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Waist-High in the World
A Life Among the Nondisabled
By Nancy Mairs

Chapter One: Plunging In

I cannot begin to write this book. I've made some stabs at it, pried out of my rubbly brain a few pages, always "preliminary," from time to time. But mostly I write letters (never on time, so that the classic Nancy epistle always opens, "My apologies ..."), or read material at least tangentially related to my subject, or merely play solitaire on my computer until I try my own patience to the point of despair.

The beginning of any project is always hard, I remind myself--the bigger, the harder--so that even a thousand-word review is initially daunting. But something more is dragging at my heels this time. That's purely a metaphorical cliche, of course. I haven't walked in years now, and even the jaws of the Hound of Hell haven't any force, unless I change the metaphor to "dragging at my wheels," in which case he could slow my progress considerably. But the automatic manner in which I came up with a comparison having so little to do with my real situation helps to explain my excessive dawdling. In embarking upon this book about disability, I have committed myself to spend months contemplating issues and experiences that mark mine as an undesirable, perhaps even an unlivable, life. True, no matter what I'm doing I can no longer forget that I have multiple sclerosis, but I can dull my awareness with books or beers or computer games. Writing has the opposite effect. It absorbs my attention utterly. And I don't want to think about my crippled life.

Then the telephone rings. "This is her husband speaking," I hear George say. We have chosen not to have an unlisted number, and whenever he's around he deftly fends off carpet cleaners and bankcard representatives and the hearty alumnae/i of one alma mater or another; I do the same in his absence; ours is a partnership of equals. "May I tell her who's calling?" He listens for a moment and then says, "Well, we're about to eat dinner, but I think she can give you a few minutes." This is no junk call. Bringing the telephone into the family room where I'm watching the NewsHour while he makes dinner, he tells me, "This is Jennifer, from Virginia. She's nineteen and she thinks she has symptoms."

The voice on the line has the high, tight, little-girl quality that the speech of many women takes on when they're fighting tears. She's a college student and she's just been reading one of my essays. She doesn't say which, but I assume that it's "On Being a Cripple" from Plaintext, since that's the most widely anthologized. She hasn't even finished it yet, but she had to call as soon as she read about the blurred spot in my eye. At fourteen, she was treated for optic neuritis, which I recognize as a classic early symptom of MS, but she's never gotten an unequivocal diagnosis from a doctor. Or perhaps she has--a few are capable of forthrightness about this disease--but hasn't yet taken it in. Her new husband plainly hasn't, anyway, and so she is feeling isolated as well as scared.

"I'm pretty sure it's what I have," she winds up. "What do you think?"

I'm no neurologist, but she doesn't need a diagnosis. She's had plenty of diagnoses, too many and in conflict, as is so often the case with this baffling disease. Now she needs to talk herself into accepting the possibility that the doctors who have said "MS" are right, and as a stranger with no personal stake in her illness, I'm a safe audience. I let her talk.

"I'm sorry," she says at last. "Your husband said you're about to eat dinner. But I feel so much better just talking about MS. Maybe I could call again?"

"Of course. But maybe you should look for someone closer to home and save on the phone bill." We both laugh and say good-night.

George wasn't making up an excuse to keep Jennifer from talking too long. We really were about to have dinner. "You seem preoccupied," he comments as we eat our cheese tortollini. "Is it Jennifer?"

"Yes," I admit, meeting his smile. It goes on being Jennifer throughout the evening and into the dark, where I lie beside him with the black cat between us, the two of them sound asleep. I should have asked for her last name, I think, her address, her telephone number. Then I could ... what? What am I supposed to do about Jennifer? Take away her MS, if that indeed is what she has? Failing that, calm her fears? Give her a college degree? Transform her husband, who will almost certainly leave her, and sooner rather than later, from a scared kid into a pillar of support and sympathy? I may wish I were God, but the truth is that I can't even tie my own shoes. Jennifer would be in real trouble if she had to rely on me to organize her life.

