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

Post-Manuscript Journal, Part 3

About two weeks ago I learned my book is already available for pre-order on Amazon.  Woo-hoo!

I asked all my friends and relatives to order.  The idea, at this point, is to keep the numbers up.  Don't know how exactly Amazon calculates that stuff, but it's supposed to be important.

I've checked back on Amazon occasionally.  Last week I noticed my bio had been added.  Not the version I wrote exactly, either.  But not bad.

Today I notice the publisher has actually posted a description of the book.  Wasn't there before.  Surprising to me, since Skyhorse has only seen the opening chunk (same as anybody else who's followed this blog).

The book description is a tad cheesy, but I like it.  Hope my book lives up to it!

I haven't yet consulted with Skyhorse's publicist at all.  But it's heartwarming to know that somebody's been secretly working behind the scenes on my behalf!

More news as it develops…

http://amzn.to/th0krx

Part 24 of "Miracle Boy”

Today is Columbus Day--except not here. California doesn't celebrate Columbus Day. Which I understand, but even after all these years it still feels weird that the kids have school today … and in fact, have no days off in all of October!

Anyway, here's the next installment of my manuscript …

In sixth grade, when I turn eleven, I vent my frustrations on a good friend named Gary. Gary and I like to play Ironside, or at least I do. He's always Mark because, well, he's Black. (Guess whom I play?) On the show, Mark is the street-smart dude who drives the chief everywhere and helps him at home while attending police school. I actually like Mark better than the other supporting characters, so Gary has a position of honor. I don't think of it as racial stereotyping. In fact, secretly I wish I were Black. I like the psychedelic clothes and fluid manner of talking and walking. The outsider status resonates, too.


I have a new motorized wheelchair—my first—which is too heavy to get up the school steps, but at home I love to zoom around, especially fun in my building's labyrinthine basement. Gary and I play there after school, staying clear of the housekeepers who do laundry and the maintenance workers' office as we explore the myriad dark passages and commodious storage lockers, pretending we're on a mystery investigation. It's taken me a while to get an electric wheelchair. They've been mass-produced since 1956, when Everest and Jennings rolled the first one out of its California factories, improving upon designs putatively sketched by George Westinghouse in the late-nineteenth century and British engineers during the first World War, then perfected in the early 50s by a Canadian inventor named George Klein, primarily for World War II vets—demonstrating the connection between war and disability progress. The first E & J power chairs were notoriously slow, but in the early-70s they become the vehicle of choice for active quadriplegics—brandished by Ed Roberts and his trendsetting crew in Berkeley. The only reason I didn't have one before is Dr. Spiro feared it'd make me lazy, make me not use my arms and build strength. Now we know I can't build up my muscles, so he finally wrote the prescription.


The first day I get the motorized wheelchair home I chase Alec all around the apartment. I'm not a good driver yet and keep crashing, leaving tell-tale gray scratches on the white walls.


One afternoon at school, Gary spills paint on a picture I'm drawing. Maybe it was an accident. Maybe he had a good reason. The unforgivable point is his bravado about my defenselessness. "How are you going to get me?" he taunts.


I'll make him sorry for that. I can't fight him physically, but I have other powers. Remember? Words and sympathy are my raw tools.


I look around the classroom. Everyone's gone to P.E. I'm excused and Gary is too, to keep me company. If he resents being my companion, he never says so.


Slowly, silently, I start dumping books and papers and pencils out of my small desk. I have just enough arm strength to reach in and move things out. Gradually, one by one, I cover the entire floor within a two-food radius of where I'm sitting. Some of the papers sail even farther—which I was counting on. Gary watches in disbelief.


When the other kids and Ray, our teacher, return, I don't have to say a word. Someone immediately notices the shambles and demands to know what happened. "Gary threw my stuff all over the floor," I allege.


Gary stares in shocked betrayal, tears welling in his eyes. "No I didn't."


Our teacher doesn't say a word. He's in a spot. Accuse the handicapped boy or the Black boy? I feel no recriminations. I am ... proud. I've mastered the perks of disability.


A girl in our class says, "How could Ben throw so far?" And I know I've won. Never mind that in trying to prove I'm not helpless I've actually reinforced the opposite—made people think Gary took advantage of me.


