Disability in the Social Context

DISABILITY IN THE SOCIAL CONTEXT

CHANGING THE EQUATION DOMESTICALLY AND INTERNATIONALLY FOR PEOPLE WITH DISABILITIES

STORY BY JAN TEGLER

For Americans with disabilities, the Americans with Disabilities Act (ADA) represents more than recognition of a population underrepresented and underserved by existing law or a prohibition against discrimination. Over the course of 25 years, the landmark legislation has changed expectations and attitudes inside and outside the disability community, and beyond American borders.

What’s different? The ADA affirmed that Americans with disabilities deserve the same treatment as Americans who have no disabilities. More than cementing the conviction that individuals with disabilities should benefit from the same access and opportunities other Americans take for granted, it has also helped to make citizens with disabilities and disability itself more familiar to all, says Catherine Kudlick, professor of history and director of the Paul K. Longmore Institute on Disability at San Francisco State University.

“It changed the equation from being accommodation for individuals out of generosity to a situation where everyone could have access whether or not we know they need it. It became a rights-based issue, and that affects your social attitude. If you think access is your right versus a handout, you’re going to approach everything differently.

“Non-disabled people see more disabled people on a regular basis because they now have improved access,” Kudlick said. “When people are more in your space and you’re encountering them more, they’re less mysterious, weird, or scary. There’s the possibility to interact with people you might never have interacted with before. That’s not as true in all areas of the country, but it is improved.”

The Social Aspect of Disability

The manner in which American society views people with disabilities and the way people with disabilities see themselves has been positively influenced by the ADA. Today, people are acknowledging that there is a “social aspect of disability,” Kudlick said. Previously, disability was seen only as a medical condition.

“You were someone that had something unfortunate happen to you,” she explained. “You were an individual and you were dealing with a pathology and you went to medical professionals and tried to get them to fix it to overcome it. Now, people are saying that it’s about social context, about the built environment, understanding prejudice, attitudes, and ideas as much as it is about the actual person and what’s ‘wrong’ with them. That’s the sea change in thinking. It’s fundamental and allencompassing.”

Kudlick speaks with authority, having specialized in the history of medicine and disability issues, and having been born with cataracts that have affected her vision throughout her life. She notes that portrayals of people with disabilities in the media, particularly on film and in television, are beginning to change for the better, but adds that for every positive depiction, there are multiple examples that “set you back a hundred years.”

Kudlick likens the evolution of disability rights under the ADA to the transition phase the women’s rights movement went through 40 years ago. Resistance to change in attitudes about people with disabilities, she argues, is, in part, due to the money riding on the older views of people with disabilities.

Thomas Coleman speaks to media with Nora Baladerian, Ph.D., executive director of the Disability and Abuse Project, on July 10, 2014, in Los Angeles, California, to propose full voting rights and access for people with disabilities. A Voting Rights Act complaint was submitted on the same day to the U.S. Justice Department in Los Angeles. The Americans with Disabilities Act has helped to shift the perspective of access for people with disabilities from being a handout to being a right.

AP Photo/ Nick Ut

“That’s what funds medical research and charities – all of those appeals that people make for charitable contributions for services or medicine. They’re based on old-fashioned views. The poor little blind girl who learns to see again or the Jerry Lewis Telethon – until the public turns around and says, ‘I’m not going to give money. This is repulsive,’ they’re going to keep putting out schlock.”

One way to transform attitudes about people with disabilities is simply to interact with them, Kudlick stresses. Every semester as she begins the classes she teaches on disability, she asks her new students to fill out cards anonymously and ask whatever politically incorrect question they’d like to know about people with disabilities.

“If you can’t ask it here, you’ll never know,” she says to her students. “I tell them that I’ll throw in some of my own – those I’ve heard before – so that they’re not put on the spot. It gives me a sense of what they’re curious about.” According to Kudlick, her students “always want to know two things”: how many people are really cheating using disability placards for parking and what do disabled people want to be called?

“I think we want to acknowledge that these are people, people who have disabilities. People do struggle with language issues. Words like ‘ableism’ aren’t quite in our vocabulary yet. I think they will be within the next five to 10 years, especially as more and more people get older and are dealing with the prejudices around aging.

“Those are exactly the same prejudices around disability because aging is a form of disability,” she continued. “As more people encounter prejudices, dismissiveness, and stigma, I think they’ll start using the term ‘ableism.’ I don’t think you can attribute that directly to the ADA, but it’s part of a general shift in society that has come along with it.”

Kudlick acknowledges that the manner in which different disability communities wish to be addressed is an issue in flux. She points out that generally, individuals with disabilities do not like the term, “the disabled,” preferring to be called “disabled people” or “people with disabilities.” However, blind people don’t seem to mind being referred to as “the blind,” she observed.

