Wednesday, July 07, 2010

Editing Out Oppression: Disability and Narrative

Just two weeks after we discussed oppressive narratives in the context of editing and writing, Lisa Coriale writes in the Tyee about some of the narrative boxes into which she has been unwillingly stuffed:

The way people with disabilities are covered is problematic because it suggests attention is merited only when a person with disabilities can be portrayed as a superhero or a victim.

Don't feel sorry for me

For example, I was labeled a superhero. In an article that appeared in Kamloops This Week in May 2007, shortly before my graduation from Thompson Rivers University's social-work program, the reporter portrayed me as "a climber of a Mayan temple." He said I had been climbing pyramids since the day I was born.

... My portrayal in the story made me feel everyone was placing expectations on me and I had to accomplish them. I could have inspired other people or I could have made them feel they were not capable of accomplishing the same. (On the other hand, sometimes I feel as though I have climbed many mountains, so it is a bit of a contradiction.)

At other points in my life, such as when I was featured in an article in the Elliot Lake Standard, I have been portrayed with pity as well as having superhero status: "Though bound to a wheelchair, unable to move her limbs, her voice silenced by a severe form of cerebral palsy."

When I see myself portrayed this way, I feel uncomfortable because I do not want people to feel sorry for me. I do not feel mentioning my disabilities was necessary. By stating I was wheelchair-bound, the reporter made it sound as though I'm not able to participate in daily activities.

This kind of stereotyping is no mere question of word choice. It's true that words and phrases such as wheelchair-bound and silenced certainly perpetuate the stereotype of Coriale as a victim, who is lacking in agency and ability. Simply changing those terms for more active ones (maybe re-casting the quoted sentence as "Though, owing to her cerebral palsy, she uses a wheelchair and [whatever assistive technology she may use to communicate], ... ") wouldn't repair the conceptual problems with representing a thinking person who has a list of accomplishments and (presumably) setbacks; has ideas, hopes, and dreams; has an identity that may encompass her disability but is unlikely to be defined solely by that (any more than, say, my identity is defined solely by my left-handedness or inability to do higher mathematics). Start thinking of people as, you know, people, and it becomes far more difficult to reduce them to clich├ęs.

Coriale gives some really solid advice, both at the word-and-phrase level and at substantive story-level:

  • Use active language that puts the disabled person in control of what they do. Use person-first language (person with a disability/with cerebral palsy/with muscular dystrophy/etc.). Make the condition something the person has or lives with rather than the sum of their existence. Replace verbs that indicate passivity (not always passive verbs) with those that indicate action and agency—a person may use a wheelchair, rather than being confined to it, for example.
  • Mention disability and medical details only when they're relevant. This is a big one for me: think about which story you are telling and why you are telling it. Are you discussing barriers to participation for Deaf people in political discourse? Then, yes, it might be relevant that the activist you quote is Deaf. Are you telling a story about quilting? It may not be relevant that a champion quilter uses a wheelchair. As for medical details, dude, those are personal. There are times it makes sense to mention them, but they shouldn't be gratuitous fodder for pity.
  • Get it right. I did not know this, but apparently many journalists don't bother to check in with the person they're talking about when they mention a person's disability. So they misrepresent. Which is just not very respectful. People are individuals, not medical statistics. Just because Google tells you that autistic people have trouble making friends, you can't say that the autistic person you are profiling is friendless or even that they have trouble making friends. It may not be true.
Needless to say, I'm adding Coriale's article to my required reading list for students.


Rachael Anne said...

Third bullet point: you missed your own person-first advice. Perhaps you could have phrased it, "person with autism."

Excellent insights into an important topic. Thank you for posting.

jennie said...

Rachael Anne, that's a really interesting point. I didn't specifically mention person-first language—though now I see that my examples in the first bullet point all do use it—because in my dealings with people with disabilities, most have not been that bothered by whether the one used formal person-first construction, or mentioned the condition as an adjective that modified their personhood. The key seems to have been that the personhood, and not the disability, should be what we know about a person.

As a currently non-disabled person, I can't weigh in on how a person with autism or a person who uses a wheelchair might prefer to be mentioned. As an editor, I think that person-first language is a useful tool for, well, putting the person first, but I'm not sure it's always the best or most appropriate tool.

Outside of writing about disabilities, in discussions of writing about other marginalized groups, I've seen person-first language used clumsily, and sometimes in ways that wouldn't work for members of the groups—I remember an educator very gravely telling me that we shouldn't talk about "gay men," or "lesbians," (let alone "queer people" but "people who are homosexual" and "people who are bisexual." In context, this was not only clunky, but also inaccurate and quite contrary to the standard usage within any queer community I've ever known.

So in my usage, I go back and forth on person-first language, depending on the wishes of the individual, the conventions of the publication, and what I think will work in context. I absolutely think that someone's condition should always be secondary to their personhood; I'm not sure that "person with ... " is the only way to accomplish that, or, in all cases the best way.

There doesn't seem to be any consensus on this among people with disabilities with whom I have spoken, either.

So you're absolutely correct, I could have phrased it "person with autism." I think I'm going to let the current writing stand, though, for now, and see what other readers think. In my hypothetical story about a hypothetical autistic person / person with autism, as I said, it's unlikely I would even mention the autism, unless that were somehow germane to the story.