THE DIGNITY OF HELPLESSNESS From the handicapped children of Nairobi to his grandmother's deathbed, our author discovers something precious in human frailty and even suffering
Cooper, Rand Richards
THE DIGNITY OF HELPLESSNESS What sort of society would euthanasia create? Rand Richards Cooper I'm looking for an argument with Jack Kevorkian; or rather, for one against him. Life for Kevorkian...
...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...
...who doesn't...
...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...
...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...
...But she doesn't display the last few notes she got from Gretchen...
...Whether you call this impulse communitarianism, republicanism, statecraft as soulcraft, or a concern for civic tex-ture...
...The appeal of rights is so compelling that it leaves scant room for realities and interests not easily expressed as rights...
...She didn't really mean it...
...Other societies stress sacrifice or obedience, glory or passion or style or work, but we always come back to rights...
...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...
...That part of us, some quality of pity and compassion and terror and love, is reachable only by taking that awful journey...
...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...
...Such attitudes are not spontaneous manifestations of evil...
...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...
...The notion that our laws should promote virtues as well as protect rights is anathema to modern American political thought...
...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...
...and I feel I am the richer for all of it, endowed with a more expansive vocabulary of body and spirit...
...The debate about assisted suicide should begin at the place where that question ceases to be a rhetorical one...
...Once dubbed "Dr...
...Nevertheless, I believe the notion of a "right" to die provides far too narrow a framework for discussing the widespread institutionalization of the practice...
...I watched him not long ago on "60 Minutes...
...And yet I think about those notes in her cabinet...
...That memory comes back to me whenever an acquaintance of mine-a man in his mid-sixties and in good health-outlines his game plan for old age...
...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...
...Kevorkian pledges himself to "the absolute autonomy of the individual," and insists that practitioners of "obitiatry" (as he proposes calling the new medical specialty) would administer only to those who truly want to die...
...As a means of sparing loved ones suffering, assisted suicide expresses our most compassionate urges and motives...
...I'm aware many will consider this a pernicious basis for discussing the legality of assisted suicide...
...and also a more intimate acquaintance with death, in all its mystery and terribleness...
...But in purest form they are the terms of rights...
...One hot afternoon found me at a grade school in Nairobi, helping out at a fair for handicapped children...
...Taken together with prenatal genetic testing and selective abortion, might not assisted suicide further a gradual drift toward functionalism in our attitude to life...
...my mother, for her part, came away from her friend's death with a firm belief in the Tightness of assisted suicide...
...I share his dread of becoming vulnerable, dependent, smelly...
...and I don't want anyone to think I'm questioning the correctness of relieving misery and pain...
...an un-luck...
...Whose death is it, anyway...
...his writing has appeared in Harper's, the Atlantic Monthly, GQ, and other magazines...
...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...
...Will institutionalizing assisted suicide equip us to be better human beings for each other, or will it unequip us...
...And therein lies the rub...
...Weary prosecutors, having failed to convince three Michigan juries that Kevorkian's eagerness in assisting suicide is a crime, now seem ready to toss in their cards and go home...
...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...
...Which side of this reality will we emphasize...
...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...
...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...
...Consider the predicament of the elderly...
...Whose death is it, anyway...
...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...
...And if so, does the law have a role to play...
...Instead, she keeps them taped to the inside of a cabinet high over the stove...
...The fact is, our deaths are both solo journeys toward an ultimate mystery and strands in the tapestries of each other's lives...
...I did what I could, but I was young and singularly unschooled in this kind of neediness...
...Rand Richards Cooper is the author of two works of fiction, The Last to Go (Harcourt, Brace, and Jovanovich) and Big As Life (The Dial Press...
...They needed help getting in, help going and cleaning up afterward...
...But I'm also thinking about something far subtler, that gradual habituation of mind Tocqueville called the "slow action of society upon itself...
...too much suffering and beauty attach to them...
...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...
...For him, goal number one is never, ever to become a helpless burden...
...Death" by medical school classmates for his unseemly obsession with terminal illness, the ex-pathologist stands redeemed and embraced as a pioneering American hero...
...In a society in which assisted suicide is a ready option, how will we view those who don't choose it...
...For my mother, there was the anguish of watching a person she loved being overwhelmed by illness-an especially hard kind of sorrow...
...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 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...
...He has taught at Amherst and at Emerson College...
...A few years ago, my mother's lifelong best friend died at sixty of lung cancer...
