by Ben Mattlin
He acts completely surprised. “What? No. I—you—when?”
“I couldn’t see the clock but it was my usual leg-turning—I called and called!”
“I’m sorry,” he says, grinning nervously. “Um, I did go out briefly. Had to run to the library for a book. It was only a moment.”
I’m stunned, filled with fear-squelching hostility. He went out? He actually left me alone in the middle of the night? And surely it was longer than a moment. Left me in bed where I can’t do anything, can’t even get to the phone. I could be left alone sitting at my table, set up with a book or the electric typewriter. But not in bed. It’s my most vulnerable . . . Who would do something like that? Surely I’ve explained this to him before. Surely it’s . . . it’s unthinkable! Such negligence!
“You can’t disappear when I’m in bed,” I come back confidently. I hope I sound confident. I emphasize how immobile I am in bed. “Can’t even reach the phone,” I say. “Can I rely on you from now on?”
He nods, mumbles an apology. “I didn’t know—”
“This must never happen again.”
I’m tough. But I know there’s nothing I can do to stop him if he does disappear again. And I realize my life is now in the hands of someone I don’t trust.
***
To get to the basement office of the Harvard Independent, the student newsweekly, I have to get into my old manual wheelchair and be carried down a steep flight of steps. It’s easy enough to recruit muscular young guys eager to show off, but I’m not exactly comfortable being jostled by a wolf pack of strangers. I only visit the office once—on Comp Night, when the rules of the competition to be accepted on staff are explained. This is the way extracurricular activities work at Harvard. Everything is a competition.
There are snacks on a side table—well, bags of Doritos. I love Doritos but I’ve come without my attendant and there’s no table to pull into, no place high enough to put Doritos within my reach. So when offered I say no thanks. I say I had a big lunch. There are limits to how much help I’m willing to ask of strangers.
Actually, I can’t even decide if the problem is in me—my shyness, my physical disability itself—or something external . . . something to do with inadequate access. So I relegate Unscheduled Snacking to the category of Spontaneous Activities From Which I Must Abstain, and soldier on.
My first submission is a long feature about Harvard’s efforts to comply with new accessibility regulations. It’s accepted, published in a big two-page spread. It begins:
In the midst of the academic year and the deadlines that go with it, Harvard students—especially freshmen, who are faced with some new Core regulations—may feel frustrated, picked on, or even downright small. But the University has some new requirements to meet, too. As of September 1980, all school programs must have been made accessible to handicapped persons. With a campus as old as Harvard’s, this is certainly a challenging task, if not an outright impossibility. But a wheel-chair bound student can negotiate Harvard more easily than you might imagine. I know—I’m one, and I’ve been getting along fine.
Typically upbeat and breezy. Call it a puff piece, but I know how to please my audience.
This becomes my first experience as a sort of freelancer—writing stories in my dorm room and having someone else deliver them. My only interaction being by telephone. Not bad but I know I’ll never be a fully integrated member of the staff, never enjoy the heady camaraderie of teamwork, simply because the office is out of bounds for the “wheelchair-bound.” It occurs to me now that this is the kind of frustration I’d never admit in those days, even in an article about campus accessibility.
Still, I like writing—proud to be published on my first try, proud to have strangers stop me in the Yard to say, “Are you the guy who wrote that great article?”—and publish a few more pieces, even one cartoon. Quickly, though, the sense of being unwelcome, of being an outsider, grows burdensome. I tell my editor I’ve simply become too busy to keep up a regular flow of articles. Besides, I discover I’m not cut out to be a roving reporter. The Harvard campus is too big and inaccessible for that. So I quit the paper.
***
Three weeks before my eighteenth birthday, Ronald Reagan is elected president (for the first time). I can’t vote, but if I could I probably would’ve voted for him. I say probably because everyone I know seems to think that’s a bad idea. But I like Ronnie. I like the Republican ideal of self-determination. I certainly haven’t survived by whining and feeling sorry for myself, and the last thing I need is government pity. I also kind of relate to Reagan’s movie-soaked vision of the world, his devotion to fantasy to determine the best course of action. It’s always worked for me.
