For Dr. Amy Shuman, an English professor and director of disability studies at The Ohio State University, the famous disability rights slogan “Nothing About Us Without Us” resonates both as an academic and parent to a child with disabilities.
“The idea that you could speak for other people instead of having them speak for themselves removes people from decision-making capacities,” she notes.
Over the course of her career, Shuman’s work has centered on how people communicate about disability. Shuman even recently wrote an essay that she hopes to publish explaining her views on communicative competence.
“People with disabilities are competent because they are successfully communicating (in their own way),” she says.
Shuman’s introduction to disability studies came from reading Erving Goffman’s Stigma: Notes on the Management of Spoiled Identity and learning the different ways people are deemed as less acceptable.
“It changed the way I think about everything,” she says. “Whether it’s race, skin color, religion, age or ability, Goffman’s point is it’s the social structure, the social conditions that give people high status or low status. It’s all temporary, contextual, situational.”
Shuman has since published three books: Storytelling Rights: The Uses of Oral and Written Texts by Urban Adolescents; Other People’s Stories: Entitlement Claims and the Critique of Empathy; and Rejecting Refugees: Political Asylum in the 21st Century, with Carol Bohmer.
Shuman began teaching disability studies a little over 10 years ago with Dr. Brenda Brueggemann, who is now at the University of Louisville.
“(Brueggemann) was interested in thinking about disability in the humanities (in) a different way … so we taught a course together,” says Shuman. “It started out of the idea that you could have an entirely different approach to disability that would come not from questions of diagnosis or cure or rehabilitation, but rather from an investigation or exploration of the experience of differently enabled people. It’s not about a label or stigma.”
Still, before the book steered Shuman toward disability studies, what placed her on the academic career path was a last-minute decision to turn down her dream job at a Smithsonian museum.
“I love research and I love teaching, so (I) left behind museums to go into [academia]. I love inquiry,” says Shuman, who earned a bachelor’s from the University of California, Santa Cruz in 1975 and a doctorate from the University of Pennsylvania in 1981. “I discovered that there are new doors that open up. I never could have anticipated, though I was a student of Goffman, that I could teach a whole course on disability.”
Shuman was propelled by her personal experiences as a mother of a disabled child and a friend of a person who lived with polio.
“People tell me I’m inspirational all the time because I have a child with disabilities, but I feel like I’m very ordinary because I have a very ordinary life with a very ordinary child,” she says.
Shuman has helped reframe the mindset of her students from seeking to cure people to probing for understanding.
“It’s the Reader’s Digest view of disability — that people feel inspired by stories about someone with an impairment. Those kinds of stories are distancing. They are saying, ‘The only way I can think about you is through this lens of pity or inspiration. And neither sees me in my life as human.’”
In the last 20 years, though, disability studies has grown leaps and bounds. The first program was started at Syracuse University in 1994. Now there are 35 schools that offer programs with graduate and undergraduate degrees as well as minors and certificates.
“Today we really do understand how profound our assumptions about normal are,” she says. “Just as gender studies and race studies changed how we think about everything with its critique about how we understand the normal, [disability studies has] made the same enormous changes.”
Today, most of Shuman’s students’ majors are in the health fields: occupational therapy, speech therapy, public health or social work. While OSU currently offers a minor in the area, she hopes to expand that to a major.
“We want helpful people in our world,” says Shuman. “And it’s possible to be helpful without distancing yourself from people. By and large that’s what these students want, and disabilities studies gives them the language for that.”