When President George H. W. Bush signed the Americans with Disabilities Act into law, he remarked that everyone with a disability could now pass through once-closed doors into a bright new era of equality. Meaningful changes have happened in the 24 years since, but the ADA’s intent hasn’t been fully realized in many areas. For example, in the field of advanced education, scholars with disabilities are still struggling with physical barriers, negative attitudes from nondisabled colleagues, lack of programmatic accommodations and discrimination in employment. It may be surprising that these civil rights violations still occur, but a handful of advocates are fighting to change things for the better.
Bill Peace, 53, a full-time wheelchair user, has spent his academic life as a theoretical anthropologist and bioethicist since earning his doctorate from Columbia University in 1992. Being a distinguished scholar has not kept him from having to battle academic organizations over barriers, misconceptions and stereotypes. Peace says little progress has been made in academia over the years, and an incident that happened recently illustrates that point.
In fall of 2013 he attended an academic conference on disability, bioethics and the humanities at Hobart William Smith College. When he arrived, he found three steps at the entrance of the building where he was to speak. He was stunned. “Not one scholar, people supposedly interested in disability and health care, wondered about the ADA or how a person such as myself who uses a wheelchair could enter,” he says.
Another accessible entrance was found, but what Peace discovered inside the building left him furious with conference organizers. The room where the meeting was held had another two steps in his way. He was humiliated and angry that an event about disability was held and nobody thought about checking wheelchair accessibility. So he made the difficult decision to assert his civil rights and refused to participate.
The events at Hobart William Smith prompted Peace to take to his blog, Bad Cripple, and share his frustrations. His post generated a great deal of buzz and prompted the school’s president to apologize for the incident. In addition to the apology, the liberal arts college changed its policy on how future academic gatherings would be approved. “Now when somebody seeks funding for a conference, they will not get funding until they demonstrate it is 100 percent accessible,” he says.
Roots of Advocacy
Frustrations over access are part and parcel of Peace’s everyday professional life, but his desire to be an outspoken disability and civil rights advocate has its roots in a childhood filled with challenges.
He spent his early years in the affluent community of Scarsdale, N.Y., where his financially successful parents raised him. His idyllic life would be torn apart when the 9-year–old Peace suddenly developed a rare neurological condition. He would spend the next decade in agonizing pain and living with other children in similar situations on numerous neurologic wards.
For the first time in his life, he was exposed to abject poverty. He would spend many nights looking down on the streets of New York City from his hospital window, watching the transients and homeless people living grim existences. This experience profoundly changed his view of humanity. “Pretty much everything I was taught really seemed inconsequential and untrue,” he says.
Realizing the impact of poverty on society and those around him wasn’t the only life-changing moment the young Peace would face. In January 1978, near the end of his arduous hospital stays, he became a paraplegic after receiving numerous surgeries and spinal taps. Life would never be the same, but he’d soon learn from his mother how to advocate for himself.
He attended the last two weeks of high school after becoming paralyzed that winter. He drove to school his first day and learned on arrival that there was no accessible parking. He went home feeling sorry for himself, but his mother instantly ended his pity party. She told him to drive to school the next day and park in the principal’s spot. If the principal balked, she told her son to tell him that he wanted his space and that if he had a problem to call his mother.
Sure enough, the principal came looking for him, and according to plan, Peace instructed the principal to call his mother. The next day, Peace made a startling discovery when he arrived at school. “There was accessible parking by the front doors,” he says. A civil rights activist was born.
The 1980s marked a period of transition as Peace worked on his academic degrees. He loved the rigors of academic life and didn’t want to ever leave it. “I remember saying that to my father, and he laughed and said ‘get a Ph.D.,’” he says. Peace graduated with a degree in cultural anthropology from Hofstra University before moving on to Columbia to complete his education.
After becoming a newly-minted Ph.D., the barriers of dealing with academic organizations soon became apparent. He attended his first American Anthropological Association meeting shortly after graduating. Disability accommodations were unheard of then. Any complaints that were raised by scholars with disabilities were quickly dismissed. “The ADA was two years old and nobody knew what to do, or more importantly, nobody wanted to do anything,” he says. “All academic organizations at the time considered access an odious burden.”
These early encounters with academic organizations are vital for young scholars because Peace says they are a “meat market” for jobs. “They’ve got to go to meetings, they’ve got to hob-nob, and doing that is exceptionally difficult, because nobody knows who they are, no one cares because they don’t have a network of people they are familiar with,“ he says. Unfortunately, these meetings are expensive to attend, and according to Peace there are few scholars with disabilities because of the economic hardship caused by disability.
