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Access Living founder Marca Bristo, a leading voice for disability rights, dies at 66

Former President Bill Clinton called her “a courageous, visionary leader who dedicated more than 40 years of her life to breaking down barriers for people with disabilities.”

Marca Bristo
Marca Bristo
Access Living photo

Marca Bristo, who rose to become one of the world’s most influential advocates for the rights of disabled people through her Chicago group Access Living, died Sunday morning at age 66.

Bristo grew up on a farm in New York and studied to become a registered nurse in Chicago before a diving accident at age 23 left her paralyzed from the chest down, according to the group.

That set her on a path to activism, as she founded Access Living in 1980 and quickly became a leading international voice against civil rights violations against the disabled.

Bristo led protests that famously blocked CTA buses in 1984, and she filed the lawsuit that forced city officials to make buses accessible with wheelchair lifts.

She helped author landmark legislation in the Americans with Disabilities Act and was appointed by former President Bill Clinton in 1994 to chair the National Council on Disability, a post she held until 2002.

News of Bristo’s death following a two-year battle with cancer drew an outpouring of condolences from the top political ranks, including Clinton.

“Marca Bristo was a courageous, visionary leader who dedicated more than 40 years of her life to breaking down barriers for people with disabilities,” Clinton said in a statement. “From her pioneering advocacy with Access Living, to her role in drafting the Americans with Disabilities Act, to her outstanding service as Chair of the National Council on Disability during my Presidency, Marca helped give millions of Americans the opportunities to participate in all aspects of our nation’s life. She touched hearts, opened minds, and changed America forever. We should all give thanks for her life, service, and example.”

Senator Tammy Duckworth called Bristo a friend and counselor, recalling how Bristo reached out after Duckworth lost her legs to combat wounds in Iraq.

“Without Marca’s work over the last 30 years, the Americans with Disabilities Act would not be in existence and I would not be a U.S. Senator,” Duckworth said. “Because she crawled up the steps of the United States Capitol to pass the ADA, I get to roll through its corridors to cast my votes in the U.S. Senate.”

Gov. J.B. Pritzker said: “Marca Bristo leaves an incredible legacy of making the world most just and accessible for everyone in her community. Her work will live on with the countless friends and colleagues she inspired, including me.”

Rep. Jan Schakowsky described Bristo as “an unparalleled fighter for the rights of people with disabilities.

“Marca will go down in history as one of the most influential leaders of the disability rights and independent living movements. Because of Marca, countless people have been freed from confining living arrangements and liberated to live independently in communities,” Schakowsky said.

Bristo stepped down as CEO of Access Living in late August due to her prognosis.

“I step down from my leadership with pride, gratitude, and love for the entire Access Living and disability rights community,” Bristo wrote then. “Together we have shared victories and setbacks in our fight for disability rights. The greatest joy of my professional life has been helping young people find their power and seize their rightful place in the world.”

Bristo is survived by her husband, Bob Kettlewell; their children, Sam and Madeline; and her granddaughter Beatrix.

Services have yet to be announced.