Disability Studies: A New Normal
April Coughlin, who has a master s degree in disability studies, led New York City Teaching Fellows along the High Line last summer to demonstrate accessibility issues. Credit Michael Appleton for The New York Times
THE temporarily able-bodied, or TABs. That’s what disability activists call those who are not physically or mentally impaired. And they like to remind them that disability is a porous state; anyone can enter or leave at any time. Live long enough and you will almost certainly enter it.
That foreboding forecast is driving growth in disability studies, a field that didn’t even exist 20 years ago. The reasons are mainly demographic: as the population ages, the number of disabled will grow — by 21 percent between 2007 and 2030, according to the Census Bureau.
At the other end of the generational spectrum are those raised after the passage of the Americans With Disabilities Act in 1990. They are now in college or entering the work force. They are educated, perhaps without even realizing it, in the politics and realities of disability, having sat in the same classrooms in a more accessible society.
Universities have long studied the disabled in medical and health care curriculums. But when the first disability studies program emerged at Syracuse University in 1994, it was a radical departure from the medical model that had dominated offerings for decades and had approached disability as a deficit that needed fixing.
Like black studies, women’s studies and other liberation-movement disciplines, disability studies teaches that it is an unaccepting society that needs normalizing, not the minority group. “Disablement comes from a confluence of social factors that shape one’s identity,” says Tammy Berberi, president of the Society for Disability Studies. “It is not a distinct physical condition or a private struggle.”
The Modern Language Association. which promotes the study of literature and the humanities, established disability studies in 2005 as a “division of study.” This says much about how far the field has come in the last 20 years, and about its mission.
Through courses in disability history, theory, legislation, policy, ethics and the arts, students are taught to think critically about the “lived lives” of the disabled, and to work to improve quality of life and to advocate for civil rights. “It’s more than teaching the disabled how to make an omelet,” Dr. Berberi says. The emphasis is on applying lessons from the humanities to solving the social struggle at hand.
Steven J. Taylor, who created the Syracuse program, puts it succinctly: “Disability studies starts with accepting the disability. Then it asks the question: ‘How do we equalize the playing field?’ ”
WHERE YOU CAN STUDY
Some 35 colleges and universities tackle that question through graduate and undergraduate degrees, minors and certificates. Not all get to the answer in the same way, or agree on what constitutes a successful endgame. Mariette J. Bates, academic director for the program at the City University of New York School of Professional Studies, says the differences stem from a fragmented field (“cognitive doesn’t talk to physical, and no one talks to mental”) and divergent academic approaches (theoretical versus clinical).
CUNY, Syracuse University and the University of Illinois at Chicago have the oldest and best-known programs. A complete, vetted list can be found on the web site for Syracuse’s Center on Human Policy, Law and Disability Studies.
Because of its history and student body, CUNY takes the most applied approach. The program grew from a Kennedy Fellows program in special education and rehabilitative counseling, and 70 percent of those seeking a credential there in disability studies work at service agencies. CUNY started a four-course graduate certificate in 2004 and, because of student demand, created a master’s in 2009 and a bachelor’s — the first in the field and completely online — in 2012.
Syracuse’s program — an undergraduate minor and an advanced certificate — emerged from its school of education at a time when the university was emphasizing educational mainstreaming and dissolving its special education program. At the graduate school level, candidates from any discipline can enroll in the certificate of advanced study, or combine disability studies with law. The only free-standing Ph.D. is at the University of Illinois’s Chicago campus.
The rationale for the interdisciplinary approach? Jobs. Disability studies has its greatest impact when taken up with another pursuit, academic or professional, Dr. Taylor says. For doctoral students, an interdisciplinary approach increases the odds of landing an academic appointment, since there are few professorships in disability studies alone.
Graduates can go on to careers in architecture, management, engineering, policy, law, rehabilitative medicine, music and the arts. The most obvious application is in education and human services, including social work and health care, where advancement often requires certification or a graduate degree.
What a credential “signals,” says Noam Ostrander, who has a Ph.D. in disability studies from U.I.C. and is director of the Master of Social Work program at DePaul University, “is a nuanced understanding of disability that is not the tragic, scientific model but a progressive model of disability that is more empowering.”
WHO IS STUDYING IT
Joseph Plutz, the coordinator of disability services at the Fashion Institute of Technology, began as an administrative assistant 10 years ago. With a background in finance, 15 years in the corporate world and no formal training in education or social services, he was looking to be promoted to a counselor position. His office coordinator suggested CUNY’s certificate, which he earned in 2010. He then continued for a master’s. The degree, he said, positioned him to work directly with students, most with cognitive or learning impairments, advising them on course scheduling, time management and ways to advocate for educational and, eventually, on-the-job needs.
The discipline, unsurprisingly, attracts students with disabilities, or those with a disabled loved one. Forty percent of the students in the U.I.C. master’s, minor and certificate programs are disabled; about 60 percent of those enrolled in CUNY’s bachelor’s program have a disability or a disabled child.
April Coughlin has been in a wheelchair since a car accident left her a paraplegic at age 6. That didn’t stop her from becoming a triathlete wheelchair racer or a middle and high school English teacher. Her six years working in New York City schools galvanized her. She routinely encountered access issues. She was unable to consider jobs in older school buildings, some of which house the city’s top schools, because they were not wheelchair accessible. If she couldn’t get in to teach in certain schools, she realized, many children with disabilities couldn’t learn in them either, or see a person with a disability leading the classroom.
She wove a disability perspective into her literature curriculum, but saw a bigger calling: educating teachers across the board about the needs of students with disabilities. She completed a master’s in disability studies at CUNY in 2011 and is a Ph.D. candidate in special education and disability studies at Syracuse. “Disability studies provided me with the language I needed to describe what I had been going through my whole life,” she says.
Her goal is to train future educators at the college level. She already has a start. Last summer she was a trainer for New York City Teaching Fellows. She also teaches an online course in disability and embodiment for CUNY, in which she uses memoir writing, videos and film to convey the experience of being disabled.
The best way to learn is from those who have lived it, she says. “I can’t help but bring my real-world stories to the classroom. I like to think my disability gives me credibility.”
Cecilia Capuzzi Simon writes about education from Washington.
A version of this article appears in print on November 3, 2013, on Page ED18 of Education Life with the headline: The New Normal. Order Reprints | Today’s Paper | Subscribe