A Matter of Dignity

by Andrew Potok

  The notion that disability is not something that must be cured or prevented places disability scholars and activists at odds not only with physicians and genetic counselors but with a lot of feminists. “While feminists argue for reproductive choice,” Rosemarie says, “society's prejudice against the disabled practically forces women to abort a fetus suspected of having a disability. That doesn't mean that all disability activists would say there ought not to be genetic testing.”

  When it became clear to her that no one else was talking about disability from the viewpoint of gender, race, ethnicity and class, she dropped her earlier intentions to write a doctoral dissertation on Yeats and to study romantic poetry. Instead, she decided to write about the way disability was represented in literature. Though a lot had already been written, it seemed to her to be entirely from an unpoliticized perspective. “Lameness was a metaphor for castration,” she says, “another one of those worn-out, unchallenging views.” She became very aware of characters as disabled people. No one else had talked about it. “It was exciting, heady and fun,” she says. While still in graduate school, she wrote on the novels of Toni Morrison, each of them replete with disabled characters. Many critics had detected a literary gold mine in terms of gender and race in Morrison's books but no one had seen it in terms of disability. Rosemarie put together an analysis of how these characters operated, and when this caused a stir, she began to understand that she needed to do more than her individual work. She needed to create a field that would give the work a context.

  “I learned that disability studies existed in sociology and anthropology, in rehabilitation and government. My task was to bring it into the humanities. But I discovered that it's hard to work where there is no institutional framework, because there are no conferences, no academic positions defined in this way. So I had to create an institutional context. By using the structures of our profession, calls for papers, for conferences, calls for published collections of essays, I began networking via the Modern Language Association, the American Studies Association, the Internet listservs and bulletin boards, and thus I discovered the few others who were also doing this work in isolation.” They began to infiltrate the profession, running on their instincts, proposing panels at conferences, editing books.

  One of the major interests in the humanities is identity, another the relationship between the body and the word. Disability was a good fit into those categories in fresh ways. For twenty years academics had been talking a lot about race, gender, ethnicity and sexuality. Disability now entered the discussion for the first time.

  I ask her views of identity politics, adopted by some groups, vilified by others.

  “Identity is a little bit like nationalism,” she says. “It's highly problematic theoretically because it can produce separatism, based as it is on the idea that somebody is different from somebody else. But when you press the concept of identity hard, it's fragile and problematic, women obviously being more than just women, a disabled person a lot more than just that. The nonintellectual argument against identity is ‘we're all Americans, so why take it further?’ It's disruptive. The more intellectual and sounder argument is that identity can be a very coercive category, leading to political fragmentation and division. Also, identity is almost always conferred from the outside. If you're stereotyped into the disability identity, you have to reimagine what it is to be a person with a disability so as not to accept societal definitions.”

  She tells me that she used to have to beg to be on panels in conferences. Now she gets a lot of invitations, even as a keynote speaker. Recently, the National Endowment for the Humanities funded an institute where she and historian Paul Longmore trained twenty-five academics from around the country. “One of these scholars was an anthropologist,” Rose-marie says. “Several were philosophers who wanted to fold disability into the way they teach ethics. We had historians and scholars of religion, several literary critics, a couple of people from performance studies, some from women's studies. They ranged in rank from full professors to relatively fresh scholars. Some had disabilities and were coming out for the first time. By studying disability as a historical category, it opened the way for people with disabilities to enter the academy just as gender studies opened the way for women, race for blacks.”

  A couple of months after Rosemarie's institute had run its course, I talk to Paul Longmore again. Post-polio syndrome affects his arms and lungs and vision. He uses a ventilator to help him talk. “If it hadn't been for the disability rights movement and all that it has accomplished,” he says, “I would be in a nursing home rather than teaching history and co-leading the institute.” He tells me that the National Endowment for the Humanities had sent a program officer to see what this institute they had funded was all about. Their fear was that the participants were concerned solely with identity politics, that they were trying to get legitimacy through the Endowment's academic credentialing.

  “The NEH officer sat in on everything,” Paul says, “and after a couple of days, told us of his amazement at the intellectual seriousness of what we were doing. He realized that we were dealing with a set of issues that not only have to do with experiences and the social standing of people with disabilities but issues with vast implications regarding cultural analysis and social arrangements. We were addressing all the traditional questions that the liberal arts had always addressed. This kind of study via disability has implications for all disciplines.”

  While their institute was still in progress, the San Francisco Chronicle ran a piece that, in trying to achieve balance in their reporting, found a man in a conservative think tank who admitted that he had never heard of disability studies but accused them anyway of being nothing more than another group seeking to be pitied as victims.

