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Marca Bristo, leading advocate for people with disabilities, dies at 66

Disability rights activist Marca Bristo, shown in 2011, played a key role in drafting and passing the Americans With Disabilities Act of 1990.
Disability rights activist Marca Bristo, shown in 2011, played a key role in drafting and passing the Americans With Disabilities Act of 1990. (M. Spencer Green/AP)
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In 1977, 23-year-old Marca Bristo dove into Lake Michigan while trying to retrieve a pair of sandals. She broke her neck in the shallow water, was paralyzed from the chest down and soon lost her job, income, health insurance and stair-filled Chicago home.

Traveling across the city suddenly became difficult, in some cases impossible. There were few accessible transportation options, and seemingly just as few accessible bathrooms. When she made it to a restaurant, usually by going through the kitchen, servers would turn to her friends and ask: “What does she want to order?”

“It was sort of like moving around a Third World country, in many respects, if you were in a wheelchair,” Ms. Bristo recalled in a 2011 video interview. “It took me a while to really grasp that this was a matter of discrimination.” As she put it, it was not that her wheelchair was too wide for certain doors. Rather, those doors were too narrow for her wheelchair.

Within three years, Ms. Bristo formed what is now Access Living, a Chicago nonprofit organization that advocates on behalf of people with disabilities. She went on to play a key role in drafting and passing the Americans With Disabilities Act of 1990 — and then, after receiving a presidential appointment, helped ensure it was enforced.

Often described as an extension of the Civil Rights Act of 1964, the law barred discrimination against people with disabilities, a group that now includes roughly 1 in 4 American adults, or 61 million people, according to the Centers for Disease Control and Prevention.

“Without Marca’s work over the last 30 years, the Americans with Disabilities Act would not be in existence & I would not be a U.S. Senator,” Tammy Duckworth, a Democrat from Illinois and the first disabled woman elected to Congress, wrote Sunday in a tweet. “Because she crawled up the steps of the Capitol to pass the ADA, I get to roll through its corridors to cast my votes in the U.S. Senate.”

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Ms. Bristo was 66 when she died Sept. 8 at her home in Chicago. She had cancer but continued to lead Access Living until shortly before her death, which her organization announced in a statement.

In a 2008 interview with Chicago magazine, Andrew J. Imparato, president and CEO of the American Association of People With Disabilities, called Ms. Bristo “one of our greatest assets in the disability movement.” She was also praised by politicians including House Speaker Nancy Pelosi (D-Calif.), who hailed Ms. Bristo in a statement as “an extraordinary champion for the rights of people with disabilities.”

In the days before his wife’s death, J. Robert Kettlewell told the New York Times, she received a phone call from Pelosi. Ms. Bristo was still pressing for political change: She urged the speaker to move the Disability Integration Act — designed to prohibit discrimination against disabled individuals who need long-term services — “to committee and to a floor vote.”

A former labor-and-delivery nurse, Ms. Bristo was credited with helping make Chicago buses and schools more accessible through her leadership of Access Living, one of the first federally funded centers for independent living.

Designed and operated by people with disabilities, the centers emerged in the late 1970s to teach people with multiple sclerosis, hearing impairments and other disabilities how to manage money, cook dinner and use a phone, among other daily tasks. They also brought lawsuits against cities and agencies in an effort to increase accessibility.

Ms. Bristo “was always quite strategic,” said her friend Judith E. Heumann, a longtime disability rights activist. “She recognized that in order to effect change that would have an impact in Chicago, she needed to be working in coalition.”

So in 1982, she joined Charlie Carr and Max Starkloff in forming the National Council on Independent Living, a Washington-based organization intended to share information among independent-living centers and push for nationwide reforms.

“Marca really helped bring the voices of disabled people together to work statewide and at the national level,” Heumann said by phone. “The ADA was one of the first efforts to bring together disabled people across the country.”

Working alongside activists such as Justin Dart Jr., co-founder of the American Association of People With Disabilities, Ms. Bristo helped draft and lobby for the ADA, which was originally introduced in 1988 by Rep. Tony Coelho (D-Calif.) and Sen. Lowell P. Weicker Jr. (R-Conn.).

In an interview Monday, Coelho recalled that Ms. Bristo “was not afraid to speak up, and not afraid to disagree” at strategy meetings. She organized demonstrations at the White House and the Capitol before the legislation was signed by President George H.W. Bush on July 26, 1990, a day that she described as “our Independence Day.”

“The law for the first time enshrined in federal law that disability is a normal part of the human condition, and the world needed to change,” Ms. Bristo said in a 2015 video interview for Rush University Medical Center. “And that’s a huge paradigm shift, for the world to acknowledge that people with disabilities exist and that the world has to make changes for us to be part of it. It’s a radical notion.”

Marcia Lynn Bristo was born in Albany, N.Y., on June 23, 1953. She was raised on her family’s farm in nearby Castleton-on-Hudson before moving to West Winfield, N.Y., where she was a member of the high school color guard team and a master at tossing her ceremonial sword high into the air.

Ms. Bristo studied sociology at Beloit College in Wisconsin, where she began using the nickname Marca, and graduated in 1974. She received a nursing degree from Rush University in Chicago two years later and worked at Rush-Presbyterian-St. Luke’s Medical Center before her diving accident.

In a 2014 interview with the progressive media organization Nation of Change, Ms. Bristo recalled that she initially believed she would never work again after the accident. When the director of Northwestern University’s Prentice Women’s Hospital offered her a position — or suggested she return to work; accounts vary as to when she started at the hospital — she replied, “I can’t work.” She eventually changed her mind, saying she did not want her disability to define her life.

Ms. Bristo was working as a family-planning specialist when her supervisor sent her to a conference in Berkeley, Calif., a progressive bastion that felt like “a new country,” Ms. Bristo said, with an abundance of “curb cuts” that enabled people with disabilities to cross the street with ease.

In 1993, President Bill Clinton nominated her to lead the National Council on Disability. She chaired the federal agency until 2002, becoming the first person with disabilities to hold the position, and later served as president of the U.S. International Council on Disabilities.

Ms. Bristo also helped draft the ADA Amendments Act of 2008; advised the Obama administration on disability rights issues; and — as North American vice president of Rehabilitation International, a disability rights group — helped negotiate the passage of the United Nations’ Convention on the Rights of Persons With Disabilities.

The treaty was adopted by the United Nations in 2006 and signed by Obama in 2009, but it has not been ratified by Congress, amid objections from some Republicans that the agreement would infringe on U.S. sovereignty.

Ms. Bristo married Kettlewell in 1987 and had two children, Samuel Kettlewell of Chicago and Madeline Nahigyan of Huntington Beach, Calif. They survive her, as do a sister and granddaughter.

To some observers, it was perhaps just as remarkable that Ms. Bristo was able to raise a family after her accident as it was for her to reestablish a career. But she resisted that kind of thinking, quashing attempts to brand her disability as an obstacle she was forced to heroically overcome.

“I wish people would not look at persons with disabilities and think of us as heroic and filled with courage,” she told the Chicago Tribune in 1996. “There was really no courage involved in it. It never felt that way to me. Dispelling that kind of myth is just as important to us as dispelling the myth about disability wherein people think you’re incapable of doing for yourself.”

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