Miracle Boy Grows Up (6 page)

When Paula, then twenty-five, brings her beautiful, brown-haired baby to Cincinnati to show her parents, she’s greeted with faint half-smiles. “Don’t you want to hold
your first
grandson?”

Molly has been having pains she won’t talk about. With infant in tow, Paula has to drive her mother to the hospital; Sam won’t go near the germ-ridden place or spend the money for gas, and Molly never had a driver’s license.

She’s diagnosed with ovarian cancer. Oh Lord! One of the deadliest forms, says the doctor, and highly hereditary! Within months, Molly, barely fifty, is dead. An indelible foreshadowing haunts my mother the rest of her days.

When I’m born, two and a half years later—an adorable round head and sad blue eyes, with reed-thin arms and legs—I’m given the middle name Michael and Hebrew name
Melech
after Molly. “Benjamin” is after the obstetrician.

***

T
he windy, early-spring night they tell us they’re splitting, after an oddly solemn dinner, Alec and I fall silent, not comprehending. Then Alec is full of questions. Where will Dad go? Who will tell us stories now? Will we still get presents on birthdays?

I’m too confused for questions and stay quiet, absorbing. Let Alec do the spluttering. Until I start crying and Mom takes me on her lap. “Isn’t my life hard enough already?” I say.

My words steal my parents’ attention from Alec, with all his questions. Doubtless one of my goals. I’ve never spoken such words of self-pity before. To my mind, it’s a ploy. If I push that button, play that card, I can make them take back this idiotic separation idea. Perhaps I can hurt them in the bargain, just like they’re hurting us.

Mom holds me tighter. Dad wails and pats my curly head. And I see the power of words—of
my
words.

Whether or not I want to admit it, I also intend Mom and Dad to know that despite my well-adjusted cheerful exterior I do have frustrations even they can’t resolve. It’s not politically correct anymore to blame our bodies’ limitations for our woes. It’s better—more accurate and more constructive—to hold accountable the “oppressors”: the vast, unaccepting “majority culture” of the able-bodied. Yet at some basic level people with disabilities do struggle against their own bodies. That may seem self-evident, but many in the then-burgeoning disability-rights movement minimize these frustrations. They fail to acknowledge the obvious— that no amount of societal attitude adjustment or legislated access will ever solve all the difficulties. Some of the struggle is inborn, like it or not, and unsolvable.

Why any of this would make any difference to Mom and Dad’s marital situation, I can’t say. It surprises me, but they never forget my simple, sorrowful statement. It’s repeated back to me over the years. Besides the power of language, I learn that using other people’s sympathy can be a formidable tool. My secret weapon. That evening, the power frightens me a little, but I like the melty feeling as Mom rocks me on her lap and Dad pats me.

In the weeks and months afterward, I regret drawing attention to my pitifulness. So I revert to type—moderately cheerful, humorously cynical, heroic.

Outwardly, my parents’ separation hits Alec harder than me. He doesn’t take to Dad’s new lady friend, Barbara. The Sunday after his bar mitzvah, Alec throws a knock-down-drag-out tantrum when Dad decides he has to go to Barbara’s niece’s First Communion, on Long Island, instead of taking us to Adventureland. “But it’s my bar mitzvah weekend!” Alec keeps saying.

I go with Dad. I like Barbara. Alec stays home with Mom, who cancels her own plans for his sake.

As for Barbara, part of Alec’s problem might be that Dad introduced me to her first. Only about three weeks into the separation, on a sticky, sweltering Saturday in late June while Alec’s away at sleepaway camp, Dad takes me to Coney Island, and she’s there—tall and thin in a yellow T-shirt and blue-jeans skirt that shows her knees, with long straight brown hair that hangs down like drapes, unadorned, on either side of her head, no makeup, and round glasses. Very 1972. She’s twenty-six, a dozen years younger than Mom and nearly nineteen years younger than Dad.

Dad presents her coyly, “my friend from the office.” I like her right away, not realizing her part in all that’s going on.

Late in the afternoon I ask where she lives. Dad grins. “Can’t you guess? Isn’t it obvious?” It isn’t, to me. “With
me,”
he continues. “We’re sharing an apartment in Brooklyn.” I confess to a confused sensation of shock and betrayal. A joke? I wonder.

Do I resent what’s going on? Am I angry at Dad for upending our lives? I’m too young, too accepting, to question let alone take umbrage. Yet the fracturing—and simultaneous expansion—of my world, my sense of family, will have repercussions on my psyche, my feelings about commitment and flexibility, about liberty versus stability and comfort.

Gradually my disbelief turns to fascination, especially when I visit their brownstone. I’ve never been in a brownstone before. Dad has to take me up two flights of steps.

Sure, Barbara’s different from other adults Alec and I are used to. She’s a lapsed Catholic, for one thing. Which is not necessarily bad. Later that year we have our first real Christmas tree! (We’d had Santa before, but never a tree.)

For me, the biggest adjustment is I no longer have Dad to wash and dress me every morning. He only takes care of me on alternate weekends and holidays. Mom tries to fill in but soon finds the task too onerous. So my parents join forces to hire babysitter types—mostly scary-exotic women from the Islands, who talk different. To Alec and me, they are foreign invaders, and we’re shockingly intolerant, though I think primarily we’re just not happy about having new hired help of any kind. Evenings and weekends, when they’re gone, Alec does a hilarious imitation of fat Ena, who’s from Trinidad: he waddles around our apartment muttering about “De Ba-bull! De Ba-bull!”

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.

***

T
hat 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 text.

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!