My research started in terms of "disability", specifically physical disability. It was the word with which I've always identified myself informally, and then grew to be a category with which I interpreted my own corporality, and I learned a lot reading blogs that were related to disability in one way or another. (And at the time I wrote about it.)
My research was similarly in terms of physical disability. I told people I was studying physical disability, or how people lived with physical disability, or people with physical disability in Rio. And the way I met people was through these kinds of questions, and it's telling that I went to ACADIM partly because I've got a Muscular Dystrophy myself.
But, in my thesis, I want to put use of the word disability on hold. It's a word that carries a lot of baggage, emotional and theoretical. It's also a category that's used to make analyses independent of time, social class, nation and etcetera.
There's argument over whether a person is disabled by their body, or by society, or by some mixture of both. But the agreement here is that the body is somehow a valid unit to be talking about (often with an emphasis on what it can't do). Talking about "disability" is answering the question in the same breath that it is asked.
My study is of corporalities, and a large part of this is looking at how people's bodies are involved in mutual dances. Bodies exist in relations with the world so dense that it is sometimes difficult to separate them. My goal in this work is to find a way of talking about corporalities that isn't limited to "disabled" bodies but rather that applies more widely.
In not using the word "disability", I want to decentralize what would be thought of as the disabled body, seeing the bonds between objects, people and words. First we have to see the specific nature of these corporalities as I saw them in Rio de Janeiro before generalizing them to an abstract transnational "disability". I'm going to be using a different word to mean some of the same things: "chumbado".
"Disability", for me is a political and administrative term. I continue to use it in these contexts and am seeking employment that will treat it as such. But I do not feel it is always useful as descriptive label, or an explanatory one.
Post modified Wednesday, 9 March 2011.