Kevin Bella, a coach at Mission San Jose High School in Fremont, California, who is deaf, talks to members of the school’s football team. Increasing interactions between people with disabilities and people without disabilities is one way to transform attitudes about disability.

AP Photo/ Marcio Jose Sanchez

“It varies between people and circumstances. Someone in a wheelchair can be completely, helplessly disabled if they encounter a building with steps at the entrance but no access ramp. On the other hand, they can be utterly non-disabled if they’re in a movie theater that is accessible and they’re watching a movie. A blind person working at a call center doesn’t have a disability. They’re just doing their job. It’s all context.”

Context is important when noting how opinions have changed inside various disabled communities since passage of the ADA. As Kudlick reveals, there’s a history worth knowing.

“For a long period of time, the deaf community did not want to identify itself as being a community with a disability. They said, ‘We don’t have a disability. We are a linguistic minority.’ They didn’t want to be seen as people in need of help. They just wanted services or accommodations for their language like a non-English speaker.”

For illustration, she refers to the 1988 “Deaf President Now” protests at Gallaudet University in Washington, D.C. The university decided to appoint a hearing person as its seventh president, appointing the new leader in preference to two deaf candidates. The announcement sparked a week of protests demanding a deaf president be chosen to lead Gallaudet, the world’s first university for deaf and hard-ofhearing students.

“That revolved around language politics and it was at the height of negotiations for passage of the ADA, getting people to sign on and write clauses into it to get groups interested. The deaf at Gallaudet were a very vocal minority who were very articulate, passionate, and on the national stage. Because of that, they probably had more impact than might have been the case if there hadn’t been that uprising.”

Some outcomes come down to expectations, Kudlick said. The impacts of the ADA took time to be felt, she said, adding that expectations only take hold when reinforced.

“Most people don’t just wake up one day and feel that they are entitled to something that they didn’t have before,” Kudlick explained. “They need to see some sort of progress, some sort of change.”

Change has undoubtedly occurred under the ADA and Kudlick says that “the world is immeasurably better because of it,” but she agrees with other observers that the act is still evolving and much more remains to be done.

“The ADA doesn’t really fix prejudice,” she said. “It calls people on their prejudices. There’s nothing in place to inform people about stigmas. That’s what we need. The next phase is cultural change and putting mechanisms in place where people can start to value the contributions of people with disabilities, to think about disability as an opportunity for creative change for everyone.”

The Economic Aspect of Disability

Poverty is inextricably intertwined with disability, and an understanding of the economic issues faced by Americans with disabilities is of primary importance, Kudlick emphasizes. While the ADA put in place the legal framework for barring discrimination against disabled people, the act didn’t provide a ready remedy for the economic disadvantages people with disabilities face daily.

“The gains of the ADA did nothing to address the poverty, the social and economic inequality that’s at the core of disability. People with disabilities tend to be fired first in difficult economic times. That’s part of the way people think, unfortunately. Disabled people are incredibly resourceful, but there’s nothing in the ADA that encourages society to understand that we’ve got this great resource that we should take advantage of. That would be the next step.”

John Hoeven, then-governor of North Dakota, signs a children’s health care coverage bill at the Capitol in Bismarck, North Dakota, on April 17, 2007. The bill was implemented to help provide health coverage options for low-income families of children with disabilities. The bill was an effort to address the ongoing issue of poverty often faced by people living with disabilities.

AP Photo/ Marcio Jose Sanchez

Kudlick points to an American social welfare system that does not offer a safety net for anyone, and especially not people with disabilities. She says Americans with disabilities must be destitute before they can avail themselves of services and government support related to attendant care at home or equipment for which insurance won’t pay, for example. The lack of support is damaging in many ways.

“It’s to the point where there’s something known in the disabled community as ‘marriage disincentive,’” she said. “It is not in your interest as a disabled person to marry somebody wealthier than you if you want to get any kind of government assistance. The government will count the income of anyone that you marry against your eligibility for services and support. And it will take their money away from them. So for some, there’s no point in getting married, really.

“Our health care system and insurance system don’t provide the aid needed,” Kudlick continued. “There are people with disabilities that basically have to work until they die if they have any kind of coverage at all. The second they quit, they lose major supports.”

This is in contrast to Western Europe, where there is a social safety net for society at large, which also applies to people with disabilities, said Kudlick, who spent time studying and living in France. On the other hand, Europe lags behind the United States in terms of accessible built environments.

“You have a basic safety net in Western Europe. You know you will have health care, attendant care services, a place to live, and what you need to eat. We have none of those guarantees. If you could combine what they have with what we have, you might have a perfect world with all the access and a safety net. People with disabilities in the U.S. are basically not taken care of by the government.”