A Colleague’s View
Stephen Kuusisto, 59, a colleague of Peace’s, serves as a professor in the Center on Human Policy, Law and Disability Studies at Syracuse University. Blind since birth, Kuusisto often travels to academic gatherings. Like Peace, all too often he has problems in securing accommodations and appropriate assistive technology due to negative attitudes and colleagues who aren’t educated on disability rights. “I certainly have experienced plenty of things along the way,” he says.
Kuusisto explains that many colleges and universities see the ADA as an unfunded mandate, and they tend not to spend money on expensive renovations until they are forced to. But younger students who band together to push for access often have success. “Not long ago a group of students from the University of Minnesota protested, and because of their protest, they got the university to modify an inaccessible academic building by making the story national news,” he says.
Colleges and universities often suffer from “the 504 hangover,” says Kuusisto, referring to section 504 of the 1973 Rehabilitation Act. Many of them think that “disability accommodations are just a minor thing that they can relegate to a small office in some corner of their campus,” he says. This results in faculty and staff often knowing very little about disability and their responsibilities.
Having attended academic conferences together, Peace and Kuusisto often discuss issues facing scholars with disabilities. There are times when a softer approach is needed, says Kuusisto, but that isn’t always possible. “Sometimes you have to push very hard and even dare to embarrass people with their behavior,” he says.
Kuusisto says the first post-ADA generation that has gone to college and received their degrees expects access, and this has had a positive influence. “Their very presence challenges this longstanding habit of higher education pretending the ADA will go away,” he says.
Kuusisto appreciates Peace’s straightforward nature and his smart approach to academic advocacy. “I’ve seen Bill be quite warm in his advocacy, but I think that he knows that one element of civil rights is to be tough-minded and uncompromising about the law and what your rights are,” he says.
The Underlying Problem: Devalued Lives
In 2006, Peace’s career took a sharp turn after he read about the Ashley treatment. The treatment was a series of procedures performed, at the request of her parents, on a Seattle child with developmental disabilities named “Ashley X.” The surgeries were intended to stunt her growth, eliminate menstruation and prevent her from developing large breasts.
It was a wake up call for Peace. “It wasn’t what they did that was horrible, it was that there was a 38-person bioethics meeting at one of the leading children’s hospitals in the nation, and they gave it the go-ahead,” he says. “They illegally sterilized a profoundly disabled child.” Soon after, he began work in bioethics and disability studies, while becoming a harsh critic of the cure industry.
Little did Peace know, but his work in bioethics would hit very close to home. In 2010, he was hospitalized with a stage IV pressure sore. After an especially difficult debridement, a hospitalist encouraged him to discontinue the aggressive treatment and pursue end-of-life care. Peace refused the offer but the experience shattered him. “Somebody I had never met determined my life wasn’t worth living,” he says.
It took almost two years to heal the wound, but Peace vowed to advocate against assisted suicide. The reason for doing so was simple. “People are needlessly dying, and there’s no nuanced view of disability within the medical community,” he says. He joined the board of directors of the advocacy group Not Dead Yet, and since then has become a leading national critic of the practice of assisted suicide.
There are few academics with disabilities who are in a position of power, but Peace is trying to make the most of his years of experience. He has tried to network with scholars across the disability spectrum, but it’s difficult because there are so many groups that are splintered. Peace says the long-held problems won’t change unless all disabled scholars form a united front and push for change.
As for the ADA, one problem, he says, is that it doesn’t resonate culturally with most people. “Until society realizes that we’re talking about a culture of people that have been routinely discriminated against, we will continue to have practical problems,” he says. He believes people with disabilities need to get more confrontational about their civil rights. “We need to start practicing civil disobedience and asserting our authority until it becomes painfully obvious that it’s far easier to make the accommodation than it is to have the argument,“ he says.
Last year, Peace was named the Jeannette K. Watson distinguished visiting professor at Syracuse. The high profile position has been a wonderful experience, but he hasn’t forgotten why he fights. “I don’t want up-and-coming scholars to face the unnecessary and needless barriers that I had,” he says. His willingness to play the role of rabble-rouser hasn’t won him many friends, but he remains true to the convictions formed back on the hospital wards of his youth.
“I have a moral obligation to do this for the others that weren’t as lucky as I have been,” he says.