When she was paralyzed from the chest down in a 1977 diving accident, Marca Bristo recalled, “I lost my home, because it had stairs. I lost my job. I lost my income. I lost my health insurance, but I didn’t lose ... that fighting spirit.”
That fighting spirit was evident throughout the rest of her life as a local, national and international leader of the disability rights movement. Bristo, who was a member of the Rush University Medical Center Board of Trustees and a graduate of what is now the Rush University College of Nursing, died Sunday in her home in Chicago. She was 66 years old.
In 1980 Bristo founded Access Living, a Chicago-based nonprofit organization that advocates and provides services for people with disabilities. Bristo remained the organization’s CEO until a few weeks before her death.
Throughout her life, she was an agent for change. In 1984, along with other people with disabilities, Bristo physically blocked Chicago Transit Authority buses during protests and filed a lawsuit that forced the CTA to install lifts on buses and improve accessibility.
Nationally, she helped to author the Americans with Disabilities Act, the landmark 1990 law that outlawed discrimination against people with disabilities. “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,” Bristo said in a Rush video reflecting on the law’s passage.
Her advocacy also led to the first fair housing program in the country to address disability discrimination, the inclusion of disability issues in domestic violence law and the requirement for all televisions to have close-captioned decoders.
Bristo’s impact on Rush
Bristo’s perspective made a difference in countless ways at Rush.
“We are deeply saddened by Marca’s passing, but we also are grateful for the legacy of increased accessibility and disability inclusion that she gave to us,” said Dr. Omar Lateef, Rush University Medical Center CEO. “That legacy will long endure, and our patients, staff and entire community will continue to benefit from her willingness to share her inspiring vision.
“Her impact was personal to so many of us, and her impact is seen throughout the buildings of Rush and in the people at Rush. On behalf of everyone at Rush, I offer our condolences to Marca’s husband, Bob, and their children. We always will be grateful to her.”
In the early 1990s, prior to joining the Medical Center Board in 2008, she and colleagues from Access Living conducted an audit of the Medical Center’s facilities, providing Rush’s ADA Task Force with priorities for increasing access for people with disabilities.
During the design phase for the Tower that Rush opened in 2012, the building’s architects and engineers visited the new headquarters Access Living opened in 2007, which incorporated universal design standards – that is, features designed to be usable by all people, including people with disabilities.
That visit resulted in the Tower including universal design features such as carpet colors that provide better way finding for people with impaired vision and lower counters at reception areas for people in wheelchairs.
Bristo also played a key role in ensuring the Tower restrooms were accessible. “I came over and looked at one of the mock patient rooms, and discovered pretty quickly that I couldn't go into the bathroom and close the door in my wheelchair because the door would get stuck on my chair when I tried to close it,” Bristo said in a 2015 interview at Rush. “They were already pretty finished so I suggested, ‘Well, why don’t you just make the door swing both ways with hinges?’”
Rush did just that, and she said that Rush should call them “the Bristo doors” in honor of her solution.
Dr. Larry Goodman, former CEO of Rush University Medical Center and the Rush system, worked closely with Bristo over many years. “We are inspired by her extraordinary life,” he said.
“Marca didn’t let her disability, or anything else, stop her tireless pursuit of full accommodation of people with disabilities that would allow them to live their lives as they choose and to make full use of their abilities. Rush is a better place for her work with us, and those of us who were fortunate to have known and worked with Marca are better for it as well.”
Bristo’s national leadership
President Clinton appointed Bristo chairperson of the National Council on Disability, a position she held from 1994 to 2002. As the vice president of North America for Rehabilitation International, she participated in the negotiation for the United Nations’ Convention on the Rights of Persons with Disabilities, which the UN adopted in 2006.
She was a co-founder and former president of the National Council on Independent Living and the most recent emeritus president of the U.S. International Council on Disabilities, a role that took her around the world advocating for people with disabilities. She was an adviser to President Obama and co-chair of Illinois governor-elect J.B. Pritzker’s Transition Committee on Human Rights. In addition to the Rush board, Bristo served on the boards of Forefront and the Ford Foundation.
Bristo received the Distinguished Service Award of the President of the United States in 1992; the Henry B. Betts Laureate, considered the Nobel Prize in the disability field, in 1993; and the 1993 United Way of Chicago Executive of the Year Award. She was named one of Chicago’s 100 Most Influential Women by Crain’s Chicago Business; made the Chicago Sun-Times’ list of 100 Most Powerful Women; and named one of Chicago magazine’s Chicagoans of the Year (in 2007). She received numerous other awards and honors.
Raised in New York state on her family’s farm, Bristo earned a Bachelor of Arts degree from Beloit College in Beloit, Wisconsin. She earned a Bachelor of Science degree in 1976 from what is now the Rush University College of Nursing, intending to be a midwife, and worked at Northwestern Medicine Prentice Women’s Hospital in the labor and delivery unit prior to her accident.
There has been an outpouring of national and local leaders acknowledging Bristo’s many contributions.
“Without Marca’s work over the last 30 years, the Americans with Disabilities Act would not be in existence and I would not be a U.S. Senator,” said Sen. Tammy Duckworth (D-Illinois), whom Bristo befriended while Duckworth was recovering from the loss of her legs in a combat injury. “Because she crawled up the steps of the United States Capitol to pass the ADA, I get to roll through its corridors to cast my votes in the U.S. Senate. ... The disability community can thank Marca’s leadership, activism and sacrifice for the more inclusive society we live in today.”
U.S. Senator Richard Durbin (D-Illinois) also paid tribute to Bristo, saying, “When she was paralyzed from the chest down in 1977, she pushed forward when others might have given up to lead an army of people with disabilities like her whose spirits are unyielding. ... Generations of Americans with disabilities will have Marca Bristo to thank for the freedoms they enjoy because she dedicated her life to them.”
“Marca Bristo leaves an incredible legacy of making the world most just and accessible for everyone in her community,” Gov. Pritzker said. “Her work will live on with the countless friends and colleagues she inspired, including me.”
Bristo is survived by her sister, Gail; her husband, Bob Kettlewell; their two children, Sam and Madeline; son-in-law Pierce Nahigyah; and her two-month old granddaughter Beatrix. Her funeral will be private and for family only. Plans for a public memorial are to be determined.