by Ben Mattlin
I instruct Peter to lie me down, strip off my jeans, pull my gray flannels on me and put me back in the wheelchair. I teach him how to tie my necktie, just as Dad taught me. I say I’ll pay overtime if this meeting runs late.
ML has taken the van to work, but the newspaper’s offices are only a few blocks away. Peter walks with me, then waits in the hallway. In the side of my chair I’ve had him tuck a folder with my résumé and clips from the Harvard Independent and IBM. Which proves a good move when Dave, the editor, asks for my writing samples.
“Here,” I say. “Can you reach?”
He doesn’t flinch. After a time he looks up and says, “This reminds me of, like, Esquire or the New Yorker.” I know he’s just saying that because I’m transplanted from New York, but I’m immensely flattered—until the ax falls. “The opening I have is in research. In our library. Don’t think that’d be a good match for you.”
I can’t honestly disagree. Then Dave comes up with a plan.
“Do you freelance?” he asks.
A few days later, over the phone, we settle on the idea of a diary of a successful ad. To my delight, the story practically writes itself. The ad: the still-famous Super Bowl spot introducing Mac computers (“see why 1984 won’t be like Nineteen Eighty-Four”). The then-LA-based agency behind it had even put together video interviews with the creative team. So I just speak to the account exec over the phone, watch the video, and type my article on my new electronic typewriter—an early word processor with miniscule memory.
My article runs on the front page.
***
After four articles of decreasing length and prominence, however, the freelance assignments dry up. Dave says his budget is shot but recommends me to a trade-magazine publisher. For the next few years I’m writing puff pieces for magazines with titles like Tradeshow Manager and Rx Home Care. (Yes, that includes wheelchair dealerships.) I never let on about my disability. It’s all done by phone, mail, and fax.
Until one day my cover is blown.
The editor says there’s a staff opening. I apply. I’ve been working for her for at least a year, so I show up brimming with self-confidence. She takes a hard look at me across her crowded desk and, after some chit-chat, asks, “How would you make photocopies?”
I smile to cover my surprise. Calmly, I explain how it’s not hard to find someone to push a button for me, if necessary. I explain that I’m especially good at handling myself, that my disability has never held me back. I’m competent and can cope.
“But if we hire you,” she says, “you’d be here to help us, not for us to help you.”
Needless to say, I don’t score the position. She likes my work enough to keep feeding me freelance assignments; she just doesn’t want me around the office.
I’ve spent my life reassuring people that I’m okay, that I can do things that might surprise them. But all of a sudden this tactic is failing. It seems Mom was wrong. I can’t really be anything I want now that I’ve grown up.
***
One night ML and I come home late to our dinky Rampart apartment. The ramp—around back, off a short dark alley— is covered in cockroaches. It’s pitch black out. While she’s fumbling for her keys I hear a scuffle and a thud. I can’t see what’s going on, but ML is on the ground. She hops up suddenly and is hollering.
“Give me back my purse! Come back here, you bastard!”
She tears off down the street. Her soprano voice is loud, projectile, and apartment windows above us open. I see a woman’s head emerge from one of the windows. “Police,” I say. “Call the police.” But I’m not loud, or she doesn’t speak English or want to get involved.
ML comes back and breathlessly explains she was knocked down and her purse snatched. I have a vivid imagination and a burning fear of her getting raped that’s probably one part love and two parts physical insecurity. The movie in my head of another man being physically aggressive with her taunts me more and more.
But this night ML says she’s fine; she’s not hurt and wasn’t “violated,” just robbed. Later, the police will say that being knocked down does count as an assault. For the moment, though, the guy who took her purse took everything. She’d been holding my wallet as well as hers. From then on, I start carrying a small zippered pouch inside my chair.
The only thing she has left is the set of keys clutched in her hand. We decide it’s unsafe to stay in our apartment. The robber has her driver’s license with the address, and my set of keys. He could be back. So we call ML’s brother in the Valley, and he sets us up at a local motel.
A week later—after less than a year in the Rampart District—we rent a larger, more expensive, safer apartment on LA’s West Side.
