Excerpt from

Nancy Mairs, Waist-High in  the World

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.
. . . . . . . .

    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 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 ass (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 ass 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 Mafleus Male ficarum 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 (i) 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 ac commodate 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?