Body In Trouble
"CONCEPTUALIZE the body" I was instructed by the organizers of a conference at which I had been invited to speak a couple of years ago, and I balked. Something was wrong with this syntax, as though I myself -my thinking self- were no body, as though this disembodied self could speak not only for the body that it is not but for bodies in general (presumably human ones, though nothing in the directive actually debarred my corpulent corgi from my deliberations). The effect of the assignment seemed to me to divorce the speaking subject from her own corporal existence while permitting her to make free, in the chastest of senses, with the bodies of others. But why did my lecture topic--not at all an odd one at a feminist conference--strike me as so problematic?
I was squeamish about grammar in this case for at least a couple of reasons, both of which have to do with my reality as a body who has been in trouble of one sort or another for almost as long as I can remember. The first is that this construction reinforces the age-old Western dichotomy between mind, active and in control, and body, that wayward slug with which it is afflicted. Sheer knowledge of our bodies has helped dispel that myth. Before advances in medical technology began permitting us to illuminate and scrutinize our mysterious mute inner reaches, the terrain beneath the skin might well have seemed alien, even wholly separate from our "true" being. No longer. Recently, when an intestinal disturbance required my husband to have a colonoscopy, I sat in the corner and watched on a television screen as a minute camera zoomed through the glistening roseate chambers of his large bowel, thereby becoming one of the few women in the world who can truly profess that she knows and loves her partner both inside and out. In fact, since George slept through the whole procedure, I can now claim to know him more fully than he knows himself.
Over the years, as George's melanoma has moved from his skin through his lymphatic system into his belly, necessitating surgery and then chemotherapy, and as my multiple sclerosis has immobilized me, we have had to come to terms with ourselves as bodies. The physical processes of a perfectly healthy person may impinge so little on her sense of well-being that she may believe herself separate from and even in control of them. From here it's a short leap to the conviction that cerebral phenomena are of a different, generally higher, order than other bodily events and thus possess transcendent and even immortal qualities, at which point the imagined mind becomes the even more fantastic soul.
The body in trouble, becoming both a warier and a humbler creature, is more apt to experience herself all of a piece: a biochemical dynamo cranking out consciousness much as it generates platelets, feces, or reproductive cells to ensure the manufacture of new dynamos. When it became clear that the somatic basis of the depressive symptoms that had plagued me since adolescence required sustained biochemical intervention, I resisted.
"But I won't be myself if I have to take drugs!" I wailed to my therapist.
"I think," he replied, "that you're more yourself when you're medicated than when you're not." I had no self, I finally recognized, apart from my brain chemistry, but with it I had my choice of two: the self who starved and lay awake night after night and spent every conscious minute trying to postpone suicide, or the self who swallowed her pills and got on with her life. I am in every way, in my dreams as in my waking, the creature of my biochemistry. The body alone conceptualizes the body, conferring upon it, among other dubious endowments, a "mind."
But whose body? My second misgiving about my task arose from the two ways in which the phrase "the body" may be read: one reduces the speaker's flesh to a thing ("the body," not the true me), and the second suggests that one can universalize bodily experiences that may be in reality entirely idiosyncratic ("the body," not mine necessarily). For years after I began to have symptoms of MS, I used language to avoid owning them: "The left hand doesn't work anymore," I said. "There's a blurred spot in the right eye." In distancing myself from my ravaged central nervous system, I kept grief at bay; but I also banished any possibility of self-love. Only gradually have I schooled myself to speak of "my" hands, "my" eyes, thereby taking responsibility for them, though loving them ordinarily remains beyond me.
So, then: my body. And only my body. The specificity of the personal pronoun is critical to me (and to this book) because the range of bodies with disabilities is so exceptionally broad that I could not possibly speak for them all and do not wish to be perceived as trying to do so. This problem exists for any population, of course, as white middle-class academic feminists rapidly found out when they began to generalize about women, but the label "disability" masks a diversity of even more incomparable lives. What in my experience has prepared me to portray the realities of an old woman with Alzheimer's, even though we are both female; or a teenager with muscular dystrophy, even though neither of us can walk; or a young man with schizophrenia, even though I too have been confined to a mental hospital; or my niece whose eyes were removed when she was ten, even though we are blood kin? I would not presume to conceptualize their bodies. I can only represent my own experience as authentically as the tricks and vagaries of language will permit, trusting others to determine what similarities we share and make use of them as they see fit.