  As we talk about the importance of not only the topic of disability on campus but the presence of disabled people there, Rosemarie tells me a story of a recent job opening for an English professorship at another university. “There's a very structured way that a department conducts a job search, following certain guidelines,” she says, “but one thing a school has to do is provide accommodation.” In this case, a blind candidate applied and had to decide how much and when to disclose. At her campus interview she gave them a list of accommodations she needed. The department interviewers realized that they had many nondisabled candidates so they asked themselves why they should mess around with anyone who is blind. How can she do the job, who's going to meet her at the airport, how is she going to find the bathroom? They decided that she wouldn't be happy at their university. Six hundred fifty people applied, fifty made it to their short list. Why bother with the complications of this blind woman? How would she fit in? And what about the extra expense? So they decided to leave well enough alone and go on to another candidate.

  Rosemarie says her belief is that if there is some awareness, if disability has been established as an issue of integration and an inclusion priority, then the administration would have gotten the point, understanding that the person would be the only blind person in the department, making an interesting diversity issue, even a draw for students. Perhaps she would be a person who could teach disability studies, fitting right into the way they teach gender and race. Maybe she could really offer something new and different. Maybe it would actually be a privilege to have her. “The point is that if you reframe disability as a diversity issue or a category of difference or inclusion,” Rosemarie says, “and they see it that way rather than wonder how this is going to work, well, it becomes a matter of consciousness-raising. It's so easy for them to stop at thinking: My God, if it were us, we wouldn't know how we would teach if we were blind, and then they start thinking of it not only as a confusing and unsolvable problem but an expense. The fact of disability studies on campus helps solve this problem.

  “I'm an optimist constitutionally rather than in terms of the evidence,” she says. “The ADA, its logic and its presence, is basically transformative. I think the country is ready to
look at disability as a political issue, though just like feminism, there's a backlash, meaning that things will go slowly. There's a lot of work to be done and there'll be a lot of resistance, but I think that most people are of good will. Even so, I think it's very important to be evangelical about it. It's very hard to explain that the ADA is a matter of political right and integration, not charity, not inspiration.”

  A powerful example of the academy as a force in identifying cases of exclusion and blatant discrimination is the teaching of the history of American immigration, which chronicles the policy of automatically turning away everyone who was sick or disabled as they showed up at Ellis Island and other entry ports. Obviously, they were expected to deplete the treasury, spread misfortune into the breeding stock and probably not contribute much of anything. Through disability studies, the knowledge of the existence of such policies will seep into the consciousness of American historians, and will work its way into the classroom and the general population just as race and gender did.

  In the academic culture, the opposition maintains that the academy should be about objective learning, literature about aesthetics. Politics, they say, has no place. These old, entrenched elements are the worst adversaries of disability studies, seeing disability as the straw that will break the camel's back. “First we had the women coming in,” they say, “then the blacks, the homosexuals, and now we've got the cripples. When is it going to end?” There is also an unfortunate competition among other minority groups, who say that in an economy of scarcity, disability is going to take a big piece of the pie from them.

  “Thinking of the parallels of the older race and gender movements,” Rosemarie says, “what is happening in the newer disability movement is reaping the benefits from the excesses and oversimplifications and naivete of feminism at its beginnings. Using feminism as a model, we have the experience of feminism becoming more sophisticated, more self-aware. We don't have to go through that long, evolutionary period.”

  As for me, I must admit that there were times when the morass of identity politics, immersion in the literature of disability scholarship, a feeling that disability was the sole focus of my existence, threatened my equilibrium. In the midst of this crisis, I began late one evening to read Samuel Beckett's novel Mahne, which washed over me like nectar, sweeping away everything that was bogged down by scholarship, theory or ideology, everything that was tinged with sincerity or correctness, humility or goodness. Just in time, I was swimming in Beckett's sea of purity, the absurdity of existence, the art and dream that underlie not just the pedestrian struggle for sanity but all anguish. I was awash with relief at drifting ecstatically in the inner logic of irrationality.

  In talking about the role of feminism in her development, Rosemarie says that when she first found it, feminism was liberating because it showed her the systemic way that gender operates. It had an effect on her life and it wasn't just a shortcoming of her particular situation. She says that she wasn't blaming gender, but gender gave her a way to figure out who she was, what her strengths were, what about her womanhood was useful, what was a liability.

  “Younger women today think they no longer need feminism,” she says. “They think that the patriarchy has been defeated, that there are no more issues. They benefit from the gains without understanding that it's an ongoing situation. Feminism seems redundant to them because their lives aren't that different from the men they know. But in a black college like Howard, there are tremendous rifts between men and women. The women strive for internal validity and empowerment. The question for them is: Which comes first, womanhood or blackness? Is your allegiance first with women, which includes white women, or is it with all black people, both men and women?

  “Part of the notion of representation is how we define things. It's not exactly finding the right words for reality, it's creating a reality by using the words we want to use. We're more aware ofthat than we were twenty years ago, feminism having done this embarrassing thing, having been overly paranoid, not open to understanding diversity within the group. If we can understand that there'll be a lot of conflict within disability studies, it can be a productive conflict. Taking in other forms of identity is something feminism didn't do a very good job of.”

