“I am a slow walker, but I never walk backward… be not deceived, my friends, revolutions do not go backward.” Lincoln
Prior to the 1960’s, people with significant disabilities were invariably incarcerated in state-run institutions. People with mental illness, developmental disabilities, and sensory or physical disabilities were kept in appalling and inhumane conditions often far worse than criminals were subjected to, even at the time. Deinstitutionalization is a process that began to occur in the 1960’s in which people with significant disabilities were gradually released from institutions to return to their communities where treatment was to be available. This process created for the first time in American history an opportunity, an imperative, for people with disabilities to live free and independent lives. From this, a community and a culture with history, values, and an objective were born. As with any minority, the real battle would come in winning the support of the public. The movement toward deinstitutionalization came about through disability activism, but another historically important factor was the emergence of new technologies and medications, coupled with an expectation of even better assistive technology. Although deinstitutionalization was a victory for the disability community, the public did not yet believe that people with disabilities were entirely entitled to their civil and human rights regardless of disability.
Emancipation from state-run institutions came for the disability community amidst massive Civil Rights Movements nationally and abroad. Leaders of the disability community began to realize that our human rights and civil liberties would come only as we fought for them, and that we would have to fight in the street to have our voice heard in Washington in order to enact anti-discrimination and civil rights laws that applied to people with disabilities directly. With most state-run institutions closed, people with significant disabilities became more visible, and more audible, too. But society’s unwelcoming attitude did not change. This situation created an opportunity for the private medical industry to appropriate the position once held by state-run institutions. Nursing home expansion allowed society to avoid integration of people with disabilities while maintaining a clean conscience, as the nursing home industry began to spin the issue as a social welfare cause. All the while, they pushed policies that would make it almost impossible for a person to leave a nursing home once they had entered. The nursing home industry worked to enact laws that created an “institutional bias,” which means that the government will pay for needed services for a person residing in a nursing home, but not for the same services provided in one’s own home, even when the cost is less. For people who depend on these services, this effectively means that they may never be able to leave a nursing home. With people with disabilities out of sight and out of mind, segregation remained a viable option for America and the nursing home industry became a formidable and affluent opponent for the Disability Rights Movement.
Beginning in the 1940’s and 50’s, people with disabilities began to organize for political change. Leagues developed for “The Blind,” “The Deaf,” and “The Physically Handicapped,” advocated for an end to discrimination in Federal programs, education, and employment. Disability-specific advocacy efforts initiated and pioneered the Disability Rights Movement and realized significant accomplishments in opportunities available to people with disabilities, but real political power was achieved with the dawn of the Independent Living Movement, which is founded in the belief that people with disabilities, regardless of the form, have a common history and a shared struggle, that we are a community and a culture that will advance further banded together politically.
The Independent Living Movement articulated and embodied the values of the Disability Rights Movement. One critical aspect of Independent Living philosophy is the conversion from the Medical Model to the Independent Living Model (or Social Model) of understanding disability, which gave people with disabilities a new way of understanding our identities as people with disabilities. As it developed and took hold the political identity of people with disabilities cemented itself. Protests, occupations, and other acts of civil disobedience intended to gain basic civil rights for people with disabilities were held nation-wide. Heroes of the Disability Rights Movement realized sweeping legal victories over the years, including the overriding of President Nixon’s veto of the Rehabilitation Act by Congress and the Individuals with Disabilities Education Act (formerly the Education of all Handicapped Children Act), which requires that children with disabilities be educated in the least restrictive environment possible.
“Let the shameful wall of exclusion finally come tumbling down.”
Ed Roberts and other disability activists founded the first recognized and funded Center for Independent Living in Berkeley, California. Centers for Independent Living were created to be run by and for people with disabilities, and offer support, advocacy, and information on empowerment in the attainment of independence from a peer viewpoint, a perspective that was hitherto excluded from participation in the discussion and execution of “services for the disabled.”
Ed Roberts is often referred to as the “Father of Independent Living.” Ed faced audacious discrimination in his educational pursuits. He fist encountered adversity in high school, advocating for the physical education and driving license requirements to be waived, and the diploma he had earned granted. The California Department of Rehabilitation refused his request for financial aid to attend college on the basis that he was “too disabled” to work. The University of California accepted him as a student, but later rescinded their decision with the comment by one Dean, “We've tried cripples before and it didn't work.” After going public with his story, both the University and the Department of Rehabilitation reconsidered their positions and Ed eventually went on to become the head of the Department of Rehabilitation, the very same agency that had dismissed him as unemployable fifteen years earlier.