Even after Ray asks the class to help clean up, I stay mum. This new course I'm on—aggressive, spiteful—satisfies my insecurities. If Gary had gotten in big trouble, perhaps I would've broken. I would've relented. He doesn't, which may mean our teacher suspects. Doesn't matter. Gary's an innocent victim of my need to flex, but I figure you have to be tough to survive in a sometimes unfriendly world.


All goes smoothly for a time. Then, a year later, when I'm twelve . . .

For Paul Longmore, in memoriam: Part 14 of "Miracle Boy”

This next, short passage is dedicated to my good friend and guru Prof. Paul Longmore, who I've just learned died yesterday. Suddenly, unexpectedly. He'd become a sort of celebrity in the disability-rights movement, but he was nothing if not unfailingly friendly and personable and supportive and warm, too. I had read of him before I'd met him. That was 20 years ago or more. He was a historian and polio survivor who educated me and hundreds of others about disability history--the role of people with disabilities in history, perhaps I should say. He imparted a sense of shared culture and pride, and a sort of vision for the future. He was also a pal, a wit, a provocateur. He coached me through my first op-ed submissions and media appearances. And so much more.

Forgive me if I'm rambling. I'm still in shock.

For more about Paul, see the links at
http://lflegal.com/2010/08/paul-longmore

http://notdeadyetnewscommentary.blogspot.com/2010/08/tremendous-loss-paul-longmore-has-died.html

http://www.facebook.com/profile.php?id=693073084

I'm sure that if not for Paul I would have never been able to face let alone articulate the complex issues that characterized my life. Here, then, is a new installment of what Paul has wrought...

***

I'm always required to articulate my wishes and needs, can't just act on them. I'm forced to plan ahead. And I internalize this self-discipline. Impulsiveness is drained out of me! Without realizing, I come to depend on precedent—whatever worked before should work again—because I can't trust in winging it.


Later in the school year, one of my extra special friends invites me to her apartment to play. A smart, petite girl with long, thick black hair, Joanie lives only a few blocks away. Her mom comes to escort us. Which means she's going to push my wheelchair on the sidewalk—but first, down the school steps. Joanie's mom doesn't look physically strong, yet I bravely give her instructions. I can feel her hands shake as she clutches the handlebars of my wheelchair. One step at a time. We get almost all the way down without incident ... until she slips. I fly out of her hands and bound down the hard marble stairway—k'bump-k'bump!—to hit the bottom. I'm facedown, my chin on the lowest step, my wheelchair on top of me.


Mr. Martinez, the school's muscular and jovial maintenance man, is there, leaning over me, trying to pull me up. It's hard to talk with my chin pressed against the bottom step, but I know words are my strongest asset and best defense. Mom has drilled that into me over the years. I manage to say, "Open the seat belt first."


The only Walden staffer not called by his first name, oddly enough, Mr. Martinez bends down to make sure he understands. I can smell his sweet cologne, and I'm grateful. It's important he understand me. If he pulls the wheelchair up without unbuckling me first, I'll twist an ankle. He reaches under me to unfasten the belt. Released from the chair, I slide into a slightly more comfortable position on the floor. He is then able to lift me bodily—like a groom carrying his bride over the threshold—without twisting my ankle, and carry me up the steps to a sofa in the school office. Someone else brings my chair. The school nurse looks me over, calls Mom. Joanie and her mom stay near. I'm in no pain, but the wait for Mom seems very long.


Finally she's there. The play date is canceled. No other harm done. You become used to wheelchair accidents.


The next time Joanie and I get together it's at my apartment.

[For that naughty story, tune in again in a few days...]

Part 11 of "Miracle Boy”

On a half-cloudy November afternoon a girl named Carrie crawls across a classroom tabletop toward me, grinning. Bony and high strung, with long black hair she's always tucking behind her ears, one of many ticks, she's a friend but not a member of my Club. I call my group of best friends a Club, a restricted club, and though it has no benefits other than wheelchair-pushing prerogatives, the other kids seem to like being members. "Hi, Ben!"


"Carrie … what're you doing on the table?"

She inches closer. At the edge of the table she says "hi" again. Then she's practically in my lap. She reaches out and begins unbuttoning my navy-blue corduroys and unzipping my fly—

"Carrie!" Judy yells from across the room. Carrie's white-hot face falls like a startled soufflé as she looks up, unhands my pants. Judy marches over. "Back to your seat!"

