Friday, September 24, 2010

The Disability Revolution Begins -- Part 22 of "Miracle Boy”

Back by popular demand--ha!--
Here's the next section...


Nineteen years earlier, in 1953, at the age of 14, Roberts contracted polio and found himself unable to move, in a hospital bed, using an iron long (portable ventilators hadn't been invented yet). There, he made a discovery similar to the one I'm making in the early-70s—the discovery of a new kind of freedom. Here's how Ed Roberts describes it years later:

I decided that I wanted to die. I was 14 years old. Now, it's very hard to kill yourself in a hospital with everything set up to save your life. But the mind is a powerful thing. I stopped eating. They started to force feed me. It was really demeaning. I dropped to 54 pounds.

My last special duty nurse left, and the next day I decided I wanted to live. You see, that was a big turning point. Up until then, these nurses were available and doing things for me around the clock—I didn't have to make any decisions for myself because they were always there. When they all finally left, that's when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom. I started to eat again.

Roberts and his crew, who call themselves the Rolling Quads, are fighting against a system in which institutionalization of the disabled is still widespread. Some states go so far as to forcibly sterilize people with certain disabilities. Some prohibit marriage for the genetically disabled, for fear of procreating hereditary conditions like mine. Visibly disabled people are actually barred from appearing in public in cities such as Columbus, Ohio—Dad's hometown—until 1972 and Chicago until 1974, under what are collectively called the "ugly" laws because they target anyone perceived as unattractive, for being a disturbance of the peace.

The movement to change all this and more is rising in discrete pockets all over, inspired by Black civil rights. Closer to home, in New York City, at the very same time though unbeknownst to me, Judith Heumann organizes a group called Disabled in Action to push for equal-access legislation. If Ed Roberts is the father of disability rights, Judy Heumann is the mother. She, too, is a polio survivor and wheelchair-user. In the 1950s she went to court to win the right to attend New York public schools, and in the 60s sued for the right to teach in them. But I'm not aware of any of this at the time. I have nothing to do with other handicapped people because the only ones I've seen are the kids on the Jerry Lewis telethon or in the special schools or summer camps I'm sometimes threatened with having to attend—the ones who are treated patronizingly, as if they haven't a brain in their heads. I know I'm not like them, so I think I have nothing in common with any other people who have disabilities. ("Disabilities" is already becoming the correct word in some circles, but not mine. I'm still handicapped.) I'm ignorant that others are making or have made the same sorts of discoveries I'm struggling with.

Feeling alone in my struggle, I become unsure of myself, unsure of whether I'm moving forward or backward. At ten, I'm increasingly conscious of my physical limitations. I may even be growing slightly weaker, though it's not obvious except I don't seem to be burning calories as effectively as I used to. I gain fifty pounds between annual doctor visits. I have to buy clothes measured in "husky" sizes. With my hopelessly curly, sandy-colored hair, I look more like a sybarite Bacchus than an angelic Cupid—though whether my fatness is a cause or an effect of my growing insecurity I won't hazard to guess. Doubtless my parents split-up is a contributor.

I begin emulating Chief Ironside's grouchy, hard-boiled demeanor from TV, if not his girth. Not a pretty combination, the softness on the outside mounting an ineffective pillow against a molten hardening within.


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