Ron Berger, with David Travis and Jon Feucht —
Most of the students in Professor David Travis’s physical geography course were there to fulfill a general science elective requirement. David is a popular professor, known nationally for his work in meteorology, and the small room in which he taught was filled to capacity. It was an intimate setting, and though David had had other students who used wheelchairs in his class before, as well as students with disabilities who didn’t use wheelchairs, Jon Feucht was clearly “the most severely disabled, from a physical appearance, student that [he] had ever had in a class.”
Almost immediately, David noticed the other students’ discomfort: they didn’t want to sit by Jon. Besides his non-normative appearance, Jon occasionally made guttural sounds, noticeably breathing and swallowing, with an occasional drool, which they found off-putting. The awkwardness left David at a loss.
The Enigma of Disability
Disability is a social enigma. Throughout history, people have felt compelled to stare at disabled people, then turn their heads in discomfort. Many consider Franklin Delano Roosevelt one of the greatest presidents of the United States, but he had to hide his polio-induced paralysis and use of a wheelchair, lest the public think him too weak to lead the free world. While the Hebrew Bible teaches “Thou shalt not curse the deaf nor put a stumbling block before the blind” (Leviticus), it also warns, “If you do not carefully follow His commands and decrees … the Lord will afflict you with madness, blindness, and confusion of mind” (Deuteronomy). And the institution of the “freak show,” which reached its heyday in the nineteenth century but lasted in the United States until the 1950s, featured people with disabilities, as well as tribal nonwhite “cannibals” and “savages,” displayed for public amusement and entertainment. As a social institution, the freak show helped reinforce onlookers’ sense of normality and superiority and helped construct disability as the ultimate form of deviance.
So it was that the rise of a medical approach to disability—what the academic field of disability studies calls the medical model—helped change this state of affairs. People with disabilities were deemed worthy of medical diagnosis, treatment, and benevolence. But benevolence may breed pity, and the pitied are still stigmatized as “less than” fully human. Hence, the contemporary disability rights movement has advanced an alternative social model of disability, believing that it is not an individual’s impairment, but rather the socially imposed barriers—the inaccessible buildings, limited modes of communication and transportation, and prejudicial attitudes—that construct disability as a subordinate social status and devalued life experience. On the macrosocial level, this new model advocates policy reforms aimed at the institutional contexts of disability. On the microsocial level of everyday life, it seeks strategies for undermining stereotypes and expanding people’s “personal comfort zone” with disability.
Because of a sordid social history, though, disabled people are still often viewed in terms of a negative social type—as physical or cognitive deviants—that attributes a common symbolic meaning to many disparate individuals. In sociologist Erving Goffman’s terms, the stigma associated with disability is constituted by a “spoiled identity” whereby the person is “reduced in our minds from a whole and usual person to a tainted, discounted one.”
More generally, nondisabled people can find themselves uncomfortable, even fearful, around people with disabilities, as if the disabling condition might be contagious. Anthropologist Robert Murphy thinks they see disability as a “fearsome possibility.” In this way, “the disabled person becomes the Other—a living symbol of failure, frailty … a counterpoint to normality [and] a figure whose very humanity is questioned.”
According to psychologists Nancy Miller and Catharine Sammons, it is natural for people to notice others who look different. Indeed, they argue, the human brain is hard-wired to scan the environment and notice differences from the routine or expected average. “Everybody reacts to differences,” they write. “In the whole universe of differences, some attract us, some surprise or frighten us, and some aren’t important to us at all… We often want to be open-minded and feel comfortable about other people’s differences but find that some unfamiliar differences make us feel tense and judgmental instead… It can cause anxiety, uncertainty, and even a wish to avoid the other person.” However, Miller and Sammons think we can all learn to override these reactions.
Transforming Perceptions of Disability
Jon Feucht offers one such story of transformation. The setting was an undergraduate university course at the University of Wisconsin-Whitewater taught by Professor David Travis and recounted by David to me. Jon has a rather significant disability due to cerebral palsy (CP), a condition caused by trauma to the brain before, during, or shortly after birth.