***
At around this time, in St. Louis, Missouri, Virginia (Gini) Laurie— daughter of a surgeon and sister of a young man who died of polio, but not disabled herself—launches the International Polio Network (later called Post-Polio Health International). One of its key accomplishments will be spreading awareness of Post Polio Syndrome, in which people who’d contracted the condition decades earlier suddenly face new physical limitations—their joints and muscles, in effect, age more rapidly than other people’s.
A similar effect will be found in SMA survivors, too—like me.
My self-esteem plummets as reality seems to close in around me. Anywhere ML and I go, at any time (even to this day), we can be side-winded by a stranger’s inquisitiveness: Is he your brother? Is she your nurse? Is he your son? (Ouch!) Back on the multicolored streets of New York, I was one of many characters in public view; New Yorkers pride themselves on not being surprised by anything. But here, among the beautiful people, I feel awkward and ill fitting. Waiters overlook me and ask her what he’ll be. ordering. I remember one mostly empty restaurant where the manager came out to tell us there were no tables available, and practically chased us out the door!
For the most part these affronts roll off. But sometimes they sting. It’s not true, of course, that my childhood in New York was without such comments. But where I used to be praised as heroic, inspirational, or angelically cute, I now feel insulted.
Some folks, out-of-the-blue, dub ML a saint—others, conversely, let on that I must be wealthy (or she would’ve fled by now). Fortunately, we’ve been enlightened by reading the Disability Rag and recognize what’s going on. That it’s not just us, or something wrong with us, but something wrong with them. So instead of driving a wedge between us, the occasional barrage of prejudicial horseshit brings us closer. It gives us a common enemy. Again, we two against the world!
In 1986, when I’m twenty-three, we’re only beginning to understand we’re part of something bigger. That year, the National Council on the Handicapped will publish a report called “Toward Independence,” which will argue that federal legislation is sorely needed to protect the civil rights of disabled people. For people like me, this study will clarify two important points: (1) you probably have been discriminated against, your civil rights violated; (2) there’s nothing you can do about it because, in most cases, discrimination against the disabled is still perfectly legal.
***
Through all these tensions, ML never bugs me about my under-employment. She sees how hard I’m working to find work. Plus we’ve wisely kept our finances separate. I don’t depend on her financially at all. Just emotionally. In the midst of prejudice and isolation, I lean on her for the validation of love, of connection. And, yes, of sex.
As soon as she comes home from the chaotic classroom where she teaches, I pounce on her with requests, with demands for attention (like a two-year-old, only nowhere near as cute). With a few minor adjustments she can get me more comfortable in my chair than the attendant could all day. Plus I need to tell her every thought I’ve had since the morning—and pump her for information about her day, about the outside world. I don’t have the interactions, the feedback, of the employed. In Los Angeles it’s too easy to become isolated. It’s easy for a writer to become is
olated, too. And when you add in a disability, that’s a perfect trifecta for the desolation of loneliness.
I’m twenty-three and still financially dependent on Dad. He pays for the attendant, my health insurance, and any medical expenses it doesn’t cover. Other than that, I’m earning $5,000 a year, at best, from freelance writing, and still receive about three hundred a month from Social Security—now that the SSI debt is paid off—and several hundred more from property and stocks I’ve inherited. Because my combined savings exceeds a measly two thousand dollars, I’m deemed too rich to qualify for Medicaid.
I recall how Dean Crooks at Harvard had said my father must be rich as Croesus; I didn’t understand at the time, but maybe Crooks was right. Though that’s not the way Dad’s behaving. He always seems worried about money— at once generous and tightfisted. Definitely a mixed message. Every three or four months he visits. To him it’s a show of concern, of love. But I can’t help feeling he’s checking on his investment—in me. And time after time I’m just not measuring up.
Before every visit, I get the carpets cleaned, hire a maid service, take the van to be hand-detailed, and cut my hair. He never notices. At fifty-nine years old, he always wants to take us out to “somewhere nice.” Because he once lived in LA, Dad thinks he knows the town. He takes us to Tail o’ the Cock, Scandia, The Windsor, Musso & Frank Grill, the Polo Lounge . . . high-priced eateries of yesteryear. When I’m trying to learn to live on a budget. Yup, a mixed message.