What I'm supposed to do about Jennifer, of course, is to write a book: one in which she can recognize and accept and even celebrate her circumstances, but also one that reveals to those who care about her what needs and feelings those circumstances may engender in her. Not a text about MS in particular or disability in general, because plenty of those exist. Not a little instruction book either, since practical training is best conducted one-on-one by physical and occupational therapists, and psychological advice to so diverse an audience could comprise only the most general platitudes. More like a Baedeker for a country to which no one travels willingly: the observations and responses of a single wayfarer who hopes, in sketching her own experiences, to make the terrain seem less alien, less perilous, and far more amusing than the myths and legends about it would suggest.

Like Jennifer, I often need no more than someone to whom I can speak frankly about MS without being dismissed as a whiner (a distancing tactic often practiced by those in whom disability triggers unbearable anxiety), someone like my friend Joan. A nurse case manager who has worked with both the terminally and the chronically ill, Joan entered my life when I enrolled in a study to demonstrate the value to people with multiple sclerosis of regular support from nurses, social workers, and physical therapists. During our acquaintance, she has helped me in countless practical ways to prepare myself for George's possible death from cancer and my own relentless physical losses. But I have benefited most, I think, from her ears.

Who wouldn't? In a society that prates about, but seldom practices, communication, the craving to be listened to, heard, understood--which originates with the first terrified wail, the circling arms, the breast, the consolatory murmur--is hard to assuage. And because a cripple, in order to earn a shot at social intercourse with "normals," must never publicly lament her state, must preferably never even mention it, an other who treats disability as a safe topic of conversation offers immeasurable relief, as Jennifer's gratitude reveals.

Joan is a patient listener but hardly passive. She sits erect, eyes wide, hands loose in her lap, as though she didn't have several dozen others just like you whose stories she must soon rush off to hear. Every so often she interrupts with a brief question, which might be a request for information, or a signal that she's still with you no matter how tedious your tale, but almost never has so simple an effect. Usually, it startles me into new awareness, as when she asked, after I'd taken on at more than usual length one morning about the ways in which MS was cramping and skewing my life: "But Nancy, who would you be if you didn't have MS?"

Although I have known at least since freshman philosophy with dear, desiccated Holcomb Austin that such an intrinsically unanswerable question is not therefore imponderable, that it is, on the contrary, peculiarly and necessarily ponderable, I tend to duck rigorous duties of this sort in favor of working double-crostic puzzles, where I can count in time on laying out an answer--and only one, the right one--which, being of no consequence whatsoever, is powerless to disturb. Dozens of times, no doubt, I have let the question who I would be if I didn't have MS drift across my cerebral cortex and on out into the ether or wherever it is that spurned speculations go. But Joan's query, uttered in a high, soft voice nothing like my own, could not be so readily dismissed. It was given me, like a koan, to live with: not so much a question as a task.

Who would I be if I didn't have MS? Literally, no body. I am not "Nancy + MS," and no simple subtraction can render me whole. Nor do I contain MS, like a tumor that might be sliced out if only I could find a surgeon brave and deft enough to operate. Physiologically, lesions--sclerotic patches, or plaque, where the nerve sheath has been destroyed and scar tissue has formed in its place--have appeared throughout my brain and spinal cord: they are integrated into my central nervous system just as thoroughly as the remaining healthy tissue. Since they can be located with Magnetic Resonance Imaging, I suppose they might be cut away, but what remained would be an even less serviceable version of a "Nancy" than the one MS has fabricated.

In an academic sense, this notion isn't difficult to grasp: that I would be somehow diminished, even damaged, without MS. But experientially, just the opposite seems true. That is, I often perceive myself to be living less authentically than other people. Whether I'd feel this way if I were congenitally disabled, or if my condition were not degenerative, I'm not sure; my perceptions may be shaped by a sense of contrast with the twenty-nine years I lived before diagnosis and by the bleak knowledge that, no matter how bad my symptoms are today, they will be worse tomorrow. How can I believe that my life is real when it feels so desperately provisional? Oddly, I don't consider the lives of other people with disabilities to be similarly inauthentic. Only my own seems flimsy and counterfeit.

