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 Marca Bristo: A Force for EmpowermentBy Deborah Kendrick In the last two years, Marca Bristo has spun her wheels in Australia, Ireland, England, Turkey, Italy and a few other countries. Less than a week after the interview for this story was conducted, she was on her way to North Africa.
Bristo, 54, is recognized as a major leader in the American disability rights movement. She helped found and was second president of the National Council on Independent Living (NCIL), served as chair of the National Council on Disability under President Clinton, and serves as president and CEO of Access Living in Chicago. Like all leaders, however, she wasn’t born at the head of the conference table and doesn’t sleep there, either. The “real” woman is both passionate and compassionate, has a story to tell and tells it, but is interested in the stories of millions of other disabled people as well. Her recollections of disability while growing up in upstate New York were, she says, pretty much the same negative images that are all-too-familiar to so many of us. Her mother had serious respiratory illnesses and her sister’s friend was a polio survivor, but no one thought of those occurrences as being connected. There were, she says, “the kids who came to school on the special bus, and the kids who were educated down in the basement. I just never thought about it very much.” Then, in 1977, while living in Chicago and working in her first job as a nurse at a women’s health clinic, her perceptions of disability were abruptly altered. She had recently been to Jamaica, where she had purchased what she considered “very cool shoes.” Walking along Lake Michigan with some friends, her shoes were knocked into the water by a dog – and the rest, as they say, is history. Bristo dived into the water to retrieve her shoes and broke her neck. In the hospital and going through rehabilitation, she expressed the attitude that she just wanted to get back to her life. She was, as she puts it, the typically “good” patient. But a year later, when she went to a conference in Berkeley, Calif., her outlook changed. After seeing what an accessible community could look like and meeting powerful leaders in the burgeoning disability rights movement, she realized she had been pretending. “My life changed with that trip,” she recalls. “Disabled people give power to other disabled people.” Once she realized that finding an accessible apartment or getting onto a train or into a restaurant were not just personal issues but those of a whole national – and international – community of people, she says, “it gave me back my life.” In 1978, she began meeting leaders such as Judy Heumann and Ed Roberts. In 1980, she helped found Access Living in Chicago, which, she says, has always been her home base. Even during the eight years she directed the National Council on Disability, her work with Access Living continued. Despite weekly commutes to Washington, D.C., to deal with national and, eventually, international policy-making, she remained at its helm. This year, a new $18 million Access Living project became a
reality. The four-story, 50,000-square-foot facility in downtown Chicago is,
she believes, the first office building of its kind to be built on the
principles of both universal design and “going green.” It is, in
other words, both completely accessible and environmentally friendly. The
result, she says, is a true community building, with spaces used by numerous
other non-profits. When she leaves her office at the end of the day, it is not
unusual to find a diverse collection of activities going on throughout the
facility. Many on the 60-member staff of Access Living are, like Bristo, people who have endured. It is somewhat unusual for an independent living center, she says, to have staff with the kind of staying power that Access Living has enjoyed, but many have been there for 18 years or more. One of Bristo’s personal passions is travel, which she enjoyed long before she became disabled. She has been all over the world on both business and pleasure. Her family is also of premier importance. She and her husband have a son who attends the University of Wisconsin and a daughter soon to graduate from a Chicago arts high school. Although her family has always been supportive of her activities, she never believed in imposing her zeal for disability rights upon them. “My son has gone with me overseas a few times as a helper,” she says, “and my husband, a great strategist, often lends his expertise when it comes to public affairs – the message and the media.” But she leaves up to her family members how much they wish to be involved in her work. That work today is largely focused globally. During her time with the National Council on Disability, she was the first disabled person to be part of two U.S. delegations and began working with a variety of government agencies to develop a more cohesive foreign policy regarding people with disabilities. With the help of many, that effort emerged as the Convention on the Rights of Persons with Disabilities, adopted by the United Nations General Assembly on December 13th, 2006. Currently, 115 countries have signed on in support of the convention but only seven have ratified it. To be enforced, at least 20 countries must ratify the convention. Thus far, the United States has not done so. Bristo is passionate regarding the need for the U.S. to ratify. Once the convention is ratified, a committee will be established to oversee implementation. “Only countries that have ratified will sit on that committee,” Bristo says. “So if the U.S. doesn’t step up to the plate, we won’t have a seat on that committee.” She believes that America has much to learn from other countries regarding disability rights. Even though countries such as Japan, Sweden, Norway and Korea originally learned from us, they have surpassed us, in her view, with regard to their policies regarding disabled people. In August 2008, Bristo will speak at the Rehabilitation International convention in Quebec. She urges more Americans to attend and get involved. “There is nothing more empowering and inspiring of hope for the future as seeing how our movement has spread around the world,” she says. “It’s contagious. More people need to see that.” What does she feel is her most important accomplishment? “Being part of building a movement,” she says, without hesitation. “Disabled people give power to one another. That is what our movement is all about. We have developed a number of leaders here (at Access Living) and see people come through here and become part of (the) leadership of our movement. That’s empowering.” ********** Deborah Kendrick is an award-winning writer, editor and poet. Currently, she works as a newspaper columnist and as senior features editor for AccessWorld. |
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When not traveling
abroad, Bristo has certainly kept herself busy. She is co-founder and CEO of
one of the first 10 independent living centers in the United States, has held
both national and international positions influencing the lives of people with
disabilities, has raised two children almost to adulthood and just celebrated
20 years of marriage. Despite her globe-trotting and long list of
accomplishments, she speaks with measured certainty, weighing her words with
care but remaining consistently clear about her opinions. 