Kennedy, disability advocates paint different realities as ADA turns 35

Stirring speeches filled the tall, fluorescent room on Monday morning as members of the disability community and federal officials celebrated the 35th anniversary of the passage of the Americans with Disabilities Act. They spoke at length about how the landmark law birthed critical protections and technologies that have helped disabled people flourish, but many communities still face significant hardships.

During the event at the federal health department headquarters in Washington, D.C., health secretary Robert F. Kennedy, Jr. spoke for eight minutes, mostly about his relatives. A quick nod to his uncle and former Sen. Ted Kennedy (D-Mass.) for playing a major role in getting the ADA passed led to a discussion of his aunt, Rosemary, who had an intellectual disability and was institutionalized much of her life. Kennedy did not mention the ADA again or discuss how it’s affected people with disabilities since President George H. W. Bush signed the bill into law in 1990. His tribute drew mostly from the past.

Many people in the disability community would like him to discuss the present and future. They’re organizing 60-hour rallies and marches through Boston to protest cuts to Medicaid in the recent Republican tax law, which could shorten or end the long-term care they receive. They’re speaking out against Kennedy’s false remarks about the link between autism and vaccines and his instructions to the National Institutes of Health to fund research that investigates the condition’s origins. They’re holding vigils outside the NIH and pointing to a reduction-in-force policy that cut the Administration for Community Living’s workforce in half, according to a document reviewed by STAT. 

“In today’s world, we are seeing many important programs, services and research related to disability being cut or rolled back, [especially] the people and organizations who help to enforce, such as protection and advocacy organizations, and educate about the ADA,” said Anjali Forber-Pratt, the director of research at the American Association on Health & Disability.

The ADA established legal protections against discrimination and the exclusion of people with disabilities in the United States. While Kennedy’s family laid the groundwork for this and other federal disability policies with their actions in the 20th century, some advocacy organizations worry that his tenure and policies may harm people with disabilities. When the Administration for Community Living (ACL) announced that the secretary would be speaking at the official celebration of the ADA’s 35th anniversary, some people declined their event invites.

As chief of advocacy and campaigns for Caring Across Generations, Nicole Jorwic helped organize the 60-hour rally over the weekend. She’s spending Monday celebrating the birthday of her autistic brother, who, at 36, is just one year older than the ADA. “I have spent the majority of my life fighting against the misinformation that is now seated in the HHS office. I couldn’t go in good conscience and sit in that room,” said Jorwic.

While Kennedy’s presence kept some from attending, others were adamant about going even if they disapprove of the secretary’s policies. They argued that it was important to highlight the gains that this landmark law has brought to the community. 

Whit Downing was not alive to see the ADA signed into law, but she believes that these celebrations offer an opportunity for the disability community to see how much they’ve achieved, while also recognizing that there are more barriers to be torn down. The autistic woman emphasized that it’s important to make sure people with disabilities have a seat at the table.

“It’s critical that people with lived experience, especially those of us with intellectual and developmental disabilities, are in the room, shaping the conversation. I want us seen, heard, and included on the national level,” said Downing, who is the vice president of policy and programming for the Kansas Council on Developmental Disabilities.

Attending the celebration was important for longtime advocate Jill Jacobs, the executive director of the National Association of Councils on Developmental Disabilities. Drawing upon her time as former ACL commissioner, she says that working across the aisle is vital for people with disabilities who need reliable care and services, regardless of their political affiliation. 

“We’ve got three and a half years ahead of us. At some point, we have to find ways to talk,” said Jacobs. “If we don’t offer opportunities for the secretary, how can he know any better?”

Jordyn Zimmerman echoed Jacobs’ sentiment, noting that it’s hard to influence federal policies if the disability community doesn’t share the tools and resources that empower them. The non-speaking autistic woman lacked reliable means for communicating for the first 18 years of her life. Eventually, after her mother contacted a local protection and advocacy watchdog — outlined in the ADA — Zimmerman got an iPad with an augmentative and alternative communication application to help facilitate her conversations. She always had the capacity, but now she can advocate for herself and others as the manager of education products and program development at the Center for Enriched Living near Chicago.

“The Americans with Disabilities Act certainly makes my life and the lives of so many others possible — not because I earned it, not because I fit in easily, but because I am a person,” said Zimmerman.

STAT’s coverage of disability issues is supported by grants from Robert Wood Johnson Foundation and The Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.