By Meg Kimmel
Is anyone truly normal? In the growing field of disability studies, new questions are asked.
When Park McArthur ’06 audited Associate Professor of English Ann Fox’s Extraordinary Bodies course during her senior year, it was her first formal introduction to the area of disability studies.
“I was the only visibly disabled person in the room,” says. She remembers feeling uncomfortable at times, as though she should
have something profound to say from her perspective as a young woman with a degenerative muscle disease, but it was still early in her understanding of her personal relationship to this new area of study. “I was pretty quiet most of the time.”
Things began to change when McArthur went to graduate school at the University of Miami. “When I ran into some kind of physical obstacle at Davidson, I could call [Associate Dean of Students] Kathy Bray, and she would address the problem by that afternoon.” But at the University of Miami, McArthur couldn’t even get help finding an accessible apartment. She began to see disability not simply as a personal issue for her, but as a political issue for a sector of the population marginalized by a world built around the notion of what it means to be “normal.”
And there have been other changes. As an art major at Davidson, McArthur worked with paint on canvasses. “My physical reality helps me reevaluate what I’m doing as an artist. As my disease progresses, I can’t handle large canvasses anymore, and I can’t suddenly decide to take up ceramics. So, in turn, I have to ask, what forms, materials, processes are available to me based on these shifts in ability and perspective? I have to find new ways to articulate myself as an artist—and part of this is expanding my ideas of what art is and what artists do.”
After earning her master’s in fine arts, McArthur is now back home in Chapel Hill, N.C., spearheading Presence Is Progress, a multi-leveled community arts project funded by a grant from the town’s public arts office. McArthur describes her project as one that “acknowledges, celebrates, and insists on continued advancement for people with disabilities.” At its center are “mobilizations,” events in which people with disabilities move about the town as a group—being present in society, engaging and dealing with whatever pathways they encounter in the course of the route. Also involved are passersby who participate as witnesses, and, finally, viewers who will experience photographic and written documentation of Presence Is Progress in exhibition spaces.
The first mobilization in early March 2010 attracted about 50 people; 25 more came to another staged in Chapel Hill’s Peace and Justice Plaza later in the month. “When groups of people gather—people who are similar in some way, especially people who are not considered the norm—those who see them wonder, ‘Why are you here?’” And the answers to that question are many, says McArthur—social, political, and very personal.
Two photographers are documenting the mobilizations for several exhibitions across the state. McArthur says, “I believe that as a civil rights movement, disability rights needs to be documented. The images can be powerful.” In September, McArthur will participate in the Whitney Museum of Art’s highly-selective independent study program. As a politically engaged artist who is continuing to widen her sphere and negotiate her own disability, McArthur sees her first exposure to disability studies at Davidson as the beginning of this growth—and of her own contribution to the field.
changing the world
Think about the array of identity studies that have emerged in college curricula over the past several decades: women’s studies, queer studies, African-American studies, ethnic studies. Disability studies is among these, with a number of major universities now offering doctoral programs in the area. And a few colleges and universities, Davidson included, offer undergraduate courses that deal with various subject matter through this lens, one that recognizes the perception of a physical norm, and the thousands of ways in which humans depart from that perception. Ann Fox says that Davidson is a rarity, the only school of its size to be doing intense work in disability studies.
Where did these new areas of academic inquiry originate? What do they have in common? Rosemarie Garland-Thomson, named one of Utne Reader’s “50 Visionaries Who Are Changing Your World” for her groundbreaking scholarship in disability studies, has an answer: the civil rights movements of the 1960s and 1970s. “The world changed,” says Garland- Thomson, a professor of women’s studies at Emory University who visited the Davidson campus three times in 2009. With the civil rights movement and legislation of that era, public spaces began to open up in new ways to women, to African-Americans, to the gay and lesbian population, and to people with disabilities. “Think about it,” she says. “It used to be a rarity to see people in wheelchairs at the movies, shopping, in our town meetings. Now it is an everyday occurrence.”
And just as women’s studies suggested a review of literature and art from a feminist vantage—think of Madame Bovary, or the works of Toulouse Lautrec, for example—disability scholars began to think about what it means to be human from a disability point of view. “I thought, maybe we should look at Ahab in Moby Dick in a new way,” says Garland-Thomson. “Or at Benjy Compson in Faulkner’s The Sound and the Fury.”
