DESEGREGATING THE DISABLED
The average life span of Americans has nearly doubled from 1900 to 1980. Since disability tends to increase with age, by 1980 thirty million Americans experienced disability firsthand. Many thousands acquired disabilities through industrial, workplace injuries or from serving in World War I, World War II, the Korean War, and the Vietnam War. Sheer demographics made disability a societal challenge rather than a scattered, personal predicament. One of the most formative pieces of social policy legislation in the 20th century was the passage of the Americans with Disabilities Act (ADA), signed in 1990.
The ADA changed the public discourse about the role of people with disabilities in society. Its stress on self-determination, self-reliance, and individual achievement gave the watershed policy a distinct American flavor, but it is quite universal in its champion of human rights. People with disabilities are an integral part of society; they should not be segregated, isolated, or subjected to the effects of discrimination. Unique in the context of civil rights legislation, the ADA requires that businesses and governments do more than just cease discriminatory actions. They must take proactive stepscommensurate with their economic resourcesto offer equal opportunity to persons with disabilities.
In 1982 the United Nations (UN) launched a "Decade of Disabled Persons, 1983-1992" and adopted the World Program of Action Concerning Disabled Persons, a 40-page document calling on all nations to focus their efforts on prevention, rehabilitation and equalization of opportunity for disabled persons everywhere. While many people assume that the ADA had its origins in these two UN actions, it is the other way around. This is why the 22 Standard Rules on the Equalization of Opportunities for People with Disabilities, that the UN adopted in 1993 after years of negotiation, reveals ADA influence. Historians trace the success of the ADA to the precedent one of the Civil Rights Act in America in 1964.
The delegation that President Bill Clinton sent to the UN in 1993 negotiated for changes in the Rules' final wording. They argued for integrated approaches to providing access and inclusion to people with disabilities rather than the segregated "facilities" far apart from typical community life. This met with some defensiveness because the present service systems of many Member States are segregatory. However, dozens of studies and demonstration projects in America conclude that, with appropriate planning and ongoing support, students with even the most severe disabilities can receive very high quality education and related services within typical neighborhood schools among their non-disabled peers. In contrast, sheltered workshops seldom lead to the placement of clients in mainstream employment, pay extremely low wages, are very often full of "down time" due to lack of work, and, finally, are often in violation of basic labor standards set by governments and through collective bargaining arrangements. In the final version of the Rules, the term "special facilities" was replaced by "special education." A change in wording is the beginning for an ultimate change in reality.
While the American Civil Rights Act of 1964 made no reference to persons with disabilities, it served as a philosophical foundation. Logical implications in the Civil Rights movement extended beyond race.
In the early 20th century, Americans widely talked of the "race problem," referring to the national presence of black people. The locus of the problem was supposedly the individual black person and his or her supposed inferiority. With the Civil Rights movement came a new social critique. The problem was not the black human being, but pervasive racism. The American economy and social structures tended to exclude blacks, rather than incorporate them as valued citizens. A transformation of the nature of America's institutions was neededthrough legal measures and a gradual erosion of prejudice. These social critiques were not about subverting core American values but about the partaking of them.
The Civil Rights Act, which entitles all persons, regardless of "race, color, religion, or national origin," to the "full and equal enjoyment of the goods, services, privileges, advantages, and accommodations of any place of public accommodation," was born of a grassroots, protest movement. Images of dogs and fire hoses unleashed on peaceful marchers thrust the injustice of racial subordination on everyone in the world. Confronted by the flagrant violation of American principles of liberty and equality, even public opinion at home shifted to support the aspirations of America's blacks. The resulting Civil Rights Act, signed into law by President Lyndon B. Johnson on July 2, 1964, provided numerous protections to racial and ethnic minorities and persons of varied religious faiths.
Prior to the 1970s, disability was primarily a medical issue. Persons with disabilities were considered "sick" or "impaired," patients who required experts' instructions about how to "get better." "Disability" as a class did not share the same cohesive forces manifest with race and gender. In fact, persons with different disabilities were often in conflict over limited government resources. Segregation for persons with disability meant not only separation from mainstream society, but also isolation from each other.