Silently, Carrie crawls away. Judy steps closer and closes my pants. No more is said about the incident, and I laugh. Later, when Mom comes to pick me up, Judy tells her what happened. They talk in soft voices. On the walk home Mom tells me to let her and Judy know if anything like this occurs again. Some children have a hard time accepting my handicap, she says. That's not so, I say, not in this case. Mom says she understands it was just play, but still. I say okay, but I'm lying. I don't want to tell Mom or Judy or anyone else if it happens again. If I commented on all the odd things people do around me, I'd never shut up.

For instance, I never tell about Quentin. He's a long-haired, pale-skinned, rangy boy with a taut, satanic grin who frightens me. It's not merely his appearance. It's something about the way he looks at me, or doesn't, with his fanatical eyes. I try ignoring him. He's one of the reasons I surround myself with friends, as a defense. Quentin pays us no mind, and at first I congratulate myself on a strategic victory. All goes smoothly, but only for a time.

***

Part 5 of "Miracle Boy"

Went to the NPR West studio today to record a new commentary. Several folks there greeted me with, "Welcome back!" A nice feeling.

Listen for the piece during Morning Edition on July 26.

Meanwhile, here's the next installment of "Miracle Boy." It's short, so I'm posting it early...

FDR: a model for so many of us

To be sure, Mom and Dad don't exactly realize they're subscribing to the FDR model. They want me to remember I have nothing to fear but fear itself. Yet that afternoon, as Mom lectures me about speaking up and taking care of myself, in my mind I'm still falling down the garage ramp and smacking up against a stark reality: I'm undeniably, unavoidably vulnerable, no matter how much spunk I may possess. My new green wheelchair—a badge of growing up, of going to kindergarten, of greater independence—brings a host of unforeseen risks and burdens. Everything is double-edged! There can be nothing good without something bad! I'm not yet four, but I might as well be 40.



It's not right to call this premature self-awareness a kind of wisdom, though, because it's simply practical knowledge learned the hard way, an attitude derived from struggle. It's nothing to be proud of. The wisdom, if there is any, would come from knowing when to use this knowledge of vulnerability and when not to be dragged down by it. And that I have yet to learn.


Once iced, my purple finger continues to throb. It throbs for an eternity. I shy away from using my right hand to draw with. I blame myself a little for the accident. I could have remembered the seat belt.


For a month afterward Mom asks me to check my seat belt, but then she too begins to forget. She does not wallow. I want to get past it even more than she does.


So I learn to bury, or re-bury, my frustrations and fears. I will not let bumps and barriers make me fearful or reticent. Rather, I remind myself that hardships build character. They make me a stronger person.


It's a guise I can maintain for only so long.


Perhaps even then I do have an inkling about my life ahead: I can already sense it will be split along two divergent paths—the normal expectations of a son of New York Jewish liberal educated intelligent parents to go out in the world, advance, and take charge of his own actions and fate, and the dangerous, ineluctable fragility of the hopelessly, severely disabled.


To live with this dichotomy between upwardly mobile overachiever and delicate flower with what today is foolishly called "special needs"—to live with myself—I'll have to learn to navigate between or, better yet, balance, redefine and integrate these two discrepant identities and potential destinies.


It's a struggle that continues for the rest of my life.


###

Part 1 of "Miracle Boy”: Introduction

I was training my latest personal-care attendant in how to wash me ("first the soap . . . "), dress me ("slide one foot into the jeans leg, then the other . . . ") and lift me into my motorized wheelchair. He was a UCLA student with no medical background, which is just the way I like it. I do not want to be called "the patient."


Nevertheless, while tying my shoes he asked a question that was dangerously close to my tolerance boundary: "How do you stay so positive?"


I feel like I've been called "inspirational" more times than Jesus, Muhammad and Moses combined, but something about his question felt different. My earnest young employee was not commenting about something over which I had no control—the fact that I'd lived all of my then-42 years with a severe neuromuscular condition—but about my attitude, an attitude I had adopted and nurtured, a doggedly honed personality trait, a survival strategy, perhaps. He might have asked the same question if I didn't have a disability.


Usually the word "inspirational" was followed by, "You should write a book about your life. It would be so inspirational for so many people!" No thanks. In fairness, this may be prompted partly by the fact that I write for a living. I'm a contributing editor for Institutional Investor and, until its recent demise, Dealmaker and other magazines for the past 20 years. But please! Let survivors of abuse, cancer or war coax tears from readers' eyes. Not me.