Here is my troubled body, dreaming myself into life: a guttering candle in a mound of melted wax, or a bruised pear, ripe beyond palatability, ready for the compost heap. The images, though they vary, always bear the whiff of spoliation. If there ever was a time of unalloyed love, I have long forgotten it, though I had hopes in early adolescence: that my breasts would grow magically larger and my mouth magically smaller; that I would become a strong swimmer and sailor and cyclist; that men, irresistably drawn, would touch me and I'd burst into flame. Mostly I was, as I was trained to be, disappointed in myself. Even in the fifties, before the dazzle of shopping malls and the soft pornography of advertising for every product from fragrance to bed linen, a girl learned to compare herself unfavorably to an ideal flashed at her on glossy magazine covers and cinema screens and then to take measures to rectify her all too glaring deficiencies. I started painting my lips with Tange'e when I was eleven, polishing my fingernails as soon as I stopped biting them, for my first great love at thirteen, plucking my eyebrows and wearing green eyeshadow at sixteen. I strapped on padded bras and squeezed into pantiegirdles to ac-centuate the positive and e-liminate the negative. I could not imagine a body that didn't require at least minor structural modification.
I still can't, and neither can any other woman I know. Not long ago, my mother and I shared a mirror as we put on faces for a festive evening. "I hate these," she said, drawing her fingers down the lines from the corners of her mouth, "and this," patting the soft sag of flesh under her chin. I didn't try to protest, though she is a pretty woman, because I hate the same features now developing in my own face. One sister's breasts hang down, she laments, and the other's hips are too broad; my mother-in-law's bosom is too ample; even my daughter, possessed of a body too shapely for complaint, rues her small round nose. All these women, ranging in age from thirty to eighty-four, are active and fit, and fortunately they are too absorbed by their demanding lives to dwell upon whatever defects they perceive themselves to dis play. None could be considered vain. Not one has mutilated herself with rhinoplasty or liposuction or any of the other measures cosmetic surgeons have developed for emptying women's pockets into their own. Their dissatisfaction with their bodies seems as natural to them as their menses or hot flashes, simply an element of womanly existence.
Even if I hadn't developed MS, then, I would probably view myself with some distaste. But by the time I was thirty, I walked with a limp and used a cane. By forty, I wore a brace on my left leg and used a motorized scooter to cover all but short distances. Now, in my fifties, I divide my time between wheelchair and bed, my belly and feet are swollen from forced inactivity, my shoulders slump, and one of my arms is falling out of its socket.
The other day, when my husband opened a closet door, I glimpsed myself in the mirror recently installed there. "Eek," I squealed, "a cripple!" I was laughing, but as is usually the case, my humor betrayed a deeper, darker reaction. We have almost as many mirrors as a fun house, to give our small quarters an illusion of space, but I avoid looking into them straight on, and I dislike the objective evidence of photos as well. ("If I don't see you," my sister used to tease, her hands over her eyes, "you can't be you!") I love my wheelchair, a compact electric model called a Quickie P100, and I've spent so much time in it, and become so adept at maneuvering it, that I have literally incorporated it-- made it part of my body-- and its least ailment sends me into a greater tizzy than my own headaches. But the wheel-chair I experience is not "out there" for me to observe, any more than the rest of my body is, and I'm invariably shocked at the sight of myself hunched in its black framework of aluminum and plastic.
Although-- or perhaps because-- I am appalled by my own appearance, I devote an absurd amount of time and expense to its decoration. "Not for Mom peignoirs and pillows as she takes to her bed," my daughter points out. "No, she still likes to get out and find just the right color turtleneck or the perfect pair of black leggings." The green eyeshadow of youth has proliferated into every color of the rainbow, as well as a number that don't appear there, and been joined by foundation, mascara, blusher, and lipstick, not to mention the creams and lotions used to prepare the relentlessly wrinkling surface for this palette. I dread the day when my fingers become so weak that I have to go into the world with my bare face hanging out.
Already I can no longer dress myself, and I quip about moving to a climate so temperate that I wouldn't need any clothing at all, but in truth, of course, I could bear to hang out my bare body even less than my bare face. I buy garment after garment in the hope of finding one that will fit well enough to clothe me in some tatter of grace. Designers conceive tall bony pubescent bodies swinging down runways to some hectic beat on skinny but serviceable legs, and even the apparel that makes it to the outlet stores where I shop is cut for a lithe erect form in motion. This is who I want to be, of course, and so I cruise the aisles searching for a magic cloak that will transform me into her.
