – they succeed just like anyone else.

Narrative is always important. It’s one of the easiest ways for people to learn about experiences and identities outside of their own. I’m also a firm believer that narrative is one of the best places for people to advocate for themselves by telling their own truths. This is especially so when we’re talking about people with disabilities, whose history is grounded in isolation in institutions and special education classrooms. The more representation we see, the more people with disabilities are “normalized” (Let’s be real, they’re already normal) and are accepted into our daily landscapes.