The brain trauma that comes under the rubric of CP impairs an individual’s motor functioning, with some people affected only in their lower body, some in their upper body, and some in both their lower and upper body. Some people with CP have low muscle tone, or hypotonia, and some have high muscle tone, or hypertonia (also called spasticity). Some people have involuntary muscle twitching or an exaggerated startle response to external stimuli. CP may also, but not necessarily, be accompanied by neurological problems that include intellectual and learning disabilities, visual and hearing impairments, attention deficit-hyperactivity, seizures, and difficulty or inability to swallow or speak. CP is not a degenerative disease, as is Parkinson’s disease or multiple sclerosis, but the normal deterioration of the body that occurs with aging can be more challenging for those with this condition.
Like any disability, people with CP fall on a continuum that ranges from mild to severe. In terms of physical impairment, Jon falls on the more severe end of the continuum, although there are people who have more significant impairments than he does. He uses a power wheelchair for mobility and has limited use of his hands, and he relies on a paid caregiver or his wife to meet his daily needs of living. Jon cannot speak without use of a computerized communication device, or what is also called augmentative communication, that translates his typewritten commands into audio speech, and it takes him about a minute to type 10 to 12 words. Cognitively, however, he is highly intelligent, and he has earned a Bachelor’s degree in psychology and a Master’s degree in special education and is currently working on his doctorate in educational leadership and policy.
Early in the semester of David’s course, Jon was not yet talking in class, but he did speak to David after class to ask questions. This is how David began familiarizing himself with Jon’s manner of speech, learning to be patient as he completed his remarks and developing a rapport with his student. Jon also came to David’s office hours to set up the accommodations he needed through the Center for Students with Disabilities, including an in-class note taker and provisions for taking exams.
The turning point in the class occurred during a story David was telling about chasing a tornado, one of his professional interests and personal avocations. He told the class he’d been driving with his infant daughter in the rear seat when a tornado warning came on the weather radio he kept in his vehicle. His wife was at work, and he thought about taking his daughter to her office before proceeding with his chase. But he didn’t want to wake her—so he decided to follow the tornado with his daughter in the car!
At this point, Jon was frantically waving his arms. “Do you have a question?” David asked. Jon was grinning, and the entire class waited to hear what he had to say as he carefully typed, then played his response: “I really feel sorry for your wife. How has she not left you by now?” The whole class broke out in laughter. At that moment, the other students finally recognized Jon’s humanity, that he was attuned to everything David was saying and had the same reaction to the story as everyone else. Indeed, many of the other students had been shaking their heads in disbelief as if to say, “Are you kidding?” and “What kind of father are you?”
What Jon had inadvertently accomplished was what other studies of social interaction have revealed: that people with disabilities are sometimes able to ward off a “spoiled identity” through intentional or unintentional impression management. That is, they may refuse assistance to demonstrate competency or use humor to make others feel comfortable, and they become “just another person.”
Prior to this epiphany, David had noticed that when the students were asked to select a lab partner and work in pairs, Jon ended up working on his own (with his student aide who wrote down the results of Jon’s lab work). David felt bad, but didn’t know how to remedy the problem. After the tornado story, though, the students all started interacting with Jon. Jon became more verbal in class, offering his opinions on topics from global warming to overpopulation. When David posed a question, Jon was the first to raise his hand.
Interestingly, a new dilemma arose: with just 50 minutes available for each class, David had to be mindful of how much time he allocated to Jon. So he decided to restrict Jon to one question per class, with one follow-up to David’s response. Often, Jon merely asked for a clarification, but he continued to make humorous observations as well, provoking the other students to laugh.
By mid-semester, the other students came to see Jon as a witty and intelligent young man, as well as someone who could help them with the course material. David recalls a lab in which a half dozen or more students were standing around Jon talking to him and trying to understand how he got the answer to a particular lab assignment. Jon was typing as fast as he could, with some verbal assistance from his student aide, and the other students were saying, “Oh, okay, yeah. That makes sense.” In many respects, David observed, Jon had become one of the leaders in the class, and the students seemed to have completely forgotten their discomfort. They even began helping Jon with some of the fine-motor-skill physical work required to manipulate the lab instruments. Needless to say, David was delighted with this transformation.
