Miracle Boy Grows Up (29 page)

So when a man from Social Security phoned, I expected a scolding, perhaps, or at least an official termination. Instead, in a friendly tone, he asked a series of questions. How much was I earning? How much did I spend on personal-care help and equipment to keep me employed? He didn’t ask about my marital status at all.

Again I answered honestly. There was a long pause. Then he came back: “By my calculations, you don’t need to return these checks. I’m going to have them all reissued to you. And your future benefits will continue. You see, we count your employment-related expenses against your earnings …”

“You’re sure?” I interrupted.

That was as far as I pressed. Perhaps the rules had changed. I didn’t want to push him too hard or volunteer extra information.

So the checks kept coming. I couldn’t stop them, even while other disabled people I knew—who really could’ve used them—couldn’t get the benefits they deserved no matter how many times they applied or how hard they argued.

Why had the inscrutable federal agency caught up with me
now?
No way of telling. Naturally, I file an appeal; I accept the termination but argue against the outrageous repayment, saying I wasn’t at fault and had never sought to deceive. But my appeal is denied—partly, I’m told, because I can’t honestly claim
inability
to repay. I still have savings from the sale of the New York apartment all those years ago, which generate dividends and interest I live off of. The best I can do is negotiate a repayment schedule. That activist pal who’d warned me all those years ago that this day might come said the terms could be pretty reasonable.

“How much you wanna pay back monthly?” asks the charming, molasses-voiced woman at the repayment office in Chicago or Philadelphia or somewhere.

“A hundred?” I blurt.

When she says fine, I catch myself. That was too easy.

“Actually, would fifty be enough?” I say.

It is. How low could I have gone? Then again, even at this rate I’ll have to live to a hundred to be debt-free. And I don’t want to saddle my heirs with too much liability. But maybe by then the marriage penalty will have been overturned.

***

I
write a short essay-cum-exposé about this injustice, but I can’t decide whether my tone should be ironic or irate. The piece never gets published.

I try writing about other things that perplex, obsess, or incense me. Isn’t that what writers do? Observe the world and filter their experiences through their artistic sensibilities? I no longer want to be just a mouthpiece for the cause—penning angry, semi-official disability-rights essays. On the other hand, I don’t want to hide my disability either. I can’t deny that the movement has raised my consciousness, as we used to say; my perceptions are informed by my exposure to and affinity for the group. But now they are
my
perceptions, my take on events, not expressions of groupthink.

I’m moved in this way by the unexpected death of a friend from the independent-living center. Fred was a fellow board member—a tall, jocular, spinal-cord-injury survivor who drove an oversized electric wheelchair. Was he even thirty? He was full of bonhomie suffused with evanescent sorrow, frequently asking me how I cope. I regret that I usually just smiled and shrugged him off. (Well, I can’t literally shrug, but you understand.)

When I hear he’s dead, I immediately wonder if he killed himself. He was never maudlin, yet plainly unhappy with his life as a cripple. He talked a lot about the good old days—sports, girlfriends. I thought he was just going through an adjustment phase, his accident being fairly recent.

At Fred’s memorial service, my skin begins to seethe. His loved ones keep talking about his pre-accident athletics . . . almost as if they miss those old days more than anything, as if perhaps they liked
him
better then, too. Someone, maybe his father, concludes with something like, “Now he’s in a place where he can run and jump again.” And there’s a tearful murmuring of agreement from the front row.

When I come home, I rush to the computer and write about this in a kind of mental fog. How dare his family deride or, worse, negate his post-accident life? If he had suicidal ideations—fantasies of escaping this world for a better place, a place where he could again be what he once was, the young able-bodied man his family wanted him to be—it’s no wonder! I save my draft under the title “Suicide”—and promptly forget about it.

It’s only several months later, after I hear an invitation on NPR to submit short essays for a program about strongly held personal beliefs, that I rediscover the old file with the provocative name.
Suicide?
What’s this …?

I revise, polish for radio, cut to the required length, and prepare to e-mail it to NPR. Why not? What’ve I got to lose? Before clicking send, though, I tweak the title to something more descriptive . . . something more evocative and less
pro
vocative . . . and come up with the rhetorical question:
Are there no wheelchairs in heaven?

The next day an NPR editor writes back. She asks if I’m willing to do a little rewriting. She suggests I play up the idea of no wheelchairs in heaven and lose the suicide angle, since we can’t actually prove anything.

I’m grateful for the feedback—the speediness of the reaction, too, which is always a good sign. I don’t understand at first what she means, what she wants, but in the end I conclude she’s right. Brilliant, even! A great editor!

Yes, I’ve tried to combine my artistic sensibilities with my disability consciousness to craft something uniquely mine, something authentic. At forty-three, I feel I finally have the maturity to be genuine. It may even be the first time I’ve written from the heart.

But . . . well, if I’m an artist, I’m one who’s devotedly practical. If it can get out over the NPR airwaves, I’ll do what she asks. This isn’t really about suicide, though I still think that ties in; it’s about the stabbing hurt I felt at that memorial service. Leave out the politics. Keep it personal, which may be a stronger political statement anyway.

I revise and resubmit. An interminable two weeks passes. Had my optimism been premature? Then comes the phone call . . . can I be at the studio in two hours?

The girls are in school, so ML and I pile into the van—a minivan now, thanks to my stepmother Barbara’s generosity, with a lowered floor, seats removed, and a folding ramp—and rush to NPR’s Culver City studio.