Soon, however, the Reagan Administration will seek to revoke equal-access regulations as acts of Big Government that fetter economic expansion by unfairly burdening the private sector and taxpayers. I would feel betrayed if I were paying any attention to politics.
One evening I’m heading to dinner in the Freshman Union, with Michael following behind—to be precise, we’re going through the separate wheelchair-accessible entrance. A passing fellow Canaday resident sees us and blurts, “I’ll see you later. Nine o’clock, right?”
Puzzled, I notice Michael is waving his arms frantically. The other guy suddenly glows red. I roll onto the wheelchair lift, wait for Michael to push the button. I wonder what he’s up to. What’s at nine o’clock?
I no longer trust Michael. But I can’t confront him now. I want my dinner.
Yet as we enter the dining hall, I can no longer control myself. In the safety of the crowd, I ask him about that strange little conversation outside.
“Don’t make me tell you,” he says.
I get angrier and angrier—borderline accusatory—until he finally caves. The truth: he’s throwing me a surprise birthday party. He has conspired with Alec, who doesn’t know about the other night, to host it tonight in Canaday’s Common Room.
I know I should be relieved. Flattered, even. But my attitude toward Michael has soured, so nothing feels right.
“I’ve got work to do,” I say, unconsciously channeling Chief Ironside grumpiness again, like in fifth grade. “And I don’t like surprises!”
He begs me to go along, for the sake of everybody involved. So I do. I do not believe this is why he disappeared the other night—and he doesn’t pretend it is. I’m still angry and scared. And suspicious. Is he trying to appease me, to distract me from his shortcomings?
Still, the party is a blast. The entire section of our dorm is there, along with a few other friends I’ve made plus Alec and his new girlfriend. I’m given an old Who album, the new John Lennon record Double Fantasy, and a Harvard piggy bank that still sits on my shelf today.
Alec and I haven’t spent any time together since Freshman Parents’ Weekend more than a month ago. I’m glad to see him though I haven’t missed him. He’s got his own, established cadre of brainy Lowell House friends while I’m trying to develop a hipper niche. Hipper in theory, anyway.
It’s not entirely true that our paths haven’t crossed, however. A couple of times we’ve spotted each other across the Yard or tooling down Mount Auburn Street. But we’ve exchanged few words. It usually goes something like this:
“Hey, Asshole!” he bellows at me with a big smile and wave.
“It’s the faggot!” I reply.
Laugh. Smile.
“How’s your ass?”
“Smaller than yours, freak!”
“Suck my dick!”
“Fuck you!”
I can’t yell as loudly as he does. Nevertheless, Alec guffaws at the top of his robust voice, so everyone in a hundred-mile radius can hear.
“Who is that, cursing you out?” asks a concerned passing stranger.
“My brother,” I answer.
The stranger looks confused. And I realize I am, too. Why is this what my relationship with Alec has become?
***
Thanksgiving weekend, Michael comes home
to New York with me. His family is in Colorado, too far to visit. Mother insists on hosting Turkey Day at our place just like she’s always done, only this time Bob has hired a couple of caterers to cook and serve and clean up. Mother is trying to pretend everything is normal.
In December Michael has more absences. Things start disappearing from my room. One evening I accuse him. I’m unrelenting, and he starts to cry. He swears he has not stolen from me, but confesses he has disappeared at night many times when I’m asleep. He goes out to drink, do drug deals, or meet the blonde girl from upstairs to share a few joints and screw on the Canaday Common Room sofa.
“I’m no good,” he says in tearful gasps. “All right? I admit it! I’m a liar and an alcoholic and I like drugs! I probably should be thrown out of Harvard . . . and would have been if I didn’t take this year off. But I don’t steal. I didn’t take your stuff!”
I tell him he’s betrayed my trust and he has to make it up to me. I give him another chance. After all, what are my alternatives? I have the phone numbers of a half-dozen home-care agencies but they’re expensive and it’s impossible to find a good male attendant. I don’t have a better backup plan. God, I wish Kenny could’ve come up here with me!
