Miracle Boy Grows Up (11 page)

For her, seeing me grow up and managing a degree of independence is a relief and a joy, she says. As if she doesn’t want to leave this world worrying about me.

I tell her the first time I smoke cigarettes with friends in the Park. I know she won’t get mad, and in fact I’m almost showing off, like smoking with the guys is a badge of the acceptance I’ve achieved. Sure enough, she likes it; she’s glad I have enough autonomy to be a little naughty. Fitting in and being well socialized have always been important to her.

It’s very nice that Mother and I now have this kind of understanding and honesty between us. I’m glad I didn’t “divorce” her and move to Stamford. Dr. Friend, the shrink, knew what he was talking about!

When I at last take the SAT, Mother makes sure a proctor goes over my answer bubbles. I’m able to handle a regular pencil (or lightweight pen) and paper pretty well, but she’s worries I don’t press hard enough to make my answers register.

Soon all such standardized tests will be required to make accommodations like that for students like me. But at the time, we have to take accommodations into our own hands.

1979-1980

“I’m not what you’d call a brilliant thinker—such results as I get are usually the fruits of patience, industry, and unimaginative plugging, helped out now and then, maybe, by a little luck—but I do have my flashes of intelligence.”

—Dashiell Hammett, “Zigzags of Treachery,”
Detective Stories

“If you apply here,” the heavyset man in a boxy charcoal-gray suit is telling me between slow, heaving breaths, “you’ll get in.”

Dappled sun seeps through the cream-colored curtains behind him. It’s early morning. Still. Barely a heartbeat has passed since I was wheeled into this musty office — Dean What’s-His-Name’s words catch me off-guard. I look to his semi-serious, muffin expression for a clue as to how to react. Was it a prediction, a joke, or a promise? My eyes dart away, down at my still fingers folded haphazardly in my blue-jeaned lap. Semi-casual in my attire: sport coat, good shirt, good jeans. Exuding self-confidence. Iconoclastic. I imagine my listless hands gesturing dramatically. Pointing. Clapping.

Did he actually say . . . ? Warm excitement rises within me.

“Oh?”

“Yes. You hear me? How’s that make you feel? About what I said. Surprised?”

Again, I’m speechless. The thing is, I haven’t had a chance to utter Word One of my carefully crafted, privately rehearsed spiel! I haven’t told him how great I am, or why I want to go to Amherst (not that I’m absolutely certain I do) . . . what I’d bring to the place! I haven’t unleashed any of my knock-his-socks-off questions!

I’m a little cloudy-headed. Last night, after five hours’ drive in a blinding downpour, with Kenny at the wheel of the old, unreliable, Checker behemoth, we’d spent the night at a motel. Just Kenny and I. It’s the first time I’ve traveled so far from home without parents, and I’m still proud-excited-scared.

Mother had said I was responsible for finding the motel and getting to my appointment on time. She wasn’t sure Kenny had ever checked into a motel before! As if people from Trinidad, by way of Brooklyn, don’t know the ways of the world.
It’s your responsibility. You have to be alert and speak up
. Just like with my seat belt all those years ago Once checked in, though it was nearly ten PM, I dutifully phoned home to announce I was still alive, then watched an hour of crappy TV—the sort I knew Mother wouldn’t approve of, not that there was much TV she
did
like—and slept with the contentment of one who knows he’s done a good job. Kenny was in the next bed, ready to respond if I called out to roll over. But I didn’t.

In the morning, directing Kenny to dress me to casual perfection, I knew I’d never have had a chance at this kind of freedom if Dad had come along, as originally planned. In this wonderful (assisted) self-determination, this semi-autonomy, I saw my adult future, and I liked it.

And now, here in Amherst’s rarefied admissions office, I’m tongue-tied. “I assume”—I venture—”I assume I’d be the only handicapped student here?”

“Yes. Quite frankly, we don’t have a lot of experience with people like you, people with your particular affliction.”

