by Ben Mattlin
But when you have too many windows open on your computer at once—and some of them are linked to questionable websites—you run the risk your computer will freeze up or crash. And with no ability to click out or restart, you’re stuck. Until help comes along. In my case, that’s usually my wife, though sometimes I call the building’s maintenance man (the remote phone switch I have now automatically dials the operator, who connects me with any local number for free).
When help comes, there you are with the embarrassing evidence of your masturbatory voyeurism frozen on the screen . . . for all to see. It’s important to the enjoyment, however, to preserve the guise of privacy—so if you’re like me, you make up a simple, plausible excuse like, “Damned pop-ups!”
So: Must buy a new mouse to save me from these and other embarrassments.
I search online. This is harder than it might sound, and not just because of the variety of high-tech equipment. For me, it requires intense honesty and self-reflection. I still think of myself, at times, as “the boy who can’t walk” or “the boy in a wheelchair.” In other words, my legs don’t work. In truth, my arms never worked all that well either, and now my hands are crap. As with my job search early on, I must face facts about the extent of my impairment.
So in the end I resign myself to a mouth-controlled computer pointing device. There are several brands—basically joysticks you can move with lips and click with forced puffs of air. Only one costs less than a thousand dollars, however. It’s only $800 plus shipping and handling.
A local dealer sells me his old demo model for a hundred. I take it home and try it. Voila! Like magic. Now I can truly operate the computer totally hands-free! Porn sites and all . . . which are suddenly much less appealing.
***
But money remains tight. I rely on credit cards more than I should. Even my monthly checks from Social Security abruptly stop coming. Worse than that, I receive an unbelievable notice to reimburse the agency for overpayment!
I’d been receiving benefits I didn’t deserve, apparently, for the past several years. Social Security wants me to pay back no less than $70,000. I can only laugh. $70,000! What’s really funny is, I’d been telling Social Security it was overpaying me for years.
Years earlier, not long after ML and I tied the knot, when I was embedded in the disability-rights movement, an activist pal had told me to keep my wedding a secret or face the consequences.
“Too late for that,” I’d scoffed. I’d already written about being married in a few of my published pieces.
“Be prepared for a big, nasty bill, then.”
As my late friend Barbara had put it, it was the marriage penalty—not unlike what caused her to postpone her own wedding. The checks I’d been receiving since college—since Mom died—were Social Security Disability Insurance Survivors Benefits; only unmarried survivors of deceased parents are eligible.
Once I heard this, I debated what to do. I figured I was already in hock for something like $7,000—why go to Social Security and invite trouble? So I tried saving my monthly checks in a separate account. That way, if and when Social Security got wise, I’d have a chunk of money ready to send in. But alas, I only managed to save a few hundred bucks.
Plan B (or my “second plan,” as I might’ve put it in a story to my kids) was to tear each new check in half and send it back. This almost worked. (I should’ve known better; second plans never work.) Social Security responded with a letter asking for an explanation. Which I answered promptly and candidly. I said I could no longer accept benefits because I’d been earning more money—and was married.
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 i
nvitation 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.
***
The 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.
***
After 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?
CHAPTER TWELVE
THE GHANAIAN CONNECTION
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
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br /> ***
One 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.
Since it’s only a couple of hours, I don’t have to try so hard to find the right person. I hire a young Filipino we’ll call Stanley, who also works part-time at a sheltered workshop for retarded adults. I found him through an ad I’d placed on Craigslist.
Stanley follows my instructions—or does his best to—but this morning I cannot work the mini-joystick. It’s almost literally the last straw—the last finger I could still move, could still use to power my chair, on an otherwise lifeless hand, has quit to join its useless partners. So the time has come.
I contact my wheelchair mechanic, Hamid—or try to. His company has vanished. Thanks to Google, I track him down in Burbank. Highly motivated to get this taken care of as quickly as possible—since I hate having to rely on others to push me, like when I was a kid—I explain what I want and urge him to meet me ASAP. He suggests a garage in Burbank he’s using as a temporary office.
I arrive first thing the next day, as the morning fog is lifting. Hamid presents me with a piece of black plastic. “We can attach the mini-joystick to this collar,” he says. “You hook it around your neck, near your mouth, and there you go.”
I swallow hard. He’s a tall, muscular man with a beer belly, looking rugged but friendly in old Levi’s and a navy sweatshirt. I have no choice but to trust him. “Okay, let’s do it.”
I like this collar concept. The less hardware on my chair the better. Plus it has a vaguely futuristic feel to it, like Bluetooth cell phones, which are new then. Yet like all repairs and adjustments with wheelchairs, it’s never as simple as it sounds. First Hamid has to order a new collar; his demo is cracked and unsafe, he says. And he’ll need a doctor’s prescription, to go through insurance—