01 April 2014

Disability Theory and Illness

I've been trying for some years to think about chronic illness through theories of disability, but it's a very problematic fit. I'm writing this post in the hopes that some of you my readers may point me to articles or books that might help me think this through... if they exist. And if I'm giving disability theory short shrift, I'd appreciate corrections as well.

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A core insight of disability theory, as I understand it, is to understand disability not in terms of physical impairment but rather as social construction. This means, for instance, that a person who uses a wheelchair is disabled by physical environments that require stairs for navigation, not by the condition of using the wheelchair in the first place.

To some extent, I can understand my own illness as constructed by social environments. When I was first looking for my first job after college as a newspaper reporter, I applied for a position where, I was told, the newsroom was a smoking area, and if I were to work there, I'd have to live with it. I couldn't pursue the job because I wouldn't have been able to breathe. So the changes to US law making most indoor places smoke-free have a significant structural effect, enabling me to work and eliminating impairment as the relevant conceptual framework.

A few years later I applied for another job where it turned out the employer, who worked from home as a literary agent, had a cat. Again, I had to turn down the job. Keeping cats as indoor pets is another socially constructed phenomenon, i.e., it's not "normal" or "natural" that people should do so, but culturally determined: cats were probably domesticated around 4000 years ago, probably by Egyptians. On the other hand, cats are, well, natural creatures. Mushrooms are also natural, as are forest fires, at least some of the time. One of my worst attacks occurred while packpacking several hundred miles downwind of a forest fire, another after eating mushrooms.

The other side of arguing for social construction as the site of disability is that it downplays the role of impairment.

It would be one thing to have to forego the occasional workout; anyone who's ever had a cold can probably imagine not wanting to go for a long run while seriously congested. But when breathing difficulties affect even talking and eating, then the notion of "impairment" becomes crucially important, and a focus on seeking out medical resources to mitigate impairment becomes a critical first step.

Disability theory helps me to formulate ideas about how our culture constructs the notion of "normal" and renders invisible people who don't fit that construction. It helps me to fight back against the idea that medical patients should be passive objects in the all-knowing medical enterprise. (Feminist approaches to women's health were, in fact, instrumental for me in coming to that perspective.) But it doesn't help me work through ideas about how impairment, and reliance on medical help in managing impairment, fit within disability theory.