The "her" I never was and am not now and never will become. In order to function as the body I am, I must forswear her, seductive though she may be, or make myself mad with self-loathing. In this project, I get virtually no cultural encouragement. Illness and deformity, instead of being thought of as human variants, the consequence of cosmic bad luck, have invariably been portrayed as deviations from the fully human condition, brought on by personal failing or by divine judgment. The afflicted body is never simply that-- a creature that suffers, as all creatures suffer from time to time. Rather, it is thought to be "broken," and thus to have lost its original usefulness; or "embattled," and thus in need of militaristic response, its own or someone else's, to whip it back into shape, or "spoiled," and thus a potential menace to the bodies around it. In any case, it is not the sort of thing your average citizen would like to wake up next to tomorrow morning.
To embrace such a self requires a sense of permission some people achieve more readily than others. George's body, like mine, has been battered by aging and illness. Liver spots have appeared on the backs of his hands and crow's feet at the corners of his eyes and white hairs on his beard. He bears a puckered scar on his right upper arm. A second scar, in his right armpit, is invisible, but his right breast sags where the muscles were severed. A third runs the length of his abdomen; the surgeon boasted of his handiwork, but frankly George's reconstructed navel looks a little improvised. For several years now he has been impotent, and although I miss his erections sadly, he does not. "I'm at peace with my body," he says. I am at a loss to explain his complacency except as the habit of a lifetime of believing that whatever way he is is as he ought to be, a confidence that seems to arise in part from the possession of a penis, whether that organ itself still rises or does not. He senses himself to be "all right," revising his self-image as necessary to maintain this equilibrium, just as reflexively as I feel myself to be "all wrong."
In fact, he is also at peace with my body in a way that I am not. He always has been, and now that I can do little for myself, he rubs in lotion and sprays on scent, clips nails and stray hairs, wrestles stockings onto my rubbery legs, lifts me off toilets in women's rooms from Los Angeles to London. His ministrations, combining skill with sensuality, reassure me that this is the body he has loved since he first set eyes (or, if recent research is correct, nose) on it thirty-five years ago. Not long ago, a young clerk in a Victoria's Secret shop, joining in our deliberations over assorted styles and colors of underpants, was clearly startled by George's experienced and critical eye. Settling on a couple of briefs, in a sensible cut but a sexy fabric, he explained that he was the one who had to get me into them, but she still seemed to find his expertise-- so patently nonprurient, rather like my grandmother's-- a little kinky. Which was, he'd doubtless point out, her problem, not his. The peace he feels with his body has rendered him secure enough in his sexual identity that he enters and exits feminine space with aplomb. George's attentive and affectionate presence provides proof against the revulsion with which I am all too apt to greet myself; and even his easier peace depends in part, I am sure, on the fact that my body has remained crazy about his body throughout its vicissitudes.
I doubt that any body, whether in trouble our out, can fully conceive a self without an other to stroke it-- with fingertips and lips, with words and laughter-- into being and well-being. Research has demonstrated that infants deprived of touch fail to thrive, and that blood pressure is lowered and spirits are raised in elderly people given pets to caress. If physical stimulation is wholesome-- even lifesaving-- at the extremes of life, why should we suppose the middle to be any different? Our bodies conceptualize not only themselves but also each other, murmuring: Yes, you are there; yes, you are you; yes, you can love and be loved.
I have been fortunate, as many people with disabilities are not, to have had throughout my adult life someone who loves me into being in just this way. Recently, when George and I were sharing memories of a friend with rheumatoid arthritis who had just died unexpectedly, I recalled an April morning years ago at the school where the three of us, close contemporaries, were teaching. "It's spring," Jill sighed as she thumped into the chair beside mine in the faculty room. "How I wish I had someone to love!" I was startled by this revelation. Still newly and mildly disabled myself, I hadn't yet given much thought to the sexual predicament in which a crippled body may find herself. Jill had developed arthritic symptoms in infancy, although not until she was in college did she damage to her joints really limit her mobility. She might not have been a pretty woman even without arthritis; as it was, she had the receding chin and twisted fingers characteristic of thiss disease, together with the "moon" face caused by anti-inflammatory drugs, and she moved slowly, stifflegged, on crutches. Outgoing and energetic, she could on occasion overwhelm those around her with criticisms or demands, but despite her prickliness, she was warm and funny and had many devoted friends. I don't suppose she ever had the lover she wished for, though.
