A Matter of Dignity

by Andrew Potok

  “So how is anything changed by scholarship in this field? Why does it matter beyond the academy?” I asked Paul Long-more, professor of history at San Francisco State University.

  “It matters a lot,” he said. “Any social-change movement needs some of its members to do the analysis, the really hard work. That's what we do. For a movement to succeed it must precisely define what the problem is and how it must be addressed. There's a lot of entrenched thinking about all this and we, academic and nonacademic activists, have to change that thinking. Society thinks disability is a medical problem and that people need to be cured or corrected. This is not the case. Disability is a social problem and cures are rarely the solution. The solutions lie in social and political transformation, architectural and technological redesign. We need to examine all this in great detail.”

  “How will this happen? How will your work trickle down to affect us all?”

  “One crucial way is through influencing public policy. For that to happen, we must analyze how cultural values shape policy regarding the disabled. Cultural representations of disability in literature or movies are not entirely separate from cultural representations in public policy or professional practices. Part of a scholar's job is to explore those inner connections. Our critical analysis must be both current and historical. How did things get to be this way? How does the present situation compare with the past? Was there even a concept of disability in earlier eras or is this a modern invention? If there wasn't a concept, how did it come into existence?”

  Another way scholars try to effect change, aside from analysis and reform of public policy, is through the examination of professional practices. “Some people mistakenly want to distance disability studies from rehabilitation and special education,” Paul Longmore said, “because those professionals are seen as oppressive. They can be oppressive, but disabled people are always going to have to deal with those professionals, so disability studies must generate reform in the process of their training and thus influence how they practice. It's already happening at the University of Illinois in Chicago, where students in occupational therapy are coming into graduate courses in disability studies and some of them are going back out into their fields as missionaries.”

  The field of disability studies has met with resistance from some traditional academic disciplines. From these and from nonacademic orthodoxies come reactionary views that see these studies and this political awareness as cranky and wrong-headed. From both the political right and left, a self-satisfied criticism has been leveled against what is sometimes perceived as squawking about one's rotten luck. Thus, the ADA has been attacked by the right as too expensive, too softhearted, a costly crutch, the attorney's dream act, a dumb use of resources, even an abomination.

  The political left has different reasons for neglecting the disabled. Even though the reality for most of the disabled community is extreme isolation, rampant unemployment, poor education and continuing discrimination, even though it is the most marginalized sector of society, there is a growing conservatism within the progressive movement, for whom race, class and gender are the overarching considerations. Disability rights hold a curious position within the social-change movement, even though disability is often a class issue and frequently is a direct effect of capitalism's excesses: of war, repression, poverty and backward social priorities.

  Because educational institutions are the guardians of cultural memory and meanings, the existence of scholars in disability studies in the humanities is crucial. The subject matter of disability studies is not simply the variations that exist in human behavior, appearance, physical, sensory or cognitive limitations, but the meaning we make of those variations.

  “As scholars, we're dealing with issues that have to do with experiences and social standing of people with disabilities,” Paul Longmore said. “We're addressing all the traditional questions that the liberal arts had always addressed, such as what's the nature of manhood, womanhood, sexuality? What makes a person human? What is justice, equality, community?”

  It seems clear that all of this can enrich learning for students and scholars in every field and therefore has implications for how society faces basic issues—issues such as differentiating between the normal versus the pathological, the insider versus the outsider, the competent citizen versus the ward of the state. Academic studies teach us that the very term normal is historically specific, arising in a particular moment as a part of the notion of progress.

  Precision in the use and understanding of language itself also defines the academy. Though in times such as ours, this may lead toward politically correct euphemisms, words such as challenged or unsighted or otherwise abled, for the most part it leads away from them and toward a linguistic and conceptual honesty. It stands to reason that the use of certain terms, like victim, affliction, wheelchair-bound, suffering from disability, should be pointed out not only as demeaning but as conditioning the society in discrimination and segregation and pity. Also, the proper definitions of disability-related terms, such as the differences between disability, impairment, handicap and insider words such as crip in the disability world or queer in the gay one, should be, and are, thrashed out by the group itself, in the academy and in the street. Language has to be precise in attempting to define oppression and in wresting control of words from their previous owners, from medicine, psychology and rehabilitation. A fresh language gives different meanings to the social, political and intellectual transformations that have taken place.

  Attitudes, customs and laws change, and language often reflects that change. In the medical lexicon, for instance, the three diagnostic categories that existed in the first half of the twentieth century under “feebleminded” were moron, imbecile and idiot, hardly neutral terms. These words reflected ideology. Medical language, as medical practice, is not exempt from expressing social beliefs. It is hardly an excess of political correctness that identifies conditions and people without apparent condemnation.