After winning her right to a public education after having been declared a Fire Hazard, Judy Heumann faced similar discrimination in access to employment in her field. The New York City Board of Education refused to allow her to teach on the basis that she could not pass a physical education exam. She eventually persuaded the Board that their decision was discriminatory and taught elementary school for three years before going on to found Disabled in Action in New York.
"When I actually applied for my teaching credentials you had to take three exams, a written exam, an oral exam and a medical exam. All three of those exams were given in completely inaccessible buildings. So I had to be carried up 1 to 2 flights of stairs depending on where I had to go; I passed the oral exam and I passed the written exam but I failed the medical exam and the board wrote down that I failed because I couldn't walk and so we sued and when I sued the Board of Ed that was the beginning of many things. …In essence what they were saying was I was a fire hazard. I couldn't walk. So suing the Board of Ed and getting that credential and actually teaching really helped me realize that …when you begin to push, push, push, in many cases you can beat the system."
Across the country, other Centers for Independent Living began to grow simultaneously in Houston, Boston, and Chicago. Wade Blank and the Atlantis Community established ADAPT, an activist organization that reformed access for people with disabilities to public transit and continues its fight for deinstitutionalization today. These are often remembered as the glory days of the Disability Rights Movement, fondly recalled by activists, and rightly so, as they carried out some of the most daring protests in American Civil Rights history, including the longest occupation of a Federal building in history April 5th through May 1st, 1972. In conjunction, rallies and sit-ins were held in nine cities across the country, and the action led to the release of the regulations of the Rehabilitation Act of 1973, which bans discrimination against people with disabilities in federally funded programs.
Independent Living philosophy emphasizes consumer control, the idea that people with disabilities are the best experts on their own needs, having crucial and valuable perspective to contribute and deserving of equal opportunity to decide how to live, work, and take part in their communities, particularly in reference to services that powerfully affect their day-to-day lives and access to independence.
As the Independent Living philosophy took hold nationally and the Disability Rights Movement gained acceptance and political influence, a grassroots movement for a comprehensive disability rights law was implemented. The Americans with Disabilities Act, which prohibits discrimination on the basis of disability in employment, public transportation, places of business and other services available to the public was signed into law July 26, 1990 by President George H.W. Bush. Though the Act is often misinterpreted, the preamble states its intent clearly,
"Enactment of the ADA reflects deeply held American ideals which treasure the contributions which individuals can make when free from arbitrary, unjust, or outmoded societal attitudes and practices that prevent the realization of their potential. The ADA reflects a recognition that the surest path to America's continued vitality, strength and vibrancy is through the full realization of the contributions of all of its citizens. The Disability Rights Movement has achieved a sizable presence only over the course of the past twenty years. In contrast to earlier conceptions of disability, it presupposes the human potential of people with disabilities, maintains that people with disabilities have the competence and should have the right to govern their lives, and holds that the proper goals of public policy are the creation of meaningful equal opportunity encouraging the growth and integration of people with disabilities into society. And it maintains that the elimination of a multitude of attitudinal, communication, transportation, policy and physical barriers based on erroneous assumptions about disability will result in a substantial enhancement of the productive integration of people with disabilities into our society."
Today, Centers for Independent Living and other Disability Rights organizations fight similar battles to ensure that the rights of individuals with disabilities, as well as people with disabilities as a class are protected. Even with the passage of the Americans with Disabilities Act, people with disabilities often find that advocacy and support from the disability community and the Disability Rights Movement is an essential element in enforcement of the civil rights law. Though the ADA provides a useful legal groundwork for understanding the rights guaranteed to Americans through a disability perspective, society as a whole still embraces the negative and paternalistic attitudes that restrict us from participating fully in our communities and gaining access to basic civil rights, such as voting, opportunity for gainful employment, and equal education.
The Disability Rights Movement today is not a cause among a multitude of other causes, with an agenda simply competing for attention of lawmakers. Many of the issues we fight for have strong opposition and powerful lobbyists in the for-profit sector. It is imperative that the Disability Rights Movement and leaders of the Independent Living Movement remain dedicated to the community values, objectives, and unity built on our history and experiences, lest we lose the fundamental civil and human rights we have won, though not fully seized.
