RELATIVELY DISABLED

Then Clement, the cobbler, cast off his cloak,

And offered it for barter at the game of New Fair.

 
Then Hick, the horse-dealer, wanting to swap his hood, which was worth less than the cloak, offered his hood and a forfeit in a cap—put his "hand in the cap." He and Clement picked an umpire, who decided the "boot," the size of the forfeit that made the exchange equal. Thus, with the odds set, they finished the sport of the exchange, and in Langland's The Vision of Piers Plowman we have the first episode of handicapping in English literature. From the fourteenth-century tavern-lottery to the twentieth-century notion of physical hindrance, handicap odds have been socially defined.

"Handicapped," "disabled," "challenged." Any term we use to describe people whose bodies and minds do not conform to an expected norm quickly becomes pejorative, as "discrimination"—drawing fine distinctions between superficially similar ideas or things—takes a socio-psychological twist and becomes "discrimination"—the assumption that people excluded from one's own group can be defined in terms of group identity without reference to individual merit. Of course, it's hardly news that the handicapped/disabled/challenged, in addition to suffering the physical hassles that accompany living in a society designed for others' needs, have to struggle with discrimination that sees their disability as the sum total of their individuality. But my own experience in the past three years has led me to understand an aspect of this discrimination that receives little press: a disabled person's relatives and close friends are associated in their loss of personal identity.

Because we recognize the roles we play in other people's lives—father, son, husband, friend—as only part of our individual makeup, we welcome them, but when any role becomes all-encompassing, our individuality—even our sense of self—suffers, and we "burn out." This happens repeatedly among the disabled and those close to them.

I learned my place as a "disabled relative" almost immediately after Christopher, my blue-suited Superman son, broke his neck at the end of May, 1995. Within days, people—not merely neighbors but casual acquaintances and total strangers—began coming up to me to ask about his health. I soon learned that while these people's sympathy with Christopher's plight was often sincere, they didn't want to know about his personal, day-after-day suffering—how precarious his life was, how his health fluctuated, how close he came to death in the hospital and has come afterward as well. They wanted to hear about his televised role as sufferer—his fight against unconquerable odds—and I, important to them only as "Superman's Father," was expected to assure them that the fight was still going on.

The passage of three years has not dulled their enthusiasm: the more Christopher appears on television, the more frequently they approach, assuming that I can give them some bit of inside information that will bring them into the exalted family circle. If I so much as touch upon the realities of Christopher's situation, they look puzzled—even betrayed. So I have learned to give them a "hot tip" on the date of his next important TV appearance, and they leave, somehow assured that by seeing me they are involved in the good fight and are cheering the underdog. For me, it's an unrewarding charade, made all the more painful by the realities of the situation. People who support the "good fight" have no idea how they're discriminating against—that is, denying individual identity to—an individual father and son struggling to maintain a difficult relationship in the face of differing values and overwhelming physical problems. In Christopher's case, the role of "handicapped Superman" has taken the place of reality. If I refuse to be de-individualized, or if I insist on mentioning the misery and hardship that my son feels daily—he who can never be alone, who must be wakened and turned every couple of hours during the night—I become a nay-sayer to the image of which he has become custodian.

The thing Christopher's fans find hardest to believe about me is that I don't watch television, that in our house we didn't even have a TV until kind neighbors, concerned that we couldn't watch Christopher's performances, gave us their old set when they got a big, new one. We keep it upstairs in the guest room closet. When we roll it out to watch a movie, we attach it to a VCR and a closed captioner, which we need because my wife is deaf.

Very interesting is the contrast between being the father of a celebrity with a broken neck and the husband of a deaf novelist-professor. I've learned that while people will go out of their way to help a person in a wheelchair, they assume that someone they can't talk to is stupid, perhaps retarded, definitely to be avoided. The irony underlying the social conviction that the deaf are witless goes back to Boccaccio's marvelous story about Masetto, the gardener, who pretends to be deaf to get a job. The nuns believe that because he's deaf he can't be a whole man. Instead of his playing with the girls, the girls play with him. It all ends happily-ever-after "many little monks and nuns" later, but the story does express the popular prejudice that deaf people are dumb. It's a prejudice that holds even among the disabled, as a little sign that used to lie on Christopher's kitchen counter said: IT'S A WHEELCHAIR, NOT A HEARING AID.

At first I was incredulous when Laura said that's how it is, but after many times of witnessing people coldly leaving her out of the conversation—even at the faculty lunch tables in her own college—I admit it's true. Perhaps even more interesting is that people who talk to me when I meet them by myself cut me out, too, when she and I are together. We try to involve ourselves with them—Laura, a late-deafened adult, speaks clearly and very intelligently, and she invariably carries a pencil and pad for communications breakdowns. Sometimes she can read their lips. Sometimes I sign a little for her. But always, after a few minutes, the others turn away and take up with the rest of the group as if we were invisible.

The most stunning instance of our invisibility occurred on a New York street in summer waiting our turn with a group outside a restaurant. My daughter, a research psychiatrist, was there. So was the neurologist who chaired her university hospital department. He started talking to Laura, but the street shadows were too deep for her to read his lips or to catch any signs. Our daughter explained sympathetically, "She's deaf," whereupon the eminent doctor turned away and spoke to neither of us—even inside at the table—the rest of the evening. If doctors exhibit such discrimination, what can we ask of most people? In fact, what kind of care can we expect or what sort of medical research can we hope for?

