Marca Bristo’74 Remembered as a Pioneering Disability Rights Advocate
Marca Bristo’74, an instrumental figure in the disability rights movement and in the passage of the Americans with Disabilities Act of 1990, passed away on Sunday, September 8.
“I haven’t worked closely with a whole lot of people as influential as her,” Gary Arnold’92, who worked at Bristo’s organization Access Living for 18 years, told the Round Table over the phone on September 13. “It was remarkable to see how she could move a room without raising her voice, and get people to change their position by making a connection with them. That’s what I’ll think about when I think of her.”
Bristo used a wheelchair following a diving accident that she sustained when she was 23, shortly after graduating from Beloit. After becoming disabled, “I was on my own to cope with this new reality,” she wrote in a Chicago Tribune column in 2015, “in spite of my activist spirit and the historical civil rights context in which I was raised.”
There were little to no mechanisms in place to help her maintain her job or her healthcare, or even to use public transportation or restrooms. When Bristo encountered pioneering accessibility norms like wheelchair lifts and curb cuts in Berkeley, Calif. not long after her accident, she began to see inaccessible public property in other cities as a form of discrimination, instead of another obstacle she had no choice but to navigate.
In 1980, Bristo founded Access Living, a Chicago-based nonprofit organization that provides services and support for people living independently with disabilities. Two years later, she founded the National Council on Independent Living. Later that decade, she helped former Congressman Tony Coelho of California and Senator Lowell Weicker of Connecticut draft and amend the A.D.A. bill, which she later described as “the most comprehensive civil rights law since the passage of the 1964 Civil Rights Act.”
She was nominated to head the National Council on Disability by President Clinton in 1993. She served in that role until 2002, and later as an adviser to the Obama administration. In 2014, Bristo was elected president of the United States International Council on Disabilities, a role in which she travelled internationally to collaborate with disability rights movements in other countries.
Bristo’s insight about lack of accessibility as a social issue characterized her activism for the rest of her life. Speaking to the New York Times last week, former Connecticut senator Edward M. Kennedy Jr. said that Bristo “reframed the disability experience as a civil rights issue, as opposed to a medical issue.”
Gary Arnold agrees. When disabilities are framed as a medical issue, he said, “it sounds like something we need to fix,” and demanding accommodations becomes “asking the party with the power to do it out of charity.”
Arnold was connected with Bristo and Access Living through former Beloit College president Victor E. Ferrall, Jr. after her Commencement address in 1999, and he worked as her assistant, and later in the organization’s public relations department. Today, he’s program director of the Progress Center for Independent Living and has served as president of the Little People of America. He spoke at Commencement in 2018. (Arnold also edited the Round Table during his time at Beloit).
“I credit [Bristo] for giving me the final push to reframe my disability and the way I see myself,” he said. “I’ve had to settle into the idea that I don’t need to fit in, because I’m never going to fit in; but I deserve equity here, and don’t expect me to accommodate [able-bodied people], either.”
Born Marcia Lynn Bristo, she was dubbed Marca during freshman orientation at Beloit, and the nickname stuck for life. Former Professor of English Tom McBride told the Round Table over the phone on September 14 that he had just joined the college’s faculty when Bristo’s senior year began. Although he never taught her, he knew that she was a “larger than life presence on campus.” He added, “The kind of energy and charisma that she had gave you the sense that she would try to transcend” the injury that she sustained after graduation.
“She really embodies the liberal argument, that you try to help people out not because you feel sorry for them, but because they can bring something to the community,” McBride said. “I think she embodies it beautifully.”
“It’s been almost joyous in a way to see the coverage [her death has] gotten,” said Arnold, noting profiles in the New York Times and on PBS NewsHour. “She’s still touching people she hasn’t touched yet.”
Marca Bristo’s death last Sunday followed a battle with cancer. She passed away in her home in Chicago at the age of 66, and she is survived by her husband of 32 years, J. Robert Kettlewell, their son and daughter, a granddaughter, and Bristo’s sister.