A paradigm shift occurred with the "independent living movement." Infused with a "rights" mentality sparked by the civil rights, women's, and antiwar movements, advocates of independent living wanted to shed the medical model that cast them as passive recipients of professional care. The philosophy of independent living made the "problem of disability" not reside in the individual but in society. "Society" had to be "rehabilitated," by making the physical environment accessible and destroying the attitudes that rendered persons with disabilities as helpless victims in need of charity. The independence movement gained momentum predominantly through some 1960s college students who fought to gain more control over their own lives by improving campus accessibility. Independence was measured by an individual's ability to make his/her own decisions and the availability of the assistance necessaryfrom attendants to accessible housingto have such control. They advocated a consumer spirit that established the role of the consumer as the decision-maker and people with disabilities as the experts. They rejected the idea that even persons with severe disabilities should be isolated in custodial institutions and advocated community-based living instead.
The threat posed by President Ronald Reagan who wanted to roll back years of gains served to unite the disability community. The activities of the disability community in the 1980s were largely a defensive effort to sustain the gains of the 1970s. Reagan saw government as an "obstacle to personal achievement and opportunity." Persons in the disability community flooded the White House with over 40,000 letters in a nationwide, grassroots letter-writing campaign. By 1983 Reagan had to abandon his efforts. Historically, the disability community had been divided internally, in part because of conflicts over limited public funding. Now scores of organizations representing thousands of people with different disabilities joined together for a common cause for the first time. The cross-disability community was a political force to be reckoned with in Congress, in the voting booth, and in the media. Physical barrier removal benefited everyoneeven the able-bodied: e.g., bicyclists and stroller-users taking advantage of curb cuts and subway elevators.
The passage of the ADA was a refreshing example of how the American legislative process can work when it works well. ADA legislature was founded on policy, legal principle, personal networks, coalition-forming, and an increasingly active disability community. The Civil Rights Act of 1964 and the Rehabilitation Act of 1973 enabled the ADA to withstand Congressional scrutiny. In 1986 the National Council on the Handicapped (renamed the National Council on Disability in 1988) presented a breakthrough report entitled Toward Independence. An online history, Equality of Opportunity (1997), details the development of the ADA from this report (first as a draft bill, and then as a formal item of Congress in 1988), through the Senate and the House of Representatives, and finally to the desk of President George Bush in 1990 to become the law of the land. The Smithsonian National Museum of American History offers a virtual exhibit about The Disability Rights Movement.
Will the disabled of the world unite? Although disabled people in the developed world and the developing world share similar barriers, about 99% of disabled people in the developing countries are unemployedcompared to the approximate 61% unemployment among North America's disabled. The World Health Organization (WHO) estimates that 10% of the world's population has a disability and that 80% of the world's disabled live in the developing regions of Africa, Asia, Latin America and the Caribbean. They are in situations of double jeopardy-they are disabled and from the developing regionsand, if they are female, even triple discrimination.
The second-class status of women often make them more susceptible to disease. For marriage, society judges physical appearance before considering women's true selves, so, the more obvious the disability, the more likely the disabled woman will be thought of as asexual. She will be channeled into vocational activities like needlework, handicrafts, dressmaking, or carpet weaving, even when she has the potential to become a business woman, lawyer, administrator or computer programmer. Any opportunities for education go to disabled boys while girls are kept at home to do housework.
Special church or charity-run schools provide the education for the disabled in blind or deaf schools. In Asia, "handicap palaces," large residential institutions in imitation of western high-tech specialist facilities, are shown to foreign visitors as a manifestation of the "modernness" and compassion of a developing nation. Disability experts now advise developing nations to avoid the mistakes of the West by changing to community-based rehabilitation. Why is this not embraced? According to Mike Miles, Commissary for the Mental Health Centre, Mission Hospital Peshawar, Pakistan, "It is more newsworthy to report that a 10 million dollar handicap palace has been inaugurated by the President than that 10 thousand disabled children have begun attending normal schools at no cost other than change of attitude on the part of the teachers. Disabled persons are rarely consulted about plans for their own welfare, for to do so would imply their near-equality with the planners."
Segregation of any groupdespite the rationales that "people are better off with their own kind" or that "because they are different, they need to all be grouped together for services"indicates overall devaluation of that group by the larger culture (whether people are segregated by race, by culture, by religious belief, or by disability). Each person is an individual, with unique strengths, gifts, and, yes, needs. The major problem faced by people with disabilities is that their entire lives are defined in terms of their needsnot their strengths, not their gifts, not their capacitiesbut their needs. Within this context, people are seen as a list of deficits, as something broken that needs to be fixed, and not as individuals.