David pointed out that this transformation happened only because of Jon’s willingness to “put himself out there.” David had had other students in classes with less severe disabilities who were, nonetheless, shy and afraid to interact with nondisabled students. They seemed to want to blend into the background, trying not to be noticed. But Jon wanted to make his presence known, in some ways forcing “his way into becoming an accepted part of the class.” But David, too, is to be given credit for skillfully negotiating a successful outcome to what was an initially challenging situation.
Interacting with Difference
Miller and Sammons identify three general types of differences that provoke varied responses from observers in social interaction. Unfamiliar differences are those that are new to the observer, unexpected differences are those that are familiar to the observer but in a different context, and unsettling differences are those that are disturbing. In Jon’s case, other students were likely to have seen someone with his level of disability before, but not necessarily in a close-knit classroom for four days a week. That this encounter with an unfamiliar or unexpected difference was unsettling for some, causing them to physically separate themselves in the classroom, is a lasting legacy of disability history. The disability rights movement notwithstanding, discomfort with disability penetrates our society’s collective conscious in subtle and not so subtle ways. At the same time, it is also likely that David’s physical geography students had never encountered an articulate individual using a computerized communication device; and once exposed to Jon’s intelligence and wit, the differences that at first seemed unsettling seemed benign.
More generally, displacement of the fear of the Other may be just the first step in accomplishing desirable encounters with disability differences. As sociologists Spencer Cahill and Robin Eggleston found in their study of wheelchair users, much of the awkwardness of encounters between disabled and nondisabled people stems not from fear or malicious intent but from uncertainty. For example, should an able-bodied person offer assistance to someone who uses a wheelchair by opening a door for them or asking them if they need help retrieving something from a shelf, though that means putting themselves at risk of rebuke for thinking that the wheelchair user is less competent than they are? In Travis’s case, should an instructor with an augmentative communication user in his class stop talking when he notices the student typing into his device, waiting for him to finish before moving on, or should he continue lecturing until the user is ready to speak? There is no standard protocol for these situations, but acknowledging the uncertainty seems a necessary precondition for satisfactory interactive outcomes.
In their research on the phenomenon of staring, cultural studies researchers Michael Lenney and Howard Sercombe shed light on this issue. They note that nondisabled people often feel a “conflict between the ‘desire to stare’ and the ‘desire not to stare’” at disability differences. On the one hand, it is impolite to stare. On the other hand, it is impolite to act as if the disabled person is invisible. Choosing to interact or not interact, then, “requires a complex level of communication, both visually and verbally.” Lenney and Sercombe suggest we all be mindful about what motivates us to engage or avoid those who appear different, with an eye toward understanding that interaction with those who are different is replete with possibilities for expanding our personal comfort zones. Thus, psychologist Carol Gill hopes not for the day when her disability will be deemed irrelevant, but when it will provoke “a respectful curiosity about what I have learned from my difference that I could teach” others. And journalist John Hockenberry wonders, “Why aren’t people with disabilities a source of reassurance to the general public that although life is unpredictable and circumstances may be unfavorable, versatility and adaptation are possible?”
This article is adapted from The Society Pages, Sept. 28, 2012 (thesocietypages.org) and Ronald J. Berger, Jon A. Feucht & Jennifer Flad, Disability, Augmentative Communication, and the American Dream: A Qualitative Inquiry (Lexington Books, 2014).
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Spencer E. Cahill & Robin Eggleston. 1995. “Reconsidering the Stigma of Physical Disability: Wheelchair Users and Public Kindness.” The Sociological Quarterly, vol. 36, pp. 681-698.
Doris Zames Fleischer & Frieda Zames. 2001. The Disability Rights Movement: From Charity to Confrontation. Philadelphia: Temple University Press.
Erving Goffman. 1963. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall.
Michael Lenney & Howard Sercombe. 2002. “Did You See that Guy in the Wheelchair Down in the Pub? Interactions Across Difference in a Public Place.” Disability & Society, vol. 17, pp. 5-18.
Nancy B. Miller & Catherine C. Sammons. 1999. Everybody’s Different: Understanding and Changing Our Reactions to Disabilities. Paul H. Brookes.
Robert Murphy. 1987. The Body Silent. Henry Holt.