My sister’s genetic disorder is too unusual to have a name. If it seems like the person I’m talking to won’t understand a medical description—grand mal seizures, nonverbal, severe-to-profound mental retardation—the layman’s version is that she’s a 10-month-old mind trapped in a 20-year-old body.
I am not often asked whether there is a cure. When I heard the question for the first time, only a year ago, my answer, which appalled the questioner, was that my family probably wouldn’t be interested in one.
Of course, to speak of an after-the-fact cure for a genetic disorder is to liberate imagination from basic science, but consider for a moment the implications of saying that, if a cure for my sister’s condition appeared tomorrow, my family would refuse it. It may sound like a thought experiment from an introductory philosophy textbook, but the answer to this painfully undergraduate question is, in its way, an answer to those bioethical questions about disability that now seem so pressing. Should deaf parents be allowed to inflict deafness on their children by denying them cochlear implants? Can quadriplegia justify assisted suicide? Was the Americans with Disabilities Act poorly conceived? (Yes, no, and colossally.) I hope that by getting to the bottom of my intuitive unwillingness to see my sister “cured,” I can begin to offer a conservative bioethics, one that sees love, not autonomy, as the basis of human dignity.
Before beginning, it would be a good idea to know what to call them. Is it all right to say “the disabled?” If not, which is better, “disabled people” or “people with disabilities?” “Physically-impaired” sounds too negative, but “differently-abled” is obvious cant.
Philip Corbett, house stylist for the New York Times, prefers “person with a disability” because “a person with a disability is a person, first of all, with many characteristics beyond the disability.” I do not dispute with Corbett that they are, but his elegant point buckles under an inelegant phrase. More importantly, his idea that disability should be considered merely incidental is misleading.
For one thing, it is dangerous to write off any trait as a mere happened-to-be. Did Joan of Arc simply happen to be a woman? Would Oscar Wilde have been Oscar Wilde if he’d been straight? If we knock off every characteristic attributable to accidents of genetics and fate, can we hope to leave any mark of individuality standing?
But this point, which holds for most characteristics, goes double for disability. It contradicts decades of sloganeering to say so, but, very often, a man’s disability is the defining aspect of his life.
Consider the late Harriet McBryde Johnson, a disability rights activist and author of the New York Times Magazine article “Unspeakable Conversations,” one of the most famous documents in the canon of disability activism. The article tells of Johnson’s encounter with Princeton philosopher Peter Singer, who notoriously endorses elective infanticide in cases where a child’s disability sentences him to a life of extraordinary suffering. Johnson had originally been invited to oppose Singer in a public debate, but she refused the terms: “This sounds a lot like debating my life—and on my opponent’s turf, with my opponent moderating, to boot.” She made a counterproposal—a guest appearance in one of Singer’s classes and a public lecture of her own—which Princeton accepted.
Defending the value of one’s own life is, of course, insultingly superfluous. If I can summon the motivation to so much as turn up at such a forum, doesn’t that prove the point beyond question?
A simple point, but one with a hidden irony. Singer’s case for elective infanticide assumes that disability always makes life less fulfilling, and Johnson’s appearance proved the opposite before she even opened her mouth. Far from puttering away her days in some dismal nursing home, this “bedpan crip” (her words) was trading barbs with a famous Ivy League professor! Johnson’s neuromuscular disorder did not stop her from snagging such a distinguished speaking engagement. On the other hand, without her disability, would she have been invited in the first place? Disability did not stand in the way of her success; quite the opposite, disability shaped it.
Even if Johnson hadn’t put disability at the center of her professional career, she could hardly have avoided putting it at the center of her life. There is no aspect of her existence that it did not affect, no situation in which she could have set it aside or made it invisible, no system of accommodations so effortless that it could have vanished into routine. We cannot reduce a man to his disability, but neither can we look past it. Look past it to what? An imaginary version of that person minus his disability? What an insult, to insist that the only way we can deal with a man is by pretending he is someone else.
