by Ben Mattlin
Mary Lois is a bit in the Captain Kirk role, it occurs to me. She has far-ranging responsibilities as a nanny and feels she must maintain a degree of decorum. Plus, she admits, she likes to be right, in control.
So I say, “Would it cause too much of a disturbance if I were to ask for a kiss?”
Later, she’ll tell me she was tempted to slap my face and walk away, but decided a better way to knock my smirk off was to go ahead and kiss me—hard, voraciously—then declare it’s time to go home.
I arrange to meet her later that night, after Dad has gotten me ready for bed and gone to bed himself. Or maybe I just decide that on my own.
Near midnight, I’m in my room, in pajamas, waiting for her. She doesn’t come, so I wheel down the hall to her room, tap the door ajar with my footrest, and softly say, “Knock knock” (because I can’t actually raise my arm to do it).
She sits in bed in her white and pink cotton nightgown and I park my chair beside. She has a small TV and we watch—honest!—a Star Trek rerun. After a while, I suggest we pick up where we left off outside. It’s always verbal with me.
After we’ve kissed a while, I urge her to undress. She shakes her head. “You’ll have to do that yourself,” she says.
“I would if I could.”
“Not tonight, it won’t happen. I have to get Jeff to camp in the morning.”
Regardless, I deliver the spiel I’ve worked out in my head. “You should know that I have weak muscles but full sensation. Everything works. I can’t climb on top, but don’t worry about hurting me. I’m not delicate. And it’s not contagious.”
She nods but doesn’t budge. Before I leave her room—before I go down the hall and wake Dad to lift me into bed—she kisses me on the top of the head. Disappointed, I nevertheless take this as encouragement.
A few days later she meets me at my apartment in the city—in its final days; we agree to go to a free outdoor Elvis Costello concert. Buses and taxis aren’t yet wheelchair accessible, so we “walk” the thirty blocks to the West Side pier. She’s in heels and a slinky pink cocktail dress, and men on the streets whistle and growl. On the return trek, I offer to ride her on my lap but she refuses. We stop for a drink. I buy her a flower. Though my intentions are carnal, I know my only chance of winning her is with cornball romance.
Back at the apartment—glad it’s still mine, for a little while longer at least—I ask if she’d prefer to sleep alone. I’m trying to be polite, but she almost seems insulted. I let her know I’m happy that she expects us to sleep together. I suggest she change in Mom’s old bathroom and not come out till I call.
My temporary attendant changes me in the other room and then politely sets me down in Mom’s old king-size bed. Once he’s left the room, I tell her the coast is clear.
More overnight dates follow. At the end of the summer we decide we don’t want this to end. I don’t know exactly what she sees in me, but I believe she’s eager to escape her small-town upbringing. In addition, she’s at a bit of a loose end work- and school-wise. I imagine she needs a calling, a sense of direction. Perhaps my complex life feels to her like something akin to a force of nature.
What she tells me is that, as a woman of just five-foot-two, she feels safe knowing I won’t dominate or hurt her physically. So ML stays on at Dad and Barbara’s and visits me in Cambridge every weekend. By the following June, though the Beresford is sold, I propose we live together. I am twenty.
Having aced the GRE but failed to get into a graduate program she likes, ML is amenable to just about anything. And I can’t take any more wrenching Sunday night departures. Every time, I cry uncontrollable torrents—only dimly aware that I’ve been saving up tears for nearly two years. Ever since Mom died.
CHAPTER EIGHT
IF NO ONE NOTICES A DISABILITY, DOES IT REALLY EXIST?
1984-1990
“For me, everything’s too much and nothing’s enough.”
—Mary Karr, Lit: A Memoir
Somewhere in Oklahoma, it’s raining big, loud drops on the echoey raised roof of my shit-brown Ford Econoline 150 cargo van. The van, which I’d bought near Boston with Mom’s life insurance money, isn’t pretty but it does the job. That is, it’s big enough to fit me in my motorized wheelchair, and pretty much all my worldly possessions. Our worldly possessions, I should say.
ML—who’s driving—and I are en route to Los Angeles. Her family is there. We’re switching coasts, switching family-roots, welding a new life together.
