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Disability Rights Advocate, Access Living Founder Marca Bristo Dies

CHICAGO (CBS) -- Marca Bristo, one of Chicago's and the nation's most prominent advocates for people with disabilities, died Sunday morning.

Access Living of Metropolitan Chicago, which Bristo founded 40 years ago, announced Bristo's death from cancer Sunday morning on Twitter. Bristo was 66.

Bristo broke her neck and was left paralyzed from the chest down in a diving accident in 1977. In a video published by Access Living, Bristo said in those days, "accessibility in Chicago and around the country was not to be seen. It was sort of like moving around a third-world country, in many respects, if you were in a wheelchair."


Access Living CEO Marca Bristo Speaks about Documentary on Disability Rights Movement by AccessLiving on YouTube

In another video published by Rush University Medical Center -- where Bristo was a trustee -- she said she suffered in many other ways as a result of the accident.


ADA Stories: Marca Bristo by Rush University System for Health on YouTube

"I lost my home, because it had stairs. I lost my job. I lost my income. I lost my health insurance," she said. "But I didn't lose my friends or my family, and I didn't lose that sort of fighting spirit."

Bristo said she and her friends used to have to time their outings based on whether there was a bathroom available – since even when someone in a wheelchair could get into an establishment, the bathrooms often were not accessible.

"And it took me a while to really grasp that this was a matter of discrimination," Bristo said. "It really took a while for me to let go of my belief that I just had to suck it up, basically, and accept my limitations."

But as she put it, she came to realize that "my wheelchair wasn't too wide for the doors; the doors were too narrow for my wheelchair."

Bristo went on to found Access Living, which brought the independent living movement for people with disabilities to Illinois. The organization was part of the Rehabilitation Institute of Chicago until 1984, when it became an independent nonprofit.

Bristo and Access Living are credited with getting the Chicago Transit Authority to make all buses accessible. Access Living noted that Bristo physically blocked CTA buses during protests for accessibility in 1984, and also filed a lawsuit that compelled the agency to install lifts on buses.

The organization also initiated a disability housing coalition, which led to the creation of the Office of Disability Policy within the U.S. Department of Housing and Urban Development.

Bristo also helped craft the Americans with Disabilities Act of 1990.

"When you think about it, first off, everybody said it couldn't be done. So you had this group of people – many of whom couldn't see, couldn't walk, couldn't hear, didn't think the way other people did – and here we were trying to pass the biggest civil rights law since the Civil Rights Act of 1964. And everybody said, 'You're never going to do it,'" Bristo said in the Rush video. "And we did it."

President Bill Clinton appointed Bristo as chair of the National Council on Disability in 1994, and she held the role until 2002. She also served as president of the United States International Council on Disabilities, served as a member of the Obama Foundation Inclusion Council, and co-chaired the Human Rights Watch Disability Advisory Committee.

Numerous local officials and leaders honored Bristo's memory on Twitter Sunday, including Mayor Lori Lightfoot, Gov. J.B. Pritzker, Cook County Board President Toni Preckwinkle, and former Obama Senior Adviser Valerie Jarrett.

U.S. Rep. Jan Schakowsky (D-Ill.) issued a multi-part tweet – noting that she and husband Bob Creamer had been friends with Bristo for four decades.

"She relentlessly took on and often beat down obstacles that prevented people with disabilities from living full and productive lives," Schakowsky tweeted. "To her last breath, she was reaching out to elected officials and leaders, promoting a justice agenda."

Former President Clinton also released a statement:

"Marca Bristo was a courageous, visionary leader who dedicated more than 40 years of her life to breaking down barriers for people with disabilities. 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."

Bristo is survived by her sister, Gail; her husband, Bob Kettlewell; their two grown children, Sam and Madeline; son-in-law Pierce Nahigyah; and her 2-month-old granddaughter, Beatrix.

Access Living said Bristo will have a private funeral for family only, and plans for a public memorial are to be determined.

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