  On the other hand, academic language can be a barrier to understanding, even offensive, not only to the public at large but to disability movement activists. Big abstractions, esoteric language and incomprehensible jargon can be counterproductive in a field that hungers for the broadest possible participation. “We have to apply the principle of accessibility to our prose,” Paul Longmore said. “On the other hand, what any scholar does is technical and difficult to access. Still, it would be a pity not to, because disability scholars can make real contributions to disability rights.”

  When I return to Vermont, it is hard to explain to my professor friend that there are disabled people who take pride in their disability.

  “You've got to be kidding,” he says. “That sure sounds like trying to rationalize an intolerable situation. I've got to tell you that every time I see, well, not you, but some poor guy in a wheelchair, tapping out messages with a stick tied to his head, I want to run. I think, ‘Jesus, there but for the grace of GodgoI.’“

  I can only hope that those are not the words that come into his head every time he sees me. Still, I realize that it's not easy to convince ablebodied people that some among the disabled are not searching for cures, and that there are actually those who feel pride in their condition, no matter how debilitating and troublesome it might appear to the ablebodied. Bombarded as some among us are by negative meanings of disability in the law, in utilitarian philosophy and economics, in public discourse and in the seductive dreams of perfectibility, it seems an open question whether or not we can alter our attitudes to include and support all minorities, no matter how mired in old fears and hatreds, no matter how costly.

  The trickle-down effect of scholarship, and the education of teachers and the subsequent education of their students, is a slow process, but it is one way that attitudes begin to evolve from the narrow and primitive, from fear and paranoia, into clear and humane ways of thinking. At best, it allows us to broaden views, to open ourselves to discourse, to enable shallow biases to d
issipate. Although neither racism nor sexism nor homophobia has been eradicated by black studies, the women's movement or gay studies, these programs have at least shifted consciousness toward better understanding and tolerance. Thus, scholarly work in disability can give legitimacy to more evolved views, and help produce a history, language and civil rights perspective in the effort to create a new canon of beliefs and to delegitimize bigotry.

  SCHOLARS

  Often, disabled people are unwelcome in a culture because they are thought to deflect resources and attention from the group as a whole, invoking a lifeboat image of a society abandoning its weaker members. Responses to disability range from containment and control to abandonment and annihilation, but how one serves and treats disabled people is not based solely on resources. It's a complex policy issue, rooted in profound ethical considerations.

  Shifts in consciousness have by no means been universally progressive. In some places, infanticide is still practiced and has even been suggested in the United States, perhaps not to rid the world of six-fingered infants as is the case in some parts of Africa, but for what certain individuals consider severe disabilities such as Down syndrome or spina bifida. Many religions still believe that a disability is indicative of wrongdoings in a previous life. In many parts of the world, families still consider themselves shamed and discredited by a disabled child, forcing them to hide or abandon the cause of their misery. Everywhere there is discrimination in housing, education and employment.

  “The only reason anyone thinks that money spent on people with disability is wasted money is that the population as a whole assumes the disabled person just doesn't contribute anything,” says Adrienne Asch, Henry R. Luce professor of biology, ethics and the politics of human reproduction at Wellesley College. “The life prospects of disabled infants are unknown. You have to look at life as a whole. Who's to say if it's better not to have a disability than to have it? Every life costs and contributes different things. We can't know what any life costs or what it contributes until it is lived.”

  Recently, the controversial academic Peter Singer was appointed the new chair of bioethics at the Center for Human Values at Princeton. He takes the position that if you have a baby or a fetus with a serious disability, you should get rid of it so that you can try to have a better one. And, he suggests, you should be able to do it in utero or at any time during the infant's first twenty-eight days on earth.

  A well-known advocate of animal rights, Singer asks why it is worse to kill a human than a nonhuman. Why is it more tragic when people are gunned down by a murderer than it is when pigs are killed in slaughterhouses? He maintains that the argument can't depend solely on species membership, and, if it does depend on a being's self-awareness, its high level of rationality, its ability to think of its own future—”Well,” Singer says, “those are not attributes of infants either.” Thus, as he sees it, the killing of a defective infant is not morally equivalent to the killing of a person. “Very often it is not wrong at all,” he says. “In an area riddled with uncertainty, choices still have to be made. Someone may have inadvertently terminated a pregnancy of a musically gifted child, but because there is no way to test for musical genius, we have to judge by the only thing we have learned from a prenatal diagnosis: a disability.”

  “Singer's ideas are often seen as outrageous,” Adrienne Asch says, “but he's got a lot of company, including much of the bioethics community, the political left and the general public, most of whom have pretty terrible views regarding disability. Most people, if pressed, feel just the way he does or close to it. ‘You're such saints,’ people say to parents of the disabled. ‘It would be better if your child had never been born, you deserve so much credit, you're a hero.’ Or they say to a disabled person: ‘Have you considered killing yourself, aren't you sorry you were ever born?’

