To commemorate the 30th anniversary of the Americans with Disabilities Act (ADA), the NY Association on Independent Living (NYAIL) and 41 other Independent Living Centers (ILCs) hosted a virtual event titled “The ADA: Then and Now” with many distinguished speakers on July 28, 2020. Denise Figueroa, Judith Heumann, James Weisman, and Clifton Perez have all been working in the disability rights movement for decades, and weighed in on what has changed and the areas that still need improvement.
It’s been 30 years since the ADA was passed. What’s changed? What hasn’t?
Leaders in disability awareness and rights
There were many people across the country collecting testimonies, protesting, educating others, and advocating for the ADA.
Judith Heumann, the co-founder of the Center for Independent Living in Berkeley, CA, realized the big issue in the 1970s and 80s was the lack of cross-disability advocacy, which is integral to ILC’s efforts. She has done international work with organizations advocating for people with disabilities and ILCs across the world.
James Weisman, the CEO of the United Spinal Association, worked on lawsuits against NYC’s transportation system to reeducate people on disability needs, rights, and advocacy.
Clifton Perez, who serves as the VP and Systems Advocate at the NICL, fought to ensure those with disabilities were provided the services they needed. It was only through ILC networks that people were able to pressure the national laws to be changed.
During the fight to sign the ADA into law, Denise Figueroa was on the board of the National Council on Independent Living (NICL), which held a national conference in Washington, D.C. In 1989 they marched to the White House in the pouring rain and were able to meet with a Congressional staffer about their concerns about disability justice.
Key Takeaways: The work for accessibility rights continues
Even though the ADA was passed 30 years ago, the built environment around us continues to be inaccessible to many people. It is important to get the government, people in the workplace, and allies to understand the needs of those with disabilities.
Accessibility is important to everyone. Curb cuts help mothers with baby strollers, elevators are important for travelers, and being able to work from home is necessary for those who have short- and long-term needs.
Listening to young people with disabilities is important to create a society where their needs are met. During the Civil Rights and Women’s Movements in the 1960s and 70s, the Independent Living Movement was also taking place. Independent Learning Centers were advocating for state funding and were able to pass the ADA into law. People with disabilities created a strong network of advocates to fight for fair treatment and accessibility laws.
Anticipated effects of COVID-19 on marginalized groups
The COVID-19 virus continues to shine a light on the institutional biases and horrors that have historically impacted marginalized groups and were not as visible to the general public. Perez elaborated on this, explaining how those in power often do not understand that it is not just about strengthening and enhancing institutions such as nursing homes, but rather about giving people choices for community care and support.
The ADA serves as a guideline for people to understand their rights and how their workplace and living situations must be accessible, and these guidelines will apply to more people as the COVID pandemic continues. For example, if you have an autoimmune disorder or are married to someone who has COVID, extended leave without pay or working from home are options that you and your employer need to understand.
Heumann believes that not many people know what the ADA is or what it does. Training will be necessary for disabled individuals, their families, corporations, and government workers to understand what supports need to be put in place for those affected by COVID.
At the moment, it is unclear how many people have COVID, the number of people who are affected, or how long the impact of the virus will last. As someone with polio, Heumann understands how varied timelines and symptoms can be for a specific disease. Independent Living Centers need to understand community needs first, and then create guides and resources to help their populations make informed choices.
Figueroa elaborated on this point, explaining that nobody really knows the impact or after-effects of COVID-19. It will have a big impact on folks’ ability to go back to work, possibly needing services they’ve never needed before and not knowing their rights under the ADA. People with disabilities have a significantly higher unemployment rate than the average population, due to lack of access, support, and discrimination. Now, with more people unemployed and an unknown number of people infected, many are struggling to take the right precautions.
Even going to the store now is harder for those with mobility needs, Weisman said. For instance, some restaurants are blocking disabled parking and sidewalks with outdoor tables. He knows they’re doing things in good faith to try to protect people, but it’s discriminating against those with disabilities. Overall, it is important to have people with disabilities leading and included in discussions about how to move forward.
How can we transform our state agency infrastructure to understand cross-disability?
According to Figueroa, having coordination across state and public disability services is vital. Often siloed service happens, where someone is assigned one agency to help them. This ignores the need for an integrated approach to help those who are, for example, elderly and have a developmental disability. Systems are needed to help people get accessible housing and community-based supports, according to Weisman.
How is the BLM Movement Affecting Today’s Advocacy?
The United Spinal Association has made it a priority to reach out to underserved and geographically isolated communities and to make sure the Board of Directors is reflective of the population it serves. NICL has also been working towards racial justice, through holding anti-racist seminar discussions, trainings for the board and ILCs, and condemning police violence against people of color.
Heumann has come to realize that many people don’t see the disability rights movement on the same level as the BLM Movement, but they are very much tied together. The BLM Movement is inherently part of disability advocacy and understanding how these communities work together is vital for the future. As Heuman said, we need “to get away from asking ‘What are you doing?’ ‘What are we doing?’” and instead focus on how we can help raise issues and solutions within each community to work together. There is always room to grow and be better advocates in all areas.