The Disability Rights Movement: From Charity to Confrontation by Doris Zames Fleischer and Frieda Zames

In the "Preface" to our book, The Disability Rights Movement...from Charity to Confrontation we point out that when the prejudices that have been prominent in American life are discussed, disability discrimination is rarely included. Yet "misrepresented as a health, economic, or safety issue," discrimination against people with disabilities, the largest minority in the United States (54 million and growing), continues to have devastating personal and social consequences. This failure to recognize the prejudice to which people with disabilities are exposed may stem from a collective fear, for "everyone is subject to illness, accident, the declining powers of advanced age-all forms of human vulnerability."

Most people deal with disability in their lives, first with their parents, then with themselves, and that does not take into account other family members and friends. The general public is unaware of the far greater number of people with invisible disabilities (e.g. psychiatric and learning disorders, heart disease, diabetes and cancer) than of those with visible ones (e.g. motor impairments, blindness, and deafness). What may be most surprising is that improved technology results in not fewer-but more-people with disabilities as people live longer, as well as survive and often flourish after what formerly would have been calamitous or even fatal disabilities. With medical and pharmaceutical breakthroughs and computer technology, however, people with disabilities are contributing members of society whose potential is too frequently thwarted by socially-accepted, and until recently legally sanctioned, discrimination.

Such discrimination dates back to the Thirteen Colonies where people with disabilities frequently were not only denied the right to social participation but, even in their own families, hidden, disowned, or allowed to die because they were not provided with the life-supports they required. The story of noted early twentieth century social critic Randolph Bourne-isolated as an adolescent and unemployed as an adult-reveals this legacy of bias. Bourne, who had a very visible disability with no significant functional limitations, was described by renowned poet Amy Lowell: "His writing shows that he is a cripple. Deformed body, deformed mind." Bourne could have been refused entrance into a public setting because of what was deemed his "unsightliness," but in Chicago he could have been arrested as a result of a 1911 ordinance (repealed in 1974) referred to as the "Chicago Ugly Law": "No person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, shall therein or thereon expose himself to public view."

Still Bourne was more fortunate than most people with disabilities in his time, for many never had the opportunity to get an education as, for example, the boy with cerebral palsy who was expelled from public school in Wisconsin in 1919. The reason was that despite his academic ability, his teachers and classmates found him "depressing and nauseating." (Even as late as the 1960s, one in eight children with disabilities received no education whatsoever, and over half received an inappropriate education.) Eugenicists and professionals who dealt with people with disabilities proposed "segregation and sterilization of deaf people, blind people, people with developmental disabilities, even people like Bourne who had tuberculosis."

In fact, by the First World War sixteen states had adopted sterilization statutes for people with disabilities, and some eugenicists even supported mercy killing of those with epilepsy and cognitive disabilities. Fritz Lenz, a German physician-geneticist, in 1923 criticized Germany for having "nothing to match the eugenics research institutions in England and the United States." In his 1932 study of the sterilization movement in America, J.P. Landman referred to "overzealous and overardant eugenicists" who consider those with disabilities as threats to the "quality of the ensuing generations." The 1930s euthanasia movement in England and the United States "inspired execution by Nazi doctors of two-hundred thousand people judged deficient because of their physical and mental impairment."

Echoes of Nazi rhetoric were apparent in the statements of the 0well-publicized former physician Jack Kevorkian, who promoted and assisted, according to his own claim, as many as one-hundred and thirty suicides of people with disabilities. Kevorkian declared, "The voluntary self-elimination of individual mortally-diseased or crippled lives taken collectively can only enhance the preservation of public health and welfare." Fearing being perceived as costly and unproductive expendables, people with disabilities feel like the canaries in the mine in a social climate in which the "right-to-die" is becoming the duty-to-die." Even Derek Humphry and Mary Clement, prominent campaigners for the euthanasia movement, have stated that "in the final analysis, economics, not the quest for broadened civil liberties or increased autonomy, will drive assisted-suicide to the plateau of accepted practice." With a constant threat of scarce resources resulting in the rationing of health care services, with disability a possibility for anyone at any time, Humphry and Clement's assertion is a harbinger of a frightening dystopia.

The struggle for civil rights by people with disabilities beginning in the 1970s "took place with less visibility than, but in the same venues as, the battles fought by African-Americans-the streets and the courts." The symbolic significance of buses for both African Americans and people with disabilities should be noted. The requirement in the late 1950s that Rosa Parks sit in the back of the bus was emblematic of her second-class legal status. The inability of many people with disabilities to even board buses until the late 1970s and 1980s (when they demanded lift-equipped buses) was representative of their de facto segregation. The 1977 signing of the regulations for Section 504 of the Rehabilitation Act of 1973 (the first Federal civil rights law for people with disabilities) and the success of disability activists in many confrontations emboldened them to work toward full participation of the disability population in society. These victories, realizing the promise of the Section 504 regulations, were expressions of the emerging disability rights activism that would result in the 1990 Americans with Disabilities Act in the United States and the irrepressible demand for justice and inclusion by people with disabilities throughout the world.

Reprinted with permission from The Harvard Independent (February 14, 2002)