Forty-Six Words That Changed Disability History
July 24, 2015
This weekend, celebrations marking the twenty-fifth anniversary of the Americans with Disabilities Act will be in full swing. Members of our country’s largest minority will be at pride festivals honoring the history of fighting for the overdue rights that made the world more accessible to them. Published for the ADA anniversary, Enabling Acts by University of Illinois at Chicago professor Lennard J. Davis—whose mother and father are both deaf—traces the nearly twenty years of activism and legislation that gave rise to the ADA. They were, indeed, an intense twenty years. Here we present the opening of his book, and the forty-six words that changed history for those with disabilities.
Trying to find a moment when the ADA began is like trying to find the source of the Nile or the Amazon. So many tributaries flow into the making of the ADA that you cannot say if any single stream is the true source. But you can say that at some point, like a mighty river, the movement toward the ADA surged powerfully and in a sense became inevitable.
But as inevitable as the act now seems in retrospect, Congress might very well have failed to act sufficiently to create a meaningful bill rather than a document simply expressing general platitudes. Certainly, an ADA could not pass Congress today. In fact, ratification of the UN Convention on the Rights of Persons with Disabilities was defeated in the Senate in 2012. Bob Dole, who was instrumental in getting the ADA through Congress, arrived on the Senate floor in 2013 to argue emotionally that the convention should be ratified. At eighty-nine, he’d been in and out of Walter Reed Army Medical Center for two years and appeared drawn and fragile. Despite his dramatic appearance, the convention ratification was defeated. Dole, Harkin, and Hoyer all have asserted that if the ADA came up for a vote in 2015, it would be defeated.
The ADA is an excellent example of a bipartisanship no longer extant but made possible when a Republican president, George H. W. Bush, worked together with a Democratic House and Senate. The cooperation of Republicans Dole and Hatch together with Democrats Kennedy and Harkin in the Senate, along with Republican Steve Bartlett and Democrat Steny Hoyer in the House, was essential. All these political leaders believed that disability was an issue both parties could agree on. In fact Justin Dart, a conservative Republican, said, “The Americans with Disabilities Act is an authentic issue for conservatives.” And that perennial conservative, bespectacled George Will, whose eldest son has Down syndrome, supportively called the ADA “that last great inclusion in American life.” Today, it is almost impossible to imagine such crossing of party lines for the common good. And the day-to-day workings of the principals and their staffs in passing the ADA should be an object lesson to those presently in the halls of power.
The 1960s legislation that guaranteed rights and gave benefits to poor people, Vietnam veterans, people of color, and, among others, the disabled, began to open the door to the concept that being disabled was not simply a medical fact or a social stigma. Disability, like ethnicity, was an identity, and as such, it needed to be protected from human rights abuses and civil rights abuses.
We use the term civil rights a lot, but what exactly are these rights, and why weren’t they just inherently part of citizenship in a country with a bill of rights? Civil rights in general protect citizens’ freedom from governmental or other intrusion into their lives and guarantee that citizens can participate fully in civil and political life. If those rights are applied unequally to citizens or are on paper only but not robustly part of citizens’ lives, then specific legislation detailing how those rights should be protected and enforced is enacted.
Looking back, you can see the slow accumulation of civil rights legislation that produced precedents for the ADA. Acts passed by Congress piecemeal were deposited on the American shore like pebbles and sediment that would eventually transform the bedrock of the laws of the land. You could take the Civil Rights Act of 1964 as it combined with the establishment of Medicare and Medicaid in 1965. Add to that the Fair Housing Act that was passed in 1968 and prohibited discrimination in the sale or rental of property. The same year, the Architecture Barriers Act announced that all federal buildings or buildings built with federal funds had to be accessible. Then, in 1972, Title IX of the Education Amendments Act moved to add protections against discrimination based on gender in the realm of education. So in a mere eight years, a trend toward expanding protections for people based on their civil rights had developed.
