Monday, December 3, 2012

Where to Draw the Line, or, Why I Hate Radio Buttons and Like Ticky Boxes

Today is the UN International Day of Persons with Disabilities. The Disabled Students Campaign in the United Kingdom is encouraging students to "come out" as people with disabilities in their Facebook statuses, and a few of my friends have done so. Awesome!

I thought about what to write in my status, and realized it would be a blog post rather than a 140-character snippet. The long and short of it is, I don't know whether to self-identify as a person with a disability, because of all the connotations associated with the word, and the fluidity of my own human experiences. Occasionally, surveys encourage me to self-identify as either having, or not having, a disability. I never know what box to check.

It's easy for me to identify with specific conditions. For example, I'm asthmatic. That's not up for debate. The Accessibility for Ontarians with Disabilities Act lists asthma as a disability. By their definition, I am a person with a disability. But is it that simple? I have asthma, and take three medications to keep it under control and to stay healthy. I can run ten kilometers; asthma doesn't stop me from attending school, having a job, getting around, and enjoying myself. Inconvenience? Certainly. But disability? For me, using that word to describe my chronic health concern trivializes the experiences of people who are marginalized because of differences in ability. I am inconvenienced, rather than marginalized, due to my asthma.

My vision makes this more complicated. Presently, I have a minor visual impairment. With glasses, I legally can drive, but cannot see some signage, writing on chalkboards, and so forth at the same distance that most people can. This level of vision is relatively new for me; for several years, I used magnification or large print or else contended with eye strain and painful headaches; I was unable to see the board in class; double vision made me even clumsier than I would otherwise be. I relied on Accessibility Services at my university to enable me to write tests and exams. There was a period in which I was legally blind, and the vision consultant with my school board worked with me to help me learn to navigate the school building. Large, colourful stickers helped me to find my locker, but I depended on other students to help me find my friends in a large room. Baffled teachers allowed me to listen to books on tape during class, rather than finding a way to make their lessons accessible. Looking back, it is obvious to me that, at that point, I had a disability. I never used that word, however. There was too much stigma attached to blindness, and so I shied away from calling myself blind. "Visually impaired" gave me more leeway to show people what I could do, before words would erroneously tell them what I could not do. Disability was also always something that happened to somebody else; using a word meant acknowledging that I was different from my peers.

Mental health has long been a complicated issue for me. I see my diagnoses of depression, anxiety, and post-traumatic stress disorder as labels that have helped me to get the medications that I need, rather than as an identity. Those labels, to me, describe perhaps a reaction to my past; my mental health is part of a general trajectory of my life. I frame it as troubled mental health, rather than mental illness. Illness implies that something is wrong, whereas I see my frame of mind as normal. I would be more concerned if I didn't react in the ways I do to challenging situations. Post-traumatic stress disorder has been useful to me as a label only to the extent that it has helped mental health professionals to understand my frame of mind with somewhat less talking on my part. Were it not for this pragmatic point, I would steadfastly refuse to let a psychiatric system pathologize my thoughts and feelings.

Doctors seem fixated on labels, with certain labels connoting disabilities, and others not. It is hard to find health professionals who will acknowledge and work within a middle ground. A psychiatrist once suggested that I may have Asperger disorder, putting me on the autism spectrum. I neither meet the diagnostic criteria for this disorder, nor do I find it a useful label for my lived experiences. The way I interact with others may occasionally be challenging, but it is not a disability. It is simply me. The possible labels for my physical/neurological health stymie me even more. This much is clear: I am a clumsy person, and am clumsier on the right side of my body than the left. I struggle with fatigue at times, as well as chronic back pain and odd neuropathic symptoms - burning, itching, tingling, and bizarre aching that comes and goes. Inconveniently, I have a single lesion in my brain that is consistent with demylination. But I don't meet the diagnostic criteria for anything in particular, and most of the time, I feel just fine. Sometimes, I would consider this to be a disability; there have been days when my right foot drags so much when I walk that I avoid stairs so as not to trip over myself, or when my balance is too poor to stand on the bus. But it's transient, and I am usually as "able" as the next person. Self-identifying as a person with a disability would not acknowledge, for me, these fluctuations in my ability. I find it more empowering and true to identify with the very specific health issues that I have written about, rather than with a monolithic label.

I am sure that many people would argue either that for me to identify as a person with a disability would be trivializing the experiences of people who have difficulties far greater than my own. Others would emphasize the need for people with invisible disabilities to recognize them as such, and show how varied the spectrum of ability is. But if ability is a spectrum, where do we place a line for who is, and who is not, disabled? Can it vary, person by person? Can it move? Need there be a line at all, if we acknowledge that disability is socially constructed and thus strive for a society that does not only accommodate, but celebrates, diversity?

Ultimately, there needs to be another ticky-box: "It's Complicated."

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