Tuesday, September 21, 2010

The Origins of the Modern Disability Movement: Part 21 of "Miracle Boy”

A friend has written a blog article about famous people with dyslexia. Now, I know, having dyslexia is not the stigma it used to be. That's partly because so many people have it, or are related to people who do.

It's practically as common in our language nowadays as OCD and ADD -- and, for that matter, LOL. But I mean some people even go around humorously self diagnosing. "Sorry if I'm not focusing, it's just my ADD," you might hear someone say.

I've even heard people say "OCD is the new anal." In terms of describing behavior that's repetitive or fussy. Just to be clear.

Still, dyslexia is a real disability, even if some people make jokes about it and similar "invisible" conditions. I even once heard the Washington disability-rights leader Evan Kemp say that his dyslexia made his life more difficult than his spinal muscular atrophy. It made people think he was stupid just because he had trouble reading and writing the way they did.

I certainly have always felt pleased that my disability is so visible, so obvious. People may disrespect or underrate me because of it, but they never accuse me of faking it or taking advantage of it (even when I do!).

Anyway, here's the link to my friend's piece about dyslexics. “50 Famously Successful People Who Are Dyslexic”
Just one thing. Don't come back to me with jokes about Tom Cruise. I've probably heard them all already anyway.

The Birth of the Independent Living Movement

The whole idea of dependent autonomy, of being self-directed by relying on others, is a new concept that activists in Berkeley, California, are promulgating. I don't know about that at the time, yet on some level I know learning to manage my own assistants will ultimately enable me to grow up.

And marginalizing Dad from my daily life—distancing myself from his inability to accept the permanence of my disability, his hunger to uncover a cure—becomes liberating, too. I express and mask my mixed feelings towards him with a little song I make up. "Oh, my daddy, so sweet and so plump [which he never was], he looks like a camel without a hump!" It always makes Alec laugh, and Dad tolerates it. No one ever realizing the hostility behind it.

In the end, I decide my parents' divorce isn't a tragic turn but a fortuitous one, because it sets me free. Yet the ghosts of their breakup—the encroaching sense of familial bonds as stifling, strangling—will haunt me in adulthood.

That same year—1972—the nation's first curb ramp for wheelchairs is cut at the corner of Bancroft Way and Telegraph Avenue in Berkeley—the result of lobbying from a recently established group called the Center for Independent Living, whose headquarters I visit seven years later. The CIL is launched by a small cadre of physically disabled activists, mostly graduates of the University of California at Berkeley, with a mission to give people with disabilities the means to control their own lives, have full and equal access to everything society has to offer, and live outside of institutions, in their own homes, with the assistance of personal aides they hire and control themselves.

This is very different from any sense of what it means to be handicapped that I've ever known. It's antipodal to Dad's view of it as a mark of failure, a problem to be solved, or Mom's semi-stoic proclivity to just cope and get on with the business at hand, fighting misery with industry. It's different from my own formulation, at ten, that disability can be ignored if you've got enough character, intelligence and humor to rise above it. The independent-living "model" is nothing short of revolutionary.

Spearheading this revolution is a visionary named Edward V. Roberts, who will become known as the father of the modern disability-rights movement.


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