Independent Living

[Adapted from Achieving Independence: The Challenge for the 21st Century, National Council on Disability, 1996, pp17-20]

In its broadest implications, the independent living movement is the civil rights movement of millions of Americans with disabilities. It is the wave of protest against segregation and discrimination and an affirmation of the right and ability of persons with disabilities to share fully in the responsibilities and joys of our society. Ed Roberts, 1977

For generations, society has viewed people with disabilities as citizens in need of charity. Through ignorance we tolerated discrimination and succumbed to fear and prejudice. But our paternalistic approach did no more to improve the lives of people with disabilities than labor laws restricting women in the workplace did to protect women. Today we are shedding these condescending and suffocating attitudes--and widening the door of opportunity for people with disabilities….People with disabilities are here today to remind us that equal justice under the law is not a privilege but a fundamental birthright in America.

Senator Ted Kennedy, during the Senate's passage of ADA-July 13, 1990

A hallmark of the past decade has been the growth of the disability rights movement and the independent living philosophy. Just as civil rights movements for African-Americans and women propelled political, social and legal changes in society, so too has the disability rights movement.

During the 1960s and 1970s people with disabilities began to organize themselves to gain greater access to society and to challenge widely-held stereotypic beliefs and attitudes about them. Influenced by the Black civil rights and antiwar movements of the 1960s, and the feminist movement of the 1970s, disability leaders began to articulate an agenda and engage in activities to promote their civil rights. Although there is no one defining event marking the birth of the independent living movement, the determination of a group of students with disabilities to attend the University of California at Berkeley in the 1960s is often considered the pivotal effort that began the disability rights movement. Those students were led by Ed Roberts, at the time a young man with significant disabilities who was determined to go to college.

Other people with disabilities began organizing groups around the nation. Grassroots organizations in different communities organized to seek community-based services that supported their independence in lieu of institutions and services that fostered dependence. In Washington, a national coalition--the American Coalition of Citizens with Disabilities--was formed to monitor and influence legislation.

 

 

The three cornerstones of the independent living philosophy are consumer sovereignty, self-reliance, and political and economic rights. The philosophy rejects the supremacy of professionals as decision-makers and views disability as an interaction with the society and the environment rather than as a medical condition or physical or mental impairment. Essential features of the independent living service model include consumer control, a cross-disability emphasis (inclusion of people with all types of disabilities--mental, physical, sensory), a community-based and community-responsive approach, peer role modeling, provision of a wide range of services, a community advocacy orientation and open and ongoing access to services.

Beginning in 1978, funding for independent living services was authorized through Title VII of the Rehabilitation Act. These funds were authorized to promote the development of service programs operated by and for people with disabilities. In 1979, ten independent living centers were funded throughout the country. Today there are over 200 centers, providing information and referral services, peer counseling, independent living skills training, and individual and systems advocacy.

 

The disability rights perspective views people with disabilities as a minority group that has been subject to discrimination and unfair treatment--in legal terms, a class of people. It stands in contrast to a charitable perspective which views people with disabilities as unfortunate and deserving of pity and care-taking. It also stand in contrast to the medical model, which views people with disabilities as needing to be "cured." Likewise, it contrasts with a rehabilitation perspective, which views people with disabilities as needing experts and professionals who can provide services to enhance their functioning.

Since the 1980s, the disability rights perspective has become the dominant perspective adopted by leaders of the disability community and has been reflected in their approach to public policy. One commentator described this evolution of recognition for people with disabilities as moving from "caste to class."

The tenets of other civil rights movements apply to the disability rights perspective as well. The defining aspect of this perspective is that people with disabilities, as a group, have been subject to pervasive and persistent discriminatory treatment. The remedy for such treatment is a prohibition against discrimination, protection of civil rights, and heightened empowerment of people with disabilities. Beginning with the passage of Section 504 of the Rehabilitation Act of 1973, people with disabilities were acknowledged by Congress as a class of people subject to pervasive discrimination. The Americans with Disabilities Act (ADA) affirmed this view. Disability policy has increasingly acknowledged that--like race, ethnicity, gender, and age--disability is a characteristic that invites discrimination.

The notion of disability rights is a relatively new concept, yet to be widely understood by the public. While people generally acknowledge racism and sexism as realities to be challenged, discrimination against people with disabilities often goes unperceived. Furthermore, paternalistic acts and attitudes toward people with disabilities are often expected and accepted, when in fact they are reflections of discrimination and should be so labeled.

Many organizations have evolved over the last couple of decades to promote and defend the rights of people with disabilities. These include the Disability Rights Education and Defense Fund, Americans for Disabled Attendant Programs Today, the National Council on Independent Living, the National Association of Protection and Advocacy Systems, the National Parent Network on Disabilities and the Consortium for Citizens with Disabilities, which is based in Washington and comprises over 100 national organizations.