Feeling thus deprived of a legitimate self, I can try to imagine an MS-less Nancy. And since writing has always formed the core of my identity, the means whereby I have saved and shaped my life, I wonder in particular whether I'd have become a writer if I hadn't developed this disease. In all likelihood, I would. From the age of thirteen I claimed writing to be my "future profession." But I could not conceivably have become the writer I am. Just as demyelinated lesions have spread throughout my central nervous system, their consequences have pervaded every region of my existence. MS is as much the essence of my "I" as my father's death and my mother's remarriage, my Yankee girlhood, my conversion to Roman Catholicism, my doctorate in English literature--some of these elements chosen, some arbitrarily handed to me. It can't be stripped away without mutilating the being who bears it.

Nevertheless, I might have chosen to write in such a way as to disregard or deny or disguise the fact that I have MS. In the process, I could have made a good many people happier than I have done, since the revelation of personal shortcomings land chronic illness is definitely deemed a shortcoming! tends to rattle one's family members, especially the elderly ones, together with friends and even utter strangers who might be thought to have no stake in them at all. Moreover, I fondly suppose, I could have made a great deal more money, since many more readers are attracted to the carryings-on of bodies rising half-decomposed from the grave or tumbling half-clothed into an adulterous bed than to the quotidian truths of a body in trouble.

I could have.... I could have.... But I didn't. Why not? Because I have MS? Yes, I think so. My work has always been deliberately and deeply grounded in my own experience because that experience is all I reliably have that no other writer can give. There are readers--not a lot of them, perhaps, but even one is enough--who need, for a tangle of reasons, to be told that a life commonly held to be insufferable can be full and funny. I'm living the life. I can tell them.

What I cannot do, and would not choose to do even if I thought I could, is to depict and analyze "disability" as a global subject. The category is simply so broad, and the possible approaches to it so numerous, that all the attempts I've come across at generalizing about it run into difficulty. Theoretical books and articles do exist, though they are not always easy to track down, since the classification "disability studies" hasn't been widely adopted by bookstores, libraries, and indexes. In even the most ground-breaking and conscientious of these texts, however, like Barbara Hillyer's Feminism and Disability, the attempt to illuminate the subject as a whole tends to blur the focus and obscure significant distinctions. Then, too, by comparison with case studies, such as psychologist Ludwig Binswanger's "Case of Ellen West," and memoirs like The Little Locksmith by Katharine Butler Hathaway, the product of this global approach can make for dull reading. Yet many of the more personal accounts, though absorbing, concentrate so fully, almost claustrophobically, on the singularities of disabled life that they fail to reflect the ways in which such life is indistinguishable from any other sort: fueled by the same appetites, fraught with the same anxieties, replete with the same delights. My hope is that, in scrutinizing some of these elements common to the human condition--among them adjustment to change, body image and sexuality, the need for both independence and nurturance, the ceaseless search for equality and justice and pure pleasure--through the lens of my own experiences and those of people I know well, I can bring to life their particular significance in terms of disability.

At the outset, I want to make clear that I speak as an individual and not as a representative of "my kind," whatever you take that to be. The most acceptable designation for us just now seems to be "people with disabilities." One of the underlying problems with a comprehensive term like "disability," however, is that there has never been any universal agreement about who belongs in the company and who does not, or even what to call the presumed members. In a contest to give people like me a positive name, a man once won $50,000 for coming up with the term "people with differing abilities"--and the prize wasn't offered for the best phrase composed by a mentally impaired individual, either. Some other labels, marginally less vacuous though not necessarily more revelatory, include "handicapped" and its chipper variant "handi-capable," "physically challenged," and "developmentally delayed."