“I could take you under my wing,” he says grandly, vaguely, at almost every turn, “but the financial world can be so dry—you don’t want to do hackwork.”
Dad’s freelancing for financial magazines, fund managers, and firms. It’s steady, well-paid work he constantly derides, belying his fantasies of doing something greater—and, it’s clear to me now, revealing his state of disappointment and depression. At the time, though, I’m left wondering if I’m supposed to contradict or agree.
I start saying maybe. “How can I know, Dad, how I’ll feel about financial journalism? I’ve never tried.”
This doesn’t move him, however. He was just talking theoretically . . . pie in the sky. But there’s an element of blame in his voice. On some level he thinks I’m at fault for my chronic under-employment. He wants to help but is grasping at straws, desperately trying to be a good provider—a provider of ideas, not just money. My failure is his failure.
Actually, what he’s doing is what I used to do—failing to recognize the extent of my disability, and employers’ squeamishness about it.
(Alec, on the other hand, is earning a master’s in applied social research and has “a good career ahead of him” in political and market surveying, proclaims Dad. Though Dad doesn’t say it, the implication is clear, at least to me: Why are you, Ben, having such a hard time finding a job?)
One Sunday brunch, for no particular reason, Dad wants to take us to the Hotel Bel-Air. “If you’ve never been, it’s something special,” he explains.
ML’s had enough of his fancy restaurants and claims a migraine. But I’ve never been there and I’m curious. Dad hasn’t been there in decades, but he remembers it fondly. I think, too, he’s looking for some place in LA where men have to wear a jacket and tie. He’s quite obsessed with dress codes—perhaps a holdover from his GQ days?—and frequently laments LA’s lack thereof.
As my weekend attendant, ML dresses me in my one suit, a button-down shirt, and a favorite conservative necktie. Then she relaxes with the Sunday paper while Dad drives the van along winding Sunset Boulevard to Stone Canyon. It’s a lovely, clear fall day as we pull up to the hotel. Undeniably beautiful, the grand old place’s lush grounds—the stream, the swans, the thick green foliage. It’s like another land. You can forget you’re in the middle of an urban desert.
Inside, we head for the small, darkened restaurant. Is there music—a piano? a harp?—or is that just an atmospheric tone my memory has created? It’s practically empty, and the few men there are indeed in business attire even on a late Sunday morning. I remember ordering tortilla soup because it’s something I’d never heard of; also, the word “tortilla” doesn’t seem to go with the place’s formality, a contrast that appeals.
Recently, as feeding myself has become more difficult than ever, I’ve discovered I do best if my elbows stick firmly in one place on the armrests of my wheelchair. To hold the right position, I need to push up my sleeves and bare my elbows; skin sticks to the upholstery better than fabric. Of course, doing this now will ruin my look—my suit-and-tie look, that is.
“Dad,” I say, trying to be more attuned to and assertive of my needs and wishes, “I’d like to push up my sleeves. Do you suppose I can get away with that here?”
“Oh, I don’t think so.”
He’s dead serious, which to me is the wrong answer. Granted I’d set him up—posed my request as a question. My therapist wouldn’t have approved. But it was a rhetorical question. A joke, sort of. I’d wanted him to say, “Of course you can. Who cares what anybody else thinks!” He’d blown his line, his opportunity to step up to defend me and, by extension, the rights of all disabled people—proving he’s more concerned with formality and appearances, with authority and making a good impression, than with my comfort, my need for a reasonable accommodation. To me, it’s a betrayal, a disavowal of my community, my newfound disability consciousness.
“No, seriously, I need to,” I say. I explain how it improves my ability to eat. And he complies. He pushes up my sleeves so I can feed myself.
I make a mental note to bring ML here sometime. It really is a lovely place.
The next day, or perhaps on a subsequent visit, he says, “Maybe I’m giving you too much money.”
