by Ben Mattlin
Yet I’m suspicious too. Being in a wheelchair has always made good things happen. I’ve been hustled to the front of long movie lines, ushered through backstage doors to meet Broadway stars, and even given free toys and snacks. People feel sorry for me. I know I should say No—don’t treat me like a delicate child! But I prefer to think of it as being a VIP.
Only Mother asks if I want to go to Amherst. I’m honestly not sure.
Dad’s the one who got the ball rolling, making the first calls to the schools on my list. He asks, innocently enough, if they can take me—almost apologetic in his approach. Amherst’s answer was to invite me for an interview. The rest feign a laissez-faire openness, many offering lawsuit-fearing bullshit reassurances. Except one: Duke University. “It’ll be damn difficult,” Dad quotes back to me. Needless to say, I don’t apply there.
Dad claims he doesn’t care where I go—then jokes, of Amherst, “even if it’s one of Massachusetts’ lesser institutions.” In our family, humor covers a lot of unpleasantness.
I know Dad is a proud Harvard man. His time there, in the 1940s, was liberating and stimulating, after his anti-intellectual boyhood in Ohio. But I’m having a hard time seeing it that way.
Over the next few months, Kenny and I dutifully visit Harvard, Yale, and Princeton—practically the only colleges that exist on Dad’s map. At Harvard we spend the night in a Lowell House suite occupied by friends of Alec’s. It’s up a few steps, but Alec’s own room is up a couple of flights. I remember brushing my hair in the morning, with Kenny holding my arm to reach, and grimacing at my blow-dried mane’s frizziness. A bad omen, it seems.
The gloomy day is filled with bad omens. I detest the bumpy cobblestone and brick pathways, which make my wheelchair feel like it has a flat tire. I also don’t like eating at large group tables in the echoey dining halls. You see, the way I feed myself—hunched forward just so, my left hand supporting my right arm, with which I raise a lightweight fork or spoon to my mouth in slow steps, often walking my fingers up my chest—takes time and concentration. Plus I have to swallow carefully, to be sure nothing gets stuck in my throat or slides down to my lungs. This is one of the more delightful side effects of my spinal muscular atrophy!
As the weeks wear on, I develop an increasingly deep, sickening doubt about whether I can survive among these dreary colonial digs and seedy, tweedy Old World traditions. The expectation of becoming an Ivy League up-and-comer battles the frightening reality of my physical limitations and sense of vulnerability. Which is why my mood is brightened when Mother inadvertently suggests a solution of sorts. “What about Stanford and Berkeley?”
Perhaps she was reading my mind, but contrary teenager that I am, I scoff. “Do you think I can’t handle the Ivy League?”
“Not at all. The weather’s better in California. I’d give them a look.”
A few evenings later her “gentleman friend” Bob is over for dinner. He asks about my college choices, including the California schools, and weighs in with, “Avoid the snow.” Are all adults hypocrites? Bob is another Harvard man. I’m surrounded by them!
“I’m not going for a vacation,” I say, insulted. You think I can’t handle snow?
He absorbs my tone and takes a pensive swallow of his bourbon and water. “Springtime in Cambridge is lovely.”
I tell him California seems far away, which actually was Dad’s reaction. Bob pooh-poohs.
“It’s only a five-hour flight versus a five-hour car or train ride.”
Good point, I think. Still, isn’t he missing something? What if something should happen to me three-thousand miles from my family?
***
A month later Dad takes me to California. He’s set up a meeting with a Stanford graduate student who uses a wheelchair. The slight, balding man has a small apartment off campus. It has remote-controlled lights and doors. As if that weren’t enough, he tells me the BART subway system is wheelchair accessible. I’ve pretty much lived my life assuming subways were off-limits unless I was with someone strong enough to hoist my chair up and down the stairs, so I’m intrigued as by a magic trick. Still, I’m self-conscious meeting this guy and fail to appreciate the research Dad has done.