Disability Internationally

Though there are clearly differences in how people with disabilities are treated inside and outside the United States, Judy Heumann, the U.S. Department of State Special Advisor for International Disability Rights, leaves no doubt that America is the leader in disability rights, and that the ADA is the bedrock of that leadership.

“When you examine countries abroad including European states, Canada, Australia, New Zealand, Japan, and Korea, and the middle income and developing nations, you see that people look to the ADA as a touchstone of what legislation should look like, particularly in the area of antidiscrimination,” Heumann said.

“They look to the U.S. as a country that has greater enforcement mechanisms where there’s a clear legislative commitment to laws that have teeth. So the ADA and other pieces of legislation in America are seen as being very important to disabled people around the world.”

The primary international manifestation of America’s commitment to disability rights is known as the U.N. Convention on the Rights of Persons with Disabilities, or the “Disabilities Treaty.” It embodies the ADA principles of non-discrimination, equality of opportunity, accessibility, and inclusion.

According to Heumann, 151 countries have ratified the treaty so far, recognizing it as the primary mechanism through which countries are working to ensure that disabled people have full access to their communities and that abuses threatening the lives of adults and children with disabilities are addressed.

Heumann concedes that there is a divergence in how nations that have ratified the treaty treat their disabled communities and what rights they confer. But she stresses that all share a keen interest in working to get meaningful legislation developed and implemented. Moreover, persons with disabilities traveling to the United States from abroad are uniformly impressed, she says.

“They don’t feel the same type of stigma that they feel in their countries. There’s much more of an acceptance in the United States as a result of the ADA and other laws that have been on the books even before the ADA. The changes in America started fundamentally in the late 1960s and early 1970s. So the comment that people from other nations with disabilities don’t feel like they’re an outcast – like they frequently do in their own countries – is something we hear most often.

“Here, they have a greater opportunity to move about society and participate in things they cannot be a part of at home,” Heumann said. “It could be anything from someone coming to the U.S. as a Fulbright student to study here or someone coming for our State Department program where foreign high school students can spend a year in an American high school. There have been a number of disabled people who have participated in that program. They’ve talked about how beneficial it was for them to learn – even indirectly – how our laws have had an impact for disabled people.”

Susan Rice, center, U.S. ambassador to the United Nations, signs the U.N. Convention on the Rights of Persons with Disabilities on July 30, 2009, as Senior White House Advisor Valerie Jarrett, left, and Annebeth Rosenboom, right, Chief of Treaty Section, Office of Legal Affairs of the United Nations, watch. The U.S. Senate has not yet ratified the treaty, which embodies ADA principles of non-discrimination, equality of opportunity, accessibility, and inclusion.

AP Photography/ Mary Altaffer

According to Heumann, many of the disabled citizens of foreign nations who have traveled to America carry home with them what they learn about disability rights.

“I think it’s very important that whether disabled people have been here or not – if they’ve read about disability in America or have seen YouTube pieces or the film U.S. embassies are showing called Lives Worth Living – they understand that disabled Americans and other disabled citizens around the world are activists working to educate and empower the disabled population about their rights.”

Even countries not traditionally associated with civil rights are taking a more positive view of their disabled populations. China and Vietnam are showing a greater interest on the issue of inclusion of people with disabilities throughout society, Heumann notes, an indicator of more widespread progress.

The State Department shares information on disability issues with other nations through American embassies, highlighting the level of federal enforcement required by the ADA that gives the act teeth domestically.

“Programs like the ADA Regional Technical Assistance Centers supported by the government for close to 25 years now are very important, not just at home but as an example abroad as well,” Heumann pointed out. “They show a strong commitment by the U.S. government to ensure that people can get questions answered about the ADA so that it’s not simply a piece of paper. People can really use it. Disabled people can understand what their rights are and employers can understand their obligations.”

Though the Disabilities Treaty doesn’t specifically define disability, it does mirror the variety of disabilities covered by the ADA. Heumann said it must be up to each nation to craft its own definition, and the ADA can serve as an example to them.

“While the treaty itself doesn’t have a definition of disability, it covers the same breadth as the ADA. If you think about the ADA, it deals with physical disabilities, sensory disabilities, and invisible disabilities. The treaty is aspirational. It doesn’t give other countries a specific definition of disability because countries need to develop their own definition.

“I would say that any country that has ratified the treaty has done so in part because there is a disability community in that country pushing them. Through our programs, the State Department does its part to raise awareness. We’re seeing progress, countries developing and implementing laws granting rights for disabled people to go to school, benefit from construction that’s accessible, take advantage of inclusive education, accessible transportation, opportunities for employment, and more.” n