Extraordinary Bodies:
Sue Schweik helps UC Berkeley expand the horizons of disabilities studies

This fall, UC Berkeley English professor Sue Schweik is working with 31 other faculty members to create a groundbreaking program. The new minor will bring together subjects as diverse as art, engineering and political science to examine a much-overlooked subject: the lives and experiences of disabled people.

"What we're proposing is an interdisciplinary liberal arts minor, very different from the way disabilities have been studied on campuses before," says Schweik, one of a core group of four individuals who conceived the new program. "This is a new development, using disability as an analytic tool in the same way as we use race or gender."

While UC Berkeley has offered disabilities-related courses for many years, the emphasis until now has been on practical training. Students have taken the classes to prepare for careers in medicine and special education. What will set the new Disabilities Studies minor apart is its rich exploration of history, culture and life-experience.

Schweik first became interested in Disabilities Studies while researching another accomplished UC Berkeley English professor, Josephine Miles . Miles, an award-winning poet who taught on campus during the mid-twentieth century, was the first woman ever to be tenured in the English department. Miles lived with severe rheumatoid arthritis and, in the absence of elevators and wheelchair-accessible entrances, had to be carried across campus and up stairs by male assistants.

"My desire to start a new program grew as I researched her life," Schweik says. "I looked around campus and didn't see that field represented in the curriculum."

Schweik then began to collaborate with Frederick Collignon, the chair of the Department of City and Regional planning. They were assisted by Oakland's World Institute on Disability and joined with two other scholars, Marsha Saxton and Devva Kasnitz. Saxton now teaches "Introduction to Disability Studies" and "Women and Disability" classes on campus. Kasnitz will be co-teaching an "Anthropology and Disability Course" this spring.

The growing interest of these professors coincided with a rising desire among students for disabilities classes. During the past five years, more and more disabilities-related courses have been added to the curricula of many departments. Three student-initiated classes, all capped at maximum enrollment, are taking place this fall: "Disabilities in Film," "American Sign Language and Deaf Culture," and "The Inclusion Initiative," a class that places students in jobs as personal care assistants.

An added attraction to the program is Bancroft Library's vast collection on the disabilities rights movement. As a strong library is integral to any developing field, the collection provides a strong foundation for UC Berkeley's pioneering program program. Materials document how disabled students, like minorities, women and gay and lesbian students, have had to earn equality on the UC Berkeley campus.

Thanks largely to students' efforts, the American with Disabilities Act now requires universities and schools to make their campuses accessible to students with disabilities."Greater accessibility means we've had a growing critical mass of disabled students on campus," Schweik says. "Because of this, our programs have shifted from just training professionals to examining the experiences of disabled people."

Schweik herself is currently teaching a class called "Disabilities in Literature." With the help of Extraordinary Bodies, a 1996 book tracing the history of disabilities in literature, Schweik's class is examining diverse works, from Shakespeare to modern fiction. One piece Schweik's class has studied, Cherrie Moraga's play Heroes and Saints, is the surreal story of a character born with only a head. Another work, Adrienne Rich's poem "Seven Skins", is a woman's imagination of what it might be like to sleep with a disabled veteran, shedding the "seven skins" between them.

In addition to theater, poetry and fiction, Schweik has included a number of personal memoirs in her curriculum. Susanna Kaysen's Girl Interrupted raises questions about mental disabilities, while Katharine Butler Hathaway's Little Locksmith gives insight into how disabled people rise above physical limitations. Hathaway, who contracted spinal tuberculosis as a child, was strapped horizontally to a board for ten years. By age 15, her back was hunched and she was as small as a 10-year-old child. Yet Hathaway went on to attend Radcliffe College, purchase a home in Maine and become the center of a vibrant artistic community.

"It's interesting studying these works when you have not just a few disabled students but many," Schweik says. "It really alters the way you discuss things. Some of the students may never have shared or heard experiences of this kind in a classroom setting. There's a different kind of respectfulness and need to listen that grows out of this kind of environment."

Schweik is reluctant to estimate what percentage of her students are themselves disabled. Some come in with conditions that are clearly visible to the eye; others quickly identify disabilities that may not be immediately obvious. Many are drawn to the subject based on experiences with disabled relatives or friends. Still others are drawn to the program through policy-oriented departments like political science, public health, and city and regional law.

"As a society, we're facing questions of health care and elder care," Schweik says. "We're grappling with questions like about the ethics of genetic testing. And so far we haven't developed good enough tools for grappling with the disability aspects of these subjects."

Along with developing UC Berkeley's own program, Schweik has been instrumental in forming collaborations with UC Davis and San Francisco State. The three universities will draw on each other's strengths, allowing students to benefit from the resources of all three. The resulting study and research will reverberate even beyond the campuses themselves, says Schweik, helping forge an new understanding of disabilities and disabled people.

"This is a subject that affects everyone," Schweik says. "Unless they die very suddenly and very young, almost all people are going to have to deal with these issues sooner or later."