By Derek Newman-Stille
Far too frequently, able-bodied people feel that they have a place to talk about disabled people. They use different justifications for this act of narrating our bodies to us, but the bottom line is always the same. There is an assumption that our bodies are open to public debate, that we are resigned to expertiseism about our bodies not only by medical practitioners, but anyone who feels that they have a stake in narrating us.
I see this most commonly when it comes to medical practitioners, whose power to narrate our bodies is so strong that we have to depend on their assessment of our bodies to get access to basic accommodations. Our own narration of our bodies is never considered enough to guarantee that we will acquire everything we need. In university I observed this with the accommodation letters that I was forced to bring to my professors. My own narration of my bodily needs was not enough to be considered appropriate, so I needed to bring a letter detailing my needs in order to get them. Catherine Duchastel de Montrouge brought up the need for accommodation letters during her recent talk at the Canadian Disability Studies Association and discussed the fetishization of the accommodation letter for our post-secondary education system. Duchastel de Montrouge talked about being told by professors that she shouldn’t need accommodations, that she would be denied accommodations because the “professor knows best”, and the suspicion of accommodation letters by most professors. When talking to her, I likened the accommodation letter to a passport, allowing us into a space that we are considered unwelcome in and a space where we can have our rights withdrawn at any time. We depend on these accommodation letters for access to education, but they are dependent on the physician writing them, a university office drafting their final copy, and a professor deciding to abide by these letters.
This is, of course only one example of the need for physician letters, since disabled people also need the word of a physician to access disabled parking, be able to use accessible seats on aeroplanes, have access to disability accommodation, and in order to access government support funds for people with disabilities.
I have frequently had people narrate my body to me after seeing me walking with a cane. I have been told “if you work hard enough, you won’t have to use that any more”, been asked “why do you think you need a cane?”, and been told that I “look normal enough”. These narrations happened by strangers, which frequently occurs for disabled people. Able-bodied people have been told through their media that they have a right to narrate disabled people’s bodies to them, to tell us how to live our lives, how to be disabled in this world, and how we should act to make them more comfortable with our presence on the landscape.
A friend recently came back from a writers’ conference where she was the only disabled person on a panel about writing disability. It should be abundantly clear to everyone that disability is generally not written of well in our literature and popular culture, so I am amazed at how little people want to listen to disabled people give input on their bodies and how to write them well. She noted that all of the able-bodied people on the panel tried to tell her how disabled characters should be written, replicating tropes about disability. They even waved their hand at her to say “people like you” when talking about people with disabilities.
I have experienced similar issues when able-bodied people have asked me to read their stories about people with disabilities because they generally respond to my reminders that the character is presented problematically by getting angry and saying things like “that is how I need the character to be for the novel to work” or “but it’s not really about their disability, its about what it means for their society” or “but I saw a meme on facebook that said this” or “I talked to someone who was disabled and they said it was okay to write people like them this way” or “but I read a book on it by a doctor and this is what they said” or “but I tried to make this character a nice person, isn’t that enough?” This is one of the reasons I have become more hesitant to read people’s manuscripts, especially when they portray disabled people. I know that little will shift when I ask them for more, ask them to do better, or ask them to listen, pay attention, and understand.
Able bodied writers and media consumers seem resistant to hearing back from the people they write about. Our disabled voices only complicate the easy symbolism that they write onto our bodies, our three-dimensionality only complicates the simple one-dimensional characters they want to write. We make it hard to write us when we speak up.
I think that bears repeating: We make it hard to write us when we speak up.
I think this could be a call to action. A call to able-bodied people to actually listen to us, a call for convention organizers to have disabled people speaking about disabled characters, and a reminder of the call “nothing about us without us”.