Desire depends very little on physical perfection or prowess. Desirability, alas, depends on these a great deal. Perhaps the sociobiologists are correct in theorizing that we are attracted to those who appear most fit for reproduction; or perhaps we merely want whatever we are trained to want. Regardless of origin, standards of beauty and sources of arousal may vary from culture to culture, but every culture has them; and ours, at least, rigorously excludes most physical defects. A man with a slight limp or a patch over one eye, suggesting a wound from some heroic action, might still be considered dashing (though so many years have passed since the last "honorable" war that this effect may have worn off), but if he requires a wheelchair or a guide dog, he is likely to be viewed as a problem rather than a sex object. And although a condition that doesn't cause outright disfigurement, such as deafness, may be tolerated in a woman, I can't think of a single sign of injury or illness that would actually confer cachet.
On the contrary, the general assumption, even among those who might be expected to know better, is that people with disabilities are out of the sexual running. Not one of my doctors, for example, has ever asked me about my sex life. Most people, in fact, deal with the discomfort and even distaste that a misshapen body arouses by dissociating that body from sexuality in reverie and practice. "They" can't possibly do it, the thinking goes; therefore, "they" mustn't even want it; and that is that. The matter is closed before a word is uttered. People with disabilities can grow so used to unstated messages of consent and prohibition that they no longer "hear" them as coming from the outside, any more than the messengers know they are "speaking" them. This vast conspiracy of silence surrounding the sexuality of the disabled consigns countless numbers to sexual uncertainty and disappointment.
Many years ago, I concluded an essay called "On Not Liking Sex" with the speculation that I might one day write another on liking sex. This, I guess, constitutes that long-deferred essay. I really do like sex. A lot. Especially now that the issues of power and privacy that vexed me then have resolved themselves with time. Unfortunately, I like intercourse best of all, and the knowledge that I will never experience that again shrouds me in sexual sadness. I have elected, after years of struggle, to remain faithful now to George; but even if I had not, I am aware that men no longer look at me "that way." This might well be so even if I weren't crippled, since a woman in her fifties does not arouse most men to passion, but my wheelchair seals my chastity. Men may look at me with pity, with affection, with amusement, with admiration, but never with lust. To be truthful, I have so internalized the social proscription of libido in my kind that if a man did come on to me, I'd probably distrust him as at least a little peculiar in his erotic tastes.
Anyway, except for George, I no longer look at men "that way" either. Whatever complicated motives-- and the urge to prove that I was still desirable even though disabled certainly lurked among them-- drove me in my twenties and thirties into the arms of a series of men have long since lost their force. I still like sex, but only with George, who cannot give me intercourse. But on this of all days, the fifth anniversary of his last cancer surgery, when against all odds he is not merely alive but well, when he will soon return from a full day's work and take me out for a celebratory dinner, I am mindful that sorrow, sexual or otherwise, does not necessarily bleed away life's sweetness. In fact, the consequences of George's impotence have been surprisingly mixed, since in precluding intercourse it has forced us to discover alternative means to intimacy.
Oddly and ironically, my disability provides one of these. I've heard it said that a sexual relationship cannot be sustained when one partner provides routine care to the disabled other. Perhaps so, if the relationship depends heavily on glamour, as I suppose a good many do. After thirty-five years of acquaintance, and with two catastrophic illnesses, if we demanded enchantment, we'd be sorely let down. Our bodied hold few mysteries for each other. Once you've helped your wife change her wet pants, or watched the surgeon pop a colony of E. coli from the healing wound in your husband's belly, you have seen behind all the veils. I don't know what the sexual bond between us relies on, but it's not sorcery. The routine of caregiving doesn't seem to diminish our attraction; George's impotence, which has a physiological rather than a psychological basis, doesn't usually discourage either of us from lovemaking. And because we have grown so familiar with each other's physical realities, we love each other more unabashedly and inventively as time goes on.