On the van’s intermittent radio we hear about Ronald Reagan’s reelection. The first presidential race in which I’m old enough to vote, and it’s a disappointment. We’d both cast absentee ballots for Mondale, back in Connecticut before our big departure. Somehow being a college-graduate-slash-adult means registering as a Democrat.
(The election also happens to be the first under a new Voting Accessibility for the Elderly and Handicapped law, the provisions of which I innocently circumvent by voting absentee.)
Our new life includes a wheelchair lift on the van, thanks to Connecticut’s fickle vocational rehab department, which had evaluated me as unable to drive, even with hand controls. That’s okay. A born and bred New Yorker, I don’t exactly yearn to take the wheel.
In my wheelchair, I’m strapped in behind the driver’s seat. We’ve attached a tray table to my chair to hold snacks and a book. I try reading aloud to help ML stay awake and keep us connected, but the monster van has terrible acoustics and I’m not loud enough.
It takes five days to reach her childhood home—during which she’s my only attendant. This in itself is a bold development, a turning point. I’d been resisting having her do anything custodial for me, but the payoff in privacy— from parents and from paid outsiders—tips the scales. Plus ML really wanted to. She wanted to contribute to my well-being.
During my senior year at Harvard—while she earned a master’s in education and a teaching credential—we’d shared a two-bedroom apartment in Cambridge. Bill occupied the second bedroom on weeknights, Jay on weekends. So other than occasionally turning me at night in the bed we shared, ML did none of my caretaking. (Even at that, I tried not to wake her too often.)
The problem was, the paid attendants never took as good care of me as she could. Over time she wore me down with small kindnesses that grew bigger, more personal. Such as re-shaving my sideburns to even them out. Or plucking my most egregious nose hairs. Years later I’d become suspicious, even resentful, of how, for her—to steal an apt phrase I’d glom on to from an article about someone else—the validation of serving others could become a substitute for self-directed wisdom. But at the time I came to like, then depend on, her attentions.
One day, we drove in her car to visit a friend. When it was time to go home, there was no one to help lift me back into the car. So ML tried it herself. The discovery that she could lift me was revelatory! For a woman of five-foot-two, she has surprising upper-body strength!
Accelerating our itch to fly free was the odd way Bill had grown resentful . . . territorial as a mountain lion. “Now that you’re sharing a bigger bed,” he’d announced shortly after we moved to the sunny, thin-walled Cambridge apartment, “let’s say we alternate days making the bed, hmm? I’ll do Monday-Wednesday-Friday, and you, Mary Lois, can take Tuesdays and Thursdays— type thing.”
Yet soon she lost track of the schedule she hadn’t ever really agreed to in the first place. So Bill unilaterally took to making half ‘the bed each morning. (I kid you not!) I wonder now how miffed he must’ve been to discover neither she nor I cared much whether or how the bed was made. Most days it stayed just as he left it, half-made.
ML’s haphazard housekeeping wasn’t Bill’s only target. He’d complain about Jay after the weekend shift—the way he’d parked my commode chair (a bare-bones wheelchair with a hole in the seat, which rolls over the toilet), for example. “It should be here, not there,” he’d holler, though no one but myself was around. “Tell him to cut it out!”
Bill’s idiosyncratic tantrums aside, I was learning a key skill: how to juggle multiple attendants—maximizing each one’s strengths, trading off tasks, constructing flexible boundaries, soothing egos.
Still, Bill was becoming scary. Yet the more prickly he became, the more snugly ML and I bonded. More and more it felt like us against the world.
After graduation, there wasn’t much keeping us in the Northeast Corridor. We spent the summer in Connecticut, at Dad and Barbara’s (with a new part-time helper, who didn’t last long). ML completed leftover course work and I found a temporary job at IBM. I wrote short articles for employee newsletters— one of a team of student interns at a corporation eager to flaunt its progressive hiring policies. Suit and tie every day. Somehow managed to feed myself small cheese sandwiches at lunch, with minimal help from coworkers. Hand-wrote my articles (there were plenty of secretaries to type them). Mostly I watched the clock.