To base public policy on an imaginary future in which disability is irrelevant is therefore not simply futile but incoherent. If we wish to deal with disability in some kind of public way, we must approach it with some other intention than making it invisible. So, if we cannot say of disability simply that we would like to see it eradicated, what should we say about it?
“Luxury undermines empires, which is another way of saying that civilization leads to the death of civilization.” The words are Patrick Brantlinger’s, but they could just as easily have been Tocqueville’s, Gibbon’s, or Baudelaire’s. They also could have been Oswald Spengler’s, which should suffice to explain why reactionary moaning about flabbiness and decadence has never been warmly received among disability theorists: It is not hard for them to imagine where a celebration of self-discipline, virility, and athleticism leaves the wheelchair-bound, feebleminded, and incontinent. However, a strange twist of fate has made the weakest Americans the heroes of our war on idleness and indifference rather than its villains, or its victims. Love of rugged virtue is sometimes an adolescent fascination with power, the “school of virility” that Ezra Pound said “seems to imagine that man is differentiated from the lower animals by possession of a phallus.” But sometimes it is more than that. A more mature version might be: A healthy interest in happiness is good, but only when tempered by a suspicion that happiness is less an ultimate goal than a side effect. A man could live a good life by pursuing virtue, personal excellence, love, or salvation, but, if he does nothing but chase pleasure for its own sake, his life will be happy—and very, very small.
So far, so uncontroversial. The missing link between the above summary and a grand narrative of cultural decline is this: As idle pleasures become more and more alluring, they become harder and harder to resist. One need not be a paranoiac about the decline of civilization to admit that leisure is more appealing than virtue, which demands greater sacrifices and promises less straightforward rewards. As our entertainments offer greater thrills at cheaper rates, the choice between the good fight and good fun starts to look obvious.
It used to be that crotchety bellwethers of decadence would nudge our country towards self-discipline by holding up its manliest heroes and reciting Teddy Roosevelt’s paean to men who dare (which made those Americans who could not so much as go to the store without assistance begin to feel very nervous). But different ages need different heroes. Other generations had to contend with the temptations of consumerism, luxury, and ever-increasing opportunities for laziness; ours has to contend with science. The fantasy is the same: the eradication of pain, and the eventual obsolescence of all those habits that feel awful but build character. Science in our day, like leisure in others, has improved so rapidly that its champions have begun to suspect that the age of painlessness is finally at hand.
I cannot be certain that science will never discover cures for disability, but I am quite sure that such scientific triumphalism is perverse. Let me return to my sister’s story.
I remember noticing something about her Special Ed classmates: Those whose disabilities were genetic, like Martha’s, were thought to be capable of improvement but not radical transformation. Genetic mutation cannot be cured, just managed. The autistic children, on the other hand, were more likely to be shuttled by their parents to whichever medical center had just completed a promising study. Cure-chasing did not always make these parents seem frantic and desperate, but, even at its most benign, the practice struck me as incompatible with the kind of acceptance that love is supposed to involve.
I don’t mean to suggest that unconditional love means accepting disability as a mere difference rather than a handicap. Some disability theorists have proposed a social construction model of disability, which argues, in the words of the U.N. Convention of the Rights of Persons with Disabilities, that “disability resides in the society not in the person.” I might be willing to accept that mild forms of autism—Asperger’s, for example—might be effectively “cured” by greater acceptance of their attendant quirks, but mental retardation is less ambiguous. It is a tragedy that my sister cannot put her thoughts into language, that she lives her life from moment to moment, that my parents have woken up at 5 a.m. to find the contents of Martha’s diaper smeared on her bedroom walls. But, having accepted the tragedy of Martha’s condition, it was easy for my family to embrace her without harboring any secret wish that she were someone different. Martha will probably never learn to speak, and will certainly never live independently; “All right,” we said, “let’s go from there.” To love Martha means accepting the difficulties that loving her entails.