A few nights later John Lennon is gunned down. The Dakota is just blocks from the Beresford, my childhood home. I have a fantasy that I should have been there. This will be my generation’s Kennedy Moment, an instant frozen in memory forever.
At lunch the next day (I never go for breakfast), the Freshman Union is eerily quiet. The student body is in mourning. The radio stations play nothing but John and Beatles music all day, even bootlegs. That night there is a TV special about his life. I want to watch it. Michael has something else scheduled but promises to be back in time to turn on the TV for me. He is not.
***
Fred, one of my weekend attendants, comes with me to New York over Christmas break. He stays in Mother’s bedroom because she’s not there. She’s at Bob’s apartment on Fifth Avenue. Fred walks with me through Central Park to visit her. It’s freezing outside, and Bob’s place feels warm and bright.
In the month since Thanksgiving, Mother has been living in a rented hospital bed in his dining room. Bob has hired a full-time nurse—an efficient older woman with an adorable Irish accent. I’m sorry to have forgotten her name now.
Fred and I settle in Bob’s living room. There’s a breathtaking view of Central Park, the trees bald and stark in the winter light. Mother is escorted in, shaky in a pink and blue nightgown. The nurse leads her to a high-backed soft chair near where I’ve parked. Mother can reach my knee and pats it. A ghostly smile brightens her drawn face. She is at once wan and—to me, at least—luminous. She holds my hand and asks to hear about how I’m doing. I look at her hard, then look down. She’s thin and gray, her skin transparent.
As at her Cambridge visit, I prattle on about all the good things. I talk with intensity, with a sense of wonder at what’s different in my new life. Not the bad stuff, of course—all the while aware that my life is expanding while hers closes in.
I go on too long, though my exact words are meaningless and quickly forgotten. Mother never interrupts or contributes except to nod occasionally or blink her full-moon eyes. After forty-five minutes the nurse reappears.
“Mrs. Mattlin—uh, your mom—needs to rest now.”
I smile. She helps Mother stand. Mother touches me on the head as she shambles past. Fred, who has been quiet throughout, rises like a Marine at attention and abruptly is at my side. He is short, and I can feel his breath on my hair.
At the elevator Fred asks, “What’s wrong? What’s she got?”
“Cancer.” My one-word answer. I don’t want to talk about it.
People have asked versions of the same question about me so many times I find that I have no patience for it. Does the precise diagnosis really matter? Besides, doesn’t Fred already know my mother has cancer? It seems like everybody must know by now! In my world it’s a big event.
***
By the end of 1980, the United Nations has designated the following year to be the first International Year of Disabled Persons. Already grassroots advocacy campaigns are springing up in far-flung places, such as Singapore’s Disabled Peoples’ International. And in Louisville, Kentucky, a young activist-journalist named Mary Johnson launches a newsletter about the budding disability-rights movement called The Disability Rag, which will become an unofficial lodestar. Within a few years the Rag will be written up in the Wall Street Journal in an article Dad will send me—an article that will open me to a new consciousness about “disability culture.”
The press also alerts the world to atrocious abuse that’s going on in the nation’s nursing homes. In 1980, Congress passes the Civil Rights of Institutionalized Persons Act authorizing the Justice Department to file civil suits on behalf of residents whose rights are being violated. The campaign continues even today.
Make no mistake: The world’s consciousness of the rights of and injustices toward disabled people is being raised in many ways. Yet I stay out of that orbit. I’m too busy coping with my own crises.
***
After New Year’s comes finals. Back in Cambridge, I fire Michael and hire a new weekday attendant on my own, having watched Dad do the interviewing before. (Fred still comes on weekends but can only stay during the week for a short time.) You sort of prompt each applicant to fill in the blanks of their lives, like helping them put together a résumé, in a way, which none of them actually has. You always get two or three references and, as a last step, interview the references over the phone.
