The Dignity of Helplessness

I’m looking for an argument with Jack Kevorkian; I or rather, for one against him. Life for Kevorkian lately has come laden with satisfying vindications. Weary prosecutors, having failed to convince three Michigan juries that Kevorkian's eagerness in assisting suicide is a crime, now seem ready to toss m their cards and go home. Once dubbed "Dr. Death" by me&cal school classmates for his unseemly obsession with terminal illness, the ex-pathologist stands redeemed and embraced as a pioneering American hero. "Jack's doing something that is right," says his lawyer, Geoffrey Fleger. "Everyone instinctively understands that--that's why we're winning." 

Whatever you may feel about Kevorkian personally--and I admit to finding him an unlikely standard-bearer, with his smug and aggressive loneliness, for a human dignity movement—you have to admire how deftly he has taken the pulse of the nation's moral reasoning. Kevorkian has put our agonized ambivalence about life-prolonging medical technologies into the rights-based framework of our political discourse, producing a case for assisted suicide that seems unassailable. Its logic goes like this. If I am afflicted, say, with inoperable cancer, and if after discussions with loved ones I decide I would rather die now, in dignity, than a year from now, why shouldn't I have this right? How does my exercising it conceivably impair the rights of any other person? 

It doesn't, say the juries who keep acquitting Kevorkian, that's why the government should butt out. Whose death is it, anyway? 

As a means of sparing loved ones suffering, assisted suicide expresses our most compassionate urges and motives. Nevertheless, I believe the notion of a "right" to die provides far too narrow a framework for discussing the widespread institutionalization of the practice. Talk about rights resonates deeply with Americans. It is our strongest political instinct; our melody and our beat. Other societies stress sacrifice or obedience, glory or passion or style or work, but we always come back to rights. And therein lies the rub. The appeal of rights is so compelling that it leaves scant room for realities and interests not easily expressed as rights. And with assisted suicide that means leaving out way too much. 

Consider the predicament of the elderly. Kevorkian pledges himself to "the absolute autonomy of the individual," and resists that practitioners of “obitiatry" (as he proposes calling the new medical specialty) would administer only to those who truly want to die. But what exactly is the "absolute autonomy" of an elderly, ailing person convinced he or she is a burden to everyone? I remember how my grandmother, who died a few years ago at ninety-seven, used to lament being a "burden" on the rest of us. "I don't know why I'm still alive," she'd say, sighing. She didn't really mean it; but there's no doubt in my mind that the obitiatric option, had it existed, would have added an extra tinge of guilt to her last couple of years—particularly after she entered a nursing home whose costs began to eat up the savings she and my grandfather had accumulated over decades of thrift. Do we want to do that to our elderly and infirm? How will we prevent the creep toward an increased sense of burdensomeness that the very availability of assisted suicide is likely to cause? 

Next, what about creeping changes in the rest of us? In a society in which assisted suicide is a ready option, how will we view those who don't choose it? I'm imagining Ben Jonson's grim sixteenth-century farce, Volpone, updated for our time, a circle of heirs crowding round the bedside, impatient for the obitioner. But I'm also thinking about something far subtler, that gradual habituation of mind Tocqueville called the "slow action of society upon itself." Much as we like to imagine otherwise, the truth is that our inventions and our beliefs are implacably dynamic. The things we make turn around and remake us; and just as the Pill helped transform our ideas about sexual freedom, so will the obitioner change the way we regard aging. How often in the assisted-suicide future will someone look at an elderly person and think, consciously or semiconsoously, "Gee, guess it's about time, huh?" 

And do we want that? 

Such questions find scant place In a discussion that focuses solely on the "autonomous" individual and his "right" to die. That's why I want to take Kevorkianism out of the discussion of individual rights and put it into a discussion of something I'll call, for want of a better phrase, the texture of civic life. By this I mean simply the thoughts we have in our heads about ourselves and one another; the shape and feel of our daily, moment-to-moment relations. Will institutionalizing assisted suicide equip us to be better human beings for each other, or will it unequip us? 