To his credit, my new attendant did not in fact resort to the book spiel. What he did was get me talking, and that's when I realized it. I had reached a level of maturity from where I could look back at my varied experiences and not feel embarrassed. A book about my life would indeed be compelling and gripping. Especially considering the many changes in medicine, technology and disability rights I'd seen.


After all, I was the “miracle” who wasn't supposed to live past 10. Born with a rare form of a rare disease, spinal muscular dystrophy, I grew up in New York City (Dad was editor-in-chief of GQ, Mom a former television producer) and attended regular private schools before there were any laws protecting my right to do so. (Some cities even barred the disabled from appearing in public!) From one of my earliest memories—falling out of my wheelchair into a dark, smelly garage—to learning to use my brain and verbal skills to get what I needed, I always attracted friends and, in contrast to common lore, rarely felt taunted by school bullies. At 10, though, after my parents' divorce, I wrestled with divided loyalties—Dad took better care of me physically, while Mom was more supportive emotionally.


Eight years later I became one of Harvard's first severely disabled wheelchair-using freshmen—if not the first. Then Mom got sick. The next summer she was dead.


After college, I shacked up with my nondisabled, non-Jewish girlfriend and together we headed to L.A., where we got married and, after more than four stressful years in the infertility maze, had two terrific daughters.


It never occurred to me that someone like me wasn't supposed to do all these things. How indeed had I managed? What kept me going?
      [More in two days.]

"Miracle Boy" Grows Up" (an excerpt & commentary)

A long story in the New York Times today (July 4, 2010) about an Iraqi war soldier who became disabled in combat and is learning to reinvent his life. Okay, that's an oversimplification of a complex, touching article. But at some level it is without a doubt a disability tale--and that's where I come in.

Usually, stories of heroic overcomers turn my stomach. First of all, they are clichés. Also, sometimes it seems that anyone who actually lives a life with a disability is treated as heroic, inspirational, miraculous, and so forth. Perhaps we are, but I like to think that's more because of coping with a world that isn't made for us, doesn't get us or welcome us. We're not amazing simply because of having a disability.

There IS a difference.

Still, injured veterans' stories are pretty incredible. (Injured anyone's, for that matter.) The fact is, disabled veterans have always been a huge, if unintentional, impetus to disability rights. Prosthetics and even motorized wheelchairs were invented specifically in reaction to the sudden swell in the disability population caused by wars.

All of which is a lead-in to this excerpt from my book-in-progress:

    Mr. Snuffles, as I secretly call him, has a musty workshop on the second floor of a walk-up on the Upper East Side. Dad has to carry me bodily up the stairs.


     Once there, Dad lies me down on a vinyl-topped examination table, where I have nothing to do but stare at an assortment of fliers posted on the wall. "Four out of five dentists recommend sugarless gum for their patients who chew gum" one of the signs informs me.


     I wonder what it's doing in a prosthetics and orthotics facility!


     Decades later I learn that the earliest recorded example of a prosthesis is an iron leg made for one Queen Vishpla, an Indian warrior in 3000 BC, who was amputated in battle yet returned to fight again with her new hardware, according to an ancient Sanskrit text.


    Why isn't something like that, emboldening info about the historical importance of assistive technology, posted here?


     … I have a new motorized wheelchair—my first—which is too heavy to get up the school steps, but at home I love to zoom around, especially fun in my building's labyrinthine basement.


     Gary and I play there after school, staying clear of the housekeepers who do laundry and the maintenance workers who have an office down there as we explore the myriad dark passages and commodious storage lockers, pretending we're on a mystery investigation. It's taken me a while to get an electric wheelchair. They've been mass-produced since 1956, when Everest and Jennings rolled the first one out of its California factories, improving upon designs putatively sketched by George Westinghouse in the late-nineteenth century and British engineers during the First World War, then perfected in the early 50s by a Canadian inventor named George Klein, primarily for World War II vets—demonstrating again the connection between war and disability progress.


     The first E & J power chairs were notoriously slow, but in the early-70s they become the vehicle of choice for active quadriplegics—brandished by Ed Roberts and his trendsetting crew in Berkeley. The only reason I didn't have one before is Dr. Spiro, my neurologist, feared it'd make me lazy, make me not use my arms and build arm strength. Now we know I can't build up my muscles, so he finally wrote the prescription.


     The first day I get the motorized wheelchair home I chase Alec around our apartment. I'm not a good driver yet and keep crashing, leaving tell-tale gray scratches on the white walls.

(More later.)