A Matter of Dignity

by Andrew Potok

  Given most people's ideas regarding prenatal diagnosis, euthanasia and other difficult issues, I ask if she thinks she is influencing the thought of students or academics or the population at large in a meaningful way.

  “I don't feel enormously optimistic about my views becoming popular with either the professional community or the general public,” she says. “I think it's very difficult for the medical profession or the bioethics world to imagine that disability is not a tragedy. But I have to believe that ideas make a difference. Otherwise there's no point in being a scholar.”

  I first met Adrienne Asch in the ballroom of a hotel where we were both attending a disability conference. She was brought over to me by a retinue of followers and admirers. “You wrote a book about blindness,” she said.

  “I did. Did you read it?”

  “No.” For some reason, we were facing each other like warriors, she with her white cane nearly up to her chin, I clutching the harness of my dog. “Are you a member of the National Federation of the Blind?” she asked.

  “No.”

  “Why not?”

  I said something about having once been, then, not agreeing with much of their philosophy, I quit.

  Even though we didn't know each other, she was not pleased. “You should reconsider,” she said. At our first meeting and during each of our subsequent talks, it was clear that she had little patience for niceties. Her views, honed during some thirty years of involvement in disability issues, are passionately held. Adrienne Asch was born blind. The difference between the experience of a person congenitally blind and one like me who has seen well into adulthood is enormous. So is the place and importance of blindness in our lives. She is supremely focused on her scholarship, the complicated webs of her bioeth-ical thinking, while I am in a constant quandary about the world, seduced by ambiguity and uncertainty. Her direction is straight ahead, mine wanders, is distracted, nudged off course, derailed into anxiety or panic. I long for what I've lost while Adrienne seems to be way beyond that kind of thinking, or perhaps has never visited this unproductive terrain.

  For most of us who have once seen, the seduction of the sighted world never diminishes. On the other hand, the congenitally blind were born into the world whole, and only learn by being told that they are lacking a sense that others can't live without.

  Adrienne Asch is unimpeded by my kind of grief. What this difference creates in terms of our personalities might be huge even though our other experiences—the joys of study, reading, thinking, contributing, the joys of human relationships, of music, food, sex—might be similar.

  “Kids weren't taught cane travel until high school,” she says, “so I got along without a cane until then. I was very happy to get a cane when I got it. I never even considered a dog because I don't like dogs. I thought having a dog was stupid. I like the idea that when I need it, I use a cane and when I don't need it, I put it away. Also, I despise the way the public treats people with guide dogs, giving graduation diplomas to the dog, acting as if the dog is a saint. I can't bear people saying that if I had a dog, it would act as an icebreaker. That's the wrong thing to say to me. If ice is to be broken,” she tells me, “I'll damn well break it myself.”

  As prickly as Adrienne can be, I find myself warming to the rock-hardness of her positions, but when I make the mistake of asking how well she manages getting around the Wellesley campus or anywhere else for that matter, she lets me have it. “The next time someone comments on my being wondrously independent,” she says, “I think I'll throw something at them. I'm not overly independent or dependent. I'm just a person trying to live my life. Casting issues in terms of dependence or independence is simplistic. Life is not like that.

  “When it's appropriate,” she says, “I speak out on disability issues on the Wellesley campus, but I'm not here to be a poster child for disability. I think I've made a difference to students but I don't think it's because I have a disability but because I'm a good teacher. I don't know if they think differently about disability because of me. I think it's good that students at Wellesley who have disabilities don't show up on my doorstep and see me as a disabled role model, though if they did, they'd be welcome. I've tried to persuade other faculty and staff with a disability to be more vocal about disability issues but I haven't been very successful at that. There's a great deal of shame for some people in acknowledging their disability. A lot of successful disabled people believe that their success depends on pretending that their disability doesn't exist and they don't want to affiliate with others with a disability. I think that's a mistake, but everybody has to figure out for themselves how to survive.”

  Adrienne Asch became interested in bioethics in the early 1980s when she read about a woman with cerebral palsy who petitioned a California court to end her life. She wondered what else was involved. Could the woman be helped out of a possible depression? Was she getting counseling about better strategies for staying alive and leading a less miserable existence? Should a court decide who is allowed to kill themselves, who not? And who, if anyone, is to do the killing?

  At about the same time, the parents of Baby Jane Doe, an infant with spina bifida, asked the court to stop their child's hospital treatment and to let her die. Someone sued the hospital to prevent it.

  Even though Adrienne is left-wing in her politics, she was surprised to learn that the ACLU and other left-leaning organizations were supporting the disabled woman's petition to be allowed to die. According to Adrienne, everyone seemed to be screaming that, were they in her condition, they too would want to die. The woman was leading a pitiable and degrading existence, they said, and as for the parents of Jane Doe, they ought to be able to end their infant's life because, after all, she wasn't going to have much of a life. “The Reagan administration wanted to stop it just because of their stance on abortion,” Adrienne says. “They weren't interested in babies, just in being pro-life maniacs. It seemed to me that if the baby weren't disabled, the parents would be charged with murder. It was clear to me that bioethics and the left and the general public all had terrible notions about disability, even worse than I thought.”

