Last updated: October 23, 2024
Article
Don’t Tread on the ADA: A Rally and March to the US Supreme Court in 1999
By Ellie Kaplan/NPS Park History Program
On May 12, 1999, some four thousand people rallied in Upper Senate Park, near the United States Capitol, in Washington DC. Their signs and chants proclaimed, “Don’t Tread on the ADA” and “Our homes, not nursing homes.” After a series of speeches, attendees marched to the Supreme Court. They were there to show support for the plaintiffs in a case under review, Olmstead v. L.C. and E.W. The rally protested the on-going segregation of many disabled Americans. It also called for better enforcement of the Americans with Disabilities Act (ADA).
National Register of Historic Places. NRHP 97000829
The Growth of Institutions
Starting in the nineteenth century, government and private institutions segregated people with disabilities. Many schools for deaf, blind, and developmentally disabled students were also founded in the 1800s. Examples include the Agnews Insane Asylum in California, the Institution for Feeble Minded Youth Farm in Nebraska, and the Montana State Training School. Reformers originally envisioned institutions as temporary homes to help people with disabilities. But by the 20th century, many residents were kept in these facilities for life. The number and size of institutions boomed in the decades after World War II. Federal dollars funded large new state schools and hospitals. Abuse and mistreatment ran rampant in these overcrowded facilities. Medical experiments, inadequate food and clothing, and neglect were not uncommon. Institutions also relied on the unpaid work of their residents in order to function.
George Bush Presidential Library and Museum/NARA
The Integration Mandate
But the expansion of institutions encountered resistance. Beginning in the late 1950s, people with disabilities and their allies rallied against the abuses endured in institutions. They knew that, with enough support, disabled people could flourish in their communities. Many state governments argued it saved money to provide centralized care. However, activists showed that in most cases it was less expensive to deliver community-based care. More importantly, most people with disabilities preferred to live outside an institution. They said community living gave them a higher quality of life. Community services can take on many forms depending on the needs of the individual. For example:
- Personal care attendants assist with daily tasks like personal hygiene and eating
- Home nurses provide routine medical care
- Job coaches help employees learn and keep a job
These services can empower someone to live alone, with their family or friends, or in a group home with other disabled housemates and a caregiver.
The fight for people’s right to move from a hospital setting to the community is called the deinstitutionalization movement. This movement won a huge victory with the passage of the Americans with Disabilities Act in 1990. The law aimed to protect disabled Americans against discrimination. It targeted employment, transportation, public accommodations, and communication. The ADA also endorsed an “integration mandate.” This mandate addressed the historic and on-going segregation of disabled Americans. The ADA required states to offer community-based services in addition to those services in institutions. However, the 1999 Supreme Court case Olmstead v. L.C. and E.W threatened this hard-earned progress.
American Disabled for Attendant Programs Today (ADAPT). 1999
The Court Case
The Olmstead case began when two women in Georgia tried to leave a state-run regional hospital. Lois Curtis (L.C.) and Elaine Wilson (E.W.) had intellectual and psychiatric disabilities. The women said they felt trapped at the institution and wanted to leave. Further, doctors said they each would be able to live in the community with support. Yet, Georgia kept them at the state hospital for years. After connecting with the Atlanta Legal Aid Society, Curtis and Wilson filed and won their lawsuit to leave the hospital. The lower courts upheld the integration mandate of the ADA. The legal battle did not end there. Thomas Olmstead, Georgia’s Commissioner of Human Services, appealed the decision to the US Supreme Court. The Justices agreed to hear the case.
As the first Supreme Court case about the ADA’s integration mandate, the stakes felt high for disabled Americans. At its core was a question of who got to decide where a disabled person lives: the state or the individual? The Supreme Court’s decision became known as Judgment Day as activists waited to see whether the heart of the ADA would remain intact.
"We’ll do whatever it takes to gain and keep our freedom and our rights,” one former nursing home resident declared in a press release. “No state is going to tell me I have to live in a nursing home. I have as much right as anyone to live in the community.”
American Disabled for Attendant Programs Today (ADAPT). March 19, 1999.
Activist Mobilization
When the Supreme Court agreed to hear the case in December 1998, the prominent disability organization ADAPT (American Disabled for Attendant Programs Today) jumped into action. They pursued the following strategies:
- spread information about the case across their national network,
- pressured their governors and state attorneys general to withdraw support from Georgia,
- wrote postcards to elected officials,
- signed petitions,
- promoted their message to the public, and
- protested at government buildings (for example on January 15, 1999, they demonstrated at a dozen governors’ offices).
