Miracle Boy Grows Up (16 page)

One of the last things Alec said to her was a lie, he tells me later. He was late with his application for a summer internship and didn’t want Mom to know. So he said he’d done it when he hadn’t.

Later, one sentence from her funeral sticks in my brain. “This was supposed to be a wedding,” says Bob, “but God had something else in mind.”

1982-1983

“If you have some daily anguish from some cause that’s not really your fault—a rotten family, bad health, nowhere looks, serious money problems, nobody to help you, minority background (I don’t have that—a WASP—but I had other things), rejoice! These things are your fuel!”

—Helen Gurley Brown, draft of
Having It All
, noted in
The Late Show

T
he short story I write is called “Always Fighting.” It describes four events in a young man’s life that should’ve gone more easily. The first is a childhood sunburn, which turns a pleasant day at the beach into a trauma (true story). Then comes an irreparable fight with a close friend in college (fiction), followed by the death of the young man’s mother (true). In the final scene, he’s lying in bed on a hot, humid summer night, unable to sleep. The air conditioner is blowing too cold. If he gets up to adjust it, he knows he’ll quickly become too hot again. Those sad memories—the shadows of betrayal—rush through his mind as he reflects that life is sometimes monumentally unfair.

It takes all summer to type and re-type the twelve pages—each word (each letter, considering the way I type) painstakingly considered. Yet I cannot explain why in heck he doesn’t just get up and fetch a blanket or fiddle with the thermostat. In short, I can’t explain his paralysis. I say he’s too exhausted and frustrated to move. But the truth is I don’t dare make him handicapped like me.

Nevertheless, the story gains me entrée to a closed creative writing seminar at Harvard—one of the few classes I take as a sophomore that I actually enjoy— though I know deep inside that I haven’t found my “voice,” that thing everyone says you’re supposed to have. For me, every phrase is measured by the yardstick of John Updike.

Emulating Updike and his ilk is nothing more than an attempt to appease Mom’s ghost and win Dad’s approval. And as far as I know at that point, authors in this league don’t write about disabilities—except perhaps symbolically, as precursors to death and metaphors for emotional or societal damage. Tiny Tim. The Hunchback of Notre Dame. There are victims galore—cancer sufferers, blind or limping young women ripe for abuse—and demented, deformed villains such as hunchbacked Richard III or paralyzed Mrs. Clennam from
Little Dorrit
. I don’t see myself in them.

To me, the best are the inspirational heroes—plucky overachievers who overcome impossible hurdles (like FDR, Chief Ironside, or the blind superhero Daredevil, say). But is there no place in educated society for someone like me—
unless
I’m an overachiever?

Where is the disabled Richard Wright or Ralph Ellison? Where is the authentic disability experience?

***

A
ctually, it’s cropping up everywhere in various ways I just don’t know about yet. The very week I finish my story, the obituary for Christy Brown appears in newspapers, on a page I never read (now the obits are one of the first sections I look at). If I had noticed, I might’ve remembered Mom’s description of Brown a few years ago as the Irishman who painted with one foot.

Earlier that same week—on Labor Day, 1981—the
New York Times
ran an op-ed by Evan J. Kemp Jr.—a prominent Washington, DC, attorney with spinal muscular atrophy (a version of my diagnosis). He headed an advocacy group called the Disability Rights Center and, in his op-ed, calls to task the Jerry Lewis-Muscular Dystrophy Association telethon.

“The very human desire for cures . . . can never justify a television show that reinforces a stigma against disabled people. These prejudices create stereotypes that offend our self-respect, harm our efforts to live independent lives, and segregate us from the mainstream of society.”

Kemp’s words are a battle cry! A call to arms! If only I’d been paying attention.

I’ll read about the no-more-pity campaign later, in The
Disability Rag
. I’ll even go on to publish a similar-themed essay in the
Los Angeles Times
a decade later. And toward the end of his too-short life, Kemp will launch a publishing enterprise that will become my first regular (part-time) employer.