  “I think Singer is wrong on facts about people with disabilities, who can obviously have okay lives,” she says, “and, to the extent that they can't, disability is probably not the intrinsic reason. A lot of the reason is how society is set up to not treat people with disabilities very well. Why does he think that the nondisabled life is automatically better than the disabled life?” she asks. “And why does he think that pregnancies and babies are fungible? They're not cars. The point is that you wanted to be pregnant then and you already started planning your life around the birth of this child. I'm absolutely pro-choice, but if you decide to have a baby, you should damn well have it.”

  Adrienne Asch spends a lot of her time pondering how many resources should go to people with disabilities, when something is a human “variation” and when it is an “impairment,” whether the status of impairment should entitle people to different attitudes or services than some other human status does. She teaches various bioethics courses at Wellesley, courses on reproductive, ethical and social issues in genetics, assisted-reproduction processes, including sperm and egg donation, surrogate motherhood and cloning. Only when it has to do with prenatal testing or physician-assisted suicide does her teaching coincide with disability issues.

  “I dislike prenatal diagnoses because disability is only one characteristic of a person's life, infant or not. There is a whole range of other characteristics. Disability is not a burden with no redeeming benefits or attributes, and how does anyone know that it would take more effort to raise a disabled child than any other child? That's an assumption which might be wrong. The public assumes that it's terrible and burdensome and tragic but there is no information corroborating that view. You can find claims in old literature that a disabled child is the worst thing that ever happened to a family, but the recent literature argues that families with kids who have disabilities do about as well as any other family on measures of happiness or stress or satisfaction. It's possible that my male child would cause more stress than my female child, or my third child more than my second or the other way around. What would be nice to know, and you can't ever know, is if the infant will be happy, if you'll enjoy it, if it will enjoy you. These are things you don't know, and the problem with prenatal diagnosis is that you assume you do know. You say, now that I know my child is going to have spina bifida, I don't want this child anymore, even though I don't know anything else about the child except the disability part.”

  Another piece of this question is the glaring lack of support from doctors, social workers and genetic counselors for the parents’ decision to continue a pregnancy after a disability diagnosis. As things generally stand, these professionals are coercive, telling only the gloomy, negative story of disability, and the parents making such a choice are as stigmatized as the child will later be.

  “Of course disabled people don't like the way they're treated,” Adrienne says. “Society needs to adapt to all people, not to some people. Aborting in this case is misguided because it assumes there is only one standard of life. Given that, if the society thinks you shouldn't exist in the first place, it doesn't matter what kind of job discrimination laws you have, because with those assumptions you don't stand a chance.”

  Early on in her career, Adrienne Asch turned from an activist arena to a more scholarly one, writing for both academic and mainstream publications on the disability rights movement, on women with disabilities, on the psychotherapist's role in working with people with disabilities. “When I got involved with bioethics,” she says, “I wanted to communicate with the field to change mainstream bioethics writing, the kind of thing that medical professionals and philosophers, influential people, would read so they'd think in a new way about disability in terms of health policy and resource allocation.”

  In the context of her interest in disability rights, Adrienne became fascinated by bioethics and the complex issues surrounding transplants, suicide, the ethics of withholding treatment. “I was a Ph.D. student in social psychology and a practicing therapist,” she says. “I liked both things very much, but I came back from my first bioethics meeting ecstatic at the breadth and depth of the people I'd met, the passio
n with which they approached their work. I fell in love with a discipline. Bioethics is a field in which reasonable people can disagree, which is one reason I love it. These were people who were not in it for fame and glory. They really cared about the issues.”

  In 1987, she was asked to join the New Jersey Bioethics Commission as a social science staff member to think about surrogate motherhood. The commission took on the case of Baby Ann, in which a woman refused to give up a baby she had agreed to carry for a couple. One court said she had to give up the baby, but the state supreme court ruled that surrogacy contracts were null and void in New Jersey and that the state should make new legislation regarding surrogate motherhood. The commission was charged with thinking about this legislation and Adrienne was one of the people working on the project. She loved the work and eventually did her Ph.D. on attitudes toward surrogate motherhood, finished it in 1992, and began looking for academic jobs in bioethics as well as in social work and women's studies. “Then,” she says, “a friend of mine told me about the opening at Wellesley. I applied but never thought I'd get it. The Henry R. Luce professorship of biology, ethics and the politics of human reproduction simply sounded like it was meant for a very senior person and my doctorate seemed much too recent. In my application letter I wrote that if someone was to ask me to design my dream job, this was it. I got the job and it truly is my dream job.”

  She has taught courses on disability but also includes disability-related issues in courses she teaches on other topics. Among those issues is abortion after prenatal testing. “Not everybody would teach this kind of thing,” she says. When she teaches a course on motherhood, she includes discussion on single motherhood and lesbian motherhood, on welfare issues, on disabled women. “Not everybody would teach this,” she repeats.