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Ed Roberts, the Disability Rights Movement and the ADA

This exhibit celebrates just some of the many groups and people who made the ADA possible, explores how and why it was passed, and concludes by looking at some of the major challenges we’re facing now. The ADA changed America, but there is a lot of work left to be done.

PART ONE: Disability Rights History Before the ADA
Ableism - the oppression and discrimination against people with disabilities - has always been with us. Despite centuries of isolation, segregation, violence, incarceration, and institutionalization, people with disabilities have always existed and have always resisted. 

In 1952, after Ed Roberts contracted polio, the doctors told his family he’d probably spend the rest of his life as “a vegetable.” Later, Roberts joked, “If I’m a vegetable, I’m going to be an artichoke, prickly on the outside, with a big heart in the middle.” With a combination of big heart, sharp words, and ferocious commitment to equality, Roberts helped create the disability rights movement as we know it today.

In 1962, Ed Roberts decided that he would attend UC Berkeley, even though they had no accommodations for people with severe disabilities. His ad hoc solutions soon made it possible for other disabled students to attend, paving the way for the creation of the Physically Disabled Student's Program and then the Center for Independent Living. Similar movements were beginning in other parts of the country.

Zona Roberts, Ed Robert’s mother, later went to work for the PDSP and travelled widely with Ed, advocating for disability rights around the world. She emphasized that young activists like her son modeled for other disabled people and their families that opportunity for education and independence could be possible. Youth movements have always been a part of the quest for disability rights.

The PDSP was so successful that they extended its benefits to Berkeley more generally, making it one of the most accessible places in the world. Roberts soon became California’s Director of Rehabilitation - the same department that had refused to help him go to college because they believed he would never be able to work.

In 1970, New York Department of Education denied Judy Heumann a teaching license because she couldn’t walk, due to post-polio paralysis. She sued and made the story go “viral” in the newspapers of the day, forcing the department to change their policy. As other people with disabilities reached out to her, they founded a new cross-disability political activist organization, Disabled in Action. A few years later, she moved out to Berkeley to become Deputy Director of the Center for Independent Living, just as a new issue was emerging: Section 504.

Section 504 of the 1973 Rehabilitation Act was the first U.S. federal civil rights protection for people with disabilities, but both the Ford or Carter Administration refused to implement it. So disability rights activists took matters into their own hands and staged sit-ins all over the country. At the San Francisco Office of the U.S. Department of Health, Education and Welfare, activists staged the longest sit-in of a federal building in U.S. History.

The sit-ins and other direct action worked. Section 504 was signed and implemented, teaching disability rights activists that they could shape federal legislation, paving the way for new battles.

Disability rights are civil rights. Cross-movement activism remains one of the lasting impacts of the direct actions of the 1970s. As civil rights activists of all sorts came to support the disability rights movement, they helped convey the message that disability is not about an individual’s medical diagnosis, but about identity, community, and justice.

Around the country, groups and individuals learned from the success of the 504 movement, practicing both direct action and governmental lobbying and service in order to achieve their goals.

One important goal was access to public transportation. The fight to get transportation access was led by a new coalition of activists called ADAPT. This national grassroots organization staged actions across America, often physically imposing themselves in front of busses to demand attention for their cause.

The Deaf community, long plagued by audism - discrimination based on the notion that people who can hear are superior - united around a contest over the leadership of Gallaudet University. Students and their supporters rallied around the idea that Gallaudet, the world’s only liberal arts university for Deaf and Hard of Hearing students, must have a Deaf president for the first time in its history. When the Board appointed a non-Deaf president, students led marches, sit-ins, and other direct actions. Eventually, the Board of Trustees named Dr. I. King Jordan the first Deaf president and took other steps to empower the Deaf community to participate in governing their university.

Cross-disability activism and identity - in which disabled people identified with each other as part of a movement, even if their conditions differed, helped build the coalition that made the ADA possible. They embraced the principle that people with disabilities needed to lead their own lives, organizations, and institutions. Cross-disability activism led ADAPT and other disability rights groups to support Gallaudet during the Deaf President Now protest.

PART TWO - The ADA
The passing of the ADA was the culmination of decades of work. The ADA promised the right to reasonable accommodation, fair treatment in employment, and an overall country-wide awareness of disability rights. The bill required direct action, legislative determination, and support from the White House. Here are just some of the landmark moments and actions that expressed the cross-disability power of the movement.

The ADA Diaries were a collection of stories about disability discrimination from all over the country assembled by Justin and Yoshiko Dart. The Darts traveled all over the country for years hosting gatherings where people with disabilities would tell their stories of discrimination, segregation and inequality.