In fact, the early-’80s are rife with incipient disability consciousness. Think tanks such as Ed Roberts’ World Institute on Disability, in Oakland, are launched. The UN, not satisfied with the success of its International Year of Disabled Persons, dubs 1983 to 1992 the International Decade of Disabled Persons. At the same time, telephones for people with hearing impairments (TTYs and TDDs) become legally required in many public places. Sears becomes the first big retailer to sell decoders for closed captioning on TV, now a required technology in every television. Even Wheaties gets in on the act; in 1984, it features a wheelchair racer on its cereal boxes!

***

P
erhaps if I’d been more in touch with this wave—if I’d believed it was going to build and last—I wouldn’t have been so miserable at Harvard. On the other hand, my ballooning, suffocating sense of isolation had other, more immediate causes as well.

A month after Mom died, Dad began urging Alec and me to sell the apartment we’d just inherited—our childhood home on Central Park West.

“Why do two boys in college need a six-room apartment at one of New York’s premier addresses?” he asked. Well, growled. “The maintenance is a thousand a month, and it needs a lot more than that to keep it from falling apart!”

This weighs on me. Dad’s wincing at the financial squeeze of having two sons at Harvard, plus my attendants, is reasonable and understandable . . . and yet, to Alec and me, this land grab rings disingenuous and underhanded. Mom, who grew up in poverty, never trusted Dad about money. We remember their divorce-era haggling. We’ve known Dad to plead poverty—to complain when the price of a bagel went up to a quarter!—and yet not cut back on vacations, restaurants, or theater tickets.

Besides, Mom told us it would be ours. If she survived, she said, she would marry Bob and live with him. The Beresford apartment would be ours.

But it wasn’t hers to give. Though he moved out nearly a decade ago, Dad still owned half. In fact, under the laws of joint ownership, he could now claim the whole property for himself! He only wants his half, though—and he wants us to sell ours.

It gets ugly. Lawyers become involved. We hold him off for two years. The summer after my junior year the apartment will finally be sold.

And Dad and Barbara will promptly go out and buy a vacation home on Nantucket.

***

D
ad also seeks financial aid from the government. For a time, I receive marginal assistance from Connecticut’s vocational rehabilitation department, an agency set up to fund needed equipment and services to get disabled people gainfully employed. It’s difficult, however, to justify a liberal-arts education (especially an out-of-state one) as vocationally practical, so that coffer soon runs dry.

And I begin receiving SSI—the federal Supplemental Security Income program enacted nine years earlier, in 1972, for the indigent disabled and elderly. I temporarily collect about three hundred bucks a month.

In the news, Reagan is still attempting to gut both Section 504 of the Rehabilitation Act of 1973, which is the basis of my claim on accessibility at Harvard, and the Education for All Handicapped Children Act of 1975. Disability activists and others manage to generate an estimated forty-thousand opposition letters; in time the Administration relents.

So Reagan next cracks down on federal-benefits “abusers.” It’s part of a political trade-off. Congress is upending employment disincentives embedded in many assistance programs, enabling folks to work part-time while continuing to receive partial benefits. At the same time, a bunch of other needy people are summarily cut off. There are reports of suicides as a result.

I’m well into my sophomore year when I receive a letter canceling my SSI and summoning me to my local Social Security office. The drab low-rise building where the Harvard van service (there are two vehicles now; I had to beg to be taken off-campus) delivers me feels, from the inside, almost hermetically sealed. By and by, the pleasant crew-cutted man who welcomes me—who might in later years have been the model for Dilbert—informs me matter-of-factly that I no longer qualify for SSI and probably never did. I’m not poor enough for benefits. Plus I have to pay back what I’ve already received!

I’m in no serious danger from this, but I don’t want to be a patsy either. Still, there’s nothing I can do. I’m one of thousands—perhaps hundreds of thousands—to fall on Reagan’s chopping block.