An uncharitable reader might think I have just suggested that, when confronted with disability, the thing to do is to lie back and think of England. Does my attitude towards Martha’s disability amount to an indifference to suffering or, worse, an endorsement of suffering for suffering’s sake?
The idea that suffering gives life its meaning has a long and illustrious pedigree, certainly, from flagellant saints to John F. Kennedy (“. . . not because they are easy, but because they are hard”). But those difficulties were freely chosen; disability is a different sort of pain entirely, one less easily cast as a charming bit of adversity to be overcome. While there are certain kinds of disability that we should not try to erase, it is not because suffering builds character. Suffering is the ornament of humanity only when undergone for some higher purpose. There is only one way to persuade someone to accept disability in spite of its difficulties, and that is to convince him that the compensating benefits are worth it.
When the compensating benefit is love, the answer is easy. I know first-hand the problems inherent in trying to build a relationship with a disabled person while cherishing the misplaced hope that the difficulties they carry with them will one day disappear. Even the tiniest nagging doubt can be a barrier to love, as in the case of my sister’s autistic classmates. To frame the idea in a different way, we all hope for our friends’ continual self-improvement: that our favorite penny-pincher will become more charitable, that our directionless nephew will discover some driving passion, that the melancholic next door will find inner peace. But in none of these cases would we want our friend to become someone else. They should become better, but should stay recognizably themselves. When a man’s disability is fundamental to his character, then there is no difference between wishing for a cure and wishing he were someone else. As Jim Sinclair put it in 1993, “It is not possible to separate autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.’”
What about less fundamental disabilities, like quadriplegia from a car accident? There is value in accepting them, too, though the compensating benefit is different. We can all agree that an individual who has lost his legs should not also have to lose his job, as long as he can still perform it, and our moral intuition tells us that accommodations should be made both for the man’s special needs and for his dignity. But what do we mean by “dignity?” Whether a wheelchair-bound man reaches his desk by way of a ramp or with the assistance of a coworker, the end result is the same: He gets to work. Some disability activists believe that the latter scenario is, if not an injustice, then at least an indignity, an involuntary kind of subordination. They think so because they believe people are fundamentally autonomous—a strange fiction. As galling as it can be to accept help, it goes with the territory of being human. There is a point at which “accommodation” ceases to be a gesture of compassion and becomes a costly reinforcement of the modern myth that strength of character is synonymous with self-sufficiency, a myth that is already dangerously popular. Enshrining the fallacy in law, or even convention, puts the weight of society behind a fallacy that makes physical weakness seem inhuman. Forcing a disabled employee to accept charity, or telling him he can only be fully human if he is fully independent: Which is more cruel?
But let’s judge the tree by its fruits: How might this love-centric bioethics be applied to an actual question of policy like, say, the debate over cochlear implants (CI)? The Left has already put forward its own defense of deaf parents who want to deny their newborn children a treatment that can effectively cure a child’s deafness. (The device does not restore hearing, but it does simulate auditory signals, and children who receive the implants early are usually able to learn spoken language.) They argue that the deaf community is a minority group entitled to preserve its own special character, which means ensuring that deaf children grow up within their parents’ community. The “cultural genocide” argument (the phrase originates with the National Association for the Deaf) may strike the conservative ear as multi-culti and relativistic. I happen to agree with it, but it does not especially matter whether any of us would accept or reject CIs for our own children. The question is whether doctors can insist on the treatment over the parents’ wishes, as they are empowered to insist on blood transfusions for the children of Jehovah’s Witnesses. We already assume that everyone prefers life to death and that to believe otherwise is inhuman and insane. If we believe that a preference for physical perfection over imperfection is similarly self-evident, then the decision to refuse cochlear implants for your child begins to look like neglect.
