Twenty-five years ago, on July 26, 1990, 2,000 people with disabilities gathered on the South Lawn of the White House for the Americans with Disabilities Act (ADA) signing ceremony. The jubilant crowd heard President George H. W. Bush proclaim the often quoted words, “I now lift my pen to sign this Americans with Disabilities Act and say: Let the shameful wall of exclusion finally come tumbling down.”
At the time of the ADA signing, I had just given birth to my daughter, Maddy. While I was not able to be on the South Lawn with so many of my friends and colleagues, I celebrated the historic event in Chicago, where Mayor Richard M. Daley, who committed to making Chicago the most accessible city in the country, hosted a local event. On that day at the White House, in Chicago and around the country, disability advocates felt as if, finally, we had done it. We passed a landmark civil rights law that would allow people with disabilities to participate in their communities and pursue employment opportunities on a level playing field. We did what so many told us couldn’t be done.
Though we accomplished a monumental feat, nothing about passage of the law was easy. There were barriers at every step. Despite the fact that there were no curb cuts, there was no access to bathrooms, there was no interstate TTY system of communication for people who were Deaf and hard of hearing, there was no emergency captioning and employers were free to discriminate based upon disability, Congress did not believe there was a history of discrimination. Without a history of discrimination, there would be no law.
Mobilizing the disability community, Justin Dart, Jr., vice chair of the National Council on Disability and the Martin Luther King of the disability rights movement, issued a call to action. Dart urged us to tell the world what discrimination looks like. Dart and his wife Yoshiko traveled around all 50 states collecting individual stories of discrimination. The community answered the call, giving Justin three large trash bags worth of testimonials, which he delivered during his testimony to Congress. As former Congressman Tony Coehlo said, in order to establish a record of discrimination, “We had to share the scar tissue of our lives, so Congress would understand how rampant discrimination was across our lives.”
In many ways, the law has changed the world. My daughter, just a few days old at the time Bush signed the law, has never known a world without the accessibility features we all now take for granted. Millions of young people with and without disabilities have grown up in a world without the physical barriers that separate us. Today, people with and without disabilities are riding the same buses, shopping at the same retail stores, drawing money from the same ATM machines and watching movies in the same theaters, making the world a better place for everyone.
The law has had enormous impact, but we can never take for granted the success we have achieved. Budget cuts, backlash and stigma all threaten to dismantle the rights everyone has come to expect. In 1999 and the early 2000s, a series of U.S. Supreme Court decisions removed a range of people with disabilities from ADA coverage, people that were included under the original intent of the law. All of these things remind us that the access, accommodations and opportunity we fought for could easily be dismantled.
Similarly, while there has been success, the promise of the Americans with Disabilities Act has not been realized in many ways. Just as millions of young people have never known a world without screen readers and bus lifts, they also have never known a world without catastrophically high unemployment rates for people with disabilities (in 2013, less than 20 percent of the working age disable population was employed), without significant achievement gaps between disabled and non-disabled students and without unnecessary institutionalization of people with disabilities.
In 1990, many people played a pivotal role to get the law passed. Champions like Pat Wright, Congressman Tony Coehlo, Senator Tom Harkin, Senator Kennedy, Congressman Owens, Sylvia Walker, Michael Winter, Judy Heumann. Frank Bowe, Elizabeth Boggs, Lex Friedan, Bob Bergdorf, Chai Feldblum, Max Starkloff, Judi Chamberlin, Bonnie O’Day and many more. This year, as we celebrate the 25th anniversary of the Americans with Disabilities Act, we need new champions who will lead the way toward the unfinished promise of the Americans with Disabilities Act. Today’s children need to grow up in a world where people with disabilities have the opportunity to find work and to be successful at work, people with disabilities have the option to live with quality supports in affordable, accessible homes in integrated communities and people with psycho-social disabilities live in a world free of stigma.
The anniversary gives us a platform to bring varied segments of our community together for a common goal. In Chicago, under the banner of ADA 25 Chicago, more than 160 organizations from the private, public and non-profit sector have committed to leveraging this 25th anniversary year to create more opportunities and make systemic change in education, employment, technology and community inclusion. With commitment initiatives like this in Chicago and around the country, I am confident that the full promise of the Americans with Disabilities Act will happen. Today, there is the expectation that students with disabilities will learn alongside their non-disabled peers, commuters with disabilities will ride the bus with non-disabled passengers and public spaces will be built to be accessible by all using Universal Design.
Around the world, the Americans with Disabilities Act is the model other countries follow when building a system of human rights protections for people with disabilities. The implementation, enforcement and model of the law has launched a paradigm shift with momentum that will not be reversed. This year, and in years to come, we will ride that momentum, filling in the gaps that still exist, fighting against the barriers that remain, ensuring that the promise of the law applies to all people with disabilities and extends to all sectors of society.
For more than 30 years, Marca Bristo and Access Living, Chicago’s center for independent living, have helped craft local, national and international reforms to protect the rights of people with disabilities and equip them with tools to lead independent, satisfying lifestyles. A pioneer of Chicago’s disability rights movement and a former patient of the Rehabilitation Institute of Chicago, Bristo helped launch Access Living, one of the country’s first ten centers for independent living. Since 1980, Access Living has provided peer services and advocacy to over 40,000 people with disabilities, and it has won systemic improvements in housing public schools, public transportation, public access and long-term care.
Beyond Access Living, Bristo is an international advocate for the rights of disabled individuals. During the 1980s, as a member of the Congressionally-appointed United States Task Force on the Rights and Empowerment of Americans with Disabilities, she helped draft and win passage of the Americans with Disabilities Act. In 1994, President Clinton appointed Bristo to head the National Council on Disability, an independent federal agency that provides policy guidance to the U.S. President and Congress. Bristo was the first person with a disability to hold this position. Bristo is also former President of the United States International Council on Disabilities, a federation of U.S. disability organizations committed to fostering Disability Awareness inclusion and rights overseas.
For her dedication and perseverance, Bristo received the Distinguished Service Award of the President of the United States and the Americans with Disabilities Act Award for her role in the creation and passage of the law. She was named a Henry B. Betts Laureate for significantly improving the quality of life for people with disabilities and earned the 1993 United Way of Chicago Executive of the Year Award. Ms. Bristo also was named by Crain’s Chicago Business as one of Chicago’s 100 Most Influential Women. The Chicago Sun-Times included Bristo on its list of 100 Most Powerful Women, and was on the list of Today’s Chicago Woman 100 Women Making a Difference. Other awards include: IMPACT Award Recipient, Chicago Foundation for Women, 2010; BPI 40 Who Have Made a Difference, 2009; and Chicagoan of the Year, Chicago Magazine, 2007.
Bristo is a Trustee of Rush University, a Life Member of the Rehabilitation Institute of Chicago, a member of The Chicago Network and a Leadership Greater Chicago Alumni. She earned a B.A. from Beloit College and a B.S. in Nursing from Rush University.