That was the summer of IBM’s ubiquitous ads introducing the PC as a device so simple even Charlie Chaplin’s tramp could use it. Only I couldn’t. At least not for a few years.
Knowing the internship would end in September, I took a lot of time off to interview at magazine and book publishers in New York. But even graduating cum laude from Harvard didn’t guarantee a young man in a wheelchair so much as an entry-level proofreading job!
Alec had moved to Philadelphia, where he was building a career in survey research. And the bubbling-acid rift between Dad and me—ignited over his nagging need to sell my childhood apartment—was smoldering still. So when ML learned LA was desperately hiring teachers, we had no excuse not to go.
***
It’s a warm November evening, around sunset, when we arrive at her family’s comfortable ranch-style house in a Los Angeles suburb. Nervous energy fills the air. After a sumptuous dinner of home-smoked turkey, homemade egg bread, and I forget what else—filled with questions and answers and nostalgia—her mother vanishes and then reappears in the living room . . . dressed like a sprite or wood nymph, or maybe Robin Hood: green tights, blousy beige top with a cinch neck, and cockeyed black cap.
“Well?” she asks.
A hearty round of approval from all. ML’s younger sister is there. Her two older siblings have moved out. I smile and try not to act confused.
It turns out ML’s mom is off to a dress rehearsal at a local theater. I never do learn the name of the show.
In random discussions and over nonstop eating—the kitchen is the family center—it’s evident they’re smart and creative and loving and just the right amount of kooky. Much less formal than most families I’ve known. But what they make of me remains to be seen. (I wonder now how I’d feel if my daughter brought home a paraplegic paramour. Wouldn’t I worry whether she knew what she was getting into?)
Like Woody Allen in that scene in Annie Hall where, facing Diane Keaton’s WASP family, he imagines he’s turned into a Hasidic Jew in full black-hatted garb and peyos, I become acutely self-conscious. They’re rugged Westerners, ML’s clan. Not roughnecks but do-it-yourselfers. Which frankly seems exotic next to my background, yet rattles me because it’s so suffused with basic, hands-on physicality. After a few days, as they’re helping us move to an apartment we’ve found— particularly when her hardy, robust dad, a noted engineer and research physicist, and visiting older brother, an intimidatingly handsome aspiring screenwriter, are hauling a sofa we’d purchased—I’m painfully aware for the first time in my life of being a true cripple.
“I feel so damn useless,” I hear myself mutter.
***
Unbeknownst to us, the small apartment we’ve found is in what will become the notorious Rampart District (see the Denzel Washington movie Training Day). Our new building is actually a converted hotel built in the 1940s; we love its frowsy Art Deco vibe. It’s not entirely wheelchair accessible—I have to enter and exit the building via a steep ramp off the basement, because the front lobby has steps—but the price is right and we’re too young (read foolish) to care.
After Bill’s peevishness, we’ve decided against having another live-in attendant, so it’s just a one-bedroom. I’ll find someone for daytime, as I had in high school. ML will take evenings and weekends. Only later, when I’ll need to increase the attendant hours, will this arrangement prove a bad precedent— forcing me to ask Dad for extra money, which will feel akin to an admission of failure.
She lands work almost immediately, never mind that it’s in an overcrowded inner-city school. So I get busy dialing home-health agencies out of the phone book. Monday morning, when the agency man arrives for the first time, I’m lying nude in bed—well, in the sofa bed we’re using for now. It’s ML’s first day at work, and she mustn’t be late; I don’t remember if either of us thought even once about the dangers inherent here, leaving me alone and stark naked with a stranger.
I’m prepared to take charge, to tell the man all about me and what I need. But he is chatty. A short, stocky man in jeans and a T-shirt, he has a slight Southern accent and a scraggly reddish-brown goatee to complete the redneck stereotype. He keeps telling me he used to be a medical doctor back in Tennessee but his license isn’t recognized here.
“Can you imagine—from a medical doctor to this?” he says to drive home his disillusionment.
I try to make appropriate, responsive-but-not-encouraging noises.
