ragged edge magazine online



Issue 1





By John B. Kelly

image of urine drops
It ain't exactly sexy...

Like all bodies, my body is both a joy and a pain in the neck. Some things it does well, while with others it's quite incompetent. My single greatest hassle comes from the fact that my body, since the time of my spinal cord injury, does not regulate its own temperature. I must be careful about going out in the cold or the heat. My overheated body wakes me up in the middle of the night; my too-cold body won't let me fall asleep -- so I lose sleep and I bother my roommate.

Like many bodily issues, it's an annoyance I'd love to be rid of -- but temperature regulation doesn't cause me any worry or distress. My roommate and I simply make a guess at night about setting the heat or opening the window; about how many blankets I should have. When I tell people about this "problem," they might react with mild interest -- or not. It carries no emotional charge, either for me or for them. I almost never see it mentioned as a big problem for quadriplegics. It is simply a puzzle to solve, like what to eat for dinner.

Yet the mere prospect of another kind of bodily experience -- one that unlike temperature fluctuation has caused little actual disruption of my life -- triggers intense anxiety, even terror. It's incontinence. Its occurrence has more than once led to a personal death wish.

These aren't just my feelings, either. They're widely shared by a society that champions them through a range of deadly social practices.

image of urine drops Unlike temperature regulation, incontinence is a universal human experience everyone thinks they know the meaning of. In our achievement-based society, becoming toilet trained, along with learning to walk and speak coherently, is an essential milepost on the way to full personhood. Fetuses and newborns which may not develop these abilities, on the other hand, are seen as better off not living. Abortion gets slated for fetuses with spina bifida, for example, precisely because of the fears of incontinence, paralysis, and mental retardation.

In 1983, surgery was withheld from the famous New York newborn, Baby Jane Doe, because, as the father said, "We were told she would have no control over her bladder or rectal functions. And we were told that she probably had brain malfunction." Last spring, after a British surgeon sacrificed one conjoined twin to save the other, he predicted that life for the survivor "could range from a very good quality of survival, where she can walk and function normally, to the other extreme of not being able to walk and being incontinent." Medicine, ethics and prevailing common sense all hold that these inabilities, by themselves, render lives not worth living.

Yet it is in the cultural debate over end-of-life decision-making that the fear of incontinence has become especially dangerous. Unlike prenatal selection, now accepted culturally and institutionally, the "right-to-die" movement is eminently defeatable -- but we in the disability rights movement, caught between the larger cultural shame and the effort to protect our lives, have tended to avoid addressing incontinence head-on. This must change if we are to succeed in defeating those who believe "better dead than disabled."

The right-to-die movement talks about the unbearable agony of the terminally ill, about their suffering and loss of "dignity." Beneath all the fancy talk, though, lies the simple horror of incontinence. In a 1996 court ruling later overturned by the U.S. Supreme Court, the U.S. 9th Circuit Court of Appeals ruled for the constitutionality of the right to die, Judge Stephen Reinhardt terming it "a choice 'central to personal dignity and autonomy.' A competent terminally ill adult, having lived nearly the full measure of his life, has a strong liberty interest in choosing a dignified and humane death rather than being reduced at the end of his existence to a childlike state of helplessness, diapered, sedated, incontinent," Reinhardt wrote. "How a person dies not only determines the nature of the final period of his existence, but in many cases, the enduring memories held by those who love him."

With the phrase "childlike state of helplessness" and the words "diapered" and "incontinent," Reinhardt gets to say the same thing three times: incontinence calls out for "a dignified and humane death." If that is not enough, he also warns that incontinence could blot out a lifetime of human connection and achievement.

In perhaps the most notorious such statement, Janet Good, founder of the Michigan Hemlock Society and a colleague of Jack Kevorkian, told the Washington Post, "Pain is not the main reason we want to die. No. It's the indignity. I can speak for literally hundreds of people at whose bedsides I've sat at over the years. Every client I've talked to . . . they've had enough when they can't go to the bathroom by themselves. Most of them say, 'I can't stand my mother, my husband wiping my butt.' That's why everybody in the movement talks about death with dignity. People have their pride. They want to be in control."

The word "dignity" derives from the Latin for "worthy": that which is deserving of social respect. But while it may look like it belongs to the individual, "dignity" really comes from the shared judgments of other people. For there to be any general agreement on what dignity means, this must be so. Dignity is in this way just like its opposite, disgrace, which also comes from others' judgments.

Reinhardt, Good, and much of our society believe that incontinence strips people of their dignity. Being self-contained, calm, and in control, the reasoning goes, is simply incompatible with having your butt wiped by someone else. It is primarily for this reason that the titles of existing and proposed assisted-suicide laws prominently display the word dignity -- for example, Oregon's "Death with Dignity Act." To preserve dignity in such a situation, to stay worthy in the eyes of others, demands that autonomy and control be reclaimed by dying. And since dignity seems to carry courage in tow, escape from a humiliating circumstance gets characterized as a courageous act of the will. In fact, the only will on display is the social one.

Oregon's "Death with Dignity Act" authorizes people with less than six months to live to receive a deadly prescription for barbiturates. In reports on the law's first three years, physicians listed leading reasons for a patient choosing death as "losing autonomy" (83 percent), "decreasing ability to participate in activities that make life enjoyable" (78 percent) and "losing control of bodily functions" (66 percent).


Committing suicide for these reasons has been seen as a good thing. As the Associated Press reported after the first year, "Fears that the law would be used as an easy way out by people afraid of financial ruin or extreme pain proved unfounded. Rather, health officials found that use of the law has so far been driven overwhelmingly by the desire of strong-willed patients to exercise some control over the way they died." But this isn't true. People committed suicide, not to control how they died, but to reject how they lived. People whose sense of autonomy depended upon doing things for themselves, most especially their own personal care, could not, it seems, face life otherwise.