But I am not willing to privilege physical wholeness so quickly. It is not simply a matter of a child being capable of living a full life without his hearing. In this case, the inability to hear is the very thing that makes a full life possible; without it, the child would grow up a stranger in his own family. It is not a zero-sum choice between hearing and his parents’ love, of course, but the CI controversy does demand that the medical profession make a clear decision: Would a sane person sacrifice his child’s hearing for the sake of fuzzy and intangible benefits like the opportunity to share a language and culture with him? Scientific triumphalism would say no. I am not worried that its answer will be given the force of law anytime soon, but I worry for the culture that takes its side.
There is a strong temptation to say, very simply, that these sorts of decisions are family affairs and none of the public’s business. However, the answer is not as simple as recognizing a family’s right to privacy, as the case of elective abortion makes clear. The decision to carry a disabled child to term means something very different depending on how ordinary or extraordinary the decision is. The public’s attitude towards children with Down Syndrome is not the same when 15 percent of women choose to abort such children as when 90 percent do. (The exact figure in the United States is 91 percent.) If elective abortion continues to be the overwhelming norm, the child’s disability will come to be seen as something the mother brought upon herself rather than as something she simply accepted. The assumption will be that no normal woman would have borne the child since, after all, normal women don’t. This same shift—from seeing disability as a family’s fate to seeing it as a self-inflicted burden—will naturally follow if more quadriplegics follow the example of Daniel James, the British rugby player who ended his life at the Swiss clinic Dignitas after an injury left him paralyzed. (Dignitas has ended the lives of more than a hundred Britons since it opened ten years ago, and, in that time, not a single spouse, relative, or friend has been prosecuted for the legal crime of assisting them.) The difference between ordinary and extraordinary measures is an important moral one; it determines the moral—and therefore legal—expectations we have of our neighbors and ourselves. These private decisions have public consequences.
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It is fair to ask whether casting people with disabilities as moral heroes can be meaningfully distinguished from treating them as talismans, drive-time radio stories who happen, rather inconveniently, to have their own desires apart from what we desire of them. Don’t we cringe when the local news imputes great heroism to a handicapped person simply for moving on with his life? There is very little heroism in making the best of things, and none at all in grasping desperately at anything that might ease an inconvenience. However, in this sketch of a conservative bioethics, I have asked the disabled and their families to show real heroism by accepting their suffering with some measure of grace and by swallowing their pride and accepting an unusual measure of dependence. The heroism lies in the choice, not the affliction. The hero is held up as an example, not drafted as a symbol. These differences are not slight.
Floyd Patterson, the most Catholic heavyweight champion in the history of boxing, explained his willingness to endure months of difficult training this way: “What were the requirements? Sacrifice. That’s all. To anybody who comes from the Bedford-Stuyvesant section of Brooklyn, sacrifice comes easy.”
Love—whether it’s love for a sport, love for one’s sister, or love for humanity in all its forms, however grotesque—is the thing that makes a man say, “Sacrifice. That’s all.” Its yoke is easy, its burden light. Life with a disability involves sacrifices, some of which are merely onerous and should be eliminated, some of which cannot be eliminated without implicitly disputing love’s power to turn sacrifice into a gift.
Science has asked us to endorse its vision of a perpetually comfortable and easy world, and so we cannot help but make a firm choice, now, whether to celebrate self-discipline or to resent its necessity. If we choose the latter, we may soon find ourselves living in the world of Wall*E—painless, and pointless. If we choose the former, we may find that the prophets of our new asceticism are the deaf parents who decline cochlear implants for their newborn, the wheelchair-bound employee who finds nothing undignified about asking a co-worker for help every morning, the mother who carries a Down Syndrome baby to term—those who have had hardship thrust upon them and, nevertheless, have found some nobility in it. Science and disability law will both continue to develop, but we must be careful in choosing the goal toward which their progress is directed.
Helen Rittelmeyer is a writer living in Brooklyn, NY. She blogs at http://cigarettesmokingblog.blogspot.com. Illustration by Joe Oliva Ganoza.
Source: AFF Doublethink Online | Joseph Hammond
Source: AFF Doublethink Online | Emma Elliott Freire