When I was twenty I lived for a time in Kenya. One hot afternoon found me at a grade school in Nairobi, helping out at a fair for handicapped children. The event was understaffed, and when after games and lunch the children started having to go to the bathroom, things got hectic. A clamorous line of kids in leg braces and primitive wheelchairs formed outside the single outhouse. They needed help getting m, help going and cleaning up afterward. I did what I could, but I was young and singularly unschooled in this kind of neediness. Vividly I recall a boy of ten who walked with two crutches, dragging useless legs behind him. During the long wait he had defecated in his pants, and as I helped him to the outhouse door I retched, despite myself, at the stench and the stifling heat. Seeing my distress, another organizer, a thirtyish guy named Dennis, picked up the boy and swiftly carried him into the outhouse. I followed, watching as Dennis squatted before the boy, cleaning him with a towel, the boy looking up with a calm and patient expression. 

That memory comes back to me whenever an acquaintance of mine--a man in his mid-sixties and m good health—outlines his game plan for old age. For him, goal number one is never, ever to become a helpless burden. "Once I start shitting my pants," he says, "that's it. Take me out and shoot me" I share his dread of becoming vulnerable, dependent, smelly; who doesn't) Yet at the same time I find myself looking back to that moment in the outhouse in Kenya, years ago. Helplessness was there, of course, and burden too, but beauty as well, so much so that I have never forgotten it—the helper and the helped joined in a mutual courage I could only hope some day to possess. 

My point is that we experience a profound aspect of our humanity precisely in our intimate and awful knowledge of each other's physical neediness; and further, that what we draw from this knowledge constitutes not only a spiritual good but a social good. If, following the quality-of-life, take-me-out-and-shoot-me-principle, we end up using assisted suicide to preempt the infirmities of old age and terminal illness, how well equipped will we be to encounter infirmity elsewhere? How to become fluent in help If we have banished helplessness from our vocabulary? I'm thinking of the way we treat people in wheelchairs, people who can't feed themselves, whose bodies don't look or work "right." Taken together with prenatal genetic testing and selective abortion, might not assisted suicide further a gradual drift toward functionalism in our attitude to life? Societies that drift in this direction, as Germany did under the Nazis, instill in their citizens a visceral sense of the handicapped as a drain or drag on the healthy body of the rest of us. a pointless deformity; an un-luck, an un-person. Such attitudes are not spontaneous manifestations of evil. You have to train people to feel this way, but if you do, they will. 

A few years ago, my mother's lifelong best friend died at sixty of lung cancer. The last phase of Gretchen's life involved multiple surgeries, long hospital stays that sapped the will, and the disorienting pressures of pain and medication. For my mother, there was the anguish of watching a person she loved being overwhelmed by illness—an especially hard hand of sorrow. ("She's not there anymore," my mother would say after a bad visit.) But then came moments of joy—a visit or a phone call or a handwritten note in which, suddenly, Gretchen was there again, emerging by some grace from the fog of her illness to share with my mother an affirmation of how much they had loved and enjoyed each other through the decades of their friendship. 

My mother has a bulletin board m her kitchen where she tacks up cards, favorite maxims, snapshots, and the like. But she doesn't &splay the last few notes she got from Gretchen Instead, she keeps them taped to the inside of a cabinet high over the stove I suspect they are still too highly charged for her, too much suffering and beauty attach to them. 

Gretchen's illness is the kind on which Kevorklanism makes its core appeal—a remorseless, irreversible disease that steals a person from us bit by bit. Assisted suicide offers a way, in effect, to manage death so that it arrives before this insidious larceny has begun. As such it is an attempt to do people dignity—and our memories of them, too—by enabling them to go out whole. It's an option I imagine Gretchen might well have availed herself of; my mother, for her part, came away from her friend's death with a firm belief in the rightness of assisted suicide.