Whether for making love or not, our bodies-- one twisted and nearly inert, the other scarified, both softening now with age and indulgence-- instinctively seek each other out. Even our most mundane interactions bear an erotic charge. I don't mean that we pant and grope every time he tugs my sweater over my head or adjusts my bedclothes. Rutting adolescence lies many years in our wake. But he may stroke my neck when he brings me a cup of coffee. And since my wheelchair places me just at the height of his penis (though Cock-High in the World struck me as just too indecorous a book title), I may nuzzle it in return. We carry on a constant, often hardly conscious, corporeal conversation regardless of our other pursuits and preoccupations. Without my disability to throw us together thus habitually, our bodies might spend their days racing separately from one activity to another coming across each other only in time to tumble into sleep.
The panic George's illness arouses in me stems in part from dread of the day when, without his steady and tender regard, I will have to keep my self going. Increasingly, as a body, I am turning into a set of problems: a bulk to be raised from the bed and maneuvered from one location to another; long, awkward arms and legs to be thrust into sleeves and pantlegs, stockings, shoes; a stomach to be filled time and time again; hair and teeth to be kept clean and nails to be pared; bladder and kidneys to be kept free from infection; buttocks to be monitored for signs of decubiti. Made not just of flesh and blood but of metal and rubber, I must be loaded into the van, tied down, seatbelt fastened in order to be transported anywhere, then unfastened, untied, unloaded at my destination. The absence of curb cuts, the presence of even one step, too narrow a door-- all present obstacles.
No one but George, I fear, has reason to see me as more than the sum of my problems. Without him I would feel reduced to my nuisance value. I am terrified, against all reason, of being abused in retaliation. No one has ever, except by accident, hurt me. Matthew himself recalls most poignantly "The Day I Knocked Mom Down": "We were all arguing around the dining room table, raised voices, red faces, the whole deal. Hell, I can't even remember what we were going on about, something to do with my latest badness I suppose, but at any rate, fuses were short and I was leaving the realm of rational thought. Then my mother, innocently enough, tried to leave the table; god knows what I was thinking or why it was so important to finish my point, but I did try to shove her back into her chair. And those next few seconds will certainly follow me forever. The look of shock on her face as she collapsed, missing the chair entirely, the pure anger emanating from my dad (angriest I've ever seen him), the knowledge that I really had to go now and that something had changed forever and that there would be no returning from this event, these are the impressions that remain of that moment."
He can't have been more than sixteen, a hot-headed clumsy adolescent, and I would give anything to eradicate this mischance from his memory. Too much time has passed for it to serve us. For a while it made me wary of him, true, in the way that I was nervous about driving after a car bashed the rear end of my Kharmann Ghia when I braked at a yellow light in 1964. I drove for twenty-five more years, though. I go on mothering Matthew with the same ease.
He does not pose the threat I feel. Instead, I have visions of enduring life at the hands of strangers: refused food or drink, shoved roughly into bed, allowed to slip from my wheelchair and abandoned in a puddle of my own urine. These horrors, arising naturally, if irrationally, from physical helplessness, reflect an utter lack of self-regard. This is not what George has taught me. If I don't want to be reduced to a constellation of problems, I must imagine my body as something other than problematic: a vehicle for enmeshing the life I have been given into the lives of others. Easy enough to say. But to do? Who will have me? And on what terms?
In biblical times, physical and mental disorders were thought to signify possession by demons. In fact, Jesus's proficiency at casting these out accounted for much of his popularity among the common folk (though probably not among swine). People who were stooped or blind or subject to seizures were clearly not okay as they were but required fixing, and divine intervention was the only remedy powerful enough to cleanse them of their baleful residents.
Theologically as well as medically, this interpretation of the body in trouble now seems primitive, and yet we perpetuate the association underlying it. A brief examination of "dead" metaphors (those which have been so thoroughly integrated into language that we generally overlook their analogical origins) demonstrates the extent to which physical vigor equates with positive moral qualities. "Keep your chin up," we say (signifying courage), "and your eyes open" (alertness); "stand on your own two feet" (independence) "and tall" (pride); "look straight in the eye" (honesty) or "see eye to eye" (accord); "run rings around" (superiority). By contrast, physical debility connotes vice, as in "sit on your (455)" (laziness), "take it lying down" (weakness), "listen with half an ear" (inattention), and get left "without a leg to stand on" (unsound argument). The way in which the body occupies space and the quality of the space it occupies correlate with the condition of the soul: it is better to be admired as "high-minded" than "looked down on" for one's "low morals," to be "in the know" than "out of it," to be "up front" than "back-handed," to be "free as a bird" than "confined to a wheelchair."