...but if you do, they will...
...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...
...Whatever you may think of Kevorkian, or of abortion, I think you'll agree that these are exceptionally arid terms with which to encounter complex human dilemmas...
...and further, that what we draw from this knowledge constitutes not only a spiritual good but a social good...
...As such it is an attempt to do people dignity-and our memories of them, too-by enabling them to go out whole...
...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...
...Talk about rights resonates deeply with Americans...
...It doesn't, say the juries who keep acquitting Kevorkian...
...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...
...But this fear proved groundless...
...Much as we like to imagine otherwise, the truth is that our inventions and our beliefs are implacably dynamic...
...I followed, watching as Dennis squatted before the boy, cleaning him with a towel, the boy looking up with a calm and patient expression...
...It's the institutionalizing of the practice I'm wondering about, and its effect on our relation to the idea of suffering...
...Yet at the same time I find myself looking back to that moment in the outhouse in Kenya, years ago...
...an un-person...
...I suspect they are still too highly charged for her...
...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...
...It is our strongest political instinct...
...our melody and our beat...
...and just as the Pill helped transform our ideas about sexual freedom, so will the obi-tioner change the way we regard aging...
...By this I mean simply the thoughts we have in our heads about ourselves and one another...
...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...
...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...
...How will we prevent the creep toward an increased sense of burden-someness that the very availability of assisted suicide is likely to cause...
...It is the hollowness, in fact, of Jack Kevorkian himself...
...Taken to extremes, the notion of a vested interest in each other's suffering becomes barbaric...
...Assisted suicide offers a way, in effect, to manage death so that it arrives before this insidious larceny has begun...
...How does my exercising it conceivably impair the rights of any other person...
...Vividly I recall a boy of ten who walked with two crutches, dragging useless legs behind him...
...And with assisted suicide that means leaving out way too much...
...A clamorous line of kids in leg braces and primitive wheelchairs formed outside the single outhouse...
...And do we want that...
...Once I start shitting my pants," he says, "that's it...
...How to become fluent in help if we have banished helplessness from our vocabulary...
...One needs to tread very softly here...
...Jack's doing something that is right," says his lawyer, Geoffrey Fieger...
...Is it possible that accompanying and consoling those we love through grievous terminal illness constitutes one of the core experiences we need to have...
...The event was understaffed, and when after games and lunch the children started having to go to the bathroom, things got hectic...
...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...
...Do we want to do that to our elderly and infirm...
...I don't know why I'm still alive," she'd say, sighing...
...Whatever you may feel about Kevorkian personally-and I admit to finding him an unlikely standard-bearer, with his smug and aggressive looniness, for a human dignity movement-you have to admire how deftly he has taken the pulse of the nation's moral reasoning...
...But what exactly is the "absolute autonomy" of an elderly, ailing person convinced he or she is a burden to everyone...
...The things we make turn around and remake us...
...Such questions find scant place in a discussion that focuses solely on the "autonomous" individual and his "right" to die...
...that's why the government should butt out...
...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...
...A sense of this deep privacy drives the right-to-die movement in America today...
...Seeing my distress, another organizer, a thirtyish guy named Dennis, picked up the boy and swiftly carried him into the outhouse...
...the shape and feel of our daily, moment-to-moment relations...
...My mother has a bulletin board in her kitchen where she tacks up cards, favorite maxims, snapshots, and the like...
...Next, what about creeping changes in the rest of us...
...Life for Kevorkian lately has come laden with satisfying vindica- tions...
...It's an option I imagine Gretchen might well have availed herself of...
...Everyone instinctively understands that-that's why we're winning...
...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...
...If so, will we be a better, richer, more humane society for having done so...
...When I was twenty I lived for a time in Kenya...
...She's not there anymore," my mother would say after a bad visit...
...How often in the assisted-suicide future will someone look at an elderly person and think, consciously or semiconsciously, "Gee, guess it's about time, huh...
...not only individuals, but society...
...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...
...Where does assisted suicide fit in...
...You have to train people to feel this way...
...Gretchen's illness is the kind on which Kevorkianism makes its core appeal-a remorseless, irreversible disease that steals a person from us bit by bit...
...Should laws, can laws, have a stake in our complexity-in the qual-ity of our togetherness as well as the fact of our separate-ness...
...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...
...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...
...Take me out and shoot me...
Vol. 123 • October 1996 • No. 18