  Though I personally find the view that only the healthy should be allowed to live appalling, I have never had to attend to anything more serious than the question of continuing the genetic line of retinitis pigmentosa and thus blindness. When I recently said those words to a friend, his momentary silence communicated his shock. “More serious than blindness?” he finally said. “What could be more serious than blindness?” Though I realize that for most people, the possibility of genetically transmitting blindness is hardly appealing, my children's view of this would be shocking to the members of that chorus. They are not only glad to be alive in spite of my daughter's having inherited retinitis pigmentosa from me, they are also, to my surprise, not particularly concerned with the possibility of saddling their own children with it. “If I have to have a kid with RP, I'll take it,” my daughter said. Though going blind over many years has not been easy for me, sometimes causing panic and depression, still I would be shocked if anyone aborted solely for reasons of retinitis pigmentosa.

  Nonetheless, given a chance, most of the people I know would abort a disabled fetus in spite of acting and talking an enlightened belief in diversity. Diversity, like poverty or any other kind of oppression, is not only tolerated but deeply felt and understood, as long as it happens to someone else.

  When I ask about her views of the human genome project, Adrienne is not pleased with my question.

  “It's like asking when did you stop beating your wife,” she says. “There's no simple answer. I'm not opposed to any kind of knowledge, but I haven't seen any great knowledge gained. Perhaps there are potentially good uses for it though I don't know what they would be. We've known about the genes that cause cystic fibrosis and Tay-Sachs and sickle cell anemia for a long time, and none of that knowledge has resulted in better treatment. It's not obvious that knowing which genes influence which diseases or traits is
going to make social services or medical care better. It might, but it's more likely that people will just develop more and more tests for prenatal diagnosis and abortion. They're talking about prenatal diagnosis of fetuses that might develop breast cancer or early-onset Alzheimer's. Do we really want to be aborting every fetus that might have one of these diseases? What about diabetes or heart disease? Whom are you going to allow to be born? We're all going to die of something. I'm not sure I want to live in a society that does more and more testing, more and more eliminating of people who aren't perfect or who don't have the proper IQ. What about predispositions for high cholesterol or hypertension or back problems? Are we going to keep people out of the workplace for those reasons, as opposed to making the workplace better for those people? It's not at all clear what they're going to cure or how. It also proposes that all those characteristics like aggression, alcoholism or adventurousness have genetic roots, but genes are certainly not the whole story. They are ignoring the interaction of genes with each other and with the environment.”

  In her book Extraordinary Bodies, Rosemarie Garland Thomson considers the written and pictorial representation of physical differences, including a wide variety of disfiguring characteristics, such as scars, birthmarks or unusual proportions. She politicizes bodily differences, identity categories, disclosing how the physically disabled are produced by way of legal, medical, political, cultural and literary narratives.

  “Disability is a system that produces subjects by differentiating and marking bodies,” she has written. “Furthermore, this comparison of bodies legitimates the distribution of resources, status, and power within a biased social and architectural environment. The category of disability exists as a way to exclude the kinds of bodily forms, functions, impairments, changes, or ambiguities that call into question our cultural fantasy of the body as a neutral, compliant instrument of some transcendent will. Disability is a broad term, within which cluster ideological categories as varied as sick, deformed, ugly, old, maimed, afflicted, abnormal, or debilitated—all of which disadvantage people by devaluing bodies that do not conform to cultural standards. Thus, disability functions to preserve and validate such privileged designations as beautiful, healthy, normal, fit, competent, intelligent—all of which provide cultural capital to those who can claim such status.”

  Thomson, an assistant professor of English at Howard University, teaches American literature and feminist theory. She integrates disability studies into that teaching but because of Howard's understandable preoccupation with race, her work in the disability field takes shape elsewhere.

  “Howard University is a great place to work,” she says, “because race is such an important category of analysis here. It's very useful to always be focused on that, but one of my frustrations is that at Howard, race is such a central category of consciousness that it trumps all other identity categories. We don't even have a women's studies program. There's an interest but it's hard to institutionalize it. There's also a long-standing conservatism in black colleges and universities, clearly a post-colonial phenomenon. If you get some power, you conserve that power. Disability studies seems to some people here not only as a negative community to associate one's self with, but a distraction from the primary issue.”

  Being a white person in a predominantly black institution is as replete with fascinating paradoxes as men talking of feminism or the ablebodied about disability. As a feminist and a disabled person, Thomson is an insider when talking to those groups, while being very much the outsider when teaching black literature to black students. “I never forget these ironies,” she says, “and I hesitate therefore to make naive, oversimplified, reckless generalizations.” She has learned that within disability studies and feminism, intellectual discourse should be open to all, meaning that no one should try to create an exclusive environment.