Afterward, Dad wheels me around campus. It’s bright and warm and looks like Fantasy Island. Plus the pavement is distinctly smooth and even. We loll by a fountain under a palm tree. There’s a cart selling fresh oranges— I’ve grown up with hot-dog stands and Italian-ice carts, not fruit on the street!—and we share a juicy one in the luminous open air. When a sun-bleached coed strolls by, her silken light-brown hair bouncing off her tanned shoulders, we both grin stupidly and are surprised when she says hi to the obvious strangers.
“I think I’m in love,” says Dad, after she’s out of range. (I hope!)
For me, it’s a memorable golden moment, seeing Dad let his hair down. Does it mark a shift in our relationship?
The good vibrations are short-lived. Soon we’re loading back into the rented car—he folds my chair into the trunk, after lifting me into the shotgun seat. Despite complaining about feeling sweaty, Dad refuses to take off his blazer or even loosen his tie while driving. I tease him, play on our newfound familiarity by pointing out the incongruity. “I need to maintain my New Yorker identity,” he explains.
And I wonder how much we’re both pretending something.
***
Next, Dad takes me to the independent-living center in Berkeley. How he keeps coming up with these places is beyond me. Also, why? I am sixteen.
We meet a mountain of a woman in a motorized wheelchair. She’s wearing a sort of tie-dyed tent dress—and mostly addresses me, not Dad. She asks if I know my rights.
I know them from my lefts. I memorized the difference because the hand control on my electric wheelchair at home is on my right side. It’s important to know your left and right when you’re giving other people instructions about which way to manipulate your body.
Naturally, I don’t say any of this.
The woman looks beguilingly powerful in her wheeled throne. She’s all about power Out of nowhere she tells me how important it is to ask for help when you need it—how it doesn’t show powerlessness but actually gives you power. I’m not sure about that, but I have to admit I’ve always been shy about asking strangers to open doors for me, and such. Being “assertive,” as she calls it, simultaneously raises other people’s consciousness of access barriers and empowers you to go out in the world independently, to stop relying on family or hired assistants. I nod, in my subtle way. But this is sounding dangerously close to a condescending lecture, and I tune out, focus on her gadgets. I particularly like the speakerphone. (Just like Ironside’s!) She notices, and demonstrates how it’s activated with a simple switch even I could push.
I still don’t know how I’ll live on campus—any campus—without my family. Without Kenny. But perhaps I’m beginning to get a picture. It will involve speaking up, as Mother would say. And it will involve technology.
***
Back home, one spring Saturday, my weekend attendant, Richard, is pushing me through Central Park when a chance encounter changes everything. We run into two girls I know from school. They’re seniors while I’m a junior, but they seem genuinely fond of me and smile pleasantly at the serendipitous meeting.
“We were just talking about you,” giggles Jane.
She’s in jeans and a maroon T-shirt, looking . . . comfortable. Andrea, beside her, in slightly more threadbare-and-baggy jeans and Oxford cloth, appears a shade more preppy. Both girls are tall and slender, soft-spoken and smart. I can’t decide which I have a crush on. Both, probably. I have many crushes.
Distant tom-toms reverberate through the trees, giving the scene a vaguely tropical beat. I reply something stupid. Jane comes back with, “We’ve decided you’re going to Harvard and will write for the New Yorker!”
A humid moment passes while I digest this. “That’ll be the day,” I say, echoing a popular Linda Ronstadt song of the t
ime, and smiling involuntarily.
Afterward, something within me shifts. Ivy League nerdiness suddenly doesn’t sound so bad. Yet later still, as I struggle that evening to have Richard get me comfortable in my pajamas in my wheelchair, the enormous compliment goes sour. Jane and Andrea were clearly forgetting something. They were forgetting how beset I am with the basic trivia of coping.
Or does that make any difference?
***
Around this time—1978 and ’79—Mother and her friends are abuzz about two hit movies: Coming Home and An Unmarried Woman. To hear Mother talk about them, these are the most important entertainments since Erica Jong’s Fear of Flying five years earlier!
Of course, I haven’t read or seen any of them, and I won’t (at least not for several more years). Not my style. I’m mystified by the smattering of sanctimoniousness I overhear about female independence and Vietnam vets and Jane Fonda. Yet what An Unmarried Woman means to feminism (“women’s lib,” in those days), Coming Home will come to represent for people like me.