The new attendant, Tom, is blond, blue-eyed, and in his early thirties. Recently returned to Boston after a stint in the Army, Tom is a bit of a rough-and-tumble guy who smokes cigarettes, and I like the smell. I’m in a hurry to find someone, and he seems the best candidate because he’s quiet, orderly, responsible. He arrives at his interview on time and has decent references. Admittedly not much to go on.
There’s another school break after finals. Tom comes with me on the train to New York. One evening I go out with old high school friends and when they bring me home I have to wake Tom up. It’s only nine-thirty and he’s fallen asleep in what used to be Mother’s bed. I ask him for a glass of orange juice. He says okay and I wait. I sit at the dinner table and wait and wait and call him again. Alec is there but he doesn’t do anything. Tom finally comes stumbling into the room and says “What?”
“Orange juice, please.”
“All right! All right! I’m not your fuckin’ nigger, you know!”
I say, “Just wake up, man.”
(Tom is White.)
He gets the orange juice and then stumbles to the bathroom. Alec comes in, looks at me with his mouth open. He’s heard the whole thing.
The next day Bob takes the three of us to lunch at his favorite restaurant, Les Pleiades, on Seventy-fifth near Madison. When Tom gets up to use the men’s room, Alec tells Bob what happened last night. “Does he look hung-over to you?” Alec asks.
“No. It’s not something you can tell by looking,” says Bob.
“He says he was just sleeping,” I offer optimistically.
Tom returns. After lunch we go back to Bob’s, which is just around the corner, and spend a few minutes with Mother. This time she doesn’t even get out of the hospital bed. She tries to reach me through the side rail but mostly can only touch me with her eyes.
A few weeks later I have to tell Tom to leave. He’s had other drunk episodes. I make sure Fred is with me when I lower the ax, for my own protection.
Tom doesn’t protest much or make excuses. He packs a bag and evaporates.
Desperate, I call a home-health-care agency. It’s really a nurses’ registry but I explain that I’m not sick, I’m not a patient, I don’t need a nurse. The woman on the phone still doesn’t understand or can’t believe I’m calling for myself. “And who are you?” she asks me twice, as if I must be the parent or spouse of the person I
’m calling about. Of the “patient,” as she says.
She uses words like CNA and LVN and aid. These refer to levels of training, I quickly discern. I explain the tasks and let her determine the appropriate level for me.
Fred is able to stay overnight. In the morning a large cheerful man from the agency appears. His name is Bill, and he’s a bit of a matronly aunt—in manner and speech, I mean . . . perhaps I should say a “bearded aunt,” since his face is dominated by a full red beard and glasses. He is in surgical scrubs, but I like him. He’s not cool like Kenny but he’s alert and bright and responsible and understands the job at hand.
In the spare bedroom in my Canaday suite, Bill finds Tom’s leftover chicken bones hiding in the desk drawers, empty beer bottles and cans under the bed, and cigarette butts everywhere. “Oh my, oh my! I must give this room a thorough cleaning ova!” he declares in his Bostonian brogue.
After a few days Bill suggests a deal. He’ll stay on as my live-in attendant during the week but not tell the agency. “You’ll save money—or should I say your dad will save money—and I’ll make more,” he explains. “You see? Simple.”
***
The summer after my freshman year at Harvard, Bill agrees to stay in New York with me. One day in early June we walk across Central Park to Bob’s place to see Mother. The nurse greets us at the door with a long face. “I’m so sorry,” she says.
I don’t get it. “’S’all right,” I say casually, trying to cheer her up. People have been sorry for me too many times.
Mother turns her head in bed to smile at me but this time says nothing at all. She doesn’t sit up, just keeps lying there looking at me. So I talk at her.
For some reason I tell her I’m still interested in religion and how, just last night, I was reading a passage in the Torah that felt profound. It was the psalm about what is mortal man that God should be mindful of us.
I ramble on to her warm, receptive smile.
“It struck me, that’s all, how fortunate we are, all of us, and how much worse things could be and perhaps should be considering how often people aren’t good to one another,” I say.