Discrimination forces most handicapped people to live peripheral lives, kept out of sight despite their desire to remain a vital part of society. Even a quadriplegic, who knows he can no longer do what he once did, doesn't think himself "handicapped" until society tells him he is. Wisest in many ways are those non-Western societies like the Navajo, which hold elaborate, difficult, imaginative rituals for restoring the deviant spirit to its longed-for social harmony. One of Christopher's significant accomplishments through his many public appearances has been general acceptance of people in wheelchairs. New York is in general a kinder, gentler place, but you also get the feeling that its "kneeling buses" now willingly wait to board wheelchair passengers. To embrace a wheelchair as a fact of life is a huge step forward both in an individual's and in a society's worldly development. Perhaps some day the deaf will be similarly embraced, and my wife and I will be able to watch Christopher's movies in a theater.

Just as there is no beneficent drug which doesn't have undesirable side effects, however, so there is no injury or illness the treatment of which doesn't entail further harm. Some of these side effects have to be harbored by the patient—Christopher has repeatedly suffered dysreflexia, pneumonia, and infection (which kill more quads than the injury does), and when his nurses dropped him, his arm broke. Other side effects, however, have to be borne by those closest to him, his caregivers, whose lives become subordinated to his needs. Once the roles of giving and receiving care become the sum of the relationship between two people, the relationship becomes intolerable. A quadriplegic we know, who doesn't have Christopher's money and must be attended by volunteer friends, had the love of his life break up after eighteen months. Another must be tended by her husband, knowing that he has been forced to change careers in order to keep her alive. Almost all marriages between hearing people quickly end when one of them goes deaf.

Because the disabled can't be whole, whoever voluntarily cares for the disabled can't be a whole person either. Those who contract their services, like any business person, fill partial, eight-hour roles. All of Christopher's two or three dozen attendants, therapists, drivers and secretaries—are just such professionals, save one—his wife. The professionals move on or off stage according to a schedule, but she can't. Some version of the set figure, or the stereotyped "patient" to whom the professionals minister, gradually comes to dominate for the volunteer the once-beloved individual. Inevitably, the image that serves as a convenience for strangers becomes a projection for the disabled volunteer's psychological relief. Deaf novelist-professor, fallen Superman—it doesn't matter what the disability is.

Public stereotyping of the deaf is no less discriminatory than that of the fallen Superman. Each allows people to sympathize without thinking. Everything in American media encourages people to opt for this sort of response. The difference between admiring a deaf professor's "courage" or a Superman's "good fight" and developing flexible, compassionate understanding of L. Stevenson or of C. Reeve is thought.

That said, it's easier to stereotype than to maintain a minute-by-minute consciousness of the interplay of complex personalities in demanding situations. In fact, no one can sustain complex awareness of psychological nuance on a minute-by-minute basis: itemotionally impossible. Literary and dramatic works at their finest express the subtle acumen of intense consciousness, but they also present stereotypes, for not even the finest novelists and playwrights can develop all their characters simultaneously. Similarly, those who give care—parents and spouses included—have to think in stereotypes some of the time.

The "Fallen Superman" stereotype gives Christopher enormous leverage in his appeals to Congress and on behalf of the American Paralysis Association. For him, and all disabled people, however, the difficulties turn around the ways in which giving and receiving care affect them and their families as well as the ways in which "caregiving" is different from "caring for." Family caregivers not only disappear as individuals in relation to the disabled person but become ancillaries to an image. The late Jean-Dominique Bauby, completely paralyzed except for his left eyelid, superbly handled this irony in his poetic memoir Le papillon et le scafandre (TheButterfly and the Diving Bell) by leaping in his imagination out of his body into a different sort of time beyond the reach of all caregiving. There he was free and independent. From there he introduced into his autobiography a precision both of perception and of memory and that element of distancing, or "making strange," by which the power of emotion takes on a life of its own and which distinguishes any genuine literary work.

Too much care infantilizes disabled patients, making them babies by treating them like babies, but it also disables caregivers by wiping out their multiple selves. The closer caregiving and caring for become associated in one person, the more the "good fight" hurts everyone engaged in it. The destructiveness to the individuality is insidious and, like goatweed, wraps itself around the roots of everything: a recent New York Times review of Dana Reeve's leading role in Good Will, an Off-Broadway play, praised her talent and the believability of her role but defined her as "best known as the wife of Christopher Reeve." Even as an actor, she is confined to one major role; for all her TV and stage appearances, she is as threatened with personal invisibility as I am when I attend a party with my wife.

Compared to the birds of the air and the fish of the sea, we who can neither fly high nor dive deep are all relatively disabled, but we compensate for our disabilities by using machines. At the same time, artistic vision depends on maintaining individuality. The painter Chuck Close, disabled by a stroke, points up the ironic combination of these facts when he says that he can continue as an artist because he can afford the necessary therapeutic machines.

Both the care-giver and the care-taker need worlds of their own in which to reject the stereotyping daily life thrusts upon them and to avoid the terrible temptation offered by the cult of personality—that is, using private grief for public ends like the well-intentioned citizen at the county fair who stopped me, saying, "Mr. Reeve, we'd sure like to take your picture here, playing bingo for the disabled." A cool view of oneself, like a sturdy sense of humor, is necessary to keep the recipient of caregiving from being further disabled by the need for care and the giver of care from becoming a recipient. The limit is marked by one's responsibility for oneself. As old Chinese ethics held that giving alms was immoral because it destroyed a beggar's self-reliance and, therefore, his humanity, so we must look to what preserves our integrity. In whatever self-reliance we're capable of lie our individuality and our worth. How humble and how noble was blind Tiresias, whose insight pierced the ignorance of prejudice and groupthink to illuminate that true discrimination which asserts the individuality of all humans and recognizes their separate dignities in suffering, perception, and merit.

Visible

and

Invisible

Disabilities

Franklin Reeve

First published Michigan Quarterly Review

F. D. Reeve

vol. XXXVII, no. 3, Summer 1998

Issue title: Disability, Art, and Culture (Part Two)

Republished with permissions

© Franklin Reeve