Now, the truth is that, unless you are squatting or six years old, I can never look you straight in the eye, and I spend all my time sitting on my (455) except when I'm taking it lying down. These are the realities of life in a wheelchair (though in view of the alternatives-- bed, chair, or floor-- "confinement" is the very opposite of my condition). And the fact that the soundness of the body so often serves as a metaphor for its moral health, its deterioration thus implying moral degeneracy, puts me and my kind in a quandary. How can I possibly be "good?" Let's face it, wicked witches are not just ugly (as sin); they're also bent and misshapen (crooked). I am bent and misshapen, therefore ugly, therefore wicked. And I have no way to atone. It is a bind many women, not just the ones with disabilities, have historically found themselves in by virtue of their incarnation in a sociolinguistic system over which they have had relatively little power. (Notice how virile the virtues encoded in the examples above.) Female bodies, even handsome and wholesome ones, have tended to give moralists fits of one sort or another (lust, disgust, but seldom trust). As everyone who has read the Malleus Maleficarum knows, "All witchcraft comes from carnal Lust which is in Women insatiable." If a good man is hard to find, a good woman is harder, unless she's (1) prepubescent, (2) senile, or (3) dead; and even then, some will have their doubts about her. It is tricky enough, then, trying to be a good woman at all, but a crippled woman experiences a kind of double jeopardy. How can she construct a world that will accommodate her realities, including her experience of her own goodness, while it remains comprehensible to those whose world-views are founded on premises alien or even inimical to her sense of self?
Disability is at once a metaphorical and a material state, evocative of other conditions in time and space-- childhood and imprisonment come to mind-- yet "like" nothing but itself. I can't live it or write about it except by conflating the figurative and the substantial , the "as if" with the relentlessly "what is." Let me illustrate with an experience from a couple of years ago, when George and I went to a luncheon honoring the Dalai Lama held at a large resort northwest of Tucson. Although we were not enrolled in the five-day workshop he had come here to lead, we found oruselves in the hallway when the meeting room disgorged the workshop participants-- all fourteen hundred of them-- into a narrow area further constricted by tables laden with bells, beads, and brochures. And let me tell you, no matter how persuaded they were of the beauty and sacredness of all life, not one of them seemed to think that any life was going on below the level of her or his owwn gaze. "Down here!" I kept whimpering at the hips and buttocks and bellies pressing my wheelchair on all sides. "Down here! There's a person down here!" My only recourse was to roll to one side and hug a wall.
Postmodern criticism, feminist and otherwise, makes a good deal of the concept of wall-hugging, or marginality, which is meant to suggest that some segment of the population-- black, brown, yellow, or red, poor, female, lesbian, what have you-- is shouldered to the side, heedlessly or not, by some perhaps more numerous and certainly more powerful segment, most frequently wealthy, well-educated Euro-American males. Regardless of the way marginality is conceived, it is never taken to mean that those on the margin occupy a physical space literally outside the field of vision of those in the center, so that the latter trip unawares and fall into the laps of those they have banished from consciousness unless these scoot safely out of the way. "Marginality" thus means something altogether different to me from what it means to social theorists. It is no metaphor for the power relations between one group of human beings and another but a literal description of where I stand (figuratively speaking): over here, on the edge, out of bounds, beneath your notice. I embody the metaphors. Only whether or not I like doing so is immaterial.
It may be this radical materiality of my circumstances, together with the sense I mentioned earlier that defect and deformity bar me from the ranks of "good" women, which have spurred me in the past, as they no doubt will go on doing, to put the body at the center of all my meditations, my "corpus," if you will. Not that I always write about the body, though I often do, but that I always write, consciously, as a body. (This quality more than any other, I think, exiles my work from conventional academic discourse. The guys may be writing with the pen/penis, but they pretend at all times to keep it in their pants.) And it is this-- my-- crippled female body that my work struggles to redeem through that most figurative of human tools: language. Because language substitutes a no-thing for a thing, whereas a body is pure thing through and through, this task must fail. But inevitable disappointment does not deprive labor of its authenticity.