It’s almost as if Dad, sitting cross-legged before me at the small glass-circle-topped table in our new one-bedroom apartment, is thinking aloud. The cheap table wobbles as if from the impact of his words. The implication is that financial support is somehow robbing me of motivation. Which is untrue. The logical corollary, then, is that I’d have a job if only I tried harder. Also untrue. What’s worse, pressuring me—making me feel bad—doesn’t inspire me to work better, to think more creatively.
After building me up at the Hotel Bel-Air, he now makes me want to shrivel up and disappear.
***
The discrepancy—the rift—between Dad’s perceptions and my view of reality seems so stark and unbridgeable that I become downright stupefied and tongue-tied. Dad still holds such natural authority it makes me doubt myself, my instincts.
When he’s gone, when I’m alone or with ML, my instincts tell me louder and louder that the culprit is disability prejudice. I’m heartened in 1987 by the best actress Oscar bestowed on Marlee Matlin (no relation) for Children of A Lesser God, which single-handedly makes sign language and the name “Mattlin”—no matter how many T’s—look cool. And a year later, when students at Gallaudet University, the school for Deaf people, in Washington, DC, pull off a week-long campus shutdown to protest the installation of a new university president who is not hearing-impaired—and win!—I know it’s important and right.
I know things are changing. More profoundly, I know that whether I like it or not I am part of that change. I’ve never been political, but a sense of discrimination is blazing around me like a burning bush, and I know I must respond. I must become involved.
In 1988, when I’m twenty-four, Congressman Tony Coelho and Senator Lowell Weicker introduce a bill outlawing discrimination against people like me in all aspects of society—not just at publicly funded schools and organizations. For the first time in my life, I write to Congress to urge passage.
The following year, the President’s Committee on Employment of the Handicapped is renamed the President’s Committee on Employment of People with Disabilities—followed a few months later by the renaming of the Education for All Handicapped Children Act as the Individuals with Disabilities Education Act. What’s in a name? Not much. But even I learn to say “peop
le with disabilities” instead of “the handicapped.” It’s an awkward phrase, but it is the one chosen by the vanguard of the movement so I respect it. Not because of the sanctimonious “people first” movement, or the bogus etymology that claims the word handicap comes from the idea of begging with hand in cap. (It doesn’t.) Linguistically speaking, the oldest and arguably most accurate term is “cripple,” which some disability-rights leaders take on as a kind of in-your-face badge of pride. In time, I do too.
One of those leaders becomes a fast friend. Her name is Barbara (just like my stepmother), and she’s starting a local group for Jews with disabilities. To me, this sounds tailor-made for getting me out and meeting people (LA is a notoriously difficult city for meeting people). In our first phone conversation, I’m struck by the pauses in her voice as she takes puffs from a ventilator. I’m also dead certain she doesn’t want my sympathy. “Ach, life is tough for everybody,” she tosses off.
What really floors me is when she says she has spinal muscular atrophy, too. I’ve never met anyone who shares my diagnosis.
She invites me to a gathering of friends with disabilities—Jews and gentiles. I’ve never really socialized with other disabled people, but I say yes.
When I meet her face to face, I’m surprised Barbara is so attractive. Wide, soulful eyes and thick, cascading red hair, not the angry hag I guess I’d imagined—not someone who’s rejected society before it can reject her. In fact, she’s an elegant, pencil-thin woman who’s only recently taken to using a motorized wheelchair. The chair has a beeping portable ventilator attached. She has a lot more physical strength than I do, except when it comes to breathing. She drives her own van and can even walk a few steps. She lives on her own.
Spinal muscular atrophy, I learn, comes in many forms.
In time Barbara invites us to a series of dinners and meetings. I become a kind of project for her. At one of the first dinners—at Barbara’s smart, new, government-subsidized accessible apartment—ML and I are introduced to another way of life. Several other ways, actually. Some people are fed by assistants, who stand over them quietly. Another feeds himself with his feet. A dapper man at the opposite end of the table asks to have the position of his food identified. “Chicken is at six o’clock, squash at four o’clock, and your wine is at ten o’clock.” Whenever people address him, they identify themselves first. As in, “Hi. It’s Ben.” His guide dog (note: nobody says “seeing-eye dog”) sits quietly at his feet.