by Ben Mattlin
Ena is succeeded by Elizabeth, from Guyana, who hates winter. “Oh Behn! I’s col’ ou’side. So col’ col’ col’,” I mimic to Alec’s paroxysms of wheezy laughter.
It’s terrible, in retrospect. I wouldn’t want people making fun of me for how I look or sound different from others. But in our prepubescence, the humor flows freely and is a welcome release. It works off the stress of having these new people around.
Relying on hired helpers is a difficult transformation, but it’ll prove key to my achieving a greater degree of independence. 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 realizes the hostility behind it.
In the end, I decide the divorce isn’t a tragic turn but a fortuitous one, because it sets me free. Yet the ghosts of my parents’ breakup—the encroaching sense of familial bonds as stifling, strangling—will haunt me.
***
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 will 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. Nineteen years earlier, in 1953, at the age of fourteen, Roberts contracted polio and found himself unable to move, in a hospital bed, using an iron lung (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 fourteen 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 fifty-four 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 those kids, 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. Maybe my parents’ split-up is a contributing factor.
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 propping an ineffective pillow against a molten hardening within.
***
A new medical problem further sours the mix. My scoliosis worsens, and my atrophying muscles become less effective at holding my spine in anything resembling a straight line. I have to start wearing an uncomfortable back brace—a tailor-made contraption of hard metal and pliant, aromatic leather and other industrial materials. It sticks up around my left shoulder—which as I said is lower than the right one, that being the nut of the problem—making it partially visible under my shirt. It also pinches me painfully under the arm and on one side of my waist, turning patches of skin red and raw.
The brace maker, a tall Geppetto of a man who wears a dust-colored apron and has a graying, bushy mustache, explains the chafing is caused by the brace’s riding up in the course of the day. At least I think that’s what he says. He mumbles with a European accent of indeterminate origin.
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 surveyed 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 will 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 tex
t.
Why isn’t something like that—emboldening info about the historical importance of assistive technology—posted here? I’d much prefer a handicapped warrior to the clichéd dental-hygiene tidbit whose only relevance is a pseudo-medical connection!
Then Mr. Snuffles returns with my brace, to which he’s affixed two straps. “Zey go here, you shee? Shniff...,” he chatters as he snaps the new straps around either side of my groin.
Within a few days my crotch becomes redder and rawer than my waist and armpit ever did. A few weeks later, my parents agree to remove the straps. Another torture device the medical geniuses think up gets the heave-ho, though of course I have to keep wearing the brace, pinchy and irritating as it is.
I never complain about the brace at school. Doing so might incur pity. I pretend it isn’t there, but I’m becoming ineluctably resentful of other people’s freedom of movement.
In sixth grade, when I turn eleven, Quentin threatens to push my chair down the stairs for no discernible reason. The long-haired boy who’s frightened me since first grade, he still has the beady eyes that never take me in whole. We’re alone in the hallway; I told my friend Adam to go ahead, not to be late for his class, because I’m confident someone else will come along for me. Quentin happens to be the first person who does.
“I could push you right down those steps, and you couldn’t stop me,” he says coolly, between heavy breaths. “No, really, nothing you could do, is there? If I wanted to. And I think I do—”
“You won’t,” I answer, though I believe he’s entirely capable of acting on his minatory words. “You know I’ll tell and you’ll be in deep shit.”
“I’ll say it was an accident.”
“I can make people believe me.”
“But you can’t stop me. You can’t do anything about it!”
He’s got me there. And the more he says it, the more my insides shake. Not my outsides. I won’t give him the satisfaction. “You’re not going to do it. It’d be stupid.”
It would be stupid. At best he’d get kicked out of school. If I got really hurt he could be put in jail. At least that’s the way I’m thinking. Can I convince him?
It becomes a staring contest. For strength, I think about Captain Kirk in “The Corbomite Maneuver.” It’s all about the bluff.
Then, just as abruptly as he appeared, Quentin turns and walks away, giggling under his breath. When he’s far enough I close my eyes and count to ten. I have enough time to calm down before a teacher shows up and pushes me to my classroom. I don’t tell her or anyone else. Don’t want to portray my fear and potential vulnerability, or incur Quentin’s retribution. Yet I feel good. I think of the Winston Churchill quote, one of many Dad cites on occasion: “Nothing in life is so exhilarating as to be shot at without result.”
All goes smoothly for a time. Then, a year later, when I’m twelve, I vent my frustrations on a good friend named Randy. Randy 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 law school. I actually like Mark better than the other supporting characters, so Randy has a position of honor. I don’t think of it as racial stereotyping. In fact, sometimes secretly I wish I were Black; the minority status resonates with me.
We play Ironside at school, and we play Ironside at my apartment. My building’s labyrinthine basement is a great place to let your imagination run wild. Plus, I have a new motorized wheelchair—my first. It’s too heavy to get up the school steps, but at home I love to zoom around. In my basement, Randy and I are always careful to stay 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; they will remain the way they are no matter what I do, so he finally wrote the prescription.
The first day I got the motorized wheelchair home I chased Alec all around the apartment. I wasn’t a good driver yet and kept crashing, leaving tell-tale gray scratches on the white walls.
One afternoon at school, Randy 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 PE. I’m excused and Randy 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. Randy 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. “Randy threw my stuff all over the floor,” I allege.
Randy 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 regret. 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 Randy 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 Randy 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. Randy’s an innocent victim of my need to flex my meager power, but I figure you have to be tough to survive in a sometimes unfriendly world.
Sure, I’m fat and wear glasses and a weird-looking back brace, and have a stupid green jug urinal sticking out of the bag on my back—but I still have inner strength. I may be easily pushed in my wheelchair, but I won’t be pushed around. So I willfully resolve to remain truculent . . . preemptively thick-skinned and bristly . . . until, in time, another discovery prompts a counter-pledge.
***
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. And why a man? 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.
