Miracle Boy Grows Up by Ben Mattlin

Author:Ben Mattlin [Mattlin, Ben]
Language: eng
Format: epub
Tags: Biography & Autobiography, Civil Rights, Disability, Nonfiction, Personal Memoirs
ISBN: 9781616087319
Google: mNUrnwEACAAJ
Barnesnoble:
Publisher: Skyhorse Publishing
Published: 2012-05-15T04:00:00+00:00

CHAPTER EIGHT

IF NO ONE NOTICES A DISABILITY, DOES IT REALLY EXIST?

1984-1990

“For me, everything’s too much and nothing’s enough.”

—Mary Karr, Lit: A Memoir

Somewhere in Oklahoma, it’s raining big, loud drops on the echoey raised roof of my shit-brown Ford Econoline 150 cargo van. The van, which I’d bought near Boston with Mom’s life insurance money, isn’t pretty but it does the job. That is, it’s big enough to fit me in my motorized wheelchair, and pretty much all my worldly possessions. Our worldly possessions, I should say.

ML—who’s driving—and I are en route to Los Angeles. Her family is there. We’re switching coasts, switching family-roots, welding a new life together.

On the van’s intermittent radio we hear about Ronald Reagan’s reelection. The first presidential race in which I’m old enough to vote, and it’s a disappointment. We’d both cast absentee ballots for Mondale, back in Connecticut before our big departure. Somehow being a college-graduate-slash-adult means registering as a Democrat.

(The election also happens to be the first under a new Voting Accessibility for the Elderly and Handicapped law, the provisions of which I innocently circumvent by voting absentee.)

Our new life includes a wheelchair lift on the van, thanks to Connecticut’s fickle vocational rehab department, which had evaluated me as unable to drive, even with hand controls. That’s okay. A born and bred New Yorker, I don’t exactly yearn to take the wheel.

In my wheelchair, I’m strapped in behind the driver’s seat. We’ve attached a tray table to my chair to hold snacks and a book. I try reading aloud to help ML stay awake and keep us connected, but the monster van has terrible acoustics and I’m not loud enough.

It takes five days to reach her childhood home—during which she’s my only attendant. This in itself is a bold development, a turning point. I’d been resisting having her do anything custodial for me, but the payoff in privacy— from parents and from paid outsiders—tips the scales. Plus ML really wanted to. She wanted to contribute to my well-being.

During my senior year at Harvard—while she earned a master’s in education and a teaching credential—we’d shared a two-bedroom apartment in Cambridge. Bill occupied the second bedroom on weeknights, Jay on weekends. So other than occasionally turning me at night in the bed we shared, ML did none of my caretaking. (Even at that, I tried not to wake her too often.)

The problem was, the paid attendants never took as good care of me as she could. Over time she wore me down with small kindnesses that grew bigger, more personal. Such as re-shaving my sideburns to even them out. Or plucking my most egregious nose hairs. Years later I’d become suspicious, even resentful, of how, for her—to steal an apt phrase I’d glom on to from an article about someone else—the validation of serving others could become a substitute for self-directed wisdom. But at the time I came to like, then depend on, her attentions.

One day, we drove in her car to visit a friend. When it was time to go home, there was no one to help lift me back into the car.

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