  Her next book project when she finishes Staring is The Cultural Logic of Euthanasia, about the use of euthanasia to eliminate a spectrum of human differences and create a standardized human model that will be achievable through technology, as in the human genome project, and will then ideologically triumph under the banner of eliminating disability. “It's a highly problematic ideology,” she says, “going against what is fundamentally human variation. I want to examine the historical elements that have led us to where we are.”

  Rosemarie feels strongly that activism can come as effectively from the academy, in spite of the belief that the university is an ivory tower, as from nonacademic sources such as the law. “Teaching is unequivocally an activist pursuit,” she says. “We prepare students and teachers to go out into the world, so ours is an important act of dissemination, determining what will be taught, what books used, what ideas considered. If, for instance, the notion of disability studies is introduced in freshman writing courses, it will have a big impact. If in history class you have a teacher who shows that disability is one category of analysis, attitudes will be affected. I love this work, investigating, analyzing and examining the ways that disability is represented in the culture, with the notion that the personal is political, that images and representations have a tremendous impact on the ways that the world operates.”

  INTERNAL MUSIC

  CONNIE TOMAINO

  usic therapist

  PROLOGUE

  I used to have little battles with Loie, my therapist wife, part of whose therapeutic arsenal is a technique called sand tray, an art therapy in which children and adults create worlds with objects that Loie stores on dozens of her office shelves, as crowded with these knickknacks as the cabinets of the Victoria and Albert Museum in London. She calls it art therapy, while I in my snobbishness would retort that art is art, therapy therapy.

  On the other hand, who's to say that the impact of art is more sustaining than the impact of therapy? Still, I thought, therapy is art's enemy, as is politics or sociology or scholarship.

  But when Oliver Sacks, the neurologist and writer, suggested I get in touch with Dr. Connie Tomaino because of the fascinating work she was doing with music therapy, I had shed almost all my skepticism about the entire category known as expressive arts therapy. It had finally occurred to me that some of us, I very much included, expressed ourselves better non-verbally So, why not use any technique at all to draw out of us whatever is stuck inside unexpressed? I realized that my difficulty is not with the idea but with the language, with the use of the word art. I have an equally hard time with the art of cooking or of motorcycle maintenance or of lovemaking. To snobs like me, art is resistant to easy comprehension, it is cryptic, self-referent and hard, hard, hard. When you dig deep for its meanings, you come up with more than improved self-esteem. But because I had only the breeziest of notions about the role of music in healing beyond the obvious “soothing of the savage breast,” Sacks piqued my curiosity.

  I had read Oliver Sacks's A Leg to Stand On and now thought about the epigraph he used to begin his chapter on the role of music in his recovery from a shattered leg: “Every disease is a musical problem, every cure a musical solution,” quoting the dark, brooding romantic writer Novalis. With the return of his own personal melody, Sacks said, he could walk again. Walking's natural rhythm and melody came back to him, like remembering a familiar but long-forgotten tune.

  Music plays a central role in my life as well. It has given me powerful pleasures. When I feel scattered, confused or in a lazy, dull mood, the sequences of musical lines can not only soothe me but order my thoughts, regroove and make sense of them. Or they may transform simple sequences in my brain into more complex ones, modifying them and enriching them. Its com
plexity and resistance are among music's special allures.

  A few years ago, during a hospitalization for depression, I turned to music and it did indeed play a part in defending me from ongoing panic. But when the hospital first offered various art therapies, music among them, I balked. Still a snob about art, I resisted slopping around in buckets of clay or listening to easy music. But we were asked to lie down on the carpet to listen to music, relaxation music. I was horrified by the crashing of waves on sandy beaches, the mournful airiness of pipes, the maddening chime of new-age bells. “Relax,” the man on the tape said in the syrupy voice it took no time at all to hate. “That's it. Good,” he continued, his deft tongue flicking his palate like a butterfly landing on a kettledrum. “Good,” he said again.

  The function of that music was to numb, to soothe, to give momentary respite to our whirring, obsessed minds, and, if not for my near-allergic reactions to those treacly sounds, I might have profited from them. On the other hand, when I watched Connie Tomaino work with patients, I realized that this was another realm entirely, the realm of maintaining or restoring humanity to those whose humanity was hanging on by a thread. “Music is not a luxury but a necessity for such patients,” Tomaino said. “It acts as a Proustian mnemonic, eliciting emotions and associations that have been long forgotten, giving patients access to moods and memories, thoughts and worlds that seemingly have been completely lost. Music opens doors to the entire thought structure and personality of the past. For some, playing or even imagining music, even the mention of an opus number, fires the brain's mechanisms of memory and allows small restorations or transformations.”