The Congressional Task Force on the Rights and Empowerment of People with Disabilities, chaired by Justin Dart Jr., invited some of the participants in the ADA diaries to testify directly to Congress. The testimony of individuals like Lakesha helped make the discrimination experienced by disabled people more real to Congress and the national media. Collectively, such testimony argued that disabled individuals weren’t looking for special rights, but just fairness and access to the rest of society.

After years of work by so many people in and out of D.C., the ADA had passed the Senate but seemed stalled in the House. Over 1000 protestors came to Washington in March of 1990 to protest the delay. In a dramatic event, some activists cast aside crutches and wheelchairs and pulled themselves up the 83-steps of the Capitol building. The crawl symbolized the lack of accessible spaces that disabled Americans faced every day. Along with hard work behind the scenes, this activism propelled the ADA forward towards passage.

Direct action was only one part part of the effort that went into passing the ADA. The disability rights movement had many allies in Congress and the White House, especially from lawmakers and officials who were either disabled themselves or had disabled family members. These four Senators, for example, were all major supporters of the ADA. Edward Kennedy (D-MA) had an intellectually disabled sister. Tom Harkin’s (D-IA) brother Frank was Deaf. Bob Dole (R-KS) had been disabled in WW2. Lowell Weicker’s (R-CT) son had Down syndrome.

When the ADA passed the Senate, Tom Harkin delivered the first speech on the Senate floor in sign language, sending a message of solidarity to his brother Frank, and millions of other disabled Americans who needed the help promised by this bill.

Of course, the White House also had to sign off, and one of the leaders there was Justin Dart Jr. As vice-chair of the National Council on Disabilities and a friend of Ronald Reagan, Dart served as the link between disability rights groups around the country and D.C. He helped collect the “ADA Diaries”, lobbied the White House and Congressional leaders, and helped build momentum for the bill. For his efforts, many people still give him credit for the ADA, although he always credited many leaders as well as the community’s collective action.

At the signing ceremony, Justin Dart Jr. was unexpectedly invited onstage and found himself uncomfortable with the attention. He was proud of the ADA and all the work he had done, but knew that the real work - to put it into effect - was just beginning. He spent the rest of his life not only working on implementing the ADA, but nurturing the next generation of leaders. Those leaders are now taking his message of universal empowerment, love, and justice to young people who can carry the movement forward.

The Americans with Disabilities Act prohibits discrimination on the basis of disability, mandates employers provide “reasonable accommodations” to people with disabilities, and imposes accessibility requirements on transit. Its protections have proven especially powerful when it comes to government services and public access.

The ADA provided a legal framework for disability rights. It was immediately clear, and remains clear today, that using the ADA to create more equity and justice for people with disabilities would take an enormous amount of work. As the years have passed, we’ve seen enormous gains both in terms of integration into mainstream society and celebrating our own unique cultures. The successes, though, have only made the ongoing and emerging struggles more apparent.

The ADA has radically transformed the built environment. Curb cuts, ramps, power doors, elevators - these innovations have made the world more accessible to people with disabilities. In fact, when we build spaces based on the principles of universal design, emphasizing accessibility for the greatest number of people, everyone benefits.

PART THREE - What is disability? What’s next for the movement?
Many of the most pressing problems facing the disability community stem from fundamental misconceptions about the nature of disability itself. Too many people still think disability is something clear and simple, something you’re born with, something separate. But everyone is likely to experience disability at some point in their life. Some disabilities come and go. Many disabilities are non-apparent. The disabled community is as diverse as humanity itself, and disability is not what most people think. The solution is to focus on the ways that society constructs barriers to inclusion and to access, rather than worrying about who is or isn’t disabled, or trying to fix people who are not broken.

The ADA has a legislative and legal legacy, from the 1999 Olmstead v L.C. Supreme Court decision, to the 2008 ADA Amendments Act (ADAAA). These laws both addressed expanding the definition of disability. Olmstead ruled that people with disabilities have a right to live in communities instead of institutions. The ADAAA expanded the protections of the ADA, in part by widening the definition of disability to include a variety of non-apparent disabilities, such as cancer, diabetes, and epilepsy. Both the Olmstead decision and ADAAA remind us of the diversity of disability and that all people with disabilities, non-apparent and apparent must be recognized, protected and afforded the right to work and live within their chosen communities.

Not all issues depend on laws, of course. From smartphone apps, 3D printed prosthetics, to better wheelchairs, innovations in technology are opening new frontiers of accessibility every day. We’re still lagging, though, in building a truly accessible internet, something so important for including people with disabilities in the most powerful information culture of the modern world. We can not just build ramps into an inaccessible internet, but instead need an online world based around the principles of universal design.

