Boldness, defense, and the necessity of talking back remain as central to life with disability in our time as in Francis Bacon’s age. “Therefore all deformed persons are extreme bold,” Bacon wrote, “first, as in their own defence, as being exposed to scorn, but in process of time, by a general habit.”
Perhaps no word carries more weight in the field of disability studies than the verb “to claim,” for to “claim disability” is to demand intellectual accountability from a set of ideas. In her groundbreaking book Claiming Disability, Simi Linton presents a contemporary version of the Elgin Marbles, a bas-relief for our times:
We have come out not with brown woolen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work—straightforward, unmasked, and unapologetic. We are, as Crosby, Stills, and Nash told their Woodstock audience, letting our “freak flag fly.” And we are not only the high-toned wheelchair athletes seen in recent television ads but the gangly, pudgy, lumpy, and bumpy of us, declaring that shame will no longer structure our wardrobe or our discourse. We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning. Our symptoms, though sometimes painful, scary, unpleasant, or difficult to manage, are nevertheless part of the dailiness of life. They exist and have existed in all communities throughout time. What we rail against are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure.
Linton’s portrait of people with disabilities highlights the work of disability studies scholars to reclaim public space and reshape the dailiness of life, but it also describes the twenty-first-century campus. Twenty years after the Americans with Disabilities Act, faculty members with disabilities are today teaching in larger numbers, exemplifying the first wave of disability rights. Still, “straightforward, unmasked, and unapologetic” inevitably troubles the public nerve of the academy, as the emergence of faculty members with disabilities challenges habitual diversity rhetoric and the rehabilitation model of traditional campus disability resources.
Picture the professor with her motorized wheelchair facing a lecture hall with a raised stage, accessible only by means of stairs. A little later, she finds the adjacent restrooms are also not accessible. In my case, as a visually impaired faculty member I daily face digital domains crucial to teaching that remain inaccessible. A deaf friend who teaches at a major midwestern university tells me her horror stories associated with obtaining classroom accommodations to help her teach. Imagine that you are a junior member of the faculty, aiming to demonstrate your effectiveness in front of a class—and the very things you need to do your job are caught up in a slow and grudging bureaucracy.
The stories of conditional acceptance among faculty members with disabilities are legion.
In his book Bending Over Backwards, Lennard Davis offers an overview of the academic relativism that consigns disability to diversity’s basement and argues for the critical importance of disability studies in higher education:
The fact is that disability disturbs people who think of themselves as nondisabled. While most liberals and progressives would charitably toss a moral coin in the direction of the lame, the blind, or the halt, few have thought about the oppression committed in the name of upholding the concept of being “normal.” Consequently, one of the major tasks of this new field is to determine why this “fact” of disturbance exists, is accepted, and is promulgated. Disability scholars want to examine the constructed nature of concepts like “normalcy” and to defamiliarize them.
“The body normal” holds all the high cards in the public square and on college campuses. Over my own career, beginning in the early 1980s in graduate school and continuing through tenured posts at Ohio State University, the University of Iowa, and Syracuse University, I’ve heard extraordinary claims about disability from faculty members and administrators, claims that would not be acceptable if the people making them were speaking about other historically marginalized groups.
One assumption, still widely held by college and university faculty, is that students who require accommodations are, by their very presence, interfering with the noble and time-honored pedagogical footrace of traditional teaching. Many faculty members still view academic accommodations for learning disabilities and special provisions for assistive technologies or note taking or the like as representing a form of cheating the system. I’ve even heard faculty members claim that students who need extra time shouldn’t take their classes because these courses are about deadlines. One professor claimed that sharing his reading list in advance of the semester, as a means of ensuring that accessible materials could be generated for a blind student, violated his academic freedom. I’ve heard other faculty members dismiss the inaccessibility of websites and course-management software as not their problem—the “problem” lies, I guess, with the student or perhaps with some sub-rosa office where they take care of these things.
The oppression committed on behalf of normalcy often feels like nothing more than conditioned faculty idleness or outworn patrician habit.
If we accept figures from the Bureau of Labor Statistics, there are 1.7 million college professors in the United States. A reasonable estimate, given the prevalence of disability in the general population, yields approximately 340,000 faculty members who may have disabilities. We can drop 100,000 people from this estimate by factoring in age-related illnesses and early retirement—and we are left (potentially) with a quarter of a million faculty members who may have disabilities. Given the magnitude of this number, why do we, the faculty as a whole, not have more information about faculty members with disabilities? Certainly information about disability is based on self-reporting and is confidential, but why is disability not a significant part of faculty life and part of the multicultural dialogue about pedagogy in higher education?