Disabled people are fighting to decrease their marginalization. Organizations in over 158 countries (over half of which are in the developing world) belong to a worldwide cross-disability network, Disabled Peoples' International (DPI). In 1980, 400 disabled people from 51 countries attended the first DPI Congress in Singapore. Their Constitution and Manifesto asserted the basic rights of disabled people as participants in society like everyone else and that disabled persons have the right to influence governments and decision-making processes through their own organizations. A governing body, called the World Council, was elected for DPI with 25 people, 5 representatives from each of 5 regions of the world. Once every 4 years, DPI holds a World Assembly, with all of the members. They met in the Bahamas in 1985, in Vancouver in 1992, in Sydney in 1992, and in Mexico City in 1998. Japan will host DPI in 2002.
Headquartered in Winnipeg, Canada, DPI has consultative status with the International Labor Organization (ILO), UNESCO, and has official observer status at the United Nations General Assembly. It aired human rights violations against disabled people at the United Nations Human Rights Commission. Disabled people are known to have "disappeared" in refugee camps. DPI wants justice, not charity. Most important, DPI proves that people with disabilities can represent themselves effectively at the international level. Disabled people speak for themselves worldwide with, in the words of DPI's motto, "A Voice of Our Own." In 1985, DPI resolved to increase the participation and representation of women to 50% at all levels of the organization in the coming years. Persons who are deaf and mentally handicapped must be represented more equally as well.
Another barrier that has to come down is the divide between "mental" and "physical" illnesses. The Global Burden of Disease study, commissioned by the WHO and the World Bank, indicates that 4 of the 10 leading causes of disability for persons age 5 and older are the mental disorders. Major depression is the leading cause of disability among developed nationsincluding the USAas well as manic-depressive illness, schizophrenia, and obsessive-compulsive disorder. One of the leading preventable causes of death in the world is suicide (related to depression).
In any one year, nearly 1 in 5 Americans suffers from schizophrenia, depression and bipolar disorder, Alzheimer’s disease, the mental and behavioral disorders suffered by children, and a range of other mental diseases, yet too often these illnesses are spoken of in whispers and shame. Despite unprecedented knowledge gained in just the past three decades about what goes wrong in the brain, mental illness is shrouded in fear, misunderstanding, and stigmaresulting in lost opportunities for individuals to seek treatment and improve or recover. Contemporary mental health research has mended the destructive split between “mental” and “physical” health. The brain is the integrator of thought, emotion, behavior, and health. Mental illnesses are just as real as, and resemble, other illnesses. In the online report, Mental Health: A Report of the Surgeon General, the Surgeon General of the United States, David Satcher, M.D., Ph.D., states: "Promoting mental health for all Americans...does not call for massive budgets; rather, it calls for the willingness of each of us to educate ourselves and others about mental health and mental illness, and thus to confront the attitudes, fear, and misunderstanding that remain as barriers before us."
Attitudinal change towards the disabled is in the interest of all of us. People with disabilities form one of the world's largest minorities. Unlike most minority groups, this one always has open membership
B i b l i o g r a p h y
Driedger, Diane. "Disabled Women Meet," Conquest, Newsmagazine of the Disabled Peoples' International North American/Caribbean Region 1 (Jan. 1989): 3.
Driedger, Diane, ed. Disabled People in International Development (Winnipeg, Canada: Coalition of Provincial Organizations of the Handicapped (COPOH), 1991.
Enns, Henry. "Disabled Refugees," Vox Nostra, international newsletter of Disabled Peoples' International 2 (1988).
Gannon, John A. Report to the President: Progress in Advancing the Status of People with Disabilities Around the World: The Work of the United States Delegation to the Thirty-third Session of the Commission for Social Development of the United Nations (Vienna, 1993).
Miles, Mike. "Why Asia Rejects Western Disability Advice," International Rehabilitation Review (1982).
Rajah, Zohra. "Thoughts On Women And Disability," Vox Nostra, international newsletter of Disabled Peoples' International 2 (1989).
Young, Jonathan M. Equality of Opportunity: The Making of the Americans with Disabilities Act (Washington, DC: National Council on Disability, 1997).
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