Polling places are legally required to be accessible, but a 2012 study by the National Council on Disability found “architectural, attitudinal, technological, legislative, and voting practice barriers that confronted voters with disabilities.” Many people with disabilities just do not bother trying to vote anymore. Discrimination (whether intentional or not) keeps people with disabilities from participating fully in their systems of government. This must change. The right to vote is a basic American value; furthermore, without the power of the vote, the disability community will lack the power to push our governments to address our most pressing issues.

Many children with disabilities can attend school with their peers. This isn’t because of the ADA, but due to the gradual impact of Individuals with Disabilities Education Act (IDEA). IDEA enshrines the principles of a “Free and Appropriate Education” (FAPE) in the “Least Restrictive Environment.” The arrival of many disabled children in the classroom has not only been good for their education, but has helped teach generations of non-disabled children that an inclusive society is good for everyone. Next, though,we need to move from inclusion - in which a disabled child is allowed into the mainstream classroom - to integration. An integrated classroom belongs to everyone.

Real independence requires access to jobs and the ADA demands “reasonable accommodation” on the job site, but here its impact has been mixed. More disabled individuals work for the federal government right now than at any time in history, and some companies have ramped up their efforts to hire people with disabilities through diversity initiatives, but the private sector lags behind. Too many people with disabilities can only find work in sheltered workshops, paid far below the minimum wage, and isolated from society. In 2015, the unemployment rate for disabled individuals who wanted work is twice as high as for the non-disabled population. We have to do better.

One way to improve employment is to make sure that young people with disabilities receive both the training and supports that they need as they enter adulthood. We’re failing. Schools are much better now, but once a child ages out (the age varies by state), they "fall off the cliff" and lose all services. Young people suddenly find themselves isolated as their friends go off to college and leave home, they get pushed towards sheltered workshops, prisons and institutions, or they just sit at home. To foster independence in people with disabilities, we need to continue to provide education and assistance as they transition to adulthood.

Too many people with disabilities are still stuck in institutions. Some are confined to nursing homes because the state will not support a community option, whereas others have no choice but to live in homes for people with disabilities. Prisons, though, are the worst aspect of 21st-century forced institutionalization. Around 400,000 individuals with psychiatric disabilities are currently in jail. As many as 40% of such people will be incarcerated at some point. The solutions are known - Housing and community-based mental health services would help - but have yet to be enacted. Instead, people with disabilities languish in prison, suffering not only deprivations of freedom, but systematic violence and danger.

Prison isn’t the only place that disabled people are likely to encounter violence. Countless studies have verified that women and men with disabilities, especially intellectual disabilities, are much more likely to be sexually assaulted than people without disabilities. People with disabilities are more likely to be victims of domestic violence, as well. A third to a half of all people killed by police have disabilities, and children with disabilities are much more likely to be subjected to restraint, isolation, and criminalization in school than children without. American society, despite the ADA, is still a dangerous place to be disabled, especially for disabled individuals who hold multiple marginalized identities.

But still, empowered by the ADA and in the face of ongoing adversity, disability cultures and communities have flourished. For example, across the nation, young people with disabilities are starting their own cross-disability advocacy, community, and arts groups. These groups are trying to build connections among among youth with disabilities with diverse backgrounds and identities (LGBTQ, communities of color, etc.). These people represent the future of the struggle for disability rights, but too frequently lack support and mentoring from mainstream elements of movement.

Another way that the disability community is expanding is the inclusion of people with intellectual and developmental disabilities as leaders. Too often, the focus on disability has emphasized only people with neurotypical minds; for example, people who are physically disabled, blind, or Deaf. Now, the self-advocacy and neurodiversity movements, led for and by people with intellectual and developmental disabilities, aim to expand the types of people with disabilities that can lead the way in the struggle for integration, justice, and opportunity.

The expansion of the movement cannot just be limited to people with diverse types of disabilities, but to all types of diversity. Disability intersects with multiple identities, often unrecognized, and although cross-movement activism was an important part of the Section 504 and ADA, solidarity has to be worked at in order to be maintained. Disability rights are civil rights. The flip side is that quest for civil rights that are not explicitly about disabilities still intersect with the the disability rights movement, and should be supported.

The disability rights movement has always depended on people with and without disabilities, youth movements, mentors, cross-disability and cross-movement alliances, and lots of hard work. There are so many ways to fight ableism and promote the freedoms and ensure justice for all people with disabilities. Visit AAPD to learn more about how to help with issues such as:

Unemployment
Poverty
Mass Incarceration & Institutionalization of People with Disabilities
Access to information and technology
Policy Brutality
Education
Parenting
Sexual and Domestic Violence

American Association of People with Disabilities
Credits: All media
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