The answer rests with the neo-Victorian view, largely unexamined in faculty ranks, that disability is a segregated business, a coefficient of the medical model of physical difference. The medical model of disability holds that when a doctor says you’re incurable, you’re rendered incomplete—your human position is immediately devalued, for curability is seen to be the ticket, the only ticket, to public life. To this day, disability remains a Victorian term, first used by Karl Marx to designate industrial workers rendered incapable of working in the factories. The word connotes institutionalization, asylum, incapacity, or, at best, a narrow form of rehabilitation leading to selling magazines or caning chairs.
Colleges and universities have, unwittingly perhaps, copied the Victorians by relegating disability services to a segregated position, burying accommodation resources within the bureaucracies of student life offices. I know of only a handful of institutions of higher education where student and faculty accommodations are afforded the same priority as other forms of diversity and where disability is in turn represented as a matter of campus, not just student, diversity. At the University of Iowa, where I used to teach, the student disability services office is housed in the basement of a dormitory, reachable only by elevator. When I mentioned to administrators that no exit is available for wheelchair users in the event of a fire, I was repeatedly shrugged off. I also suggested that an office that is hard to find might be sending a signal. When I brought up these kinds of problems with my faculty colleagues—for there were several other accessibility embarrassments at Iowa—I received a consistent peculiar but sympathetic shrug. One senior administrator told me that disability culture would never be important on campus because the institution doesn’t have any money. This is of course ridiculous.
When disability services and disability inclusion are marginalized on campus, when faculty members imagine it’s not part of their teaching about diversity, several things can happen. Recently, students with disabilities at the University of Minnesota found themselves shouldering the burden for the institution’s reluctance to make a major academic building accessible, as recounted in an October 9, 2009, article in Minnesota Daily:
For student Rachel Garaghty, Scott Hall’s doors are always shut.
University of Minnesota building Scott Hall has multiple stairways and lack of ramps that make it inaccessible for students with mobile disabilities, including those using walkers, canes or, like Garaghty, wheelchairs.
Areas of study located in Scott Hall include American studies, American-Indian studies, African-American and African studies and Chicano studies.
The Disabled Student Cultural Center (DSCC) is lobbying the Board of Regents to put funds toward making Scott Hall accessible to all students on campus—including those with disabilities.
DSCC has approached the board with the issue of Scott Hall accessibility for the past three years, most recently one year ago, but each time received no action, said Garaghty, DSCC’s former programming co-chair and current graduate student.
I’m pleased to note that the University of Minnesota is now putting an elevator in Scott Hall. But could we imagine the university posting a sign on a major building that says, “No women” or “No people of color”? How is it possible for faculty members to work in a building that houses crucial area studies yet violates federal and state civil rights laws? Why was it so difficult for the students to secure this legally mandated accommodation?
My belief is that faculty members are part of the problem. Even broad-minded professors tend to hold essentialist beliefs about their bodies, failing to recognize that they, too, are prisoners of the social construction of normalcy, that their value as teachers and researchers can easily be disrupted by a broken foot or macular degeneration.
Surely the way forward after the Americans with Disabilities Act means incorporating disability on campus as a function of universal design, imagining universities as places functioning “beyond compliance”— where sustainability and usability are seamlessly built into pedagogy and physical design. Several recent developments make me optimistic: Over the past five years the Department of Justice has steadily issued findings against colleges and universities for their failures to provide equitable and accessible learning environments. Veterans are returning to college in record numbers, many with disabilities, and their need for accommodations is indisputable. Last year, 10 percent of incoming firstyear students at American colleges and universities identified themselves as disabled. As the number of students and faculty members with disabilities continues to increase, so will the pressure to bring disability more fully into the built environment. We must view that environment as a direct extension of culture, even college culture.
The faculty must assume leadership. Faculty members should demand that their institutions undertake accessibility audits. People with disabilities should be understood culturally, and faculty members can lead us toward that understanding. Students or staff members with physical or learning differences are our children, our sisters, daughters, sons, fathers, mothers, our wounded warriors, our neighbors, our colleagues. It’s time to demand the elimination of oppression committed in the name of privileged normalcy.
Stephen Kuusisto teaches in the Center on Human Policy, Law, and Disability Studies at Syracuse University, where he also directs the honors program. Letters to Borges, a collection of his poems, will be published in February 2013. His daily blog, Planet of the Blind (www.planet-of-the-blind.com), is read worldwide.
Recent AAUP Publications on Disability
“Access in the Academy.” Published in the September–October 2012 issue of Academe, this article by Stephanie L. Kerschbaum seeks to broaden how “accommodation” is understood.
Accommodating Faculty Members Who Have Disabilities. This AAUP report, written by a subcommittee of Committee A on Academic Freedom and Tenure, was published online in January 2012 and included in the 2012 Bulletin of the AAUP.
“Chronic Illness and the Academic Career.” Published in the May–June 2012 issue of Academe, this article by Stephanie A. Goodwin and Susanne Morgan considers disabling chronic illnesses.