And yet I think about those notes m her cabinet It's hard to say this, but I believe that part of what makes them so profoundly meaningful to my mother is that they came from such a dark and pressured place, where Gretchen was not always the "same" Gretchen she had known. Finding her way back from that place to write those notes fashioned an understanding of courage which my mother carries with her today: the last of Gretchen's many gifts to her. 

One needs to tread very softly here. Taken to extremes, the notion of a vested interest in each other's suffering becomes barbaric; and I don't want anyone to think I'm questioning the correctness of relieving misery and pain. In fact, it's not assisted suicide per se I'm questioning, which in other forms has long been practiced unofficially by physicians informing the gravely ill about lethal doses, turning off ventilators to "let nature take its course," and so on. It's the institutionalizing of the practice I'm wondering about, and Its effect on our relation to the idea of suffering. If we make assisted suicide widely available, will we end up virtually eliminating that phase of life in which people are not whole, "not there"? If so, will we be a better, richer, more humane society for having done so? 

I’m aware many will consider this a pernicious I basis for discussing the legality of assisted suicide. The notion that our laws should promote virtues as well as protect rights is anathema to modern American political thought. But the idea of rights alone can't capture the complexity of our connectedness to one another, and anyone who insists exclusively on them can end up sounding weirdly hollow. It is the hollowness, in fact, of Jack Kevorkian himself. I watched him not long ago on "60 Minutes." Asked by Mike Wallace to discuss the ethics of abortion—he is vehemently prochoice Kevorkian mulled it over for a moment, then responded in this way: "The autonomy of the fetus can never supersede the autonomy of the mother." Whatever you may think of Kevorkian, or of abortion, I think you'll agree that these are exceptionally and terms with which to encounter complex human dilemmas. But in purest form they are the terms of rights. 

Current debates about welfare reform, about drug policy, violence on TV, the legality of youth curfews and school uniforms: all suggest a growing urge in America, across the political spectrum, to move beyond laissez-faire liberalism— what political theorist Michael J. Sandel has called our modern "aspiration to neutrality"—toward some vision of the good. Whether you call this impulse communitarianism, republicanism, statecraft as soulcraft, or a concern for civic texture; what it means is making connections not only between laws and rights, but between laws and character— the kind and quality of citizen laws inevitably help produce Where does assisted suicide fit m? Is it possible that accompanying and consoling those we love through grievous terminal illness constitutes one of the core experiences we need to have? That part of us, some quality of pity and compassion and terror and love, is reachable only by taking that awful journey? And if so, does the law have a role to play? Should laws, can laws, have a stake in our complexity--in the quality of our togetherness as well as the fact of our separateness?

For the last few months of her very long life, my grandmother lay in a nursing home, floating in and out of consciousness, largely unable to eat. She wasn't in pain, but clearly she no longer possessed the active, vigorous perception which I believe institutionalizing assisted suicide may ultimately lead us to establish as the bottom-line criterion for meaningful life among the aged and the ill. For my part, I'd been fearing my visits to her, worrying that these last images of her diminished and helpless would later greedily elbow out other, happier memories. But this fear proved groundless. As it turns out, even those deeply unsettling moments when she looked more dead than alive and I barely recognized her, or when she unexpectedly squeezed my hand, as if sending a last, bodily message from some strange place between being and not-being--all of that forms part of the story of my grandmother that I carry with me; and I feel I am the richer for all of it, endowed with a more expansive vocabulary of body and spirit; and also a more intimate acquaintance with death, in all its mystery and terribleness. 

Anyone who has accompanied someone through a terminal illness knows the solitariness of mortality--"the unknown," wrote English poet Edward Thomas shortly before his own death in World War I, "I must enter, and leave, alone." A sense of this deep privacy drives the right-to-die movement m America today And yet to step outside the rights framework is to ask how institutionalizing assisted suicide will affect not only those who die, but those who live on, not only individuals, but society. The fact is, our deaths are both solo journeys toward an ultimate mystery and strands in the tapestries of each other's lives. Which side of this reality will we emphasize? Whose death is it, anyway? The debate about assisted suicide should begin at the place where that question ceases to be a rhetorical one.