A BERKELEY STATE OF MIND

By Ben Mattlin

It's widely reported that a certain famous novelist has a new book out that takes place on and around Telegraph Avenue--that multicultural boulevard running through Berkeley and Oakland, California. A worthy landscape, to be sure, but I can't help wondering if his fiction will do justice to that area's seminal role in the disability-rights movement.

Granted, it may seem a small part of that vibrant cityscape's history.  Small to you, that is.  As a lifelong wheelchair-user, I can't help regarding Berkeley and environs as a kind of Holy Land.

I myself didn't understand their importance until researching my own book--a memoir about growing up during the height of disability rights.  I found myself referencing Berkeley over and over again.

In fairness, I haven't been privy to the celebrated author's new novel yet, but I'm reasonably certain there's little or no overlap in our takes on Berkeley.  Does he mention the Rolling Quads, for instance?  Doubtful.  But once you learn of them, how can you forget this Merry Prankster-ish troop of early activists who tooled around the Bay Area protesting access barriers in the late 1960s in revolutionary devices known as motorized wheelchairs?

Does he reference the world's first curb ramp for wheelchair-users, cut at the corner of Telegraph Avenue and Bancroft Way?  Or that it was at the renowned University of California, Berkeley, campus that Ed Roberts, a polio survivor, fought for (and won) the right to attend regular classes in his wheelchair, decades before any disability-rights laws had even been considered?

Roberts is now known as the father of the independent-living movement, which went beyond the political idea of equal rights to actually mapping out how people who were so totally dependent on others physically could be empowered to control their own lives.  His legacy (he died in 1995) is a national network of independent-living centers designed to support people with disabilities in that quest.

 
No reason the famous novelist should listen to me.  His story and mine are completely dissimilar, I'm sure.  And I have no personal stake in Berkeley--I don't live there--other than the debt of gratitude I feel.  Yet I remember my father's taking me to the original ILC there, in 1979.  I was on the cusp of starting college on the East Coast, of living on my own (with a paid attendant) for the first time.  Dad thought the place might inspire us, teach us something.  What I recall mostly is my adolescent discomfort at all that talk about rights and empowerment--but I loved the gadgets.  The speakerphones, remote switches for lights, and souped-up, customized wheelchairs that have become emblematic of modern disability life.

I'm confident I'm not the only one who feels this visceral connection.  Many disabled people's lives have been profoundly affected by Berkeley's revolutionary zeal.  Leaving this particular material out of any yarn about Berkeley would seem a major disservice.  Even today, Berkeley is the home of the World Institute on Disability, a leading think tank on nonmedical, non-technological, disability-related issues.  Policy leaders from around the globe convene on its campus to discuss the very survival of what, in some countries, is the most marginalized population.

 
Chances are the celebrity novelist already knows some of this, though he might not feel it in his bones the way people like me do.  You can't spend time in Berkeley and not be aware of its sizable disability presence.  And in truth, the city itself takes up only a small piece of my book.  (The word "Berkeley" appears only a dozen times out of some 75,000 words.  I counted.)  But I like to think its spirit pervades my true tale of the struggle to achieve a sense of autonomy and pride in a sometimes unaccommodating, even hostile, world.  Isn't that what Berkeley-ism is all about?
 
Perhaps the eminent novelist and I could tag-team.  Not that we should literally tour together, but could we defer to each other on specific areas of expertise?  I'll take the accessibility stuff, and he can have the rest.  Yes, trying to piggyback my book promotion off of his (and vice versa) may sound crazy.  But these days, when you're not supposed to judge a book by its cover but are expected to judge it by dubiously-sourced online reviews, who knows?  Maybe I'm onto something.  Maybe this'll prove a winner after all.
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Quick links: The books mentioned here are –

Telegraph Avenue: A Novel, by Michael Chabon

Miracle Boy Grows Up: How The Disability Rights RevolutionSaved My Sanity, by Ben Mattlin

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.

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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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