For novices, it’s disconcerting to begin thinking in terms of identity studies; it requires discipline, new ways of thinking, and even new words. And it is important to remember that disability is not a monolithic experience. Disability ranges from visible degenerative diseases like Park McArthur’s condition to an invisible cancer, chronic anxiety, deafness, or simply old age. Fox points out that disability is a mutable category and sometimes a socially constructed one. “Think, for example, how ‘hysteria’ or homosexuality were once considered diagnosable ‘illnesses,’” she says.
Garland-Thomson coined the word “normate” to locate the notion of normalcy against which all levels of disability are compared. For Americans and most Westerners, the normate is a healthy, young, heterosexual, white male. Through the lens of identity studies, everything else is “less than”: the aged and women, as well as gay, black, brown, yellow, and disabled people. Words that have moved into our vocabulary to suggest less than, often used in jest, demonstrate this relationship with the normate: “lame” or “retarded,” for example, in the case of the disability identity.
Garland-Thomson first visited Davidson in January 2009 in connection with RE/FORMATIONS: Disability, Women, and Sculpture, an exhibition in the Belk Visual Arts Center’s Van Every/Smith Galleries that showcased the work of five female artists, four of whom are disabled. RE/FORMATIONS began several years ago in the mind of Jessica Cooley ’05, co- curator of the exhibit and assistant curator of the galleries, while she was preparing for the dedication of Davidson’s sculpture garden.
Researching public sculpture, Cooley noticed a marked disproportion among male and female artists represented in sculpture gardens worldwide. “The search led me to ask, ‘Why aren’t there more women producing public sculpture in America?’” she says. “Around that same time, I began reading about disability studies, and the idea for RE/FORMATIONS just kind of fell together. I started to realize that each of these identities—being disabled, being female, and working in sculpture—had certain elements in common.”
“To the best of our knowledge, there hadn’t been another exhibit like this in the country,” says Fox, co-curator of RE/FORMATIONS. The exhibit traveled to the National Institute of Art and Disabilities in Richmond, Calif., after it closed at Davidson.
Garland-Thomson returned to Davidson in October 2009 to talk about her new book, Staring: How We Look, and for the opening of another art exhibition, STARING, also a collaboration between Fox and Cooley. The exhibit centered on artistic images of disability and staring, and included paintings and drawings by Doug Auld and Chris Rush, photographs by Weegee, Diane Arbus, and Garry Winogrand, and works from the college’s extensive collection.
Like other identity studies, disability studies is naturally interdisciplinary, cutting across departments and disciplines and defining points of intersection and insight. Garland-Thomson sees Davidson as being on the cutting edge of this field in higher education, particularly in the arts. “With Ann Fox’s work in literature, Neil Lerner’s in music, and Jessica Cooley’s collaboration with Ann to mount these fabulous art exhibitions, it’s just incredible.”
Both Cooley and Associate Professor of Music Neil Lerner point to Fox as the prime mover in disability studies at Davidson. Before joining the faculty in 1999, Fox taught at Washington University in St. Louis, where she became involved with a political theatre called The DisAbility Project. “The disabled and nondisabled people in the group were making and staging art together,” Fox says. When she came to Davidson, she used disability scholarship in a reading of Tennessee Williams’ play Suddenly, Last Summer, as part of a lecture in the English Department’s senior capstone course.
“After that lecture, colleagues encouraged me to apply for a National Endowment for the Humanities Summer Institute on Disability Studies,” and it was there that Fox met Garland- Thomson. “That’s when things really exploded. Suddenly, I was thrust into a community of amazing scholars and activists, learning more and more each day.”
Lerner talks about getting hooked by the subject as well. “Once you begin to think about it, you realize disability is a pervasive fact of life that affects everyone—and once I started to see those structures and think about them, I couldn’t go back,” he says. He realized that no one was looking at music through disability studies, and wondered, “Why is there no conversation?”
He began to go to meetings of the Society for Disability Studies and started to think about disability as a topic he might address in his scholarship. After participating on a panel about music and disability with Joseph Straus, a music theorist, they decided to publish a book of essays, Sounding Off: Theorizing Disability in Music.
Lerner admits that there is an initial resistance to disability studies. “I think there’s a human reaction—people don’t want to think about their body’s fragility, that it will break down. In a certain way, disability studies forces a consideration of one’s mortality and the weaknesses of the body and sometimes the mind.
“The odds are pretty high everyone can relate to disability in some way,” he says.
Fox agrees that people are afraid of disability. “We’re just not used to talking about it, because we’re taught that it’s impolite. So we have these two extremes: we stare at a disabled person, or we’re not supposed to mention it, so then we don’t know how without seeming to be offensive. I tell my students, ‘You’re going to say wrong things.’ Everyone does.”
