Approximately 54 million people, one in five Americans, have a disability, according to the U.S. Census Bureau. The size of this population group would rank people with disabilities among the largest minority groups in the United States. Disability knows no limitation by race, ethnicity, religion, or gender. It is an experience that touches upon every corner of society. Indeed, as average life spans trend upward, disability prevalence is also increasing as a natural phenomenon of aging. However, people with disabilities remain in the shadows of the general public, largely ignored as people with an undesirable characteristic and condemned to inequality of opportunity. This entry offers insight into the disability identity and its future direction.
Medical Model of Disability
Conventionally, disability refers to an individual’s physical or mental limitations. For example, the World Health Organization defines disability as any restriction or lack of ability (resulting from an impairment) to perform an activity in the manner or within the range considered normal for a human being. With the deficiency construed as inherent, biological, and abnormal, the focal point was to repair or mitigate the functional limitation to the extent medically possible. Disability became primarily a challenge for the medical profession, to “cure” people of their physical and mental shortcomings.
Whereas many types of disability cause physical hardship and affect the quality of personal health, most disabilities are relatively benign and manageable with the proper supports. Although the provision of health care is a humane effort that is a foundation of civilization, the well-being of people consists of more than the functionality of their body parts. The narrow and heavy emphasis on the medical aspects of disability created a social understanding and attitude about people’s well-being as diminished if they have a disability.
In cases where medical intervention into disabling conditions was limited by research, technology, capacity, or resources, frequently charitable or governmental institutions would attempt to bridge the gap by providing funds. For charitable organizations, a particularly effective means for collecting contributions was appealing to the public’s sense of empathy and pity by portraying people with disabilities as victims of natural tragedy. Petitions for support from governmental institutions typically described people with disabilities as unfortunate wards of the state requiring care by society. Collectively, those approaches created a social mind-set that a physical or mental limitation condemns one to a lower standard and quality of life, and their recourse is dependence on society’s largesse if they are not medically restored. Educational institutions and employers thus doubt their ability to successfully educate and employ people perceived as below the mainstream of society.
In response, people with disabilities often develop low self-esteem and low expectations for how they may assert themselves in life. Compounding this situation is the fact that members of their families or communities are likely not to share the same condition, removing them from any opportunity for a shared cultural identity with respect to a distinguishing characteristic. Unless people lay claim to a different model of experiencing their disability, they are more likely to become isolated, impoverished, undereducated, and out of place with society.
Social Model of Disability
In 1962, the University of California at Berkeley admitted Ed Roberts and arranged for him to live in the campus medical facility out of concern for his polio-related condition. He had almost no functional movement and was dependent on a respirator. A year before, Ed had been rejected by the California state vocational rehabilitation department as too severely disabled and considered “unemployable.”
Ed organized other students with disabilities in a group called “The Rolling Quads.” Together, they started a self-determination movement which would radicalize perceptions of people with disabilities and how they perceived themselves. Stating that he was tired of well-meaning noncripples with their stereotypes of what he could or could not do in deciding his life choices, Ed explained his desire for “cripple power,” where the disabled would direct their own programs and be able to train other disabled persons to direct new programs. He insisted that achieving independence was not a functional limitation or medical issue but rather a sociological, political, and civil rights one.
In 1972, Ed and others established a community-based self-help program called the Berkeley Center for Independent Living (CIL). The fundamental philosophy of the Berkeley CIL—dignity, consumer direction, peer support, and civil rights advocacy— sparked an independent living movement that has since resulted in nearly 500 CILs throughout the country. The term center for independent living is now commonly understood to mean a consumer-controlled, community-based, cross-disability, nonresidential private nonprofit agency that is designed and operated within a local community by individuals with disabilities and provides an array of independent living services.
The independent living movement pushed for the “demedicalization” of disability by shifting from a controlling medical model to an approach of individual empowerment and responsibility for identifying and fulfilling one’s own needs. There was growing awareness that environmental and attitudinal issues produced the greatest challenges and barriers to the independence and full participation of people with disabilities, more so than their physical and mental conditions. Solution efforts focused not on people with disabilities but on altering and remedying societal and environmental barriers.