As one of my idiosyncrasies, I prefer to call myself a cripple. I have written elsewhere at length about this choice, for which I have very specific reasons. For one thing, because it is a word many people with disabilities find deeply offensive, I apply it only to myself, and so it reminds me that I am not speaking for others. For another, it lets you know what my condition is: I can't use my limbs as I once could. Blindness, deafness, intellectual impairment all qualify as "disabilities" (or "differing abilities" to people with mealy mouths), but the circumstances they impose are nothing like mine. "Mobility impaired," the euphemizers would call me, as though a surfeit of syllables could soften my reality. No such luck. I still can't sit up in bed, can't take an unaided step, can't dress myself, can't open doors (and I get damned sick of waiting in the loo until some other woman needs to pee and opens the door for me).

My choice may reflect a desire for accuracy more than anything else. In truth, although I am severely crippled, I am hardly disabled at all, since, thanks to technology and my relatively advantaged circumstances, I'm not prevented from engaging in the meaningful activities and relationships the human spirit craves. I'm not putting on a brave face here, and I'm not denying the seriousness of my situation. But I think it is very, very important to distinguish "disability," which is a social construct rather than a medical diagnosis, from some of the circumstances associated with it, often by people who have little direct knowledge of physical and mental limitations and their consequences. Like all negative terms, "disability" is part of a binary, existing in relation to a privileged opposite: that is, one is "disabled" only from the point of view of another defined by common social values as "able."

Binary thinking is merely a habit of mind, and despite the comfort of order and familiarity it offers, it doesn't apprehend reality, which is, let's face it, a frightful jumble. Gifts get handed out higgledy-piggledy. I'm so uncoordinated that I'd never have gotten any good at tennis, even if I hadn't developed MS; but then, Monica Seles probably can't write her way out of a paper bag. (This is pure speculation, and it would serve me right if she won a Pulitzer some day.) From this perspective, the phrase "people with differing abilities," however uselessly inexact, intuitively grasps life's messiness in a way that the polarity "ability-disability" does not.

"I" am disabled, then, only from "your" point of view (and "you" from "mine"). Whoever gets to define ability puts everyone else in place, which (human nature tending to define one's own as the proper place) then becomes other, outside: a cheerless and chilly spot. No wonder I prefer the self-defined "cripple." When I have occasion to refer to a class with a broader spectrum of impairments, I use the more conventional "people with disabilities," or "the disabled" for short; and people who lack them I call "the nondisabled," since in relation to me, they are the deficient ones. Already, in this way, I begin to reconstruct the world.

I have spent most of my life among the nondisabled. At first, and for nearly three decades, I was simply one myself. Even after my multiple sclerosis was diagnosed, I didn't identify myself as disabled. True, a slight limp and crushing fatigue forced me to struggle through tasks that others accomplished with ease, but I carried them out nevertheless, and I may even have made them look easy sometimes. I didn't consciously avoid people with disabilities, but neither did I seek out their company; if I found myself in it, I was aware of being different from them, with their tremors, their slurred speech, their wandering eyes, their walkers and wheelchairs and leg bags. And that's the way I would have put it--"me" and "them"--a sign of the distance I perceived between us.

Today, I remain aware during every waking moment, and also in many of my dreams, that my legs don't work, that only one of my arms works (and that not very well), that my neck strains to hold up my heavy head, that my world is hemmed by walls to be banged, that the "them" from whom I'm now divorced are the nondisabled, bounding around heedlessly and hailing one another through the empty air above my head. Since I'm not about to abandon family and old friends, most of my activities still take place among them. I no longer avoid others with disabilities, however. In fact, one of the high points of my week is the water-exercise class sponsored by the MS Society, and not just because I can walk buoyed by water as I no longer can on dry land. A couple of weeks ago, a local television crew came to film our group.

"What do you suppose people will think when they see us?" asked Amy, paddling beside me with a long snake of neon-pink foam tucked under her arms for ballast.

