January 14, 2020

In Remembrance: Disability Rights Advocate Marca Bristo’74

Marca Bristo’74, whose work improved the lives of millions of people with disabilities, died on Sept. 8, 2019, at age 66.

Marca Bristo'74, Disability Rights Advocate. Bristo was a key figure behind the 1990 passage of the Americans with Disabilities Act. In 1980, she founded Chicago-based Access Living, which advocates for the independence of people with disabilities. It became a national model and influenced the passage of the ADA, which she helped draft and amend. She was globally and nationally influential, serving as an advisor to the Clinton and Obama administrations. President Clinton selected her to chair the National Council on Disability from 1994-2002.

Shortly after graduating from Beloit, Bristo broke her neck after diving into Lake Michigan and was paralyzed. Before the accident, she had been working as a registered nurse with plans to become a nurse midwife. Once she was using a wheelchair, everything changed, including the patients she saw, where she could go, and how people treated her.

In a presentation at Beloit in 1998, she talked about returning to work after her accident. Suddenly all of the disabled patients were being referred to her, she said. She was working in reproductive counseling, family planning, and sexuality, and many of the patients she was sent were using wheelchairs and were far beyond their reproductive lives. She recalled a watershed moment one day when she reviewed all of her recent patients’ records.

“Reading them all at once was like a sledge hammer hitting me over the head,” she said. She realized they were incomplete—for instance, questions about sexuality, filled in for non-disabled people, were left blank for her patients. She reflected on how she herself often spent less time with disabled patients because staff weren’t available to assist, or a medical van arrived early, forcing the patient to leave because they had no other way home.

She complained to her boss, who said, “Help us fix this.” She went to Berkeley, Calif., for a conference and discovered a progressive world of curb cuts and wheelchair lifts. It was the beginning of a transformation. “Instead of looking at my wheelchair as being too wide for the bathroom,” she said, “I now look at the doors of the bathroom as too narrow for my chair. And that’s what the disability rights movement has been about. It has changed my life, and it is now beginning to change the world.”

Nicole Gotthelf’76 knew Bristo at Beloit and crossed paths with her later in Chicago’s non-profit world. She says Bristo was “fierce and a fighter, and she had that spirit at school.” Gotthelf recalls being in Uruguay recently and noticing how accessible the country had become. “Here I am in Latin America, and there is ADA accessibility everywhere, and it was Marca who did that. I’m proud she was at Beloit.”

When Bristo died, many tributes appeared, including from former Presidents Obama and Clinton, and Edward M. Kennedy Jr., son of the late Massachusetts senator, who chairs the American Association of People with Disabilities. Kennedy, who lost his leg to cancer at age 12, told the New York Times that Bristo “reframed the disability experience as a civil rights issue, as opposed to a medical issue.”

Bristo received many accolades during her lifetime, including two major honors from Beloit—the Distinguished Service Citation in 1989 and an honorary doctorate in 1999. She is survived by her husband, J. Robert Kettlewell, a daughter, a son, and a granddaughter. At press time, members of the class of 1974 were working with the college on a gift to honor Bristo for their 50th reunion.

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  • Cover of A Story About Sprout by Helen M. Waters’89.

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