Disabilities in the Classroom
by Bettina Hoerlin

It was the next-to-last class of the semester after a whirlwind tour of today’s major health issues and the systems meant to address them. Firmly rooted in the tenets of public health, the course focuses on problems disproportionately impacting inner-city populations made vulnerable by poor health status and woefully inadequate access to care. It’s called “Issues in Urban Public Health” and if it were graced with a subtitle it might read as “Social Justice and Social Disparities in Health.” In any case, by the course’s end, students are keenly aware of the message.

With limited enrollment, the class is relatively small. A lottery determined the 24 Haverford and Bryn Mawr students who filed slowly into class with more than their usual tardiness. Had the recent Thanksgiving holiday lulled their energy? Had the assigned readings provoked their thoughts? Had they noticed the guest speaker, who preceded them and was sitting quietly toward the front of the classroom? They seemed happy to reconnect with each other, but would they reconnect with the content of the class?

The topic for the two-and-one-half hour session was “People with Disabilities” and I had asked the students to come prepared to discuss their reactions to the readings. Per usual, I had chosen a mix of articles that encompassed a basic description of the topic—facts and figures to give it definition, current research and/or controversies to give it depth and complexity, and personal narratives to give it a human face. For “People with Disabilities,” the context included a long piece on the history of disability rights and its culmination into the Americans with Disabilities Act (ADA). Controversies focused on challenges to the intent and scope of the Act such as increasing rates of disability fueled by the obesity epidemic and greater life expectancies due to improved chronic disease management. And the human face featured an American Civil Liberties Union (ACLU) Award address given by a nationally recognized disabilities rights lawyer Stephen Gold, (who happens to be the father of Haverford ’92 alum Rachel Gold) and a New York Times Magazine article titled “Unspeakable Conversations or How I Spent One Day as a Token Cripple at Princeton University,” by Harriet McBryde Johnson.

I opened the discussion with a reminder about our first class (oh, so long ago) in which I laid out a broad definition of health: total well-being . . . physical, mental and social—and noted that health should be viewed as an optimal state of being, whether one is “well,” worried well (not yet sick), temporarily sick, or chronically ill. We moved quickly from a medical model of health to a more encompassing one, inclusive of factors that act as barriers to optimizing health. Is not access to care a right for all? What about blatant disparities, primarily income and race related, although gender, geographic, and system disparities abound as well in the health care landscape? And what about the barriers imposed by prevailing attitudes and stigmatization against certain health conditions? While the course studies AIDS, mental illness, and substance abuse, all conditions that can warrant disability benefits, these questions seemed to have particular poignancy when applied to those with physical disabilities. The controversies around these disabilities are accentuated at the very beginning of life and the very end of life. Infanticide and physician-assisted suicide are too often the unfriendly bookends framing the debates around people with severe impairments.

It was not difficult to get a conversation going in class that day. “I never realized . . .”; “I avoid looking at someone handicapped . . .”; “I thought they’d rather be dead . . .”. The remarks reflected characteristic discomfort, fears, and biases. They also were indicative of how little the progressive community pays attention to discrimination against the disabled. In his talk to the ACLU, Gold challenges us: “Why is it so difficult for most people to consider disability as a civil-rights issue on par with race, gender, and sexual orientation?” He argues that while progress has been made in other areas, the disability movement has been virtually ignored. Prevalent attitudes of pity and paternalism, he asserts, do not form the basis for social change.

A minority student expressed her resentment that racial and disability discrimination were being lumped together: “They have different roots and the solutions require different interventions.” Another student, a turbaned Sikh, supported her noting that it costs money to make vans handicapped-accessible, while integrating lunch counters did not. Someone slightly overweight remarked that she felt the ADA was stretching its interpretation by covering people with obesity. After all, eating was primarily a behavior and could be controlled as such. Should limited disability benefits be expended on someone obese rather than on a technologically improved wheelchair for a quadriplegic? The topic was both current and compelling. The class was clearly engaged . . . and it was time to introduce my guest speaker.

Fran Fulton joined me in front of the class and at my suggestion stood with me before a long desk where she hesitatingly placed her juice bottle. A consumer advocate, Fran works at Liberty Resources, Inc., a nonprofit that promotes disability rights and independent living for persons with disabilities. After a brief introduction, Fran asked the class to identify her disability. After a couple of wrong guesses and some awkward silences, someone said, “. . . visually impaired.” Fran confirmed her blindness and asked how the student had known. The student had observed Fran’s difficulty in placing her drink on the table, although no one had seen the earlier giveaway when Fran walked into the room with a cane. Nor did Fran have a clue about the identities of the prior commentators. She could not see the African American, the Sikh or the plump woman, each of whom may have experienced discrimination themselves because of racial, religious, and societal prejudices.