  A dynamo in her field, Rosemarie promotes disability studies at every opportunity, speaking, organizing, editing and writing, making contacts and connections, motivating everyone around her. “I'm naturally very social and gregarious,” she says, “the Mrs. Dalloway of disability studies. I love bringing people together.”

  She works mostly in her office at home, surrounded by totems and posters, mainly from disability conferences. She recently came back from Turkey with a little plastic statue of the Artemis of Ephesus, not the run-of-the-mill Greek goddess representing the hunt or virginity, but a fertility figure, not exactly deformed though her torso is covered with a pattern of imbricated eggs, her gown with bees. On one wall hangs a reproduction of a Mary Cassatt painting of two women having tea. “It's as if there were a place for me in that painting,” she says. “My real professional self is having coffee or lunch or dinner with colleagues. I even love committee meetings.” People at the National Endowment for the Humanities started her on collecting disability figures, four so far, including Barbie's friend Becky in a wheelchair, Becky as school photographer.

  “My students don't have to accommodate my disability in any way so it doesn't come up,” she says. “It just is what it is because it's so visually evident. Most of us who are disabled and consider ourselves capable in the world have had to identify against the disabled label,” she says, “so to embrace that label is both liberating and scary. Like so many of us, I was raised in denial about my congenital disability, which was never discussed in my family.”

  “It's strange not seeing what a person looks like,” I tell her. “I don't see a person's color or disability. How apparent is yours?”

  She laughs. “I find a strange irony in my appearance,” she says. “On the one hand, I think my appearance is very ordinary. I consider myself to be average-looking, middle-aged with gray hair and glasses, working really hard at not being matronly. Ordinary, I'd say, except that I have half my left arm and only four fingers on my right hand. In other words, you can really find me easily even though having an arm missing is not like having a head missing. Still, it's quite obvious and it can take people aback, sometimes freaking them out. When I was a teenager, I must have had my right hand on my face and a kid in my class blurted out: ‘Do you know you only have four fingers?’ I'm very aware of who is looking where and when, when they notice the absence of one arm. The book I'm now writing is about the stare, an important definer of the relationship of the so-called ablebodied to the disabled. Anyway, people sometimes become very uncomfortable regarding my arm, staring, then jerking their eyes away, and usually only later noticing the incomplete right hand.”

  In a speech on the way disability is portrayed in popular photography that she gives in different venues around the country, Rosemarie talks about staring. “In contrast with other forms of casual or disinterested looking,” she says, “staring estranges and discomfits both people engaged in this awkward partnership. Starers gawk with abandon at the prosthetic hook, the empty sleeve, the scarred flesh, the unfocused eye, the twitching limb.” She points out that in many societies it's considered rude to stare. The blatant stare of “normals” directed toward the disabled is considered aggressive, demeaning and unwanted, as is the lewd sexual leer of men toward women.

  On the other hand, many disabled people's experience, including mine, of being fixed by a stare depends on who is doing the staring. A child's exploratory stare can express the innocent wonder of absorbing something new, while a sneering or disgusted gawk underlines the perceived difference between us, the dynamic of staring defining the starer as normal and the object of the stare fair game as an object.

  “Will the staring book or any other of your books include your personal experiences?”

  “Though I respect many of the disability memoirs I've read,” she says, “I have no desire to write one. I'd never deny my disability but I have no need to personalize it. I have noticed, however, that if you're a denier, people cooperate in your denial. I don't want to be sentimentalized or patronized and I have a good nose for smelling that out, but by identifying myself as disabled, I open myself up to that kind ofthin
g.”

  Having been born with her disability as Adrienne Asch was born with hers, Rosemarie defines the huge difference between those of us who have come into it later in life and those, like her, whose disability is congenital. “If you have a congenital disability you tend not to experience it as loss,” she says. “I truly don't feel a sense of not being able to do things because the things I can't do I simply never did. A congenital disability creates a sense of one's self as complete, which works against a narrative of bodily transformation and catastrophe that I read in a lot of other people's disability stories. When I read disability memoirs whose problems occurred later in life, I realize how different those stories are from mine.

  “When you have a disability from a very young age,” she continues, “the way your parents frame it is important. The pattern seems to be that the parents say: You are not disabled, there's nothing wrong with you, you're as able as anyone else, which is, on the one hand, very positive and enabling. On the other, it requires you to identify against a group, so you become a kind of success story and your success depends on being different and better than those other people whom you really know you're like. I've found that this is quite common, not just my own family's neuroses.”

  “Did your disability lead you into disability scholarship?” I ask her.

  “My life was shaped a lot more by being a woman than a disabled person,” she says. “I was a late bloomer in terms of disability studies, having done marriage, children and all of that first.” She had a master's degree from fourteen years before, and only after raising her children did she apply to a Ph.D. program at Brandeis. “The social constructions of disability are logical extensions of the theorizing of gender,” she says. “I still use this as a template for talking about disability. Feminism politicized me, making me understand that my individual struggles, the personal liabilities, weaknesses and neuroses, weren't personal at all.”