Kate Cheney, with terminal cancer, got her suicide pills from an Oregon ethicist after telling him that she might want to die if she could no longer independently manage her colostomy bag or get out of bed. One day, as her daughter helped her into the shower to clean up a leaking bag, Cheney resolved on the spot to die, but changed her mind. Her family finally facilitated her death the very day she returned from a depressing stay in a nursing home. It seems obvious to disability rights observers that her decision had nothing to do with her terminality but with a mortifying loss of independence in the midst of a family fully supportive only of her death.

Terminally ill people are supported -- even commended -- for killing themselves when they're seen to lose their autonomy or control of their bodily wastes: in other words, because of their passage into disability. Non-terminally ill people with disabilities are also supported in dying for the very same reasons. When 34-year-old Annette Blackman died at the hands of Jack Kevorkian, "Kevorkian's lawyer Geoffrey Fieger identified Blackman for police and said she suffered from multiple sclerosis causing 'total incontinence.'" The 1997 Detroit News story presented no other rationale for her death -- it didn't need to. To someone reading this story, the reason would have made perfect sense; for the uninitiated, it would have served as indoctrination.

Assisted-suicide advocates say suicide should be a right not just for people who are terminally ill but for all who "suffer unacceptably." "Once you've defined something as a 'benefit,' it is impossible to limit that 'benefit' to a small, narrowly defined group of people," says Not Dead Yet's Stephen Drake. "It's only a matter of time before pro-euthanasia people start claiming it's unfair to deny this 'benefit' to people who are disabled or ill, but not close to death."

Over 100 people received the "benefit" from Jack Kevorkian before he was imprisoned; media and supporters explained away his actions by labeling his victims "terminally ill." In fact two-thirds of Kevorkian's clients -- including Annette Blackman -- were not terminally ill in any respect, but in the popular consciousness, they may as well have been: disability blurs into terminal illness simply because, for many people, both share characteristics which make life not worth living.

It Ain't Exactly Sexy. . .

To put it bluntly -- because this need is as blunt as it gets -- we must have our asses cleaned after we shit and pee. Or we have others' fingers inserted in our rectums to assist shitting. Or we have tubes of plastic inserted inside us to assist peeing or we have re-routed anuses and pissers so we do it all into bags attached to our bodies. . . .

If we are ever to be really at home in the world and in ourselves, then we must say these things out loud. And we must say them with real language. So they are understood as the everyday necessity and struggle they are.

image of 'Ragged Edge anthology' cover

. . . If our shame tells us that our needs lack dignity, that we lack dignity, then the next thing we hear our shame say is that it is more dignified to die than to live with these basic needs that take away our privacy and seem like such a burden.

From "It Ain't Exactly Sexy" by Cheryl Marie Wade, in the November, 1991 Disability Rag -- reprinted in THE RAGGED EDGE
The Disability Experience from the Pages of the First Fifteen Years of The Disability Rag.
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Doctors and "loved ones" have also sought to extend the death benefit to people who are not even asking for it. In the Netherlands, where physician-assisted suicide is now fully legal, involuntary euthanasia is not infrequent and goes unpunished. Last year a Dutch doctor, convicted of murder for lethally injecting a woman against her wishes, received no punishment. All the court had to hear was that the woman's condition was "wretched," since she lay comatose in a bed "soaked in urine," in a room that stank from decubitus ulcers and necrosis. The court found that the doctor, while making an "error of judgment," had nevertheless acted "honorably and according to his conscience."

The assumed incompatibility of incontinence with adulthood works through a combination of assent and coercion. In the face of a powerful medical profession and cultural horror, people "choose" to withdraw treatment from their newborns or abort their diagnosed fetus, not incidentally saving themselves the trouble of raising a disabled child without social support or of joining their child as members of an oppressed minority. People who have labored their entire lives to receive the respect and feel the self-worth reserved for those defined as able "choose" death rather than lose that status. People around them urge them on. When oppressed and depressed disabled people find willing executioners, they are labeled "terminally ill" recipients of assisted suicide. The overall message in each instance is that disability is a fate worse than death.

Ten years ago, in these pages, Cheryl Marie Wade took the movement to task for not talking about incontinence. "If I can't talk about the need, then I can't talk about the choices, either," she wrote. "And yes, even weak, vulnerable cripples have choices. But if our shame tells us that our needs lack dignity, that we lack dignity, then the next thing we hear our shame say is that it is more dignified to die than to live with these basic needs that take away our privacy and seem like such a burden." What she said then is equally true now. Our shame still keeps us quiet. We have learned all too well from our rehabilitations or from those around us that what makes us different should be as hidden as possible. Incontinence is made into a "private" problem. Our silence, however, has left the field open to ethicists, selection advocates and Kevorkians.

Incontinence must be proclaimed as a natural feature of human variability: ubiquitous in childhood, not uncommon through adulthood, and increasing with age. It is no more worthy of death than menstruation, another uncontrollable flow of bodily wastes that has been labeled undignified and reason enough to disqualify those whom it affects.

As any baby could show you, the beliefs and practices attached to incontinence are thoroughly cultural. Cultural meanings can be shifted. Just as feminists declared "the personal is political," we must assert that incontinence is just another human condition, no more worthy of the death penalty than uncontrolled body temperature. Like feminists, we need to begin attending to it among ourselves, raising our consciousnesses. Because even if we aren't talking about it, the "death with dignity" forces certainly are.

John Kelly is a Boston-based activist and a graduate student at Brandeis University.

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