Prior to the class, Fran and I had agreed we would ask someone to sit in a chair fully visible to the class as though it were a wheelchair and he/she was quadriplegic. A student volunteered, was quickly assigned an “Attendant” and instructed not to move either arms or legs for the duration of the class. Fran then launched into her discussion—first defining disability, then describing its magnitude and dimensions. Nearly 50 million Americans have physical or mental impairments that interfere with their activities of daily living. The term disability refers to one or more health-related conditions that limit carrying out socially defined tasks and roles. The disability rights campaign, initially spurred by paraplegics, dates back to 1947 but the country’s awareness of existing architectural barriers was heightened when in 1957 Hugh Deffner, honored by President Dwight Eisenhower as “Handicapped American of the Year,” arrived at the Capitol to receive his award. The facility was inaccessible to him and two marines carried him up the steps, an irony not lost to advocates. Enactment of legislation slowly followed, highlighted by the Architectural Barriers Act of 1968, Section 504 of the Rehabilitation Act in 1973 (with 504 regulations gradually implemented through the ’80s), the Education for All Handicapped Children Act in 1975 and the Fair Housing Amendments Act of 1988. The passage in 1990 of the Americans with Disabilities Act, arguably the most important piece of civil rights legislation since the Civil Rights Act of 1964, represented a culmination of these efforts and a milestone for people with disabilities in enforcing the Constitution’s guarantee of equal protection.

Fran’s presentation was punctuated by questions that she fielded skillfully, whether about raising her children, searching for insurance coverage and quality health services, fighting for community and home-based care (instead of institutional), or mobilizing to bring disabled voters to the polls in the November national election. She asked the students to jot down something they did not like about themselves and when a few shared their “warts,” Fran underscored how we all live with limitations. Cannot disability be regarded as an aspect of life common to us all in different ways? There was a noticeable pause in the lively class interaction, as this question was pondered. Meanwhile the designated paraplegic was motionless in her “wheelchair.” Fran and I had conspired that I would ignore all obvious courtesies and in the course of Fran’s teaching, I managed to push the wheelchair without its occupant’s permission, lean on it and prop my feet against it, and ask the Attendant if the occupant needed a drink or needed to go to the bathroom. It was a quiet demonstration of “incorrectness”—invading an individual’s personal space, not speaking directly to her and talking about her as though she was not there.

Several students had picked up the gaffes. It gave the class an opportunity to test its own sensitivities and segued into our discussion about the New York Times article by Harriet Johnson, a lawyer whose body has been impacted by more than four decades of a muscle-wasting disease. With virtually no use of her limbs, the 70-pound Johnson describes the sight of herself in her power wheelchair as “routinely discombobulating.” The story revolves around Johnson flying to Princeton to give a talk at the invitation of Peter Singer. Singer, an internationally famous philosopher, supports legalization of killing severely impaired babies based on his beliefs of giving parents that choice and alleviating human suffering. In the words of Johnson, Singer assumes that “ . . . I am one of the people who might rightly have been killed at birth . . . . He is the man who wants me dead.” In my years of teaching, I cannot think of another article that has triggered such heated responses. It touches everyone . . . how does one define personhood? How does one measure quality of life? What, in fact, is life?

As I tell my students, my goal by the end of the semester is that they have more questions than answers. I think it fair to say that our class on people with disabilities underscored that. That day in class, I believe everyone spoke. Not everyone had answers, although having Fran there and grappling with the issues in Johnson’s piece made the students think hard . . . and perhaps differently. Fran had answered a central question: How do you treat a person with a disability? “Like a person!” she retorts. Harriet Johnson also has an answer: “. . . the presence or absence of a disability doesn’t predict quality of life . . . I used to try to explain that I enjoy my life . . . that I have no more reason to kill myself than most people. But it gets tedious. “A final remark by one of the students made me feel this class made an impact. He said, “We forget it’s highly likely that each of us will need to be cared for at some time in our lives. We can’t just make it a “them” issue.” He is right. According to the 2000 Census, one out of every five people over the age of 5 in the United States has a physical or mental impairment and for every disabled person it is estimated there is a family of four to five other people who are profoundly affected, socially and economically. The numbers of persons with disabilities are expected to grow. Hopefully they will live in a more welcoming milieu, bolstered by the kind of awareness reached in my Haverford class that day.