And so I use inscription to insert my embodied self into a world with which, over time, I have less and less in common. Part of my effort entails reshaping both that self and that world in order to reconcile the two. We bear certain responsibilities toward each other, the world and I, and I must neither remove myself from it nor permit it to exclude me if we are to carry these out. I can't become a "hopeless cripple" without risking moral paralysis; nor can the world, except to its own diminishment, refuse my moral participation.
But is a woman for whom any action at all is nearly impossible capable of right action, or am I just being morally cocky here? After all, if I claim to be a good woman, I leave myself open to the question: Good for what? The most straightforward answer is the most tempting: Good for nothing. I mean really. I can stand with assistance but I can't take a step; I can't even spread my own legs for sex anymore. My left arm doesn't work at all, and my right one grows weaker almost by the day. I am having more and more trouble raising a fork or a cup to my lips. (It is possible, I've discovered, though decidedly odd, to drink even coffee and beer through a straw.) I can no longer drive. I lack the stamina to go out to work. If I live to see them, I will never hold my own grandchildren. These incapacities constitute a stigma that, according to social scientist Erving Goffman, removes me from normal life into a "discredited" position in relation to society.
From the point of view of the Catholic Church, to which I belong, however, mine must be just about the ideal state: too helpless even for the sins other flesh is heir to. After all, parties aren't much fun now that I meet the other revelers eye to navel, and getting drunk is risky since I can hardly see straight cold sober. No matter how insatiable my carnal Lust, nobody's likely to succumb to my charms and sully my reputation. But I am, by sympathy at least, a Catholic Worker, part of a community that wastes precious little time fretting about the seven deadlies, assuming instead that the moral core of being in the world lies in the care of others, in doing rather than being good. How can a woman identify herself as a Catholic Worker if she can't even cut up carrots for the soup or ladle it out for the hungry people queued up outside the kitchen door? Physical incapacity certainly appears to rob such a woman of moral efficacy.
Well, maybe moral demands should no longer be placed on her. Perhaps she ought simply to be "excused" from the moral life on the most generous of grounds: that she suffers enough already, that she has plenty to do just to take care of herself. This dismissive attitude tends to be reinforced when the woman lives at the height of your waist. Because she "stands" no higher than a six-year-old, you may unconsciously ascribe to her the moral development of a child (which, in view of Robert Coles's findings, you will probably underestimate) and demand little of her beyond obedience and enough self-restraint so that she doesn't filch candy bars at the checkout counter while you're busy writing a check. (God, I can't tell you how tempting those brightly wrapped chunks are when they're smack up against your nose.) "Stature" is an intrinsic attribute of moral life, and the woman who lacks the one may be judged incapable of the other.
I am exaggerating here, of course, but only a little. Beyond cheerfulness and patience, people don't generally expect much of a cripple's character. And certainly they presume that care, which I have placed at the heart of moral experience, flows in one direction, "downward": as from adult to child, so from well to ill, from whole to maimed. This condescension contributes to what Goffman calls "spoiled identity," though he does not deal satisfactorily with the damage it inflicts: without reciprocity, the foundation of any mature moral relationship, the person with a defect cannot grow "up" and move "out" into the world but remains constricted in ways that make being "confined to a wheelchair" look trivial. And so I would say that while it is all right to excuse me from making the soup (for the sake of the soup, probably more than "all right"), you must never-- even with the best intentions, even with my own complicity-- either enable or require me to withdraw from moral life altogether.
So much for carrot-cutting, then, or any other act involving sharp instruments. But wait! On sharp instrument is left me: my tongue. (Here's where metaphor comes in handy.)
And my computer keyboard is ... just waist high. With these I ought to be able to concoct another order of soup altogether (in which I'll no doubt find myself up to my ears). In other words, what I can still do-- so far-- is write books. Catholic Workers being extraordinarily tolerant of multiplicity, on the theory that it takes all kinds of parts to form a body, this activity will probably be counted good enough.
The world to which I am a material witness is a difficult one to love. But I am not alone in it now; and as the population ages, more and more people-- a significant majority of them women-- may join me in it, learning to negotiate a chill and rubble-strewn landscape with impaired eyesight and hearing and mobility, searching out some kind of home there. Maps render foreign territory, however dark and wide, fathomable. I mean to make a map. My infinitely harder task, then, is to conceptualize not merely a habitable body but a habitable world: a world that wants me in it.