Not crazy about the word “affliction,” but I soldier on. “I’m used to being a kind of pioneer.”

Zing!
It’s one of my rehearsed taglines, and I more-or-less led him to it! No pitiful handicapped-afflicted boy, me; I’m a
pioneer
, boldly going where no man has gone before!

I tentatively release my remaining arsenal, climaxing with the four killer questions guaranteed to get you accepted, according to a friend of Mother’s— notwithstanding that my acceptance might no longer be in doubt.

“I’ve always gone to progressive schools”—my embellishment—“so I wonder, what is Amherst’s
educational philosophy?”

The Dean clasps his hands behind his close-cropped head and sighs audibly. “Good question,” he says and then mutters something about education and individuality and maturation and citizenship, blah blah blah.

“Well,” I follow up, “what would you say is the
political climate
at Amherst? Left, right, or center?”

He pauses, leans forward thoughtfully. “You mean among the administration, faculty, or students?”

My insides freeze. In my small high school, the faculty
is
the administration. “All of the above.”

I have no idea what his answer is. I’m not listening, except for the next silence, which cues question number three

“Who really
runs
the college—the students, the faculty, or”—I add abruptly—”the administration? Who has
the power?”

The Dean’s answer comes slowly, whatever it is. Doesn’t matter. I’m busy trying to remember the fourth question. Damn! Well, good enough.

Yet another question lingers long after I leave his office and Kenny drives me the long way home to Central Park West: Is Amherst honestly pre-accepting me simply because I’m handicapped?

***

W
hat I don’t know is, at about the same time, a disabled person named Davis is suing a school called Southeastern Community College for failure to provide equal access. The case goes before the US Supreme Court, which sides with the plaintiff and establishes a precedent for requiring “reasonable modifications.”

Simultaneously, more or less, Congress establishes federal funding for independent-living programs, like the one in Berkeley, and creates the National Council of the Handicapped, which is charged with overseeing accessibility in public education.

Also in the late 1970s, the Disability Rights Education and Defense Fund is established, in Berkeley (where else?). It still leads the fight today.

Meanwhile, at Denver’s Atlantis Community—an independent-living center modeled on Berkeley’s—emboldened activists launch demonstrations against the local transit authority for failure to install wheelchair lifts on public buses. Guys and gals in wheelchairs actually sit in the middle of the street blocking buses! Their fire spreads to other cities and, by the early ’80s, will spark a national grassroots organization called ADAPT, or American Disabled for Accessible Public Transit. A decade later, most city buses will have wheelchair lifts and wheelchair-lock-down apparatuses. To keep the momentum going, though, ADAPT will morph into a network dedicated to fighting the institutionalization of people with disabilities in favor of in-home long-term care. Now standing for American Disabled for Attendant Programs Today, ADAPT remains active.

And in 1978, my junior year of high school, Harper & Row publishes Professor Frank Bowe’s
Handicapping America: Barriers to Disabled People
. Bowe, one of the leaders in the protests that led to implementation of Section 504 of the Rehab Act, is blind. His exploration of the policies and attitudes that deny people with disabilities full equality becomes a kind of
Souls of Black Folk
for the fledgling disability-rights movement. In 2007, when Bowe will die at age sixty, he’ll be a tenured professor of disability studies at Hofstra University—an academic discipline that might not exist without his seminal work.

But at sixteen, I’m stupefyingly unaware and dismissive of these and most other sociopolitical events. I might have a vague sense that there are activists somewhere in the cosmos agitating for better treatment for people “like me,” but what’s that got to do with me personally? Besides, I have bigger things on my mind. Thinking about college has me as self-involved as a bride.

***

“You’re kidding?” is Alec’s reaction, on the phone from Harvard, to my news about Amherst. He would’ve been well suited to shtetl life, I think for the first of what will become dozens of times. Anything new, different, or unexpected is inconceivable and suspect.