She has no problem with the term “disabled person,” though, even in an era of heightened sensitivity to such labels. “Look, this is hard, and most people use something like ‘people with disabilities’ for the very best of reasons. But for me, that’s a euphemism. Disability is an authentic identity, like black or gay. Do we say ‘people with other sexual practices’?” And Fox refers to herself as “nondisabled,” consciously making disability the norm against which she is compared, rather than the other way around.
Fox reminds us that we’re all going to become disabled at some point, if we’re lucky and we live long enough. “We all know and love people with disabilities, we might have invisible disabilities, and we might have disabilities in the making. Our bodies are fragile.”
The syllabus for Fox’s senior seminar in Disability and Literature gets the ball rolling: “Tiny Tim…Laura Wingfield… Richard III…Captain Ahab…Frankenstein’s monster…the literary tradition in English is rife with representations of disability. These representations are sometimes used metaphorically, as representations of extreme innocence or evil. Likewise, they might reduce the experience of the disability to a conquerable challenge, or to a fate worse than death. The new field of Disability Studies asks us to reframe our understanding of disability history, question socially defined categories of normalcy and ability, and understand and learn about the presence of ‘disability culture.’”
Betsy Lyles ’11 signed up for the seminar after she did an independent study about the way Davidson creates community for all of its members. “For me, this disability seminar has continued a conversation about how we form the idealized community that’s outlined in Davidson’s Statement of Purpose,” she says. “Although this is a class about literature, the language and concepts at work behind the pieces we read are helping each of us to constantly question our conceptions of what is normal, and the kind of communities we want to promote.”
Mary Clay ’10, one of two cancer survivors in Fox’s seminar, was drawn to the class after spending her summers working at a camp for children and adults with physical and mental disabilities. “The class has definitely changed my way of thinking, and I thought I was pretty ‘disabled-minded’ to begin with. I had never noticed the very subtle hints at disability that permeate our world from every angle—the media, literature, signs, music video—it’s literally everywhere.”
Clay wrote a term paper on the visual and written representations of scars as they are related to the disabled, and the hierarchy of scars. “For example, straight, smaller scars are sometimes portrayed as ‘sexy,’ whereas scars from burns are considered ugly and unfortunate. Illness-related scars, such as those from a mastectomy, are usually hidden and considered to subtract from one’s femininity.”
On a Wednesday afternoon in March, Lindsay Howard ’10 is leading the seminar discussion on disability theatre. “I need four actors,” she says, waving the handout, a scene from Doris Baizley and Victoria Ann Lewis’s P.H.*reaks: The Hidden History of People with Disabilities. The scene features Matisse, who is sitting in a wheelchair, creating one of his cutout masterpieces with the help of an assistant. As the students enact the scene, Howard shows slides of Matisse’s works on a screen at the front of the classroom.
The scene is about many things, but among them is debunking the narrative that forces a disabled person into the role of victim. It affirms the autonomy—in the case of Matisse, the genius!—of the person, acknowledging that physical impairments should not be automatically perceived as limiting, but rather, an experience through which an individual can see the world and create. Much as Park McArthur’s experience of her changing condition has expanded her view of art and herself as an artist.
The discussion that follows the scene goes to the intersection of theatre and activism—a familiar intersection for other areas of identity studies. Think of Raisin in the Sun, or The Vagina Monologues.
At a literal intersection in Chapel Hill, activism and theatre come together again in the second of Park McArthur’s Presence Is Progress mobilizations. “The project intentionally blurs definitions,” she says in an interview with the Chapel Hill News.
Ann Fox and Jessica Cooley joined the “walk”—for the lack of a better term. “As part of a group of disabled people, I was very aware of how passersby responded to us,” Fox says. “And I had to consciously slow down. It was interesting, but not in a ‘crip-for-a-day’ way—I was just moving through space and time differently.”
In the Chapel Hill News interview, McArthur posed the question, “Is it a rally? A march? A celebratory parade? A performance art piece? Is it all of these or something else?”
Fox reports that it was all of those things. And something else.
Read and explore more :
Presence is Progress: www.presenceisprogress.wordpress.com
Park McArthur’s site: www.parkmcarthur.com
Town of Chapel Hill Office of Public Art’s Presence is Progress webpage: http://www.townofchapelhill.org/index.aspx?page=1409
Jess Levin’s Web site: http://classicalphotography.com
20th Anniversary of the ADA Act website: www.2010anniversary.org
Additional reporting by Rachel Andoga ’06