Of course, it was a particular era in American politics when an expansion of the role of government provided help and services to a wide group of Americans. Lyndon Johnson’s Great Society aimed to eliminate or reduce poverty and spread the postwar wealth to the general population.
In 1972, Hubert Humphrey, one of the architects of the 1964 Civil Rights Act, made a bold move to amend the act to include disability. On the Senate floor, Humphrey said: “No longer dare we live with the hypocrisy that the promise of America should have one major exception: Millions of children, youth, and adults with mental or physical handicaps. We must now firmly establish their right to share that promise, so well described by Thomas Wolfe [the novelist, in his You Can’t Go Home Again]: ‘To every man his chance; to every man, regardless of his birth, his shining golden opportunity. . . . [This] is the promise of America.’” As the grandfather of a child with Down syndrome, Humphrey was keenly aware of the issues facing people with disabilities. But the idea had absolutely no traction. Despite Humphrey’s efforts, no legislation was passed. It was all right to take a piecemeal approach to protecting various aspects of disability, but when the idea to simply include disability as an identity along with race was proposed, there was no strong force behind it.
Interestingly, many politicians, including African American politicians and leaders, were wary of “diluting” the signature civil rights established in 1964 by letting in other categories like disability. They also feared bringing the landmark legislation back on the floor. Once there, the legislation might be changed in nonproductive ways. In that way, the rights of people with disabilities were seen as a problem rather than a solution.
Party leadership proposed to Humphrey that his language from the failed attempt be added instead to the Rehabilitation Act in 1972. This act was itself designed to update the original 1920 act that provided services to World War I veterans who were disabled during the Great War. Now, as disabled soldiers returned from the apocalypse of the Vietnam War, rehabilitation became a national issue again. Although Congress passed the new act after much wrangling, President Richard Nixon twice vetoed it. He did not like the provision of federal funds to the states to pay for independent living for people with severe disabilities. Independent-living centers at this time were in need of funds, all of which were going to vocational rehabilitation centers. These rehab centers focused on a medical model of disability rather than a more humane viewpoint that involved the lived experience of people who were so much more than patients. Independent-living centers were run by people with disabilities themselves and stressed a noninstitutional model—people living at home with personal assistants and working at jobs in a way equal to able-bodied people. After the first veto, Congress proposed an ameliorating change in the bill, but Nixon vetoed it again. Finally, the bill was passed in 1973, this time without the guarantee of federal funds for independent living (although those were restored in a 1978 amendment known as the Title VII program).
On September 26, 1973, President Nixon signed into law the Rehabilitation Act. The spirit of the act was to shift federal assistance away from mere vocational rehabilitation and toward a more encompassing idea of improving not just job training but the overall lives of people with disabilities. Yet its lasting impact inhered in just four lines of the voluminous act. Like a magic phrase inserted into an incantation, those four lines changed the history of disability rights. In Section 504, the very last section of the last major category, a staffer inserted the following words trying to tie the act to previous civil rights legislation:
No otherwise qualified handicapped individual in the United States, as defined in Section 7(6), shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.
In all the arguing on the Senate and the House floors, all the contention and rewriting of this bill, and all of Nixon’s objections to the bill as a Great Society remnant, barely anyone noticed or commented on this squib. Yet Section 504 became the first brick in the groundwork laid for the ADA. It was the first federal language that clearly and uncompromisingly guaranteed the civil rights of people with disabilities; it was modeled on Title VI of the Civil Rights Act and Title IX of the Education Amendments Act—both of which never mentioned people with disabilities. Section 504 was only forty-four words, yet its tweet-like length belied the volumes of language it would generate in the coming years.
About the Author
An award-winning author of eleven books, including Enabling Acts and My Sense of Silence, Lennard J. Davis is Distinguished Professor of Liberal Arts in the departments of Disability Studies and English at the University of Illinois at Chicago. He has written for the New York Times, Chicago Tribune, Nation, and Chronicle of Higher Education, among other publications. He lives in New York City. Follow him on Twitter at @lendavis.