Yet I’m suspicious too. Being in a wheelchair has always made good things happen. I’ve been hustled to the front of long movie lines, ushered through backstage doors to meet Broadway stars, and even given free toys and snacks. People feel sorry for me. I know I should say
No
—
don’t treat me like a delicate child!
But I prefer to think of it as being a VIP.

Only Mother asks if I
want
to go to Amherst. I’m honestly not sure.

Dad’s the one who got the ball rolling, making the first calls to the schools on my list. He asks, innocently enough,
if
they can take me—almost apologetic in his approach. Amherst’s answer was to invite me for an interview. The rest feign a laissez-faire openness, many offering lawsuit-fearing bullshit reassurances. Except one: Duke University. “It’ll be damn difficult,” Dad quotes back to me. Needless to say, I don’t apply there.

Dad claims he doesn’t care where I go—then jokes, of Amherst, “even if it’s one of Massachusetts’
lesser
institutions.” In our family, humor covers a lot of unpleasantness.

I know Dad is a proud Harvard man. His time there, in the 1940s, was liberating and stimulating, after his anti-intellectual boyhood in Ohio. But I’m having a hard time seeing it that way.

Over the next few months, Kenny and I dutifully visit Harvard, Yale, and Princeton—practically the only colleges that exist on Dad’s map. At Harvard we spend the night in a Lowell House suite occupied by friends of Alec’s. It’s up a few steps, but Alec’s own room is up a couple of flights. I remember brushing my hair in the morning, with Kenny holding my arm to reach, and grimacing at my blow-dried mane’s frizziness. A bad omen, it seems.

The gloomy day is filled with bad omens. I detest the bumpy cobblestone and brick pathways, which make my wheelchair feel like it has a flat tire. I also don’t like eating at large group tables in the echoey dining halls. You see, the way I feed myself—hunched forward just so, my left hand supporting my right arm, with which I raise a lightweight fork or spoon to my mouth in slow steps, often walking my fingers up my chest—takes time and concentration. Plus I have to swallow carefully, to be sure nothing gets stuck in my throat or slides down to my lungs. This is one of the more delightful side effects of my spinal muscular atrophy!

As the weeks wear on, I develop an increasingly deep, sickening doubt about whether I can survive among these dreary colonial digs and seedy, tweedy Old World traditions. The expectation of becoming an Ivy League up-and-comer battles the frightening reality of my physical limitations and sense of vulnerability. Which is why my mood is brightened when Mother inadvertently suggests a solution of sorts. “What about Stanford and Berkeley?”

Perhaps she was reading my mind, but contrary teenager that I am, I scoff. “Do you think I can’t handle the Ivy League?”

“Not at all. The weather’s better in California.
I’d
give them a look.”

A few evenings later her “gentleman friend” Bob is over for dinner. He asks about my college choices, including the California schools, and weighs in with, “Avoid the snow.” Are all adults hypocrites? Bob is another Harvard man. I’m surrounded by them!

“I’m not going for a vacation,” I say, insulted.
You think I can’t handle snow?

He absorbs my tone and takes a pensive swallow of his bourbon and water. “Springtime in Cambridge
is
lovely.”

I tell him California seems far away, which actually was Dad’s reaction. Bob pooh-poohs.

“It’s only a five-hour flight versus a five-hour car or train ride.”

Good point, I think. Still, isn’t he missing something? What if something should happen to me three-thousand miles from my family?

***

A
month later Dad takes me to California. He’s set up a meeting with a Stanford graduate student who uses a wheelchair. The slight, balding man has a small apartment off campus. It has remote-controlled lights and doors. As if that weren’t enough, he tells me the BART subway system is wheelchair accessible. I’ve pretty much lived my life assuming subways were off-limits unless I was with someone strong enough to hoist my chair up and down the stairs, so I’m intrigued as by a magic trick. Still, I’m self-conscious meeting this guy and fail to appreciate the research Dad has done.