"`Oh, the poor things!'" I laughed. "They have no idea we're capable of having fun." I looked around the pool. There was handsome Fritz, whose MS hardly shows except in his slightly halting gait. Joe was propped in the corner, head bobbing, wasted arms and legs churning the water. With the leg bag into which her catheter empties taped neatly in place, Tune, still pretty and stylish at sixty-eight, trailed a scent of expensive perfume above the stink of chlorine. Karen didn't have a leg bag, and her urine floated in its sealed pouch on the blue surface. Chip, though shy, joined in our laughter as we tried to stay upright while our feet traced a grapevine from one wall to the other. We weren't laughing at anything in particular. Our spirits were simply high. A stranger might see us as grotesque, I suppose. Once, I probably would have done so myself. Now, each week I see a group of friends lucky enough to be free at 11:00 on a Thursday morning for an hour of exercise.

These days, I "Tell all the Truth--," in accord with Emily Dickinson's instruction, "but tell it Slant--" more literally than Emily ever envisioned. Unless you've got a bad back, you're probably reading this sitting down. Look up from the page. Look around. Imagine that this is your angle of vision not just until you decide to get up and walk to the kitchen for a cup of coffee but forever. It's not a bad angle of vision, mind you [unless you want to check how much dust has accumulated on the top of the bookcase beside your, but it is a definite one, and the world you see from it is definitely different from the one you see when you're standing. This is my perpetual view, from the height of an erect adult's waist. And the difference has consequences. This is a book about such consequences.

In the past I have written out of my own experience about disability, but I have never examined the subject systematically. Nor have many other writers to my satisfaction. Yet increasingly sophisticated medical technology ensures that more of us who are born with or develop some sort of impairment will survive, living longer and more publicly than ever before. Life expectancy has increased more than thirty years since the turn of. the century, a span that offers all kinds of new possibilities--among them, alas, the chance that illness or accident will permanently alter physical capacities. Thus, my interest in this subject, though intensely personal, is by no means private. Something without precedent is taking place, and we need a theoretical and imaginative framework for evaluating and managing the repercussions.

In writing a series of essays in which I explore the spatial and temporal exigencies of a life shaped by severe physical disability--a life bound by permissions (I have to weigh every act in terms of whether I can or cannot perform it) and obligations (I must overcome inertia to do the least thing)--I hope to discover what physical, emotional, moral, and spiritual elements shape the "differences" founded by disability. I begin with a welter of questions coalescing around several themes: language, rights, caregiving, bodies, the larger community. Then I ruminate. That's why I like the essay: it's contemplative, exploratory, even equivocal, not definitive. If there are absolute answers to the kinds of questions I can ask, I don't know them.

The essays in the first part of the book probe some of the intimate issues living with a disability raises. In the second part, I take up more public concerns. I have kept my focus throughout on the central and ambiguous reality of my title. I am literally diminished by my disability, reduced to a height of about 4' 8", consigned to gazing at navels (generally shrouded) other than my own. But diminution is not the whole of it. "Waist-high" also resonates with "knee-deep." This is no piteously deprived state I'm in down here but a rich, complicated, and utterly absorbing process of immersion in whatever the world has to offer.

This is not, however, a "feel-good" book. Too bad, because if it were, it might spend weeks on the New York Times best-seller list and make of me the wealthy woman I have always dreamed of being. In truth, I would give my eyeteeth (which narrowly escaped being knocked out along with my incisors when I fell flat on my face several years back) to write a best-seller, but this is not it. I am not now, nor have I ever been, a member of the inspirational class. I suppose you might call this instead a "feel-real" book, and reality has never been high on any popular list. I ask you to read this book, then, not to be uplifted, but to be lowered and steadied into what may be unfamiliar, but is not inhospitable, space. Sink down beside me, take my hand, and together we'll watch the waists of the world drift past.

© 1996 Nancy Mairs

Beacon Press

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