Oddly enough, I’m almost simultaneously notified I’ll soon be receiving something called Social Security Disability Insurance Survivors Benefits, which are drawn on Mom’s Social Security account. Again, about three-hundred dollars a month. Welcome to the vertiginous merry-go-round of government-sponsored confusion!

In all, it’s a zero-sum gain. The amount I owe SSI is deducted incrementally from my new SSDISB payments.

***

T
hen comes the curious case of Baby Doe—a Bloomington, Indiana, infant born with Down syndrome
and
a blocked esophagus. Surgeons say they can fix the esophagus, but the parents refuse because, as
Time
magazine reports in 1983, “nothing could be done to prevent retardation.” (This is around the time Garbage Pail Kids become a popular and much-maligned toy.)

In the end, Baby Doe is sadly allowed to starve to death. “The parents’ right to this choice was twice challenged in the courts by the hospital and twice upheld,” the
Time
article continues. But public outcry will grow so great that in 1984 Reagan will sign the Baby Doe Law to protect disabled newborns.

I, oblivious, get Baby Doe mixed up with Baby Doc, the soon-to-be-deposed president of Haiti.

The Baby Doe incident breeds a strange symbiosis between progressive disability-rights activists and reactionary conservative types. In time, both camps will oppose using prenatal screening—for Down syndrome and other genetic “defects” (like mine)—to justify selective abortions. Later still, when Jack Kevorkian offers folks with multiple sclerosis an easy way out, the disparate viewpoints will again sound as one.

If I pay any attention at all, I’m left confused. My tendency is to try to understand all sides. I see myself as a bridge maker, not an advocate. I will come to grasp the idea that, for many disability-rights activists, these issues have nothing to do with the Sanctity of Life in a religious sense. Rather, what’s at stake for them is equal protection under the law for folks deemed hopeless or useless or terminal, simply because of disabling conditions and other “abnormalities.”

***

F
eeling unmoored, lost at sea, I grow increasingly but secretly despondent. I lean on my reputation as a cheerful optimist like on a crutch, though this smacks more and more of wishful thinking, a desire to return to the security of the past.

Harvard is a bad place to be sad. There’s little comfort to be squeezed from its cold, hard, ancient bricks and hyper-competitive population. Making matters worse—sealing my fate of loneliness—is the administration’s maddening breach of promise.

At the end of freshman year, I’d learned I still could not have regular roommates even upon moving into the upper-class Houses. The Deans had thought they could accommodate my urgent request, even encouraging me to choose from among a short list of options—primarily, a small rooming group in Currier House, off the old Radcliffe quad (roughly equivalent to campus Siberia), or a big suite in Mather House usually reserved for seniors. I toured both and chose Mather. Then the Deans reneged.

They alleged Mather hadn’t been tested for safe, adequate accessibility. (Not that Quincy House, where they ultimately dumped me, was exactly up to code.) Second—reminiscent of the previous year’s excuse—my taking a senior suite as a sophomore just wouldn’t be fair to the other students.

In retrospect, it was blatant segregation (separate
isn’t
equal)! But I didn’t raise much of a fuss. I didn’t want to be unreasonable. Becoming accessible was a total transmogrification for Harvard’s hoary old campus.

The
Harvard Crimson
got wind of the story:

His commitment to living a full, normal life led Mattlin to select Mather as his housing choice this spring, . . . primarily because it has only large suites, where he would have roommates—potential “buddies” who could relieve some of the “great strain” of living only with an attendant on whom he relies heavily.

. . . Although Mattlin will reluctantly take his belongings to a House with limited wheelchair accessibility and no suites for the disabled, he will undoubtedly arrive at Quincy . . . with the same outgoing attitude and distinct sense of humor that helped him through high school and his freshman year at Harvard. “It’ll be a really tight squeeze,” Mattlin says of the wheelchair route to the Quincy House dining hall. “There’s the smell of garbage, and you have to go through the kitchen,” he adds, accurately but humorously.