Originally 26 states submitted amicus briefs in support of Georgia’s position. This meant that these other states agreed with Georgia’s legal arguments against Curtis and Wilson’s bid for independent living. However, disability rights activists successfully convinced 19 states to withdraw their support by late spring 1999. According to ADAPT, such a drastic reversal in official support had never been seen before in a Supreme Court case.
Activists showed the Supreme Court that they would closely follow this case. On April 20, around one hundred people held a candlelight vigil and press conference with Curtis and Wilson. They spent the night on the sidewalk outside the Supreme Court Building. In the morning, their supporters were first in line to attend the start of the oral arguments. During the week of May 10, the Supreme Court discussed Olmstead. Meanwhile, activists from across the US gathered in Washington DC. They kept pressure on officials to support integration. So many disabled activists rode the train from New York City that Amtrak had to remove seats to accommodate sixty wheelchair users. Hundreds of ADAPT activists took over the offices of the National Governors Association and the US Conference of Mayors. Although the police arrested eighty-five people, the activists remained committed. The following day, they surrounded the Department of Housing and Urban Development (HUD). Accessible housing was one of the barriers to living independently for people with disabilities. Activists wanted HUD to better enforce the department’s own anti-discrimination regulations. In response to the demonstration, the HUD Deputy Secretary agreed to improve enforcement.
American Disabled for Attendant Programs Today (ADAPT). May 12, 1999
Don’t Tread on the ADA Rally
To further pressure the Supreme Court and publicize their cause, activists organized a large rally on May 12. Over one hundred organizations and an estimated four thousand participants contributed to the Don’t Tread on the ADA rally. It was believed to be the largest disability rights rally to date. Chants and signs declared:
“My control, not state control”
“Integration, not segregation”
“Separate will never be equal”
The event united people from diverse backgrounds. Individuals with physical, developmental, and psychiatric disabilities joined forces to fight the perceived threat to the ADA. According to Tom Olin, a longtime photographer of the disability rights movement, “the objective was to tell the Supreme Court that we were listening to them. We were out there.”
Several activists spoke and reminded attendees of the rights they had already won. They also talked about the work that remained. Among the speakers were key leaders in the creation of the ADA. They included activist Justin Dart, former Attorney General Dick Thornburgh, and Senator Tom Harkin of Iowa. Senator Harkin’s speech acknowledged the deeply personal nature of the struggle over independent living and the need to work together to build on past legislative successes:
“I know for many of you here today, this is not a matter of developing policy – it is a literal struggle for your lives, and the lives of your friends and colleagues. I know many of you have lived in institutions yourselves. You know the frustration, you know the indignity, you know the anger that comes from not living free lives in the community. Let me now say this to each one of you: Your struggle for freedom has not been in vain. Your fight to gain the attention of those of us here in Washington is working.”
After the speeches, demonstrators marched to the Supreme Court Building. At the front of the line was “a mock funeral procession for freedom, including pallbearers and a casket.” Marchers chanted their demands for equal rights and sang “We Shall Overcome.” The demonstration ended with a moment of silence for all those who had died in an institution.
U.S. Department of Labor Blog
Court Decision and Aftermath
On June 22, 1999, the Supreme Court issued its decision: undue institutionalization is discrimination. Grassroots pressure, from lobbying politicians to the DC actions, contributed to this huge victory. Activists declared it a win for personal choice and desegregation. The decision remains a cornerstone of disability rights to this day.
Disability activists’ battle against institutionalization did not end with the Olmstead decision. Instead, the case gave them another tool to fight with. Activists have pointed out that government programs, like Medicaid, continue to favor institutions over community programs. Especially during economically difficult times, community services are often cut first. Lobbying efforts and direct actions continue, in hopes of securing more funding and services. Survivors of institutions have shared about the personal effects of the court case through campaigns like “I am Olmstead. "As disabled people keep fighting to live where they choose, activist Nadina LaSpina’s words continue to ring true: Olmstead "proves that when we are united, we are powerful and we can make our voices heard."
This article was written by Ellie Kaplan, MA, National Council for Preservation Education Intern, with the National Park Service Park History Program. 2024.