It’s not just about vets and the ravages of war. In Coming Home, a paralyzed vet played by a buff Jon Voight seduces the unhappy wife played by Jane Fonda— fucks her like she’s never been fucked. From his wheelchair. (Okay, he transfers himself into bed, but there’s a lot of lovemaking on wheels, too.)
If the Jill Clayburgh classic says You Don’t Need A Man, the Voight-Fonda hookup shows People In Wheelchairs Can Be Sexy. More than that, it’s the way Voight tells Fonda how to deal with him. What he needs. Instead of the usual portrayal of the self-hating cripple who can only be saved by the love of a good woman. So it’s not just that those with disabilities should be welcomed and respected and loved in all the same ways as everybody else; it’s a seismic shift in the balance of power. Because ultimately Fonda doesn’t rescue him. If anything, it is he who rescues her from her miserable life with an abusive, emotionally scarred husband. Fonda is neither Voight’s nurse nor his caretaker. And she is definitely not a saint for befriending him.
***
When the time comes, I do my best to type my college applications myself. I have an electric typewriter I was given for my bar mitzvah, ostensibly to exercise my fingers. Gingerly walking said fingers over the keyboard, I type slowly, carefully. Which means I’m economical in my choice of words. Mother says she’ll help if needed. But I have to try to do it myself first. She’s good about setting limits like that.
She’s been working at Western Publishing Company, editing cook books in the Women’s Division or something. She is actually a good editor with a sharp eye. She knows, for instance, that the degree my father earned at Harvard (it’s on the applications, under family history) was an AB, not a BA.
The personal essay is where I think I will shine. My SAT scores are so-so, my grades are all right, but Steiner doesn’t offer AP classes and I haven’t achieved anything extraordinary (though I do co-edit Steiner’s literary anthology and newspaper). I am, however, confident in my writing skills. My plan is to tailor one basic essay—a mixture of mild self-reflection and dollops of charm and wit—to fit each application’s precise requirements. When the topic begins to take shape, it seems an obvious choice. My Life in a Wheelchair—A unique perspective on developing character and coping skills.
Sure. The usual bullshit. It’s what people want to hear about anyway—how do you do it? How do you manage? What’s it like to be you?
Best of all: No research necessary. No fact-checking to gum up my narrative. No one can question my authority.
A first draft flows easily. I focus on how TV- and comic-book-fueled fantasies “suffused my relationships with the physical world.” From The Mighty Thor to Captain Kirk and, perhaps especially, Chief Ironside, I’ve spent much of my life “identifying with embattled overachievers. Is it escapism because I can’t face my own reality? Perhaps. But there is more to it,” I propose.
My larger-than-life heroes, trapped in alien and sometimes hostile worlds “as our barrier-laden society often seems to me,” I write, “invariably prove themselves to be smarter, braver, and stronger than people expect. They give me hope and a model for patience and self-determination that I strive to emulate.”
Lots of SAT words in there. I’m particularly proud of the line: “Then adolescence struck, and I’ll never forgive it!”
It’s the same sort of blend of fearless honesty and beguiling nonchalance I wielded in my open letter to school from the hospital. It worked before, so why not again?
But face-to-face contact—when the admissions gatekeepers actually see me, wheels and all—may undermine the whole charade.
***
I first talk to the woman from Harvard on the phone. Kenny holds the kitchen receiver to my ear. She is a local alumna. We try to figure out how I’ll get into her Brooklyn brownstone. She decides she’ll come to me.
This is great! I’m thinking. Who else has the advantage of being interviewed in the comfort of home? Another benefit of being handicapped. Plus it would be foolish to dress up in one’s home, right? So I don’t have to go through the wardrobe agonies!
On the evening in question, Richard—my weekend attendant, who sometimes moonlights on weeknights—opens the door when she rings. A broad-shouldered, somber woman in a severe dark blue dress and pearls, she has just come from work, she says.