***

T
he three-minute monologue airs a few weeks later, one December morning. I’m embarrassed by the breathy tinniness (or do I mean “tininess”?) of my voice. Not very macho. Then again, why should I sound macho? I’m not a pitchman or an actor. I sound like what I am—a person with a disability. Still, I worry someone at
Institutional Investor
or
Dealmaker
—which still throw a little work my way every now and then—will find out.

By the time I get to my computer that morning I’ve already received e-mail about it. “I am a Leadership Coach [and] your piece inspired me and encapsulates for me what coaching is all about—optimism and perspective,” goes one message. “I teach a reading assessment course,” says another, “[and] have always tried to instill a sense of respect for ‘disabilities’ . . . I would like to have a copy of your story to share with my students on the first day of class.”

For the next several days they keep coming. The editor of a poetry website wants to post a transcript of my prose. A congressional aide who uses a wheelchair writes to say, “It’s wonderful to know that I am not alone.” A man in Vermont says my words changed his “outlook on the day if not the year” and asks if he can “help spread your point of view.” I’ve made a parent of a child with Down syndrome “feel better,” and touched someone with a loved one who died from muscular dystrophy. I even inspire a woman who heard me online in Germany.

Requests for reprints pour in. My piece is used in disability-awareness courses, tolerance and diversity newsletters, spiritual seminars. A rabbi in New Jersey asks to use it in her Rosh Hashanah sermon—and posts my words in the temple lobby!

Perhaps the most humbling message of all, forwarded by NPR, concludes: “I’m still an atheist, but Ben is a god to me.”

I get a little swoony from all this. From the effect I’m having on people. I’m used to being told I’m inspirational. Heard that one all my life, but usually for doing nothing but existing. For living life on wheels. This feels different, deeper. I’ve actually touched people with my words. Is this, I wonder, what’s meant by finding your “voice”?

And if I can reach people this way, I’d better be damn careful about what I’m saying. For almost instantly I wonder where this will lead. Will I have access to this soapbox again?

Lost so long in the marginal marshlands of the un- and under-employed— even at my busiest, I’d always had the sense I could do more, work harder—I’m desperate to be needed professionally. Desperate for respect, for direction, for solid ground. Will NPR provide at least a stepping stone?

An answer of sorts comes not long after. My editor all but commissions a follow-up. Can you perhaps do something for Valentine’s Day about you and your wife? she suggests.

Thrilled to, of course. Yet a cautious note sounds within me. I’m familiar enough with disability history to know the dangers in drawing too much attention to oneself, one’s personal life—the risk of being called not just inspirational but heroic, an overcomer, an exception. I can’t speak for all disabled people—and wouldn’t want to, for they are a motley crew—but don’t want to separate myself from the pack either. I’m just one of many, after all. It’s a funny thing that tends to happen when one crip does well. People say wow, what a strong person, what an admirable individual—instead of questioning their prejudices about all the
other
people with disabilities.

It’s like the old “you’re a credit to your race” line. Commend the individual while insulting his tribe.

This puts me in mind of a true story Dad once told me. As a young man, he got in a conversation with an older gent on a park bench. Knowing Dad, he probably asked questions and listened to the old man rant. Dad seems to have a journalist’s interviewing skills in his DNA—not a hard-hitting political journalist’s, perhaps, but a human-interest reporter’s. He can engage anybody in conversation, and even in his eighties he’s accosted by strangers as a sympathetic ear for their political ramblings.

This particular park-bench geezer apparently veered onto an anti-Semitic tangent. “The Jews are to blame!” he told Dad. “It’s all the kikes’ fault!” And Dad apparently nodded, humored the guy—but did not run away. I might be remembering wrong, but I get the impression Dad came back to the park bench day after day to continue the conversation. At any rate, at some point Dad said to him, ever so calmly, “You know,
I’m
Jewish.” And the man reportedly waved a hand in the air and replied, “Yeah, I suspected. But you’re different.”

None of us is one thing alone. We’re all a hodgepodge. I can neither conceive of myself as not having a disability, nor imagine not being my parents’ child. I am an ex-New Yorker, a Harvard graduate, a husband and father, a professional writer, and a person with a disability. I am all those things, but none of them is me. Not entirely.

***

A
fter the Valentine’s broadcast, I receive more e-mail. One long one in particular touches me. It’s from a young woman who’s engaged to a man in a wheelchair. “[You’re] a beacon of hope for me and a special boy that holds my heart in his hands. [Your story] gave me so much hope for my and Kyle’s future. It showed both of us that it can be done. Dreams that we have can be attained. It really was a gift to both of us.”

I also get a few offers for public speaking.

So I keep pitching ideas to NPR, and though there’s a lull for nearly a year—due, I presume, to management and budget issues—more broadcasts follow. (A few of the pieces that don’t make it on air alight in print.) And I wonder, have I finally successfully married the two sides of my identity? The educated professional journalist and the disabled man. Or rather, should I say, the educated professional is the disabled man, and vice versa. Am I at last one whole person, encompassing the diverse aspects of my life?

2006 AND BEYOND

“You see, really and truly, apart from the things anyone can pick up (the dressing and the proper way of speaking, and so on), the difference between a lady and a flower girl is not how she behaves, but how she’s treated.”

—George Bernard Shaw,
Pygmalion

***

O
ne dewy morning in the midst of this NPR hubbub, I’m trying to get my latest attendant to position my hand correctly over the mini-joystick. I become impatient with him, until I realize it’s not his fault.

Since Miranda was small, we’ve had a new tactic on the attendant front. I’ve hired a young man to work two hours every morning, which is generally when I need the most help. He gets me washed and dressed and in my chair and ready for the day, seven days a week. Then ML takes over.