“And believe me when I tell you, I don’t know how many of my patients used to hit on me. They’d grope me! Truth,” he says. “By the way, I’m gay.”
“Let’s walk down to the grocery store,” I say once I’m safely dressed and in my chair. I feel desperate to get out in the open air, around witnesses. Not that anything he’s revealed is intrinsically scary, though it seems too much information, under the circumstances. Rather, it’s something to do with his delivery that sparks a sense in me that he’s itching for a fight. The timbre of his voice maybe, or a certain squint of his eyes. Something definitely feels unstable.
Walking to the grocery store is an alien concept in LA. But with my cracker ex-doctor oddball beside me, I find one—a sort of oversized bodega down the street, on the edges of Koreatown. Inside, I get flustered—the brands are different. I can’t find what I’m looking for.
That evening, ML and I go out for dinner and I can’t stop shaking.
Nevertheless, dunce that I am on the cusp of twenty-two, I let the frightening attendant come again the next day and for a few days after that … maybe it’s me, I reason. Maybe I’m prejudiced. Maybe I need to find a way to work with him . . . because, really, what choice do I have?
On Friday, finally, I place a classified ad in the LA Times. Over the weekend I conduct interviews. ML meets them all—the various unskilled, curious applicants who show up—but mostly stays out of the way, her distaste for these encounters barely suppressed. They are—or can be—rare windows into another slice of life, a set of different socioeconomic backgrounds. Sometimes this is wonderful—a kind of eye-opening multiculturalism—but other times it’s just awkward, grating, even incendiary. I’ve known it to go both ways, frankly. I wish I didn’t sound so hardened about it, but that’s the way it is.
It’s my choice, ML declares, not hers; already she’s gleaned how fragile my authority can be with newcomers, how easily I’m assumed to be the patient to take care of, instead of the one who must be listened to and pleased.
So, I hire a young man—let’s call him Peter. I’m perhaps too quick to overlook Peter’s spotty history. He’s younger than I am and even newer to LA. His only reference is his grandmother in Denver. But I like him and I’m desperate.
Peter and I get along fine despite his constantly tuning my stereo to country music. Afternoons, after I’ve sent out all the résumés I can for the day, I have nothing to do and Peter and I watch old sitcom reruns on TV. It’s boring yet it becomes addictive. I know I should be doing something worthwhile, but what? Every day I scrounge employment ads—publishers, editors, journalists, writers, proofreaders, etc.
I network with anyone I know—from Harvard’s career services office to friends of friends. I score several interviews, which go smoothly. Then, nothing.
In fairness, part of the problem is I’m not suited for entry-level work. I can’t be a “copy boy,” jockeying papers here and there. I can’t sort mail or run after burning news stories. I can’t type (enter data, interface with a terminal— whatever the current expression is) quickly enough. I know I can write well, given the opportunity, and believe I can edit others. But such brainy, specialized, nonphysical jobs are reserved for those with basic experience already under their belts.
Nevertheless, I’m gradually forced to consider whether people could be judging me harshly because I’m in a wheelchair. Not just in a wheelchair. Let’s be honest. I’m disabled from head to toe. My spine is twisted, and I’m utterly bereft of musculature.
I hesitate to admit this. I still believe I can pass. I’m not up to accusing anyone of unfair treatment, even in the abstract. But intellectually I know that denying the possibility would be foolish.
Practical questions surge up. Do I mention my disability when I apply for a job? Does it belong on my résumé? I mean, what difference should it make? Most of the disability literature I see doesn’t address such real-world conundrums (bedsores and flat-tire repairs galore, however!), but that’s changing, too. Somewhere I read that it’s better to take control of employment questions under your own terms. So, when scheduling interviews—on the phone beforehand, not on my résumé or in my cover letters—I start asking if there are any steps or other obstacles for which I’ll need to plan ahead. But potential employers still seem taken aback when they meet me.
Not until this post-college stage have I ever felt so “handicapped” by my disability.
***
One midday the phone rings. From my new speakerphone emanates the voice of one of my career-networking contacts, who’s heard of an opening at the LA Business Journal. The editor wants to meet right away.