Friday, May 1, 2009

What Disablism Means to Me

In 1990, when I was in the ninth grade, the Americans with Disabilities Act was passed into U.S. law. I had to research it and write a paper on it for my English class. At the time, the conditions which now render me legally disabled (major depressive disorder with psychotic features and post-traumatic stress disorder) were present but not yet disabling (the psychotic features didn't show up until my late 20s, and the depression and PTSD were manageable at the time).

I hadn't been around many people with disabilities at that point in my life. My elementary school best friend Jessica had a twin sister named Bethany who was blind and severely mentally and physically disabled; Bethany could not feed herself, nor control her bladder and bowel functions, nor had she learned to speak by the time Jessica and Bethany were eleven years old. In ninth grade, my best friend was my next door neighbor, Suzie, who was legally blind; she was severely nearsighted and had been born without a certain type of nerve cell that enables humans to perceive color. She was about six months older than I, but attended the state school for the deaf and blind instead of the local public high school I attended. PaPa (the "a"s are pronounced like the a in apple), my maternal uncle's father-in-law, who, despite only a tenuous connection by marriage to me, always treated me like a granddaughter, had lost the lower portion of a leg and was losing his vision due to complications of diabetes. That was about the extent of my experience with people with disabilities at that time.

I don't remember any more exactly what I wrote in that paper; I no longer have a copy, either printed or electronic. But I do remember that most of what I wrote was about reasonable accommodation, like ramps for wheelchairs and the widespread availability of closed captioning and other adaptive technologies. I believe I said that it was only fair to provide reasonable accommodation, that to fail to provide reasonable accommodation was to disenfranchise people with disabilities. I don't think I was wrong, but I also realize in retrospect that I didn't quite get the whole picture.

Some years later, I remember telling a shop owner that he was in violation of the ADA because I couldn't get my (then infant) daughter's stroller through his shop aisles, so how was a person in a wheelchair supposed to shop in his store? (The stroller was narrower than most adult-sized wheelchairs.)

I remember at various times being on crutches for temporary ailments of the lower extremities and cursing the inaccessibility of public establishments and thinking, "Jeez, what do people who use crutches permanently do?"

I think those are perfectly valid reactions to an ablist world, but that's still not the whole picture.

It wasn't until I became disabled with an "invisible illness" that I really began to see. To look at me, you wouldn't think that I'm disabled. I can stand and walk without assistance. I wear glasses but that hardly counts as a disability. I can hear. I can speak and write clearly in English and Spanish, and I can read and comprehend French and Latin (never was too hot at writing or speaking French, and my Latin is VERY rusty). I can drive a car (even a stick shift) without adaptive technologies (other than my glasses). It took ten years, but I have a four-year college degree.

What I can't do is hold down a paying job. Some days, I am so depressed I cannot get out of bed except to use the toilet. Some days, I can get out of bed but I have to force myself to do it. Some days, I'm so afraid of people that I cannot stand to leave my house. Some days, I can't trust my perceptions, because my eyes and skin are telling me that there are bugs crawling on me. Some days (like today), I'm okay. Occasionally, I even feel really good. Because I can never predict from day to day whether I'm going to be okay or not, I can't commit to a work schedule. Before my condition became this severe, I worked 8am-5pm Monday through Friday (like "normal people"), doing clerical work. I can't do that any more. I'm working with my state Department of Vocational Rehabilitation to try to find a line of work in which I do not have to commit to a work schedule and therefore might be able to get and keep a job again.

What I've come to see and detest is the idea that if you can't (or for that matter, don't) earn a paycheck, what you do means nothing to the world at large (but the "don't" part is for a post on sexism, and that's not what this post is).

What I've come to see and detest is that if you differ in any way from the able-bodied norm, you're not real.

What I've come to see and detest is that if you're not in a wheelchair, or on crutches, or wearing hearing aids, or visibly different from the able-bodied norm, you don't count as disabled.

I'm sure that's STILL not the whole picture, but that's disablism, to me.

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