People with disabilities began to view themselves as capable, self-directed, and with opportunity, as opposed to being afflicted, less than normal, victims of external barriers, objects of charity, and passive beneficiaries of governmental support. Evolving society began to view disability as a natural and common human experience, not a tragedy.
As an ironical footnote, in 1975 California Governor Jerry Brown appointed Ed Roberts as the state director of the Vocational Rehabilitation Agency, which originally had refused to serve him as being too severely disabled ever to work.
Civil Rights Movement
In the United States, the disability rights movement emerged in the 1970s as a substantial tool in eradicating the societal and attitudinal barriers afflicting people with disabilities. Modeling the African American and women’s civil rights movements, groups of people with disabilities became fierce advocates in gaining the right to be free from discrimination and to pursue equal opportunity. A series of national disability rights laws were enacted:
- Architectural Barriers Act: prohibits architectural barriers in all federally owned or leased buildings.
- Rehabilitation Act: particularly Title V, Sections 501, 503, and 504, prohibits discrimination in federal programs and services and all other programs or services receiving federal funding. Also provides for independent living centers and the Client Assistance Program, an advocacy program for consumers of rehabilitation and independent living services.
- Developmental Disabilities Bill of Rights Act: among other things, establishes protection and advocacy.
- Education of All Handicapped Children Act (Pub. L. No. 94-142): requires free, appropriate public education in the least restrictive environment possible for children with disabilities. This law is now called the Individuals with Disabilities Education Act.
- Mental Illness Bill of Rights Act: requires protection and advocacy services for people with mental illness.
- The Civil Rights of Institutionalized Persons Act: authorizes the U.S. Attorney General to investigate conditions of confinement at state and local government institutions, such as prisons, jails, pretrial detention centers, juvenile correctional facilities, publicly operated nursing homes, and institutions for people with psychiatric or developmental disabilities.
- Air Carrier Access Act: prohibits discrimination on the basis of disability in air travel and provides for equal access to air transportation services.
- Telecommunications Act: requires manufacturers of telecommunications equipment and providers of telecommunications services to ensure that such equipment and services are accessible to, and usable by, persons with disabilities, if readily achievable.
- Voting Accessibility for the Elderly and Handicapped Act: generally requires polling places across the United States to be physically accessible to people with disabilities for federal elections.
- Fair Housing Amendments Act: prohibits discrimination in housing against people with disabilities and families with children. Also provides for architectural accessibility of certain new housing units, renovation of existing units, and accessibility modifications at the renter’s expense.
- Americans with Disabilities Act: provides comprehensive civil rights protection for people with disabilities; closely modeled after the Civil Rights Act and Section 504 of Title V of the Rehabilitation Act and its regulations.
People with disabilities have made great strides in recent years, which saw the emergence of nationally recognized disability rights laws that propelled awareness of the desire for people with disabilities for full inclusion in the mainstream of society. Disability advocacy groups, such as the American Association of People with Disabilities, used its several thousand membership base to become a force in promoting political and legislative responsiveness to the issues of people with disabilities.
The disability rights movement is now global, as recently highlighted in March 2007, when the United Nations adopted the Convention on the Protection of the Rights of People with Disabilities. The convention reflects the evolving concept of disability and fully represents the human right of people with disabilities to determine and direct their destinies.
- American Association of People with Disabilities. (http://www.aapd.com/).
- Disability Social History Project. (http://www.disabilityhistory.org/).
- Institute on Disability. (https://iod.unh.edu/).
- National Council on Disability. (http://www.ncd.gov/).
- Smithsonian Museum of American History, the Disability Rights Movement. (http://www.americanhistory.si.edu/disabilityrights/welcome.html).
- UN Division for Social Policy and Development Disability. (https://www.un.org/development/desa/disabilities/).
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