I offer her a drink, as I’ve been trained a host should do. She has no coat to hang up, or I’d have offered that first. Would’ve asked Richard to take it, to be precise, since I couldn’t actually take it myself. I prefer thinking of my attendants as butlers or valets. They work for me, I’ll say, rather than take care of me. And they are never, never nurses.
“Awfully muggy out there,” says the alumna pleasantly. “Just some water, please.”
“You mean we can’t wine and dine you?” says Richard, suddenly chortling.
My eyes dart to my soon-to-be interlocutor. (Sorry—SAT word.) She smiles at Richard’s jest, thankfully, and shakes her head. I relax into an easy camaraderie.
And this time I remember my fourth killer question:
“What sort of candidate do you think makes the ideal Harvard student? Or, to put it another way, for what sort of kids is Harvard looking?”
***
Richard is often jokey, except when he’s in a mood. The first time he dressed me, I remember his quip as he closed my jeans—”So . . . should I zip up your personality?”
It seemed hilariously funny and offbeat. “Never heard it called that before,” I said after recovering my breath.
“The older I get,” he said, “the more it rings true. Your personality hangs between your legs.”
I’d rather have the jokiness than the mood. The pissed-off mood. Over the years, attendants’ moods will weigh heavily on me.
There’s an edginess to this particular bit of humor. Mother says Richard is probably homosexual, but maybe it’s just that he’s from St. Louis. Being gay is a big deal in those days—considered menacing, even pre-AIDS. Mother isn’t worried, though, she says, because she doesn’t think I’ll be easily “turned” at this point. Apparently she’s worried about that before. I’ve never worried about that, but years later I’ll have similar concerns, particularly in the first days of a new attendant, when I’m essentially presenting myself naked in bed to a stranger. Later still, I’ll think of the gay/LGBT/queer rights movement as roughly akin to disability rights—a newly defined minority group made up largely of people intrinsically different from their own parents, who struggle in similar ways to “come out” and gain respect for just being who and what they are.
It is with Richard that I will get drunk for the first time. The attendant is not, after all, my parent or guardian (though some will think of themselves this way). It is possible for a disabled boy to be as naughty as any other boy, to keep secrets from parents, provided there’s assistance from a willing helper.
Afterward, dizzy from having gulped a Black Russian like it was a milkshake, I meet Dad and Bar
bara at a midtown restaurant. They don’t seem to notice how woozy and out of control I feel. I know I’m good at pretending but begin to wonder if they’re just not that observant.
***
The anxious months of waiting for college decisions pass in a kind of preternatural calm. I become socially fearless. On weekends, with Richard’s aid, I join groups of guys for smokes and sometimes beer (the weekends I’m not at Dad and Barbara’s, that is). Either the guys come by my place and then wheel me across the street to the steps of the Natural History Museum—where, obviously, they park me at the bottom and perch themselves on low steps—or Richard finagles my chair into a Checker cab and deposits me at someone else’s place for a few hours. My cutoff is eleven-thirty, when Richard has to bring me home and get me ready for bed, before he can go home himself. Or if I’m out with the gang, I must make sure they bring me home by then.
All of which is by way of impressing the point that, contrary to common lore, a kid in a wheelchair integrated in a regular high school class can fit in, will have friends, and is rarely subject to undue teasing. I’m sure bad things happen in some places, but by and large that’s not been my experience.
Once a pal named Billy, whom I don’t know that well (he’s a grade or two below me), wants me to buy the beer. “I can pay for it and push you in,” he explains, “but you won’t get carded, man.”
“I’m not eighteen.”
“Does that matter?”
He’s right. I’ve never been carded. Another benefit of being handicapped. Instant college admission, automatic permission to drink, presumed innocence even if you’re guilty.
Unfortunately, these privileges don’t apply to sex.
I ask girls out every now and then. We’ll meet at a restaurant on Columbus Avenue or a movie—I figure they can push my chair a little ways if necessary. Somehow, though, I steer clear of actually having a girlfriend. I tell myself it’s because I’m not trying hard enough, or not settling for less than perfection. I never once think no girl will have me because of my disability.
