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.
###
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

Part 26 of "Miracle Boy”: Crips get education reform, and I get a man!

Off to NPR West today to record my Halloween commentary.  This is no. 4 for the year, and still I get butterflies.  Wish me luck.

Meanwhile, these humble entries are supposed to be streamed to Amazon.com now.  But I think the Net Fates are against me on this. I keep trying--and failing--to set up an Author's Page ... all because of a short story I contributed to a new collection called Voice from the Planet. Check it out.

As I "type" this (OK, dictate it to my computer), my wonderful agent is submitting our new and improved book proposal to a couple of publishers. Yeah, well, she's wonderful today. If this doesn't work out, I'll still say she's wonderful but I might not mean it as wholeheartedly. Just sayin'.

(Kidding, LKG.  Kidding.)

One final note: After posting the last installment here, I received some interesting feedback. For example, it seems I wasn't the only one threatened by the character I've called Quentin. If only I had known!

I wouldn't have included the incident at all, but some of my early readers suggested I needed to heat up the peril in my story. Readers get involved when characters are in danger. So, in it went.

What follows is what followed that dark event. Enjoy! (And listen to NPR's Morning Edition next Friday.)

***

In 1975, when I'm in eighth grade, Congress passes the Education for All Handicapped Children Act, mandating full integration of kids like me in regular public schools. It's historic, but if my parents are aware of it they don't tell me—or if they do, it doesn't register.


That same year California Governor Jerry Brown names Berkeley's Ed Roberts to be director of the sunshine state's Rehabilitation Department, the first time a former claimant of government largesse has risen to such a position. I say "claimant," and not "recipient," for a good reason. As a student, Roberts was turned down for educational/vocational assistance because he was deemed unemployable. Now he'll forever alter the criteria for evaluating the potential of people with disabilities.


I haven't heard of Ed Roberts yet, but Mom does tell me about a man in Ireland who is so paralyzed he paints with his left foot. She says he's written a book about it. I'm not looking for role models of people with disabilities, and I can't understand why she tells me these things. She's still concerned that I might need some emotional bolstering due to being handicapped, even though I've already done so much, gotten so far, and scarcely ever felt sorry for myself.


Shortly after my bar mitzvah—celebrated with a buffet of my favorite foods, in the ballroom of the reform temple two-and-a-half blocks from our apartment—Mom says, "It's time you had a man's help."


Help with what? I wonder. Ah, she means instead of the Caribbean women we like to make so much fun of. I'm embarrassed. Does she think there's something ... inappropriate ... going on with them? "For your privacy," she clarifies.


Privacy isn't something I'm especially concerned about. I've been naked in front of almost every adult I've ever known!


The first man we hire is a counselor at a day camp I attend the next summer. It's a handicapped camp on Long Island, which I've consented to since it's the only kind of camp that'll take me and I'm tired of being bored every summer while Alec goes off to sleepaway camp in the woods of New England. It's my first protracted experience among … them.


I try not to stare at how some sit in their wheelchairs stooped over or twisted sideways—or how their legs splay open on either side when they lie supine to get changed into bathing suits. I hope to God I don't look that handicapped, though I fear my prayer is hopeless. At fourteen, I regard my disability chiefly as a matter of vanity.


Austin is the best and most popular counselor, able to lift any one of us easily and swing us around for fun. He always shares his pretzels at lunch, tells us he won't go to Vietnam if drafted because he's adamantly nonviolent, and claims to rush home every afternoon to rescue the bugs in his family's inflatable pool. I want to move in with him and his family. When Mom asks if there are any counselors I'd like to have as my helper in August, it's an easy choice.


We have a small house on Fire Island. Austin stays in the guest bedroom. Once I overhear Mom talking with her friends; all the women have a crush on him.


In the fall Austin attends Yeshiva University. Soon he introduces me to Orthodox Judaism. It's alien, so different from the Reform version I've known, but I love the structure, the myriad rules (and loopholes!) for every aspect of life. No need to chart your own course.


And I think this may be the answer to my confusion and self-doubt—to the bewilderment brought on by divorcing parents, budding sexuality, and being grievously disabled in an overachiever milieu. "I want to keep kosher," I declare to Mom one day.

###

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

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

THE BIRTH OF THE MOVEMENT THAT CHANGED THE WORLD, or MY BIG FAT ATROPHIED PREADOLESCENT BODY

 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.

***

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.

***