On the walls of the second floor conference room of Access Living, Chicago’s independent living center, are eight staff pictures from throughout the center’s nearly 40 years of existence. The staff gathered every five years from 1980 through 2015 for a group photo. The only person in all of those photos is Marca Bristo.
Bristo was the leader of Access Living — most recently holding the title of president and CEO — from the day it opened in 1980 until she resigned for health reasons the week before she died on Sept. 8 at age 66. In 2017, she was diagnosed with cancer.
Her impact and influence stretched way beyond Chicago. The mayor of Chicago, the governor of Illinois, both Illinois U.S. senators and members of Congress, including Speaker of the House Nancy Pelosi, put out statements of condolence. Former U.S. Senator Tom Harkin of Iowa talked about Bristo’s life and legacy on the PBS national news program NewsHour. Former President Barack Obama said in a statement, “Marca had a remarkable way of bringing out the best within us. For me, she was a trusted voice and a persistent, buoyant spirit.”
A Leader From the Beginning
On a summer day in 1976, Bristo was hanging out with some friends on a pier on a beach in Chicago when a dog knocked her shoes into Lake Michigan. Bristo dove in to retrieve the shoes, hit bottom and broke her neck. From then on she used a wheelchair full time.
Access Living was one of the first CILs in the U.S., so even though Bristo was only in her 20s and had worked as a nurse before her injury, she was suddenly a key leader in the fledgling independent living movement. The original location was in a storefront, but in 2007 Access opened the four-story building in downtown Chicago that was designed, built and financed by a team Bristo organized. This transformation illustrates Bristo’s leadership style.
Playwright and author of the novel Good Kings Bad Kings Susan Nussbaum is one of the people in the first Access Living staff photo. “A lot of people helped her of course, but I can’t imagine anyone else that could go the distance and build Access Living from a tiny storefront to a huge deal that rescues so many lost people, like I was,” she says.
Nussbaum became a quad in 1978 when she was run over by a car. She met Bristo a year later at the Rehabilitation Institute of Chicago. “Even as a crip, she looked cool and beautiful, which kind of annoyed me. I was still in that lumpy, inert stage of rehab. A year later, I heard that a disability rights organization starting up and Marca was in charge. I immediately called her and asked for an interview. When I came in the door, I looked around that little storefront, with crips working away at various projects, and recognized them as my community. I thought, ‘I don’t have to feel self-conscious here. I fit in.’ It was a floaty feeling, like a heavy weight off my shoulders.”
Bristo was that escort into the disability community for thousands of people. She recruited politicians, philanthropists and business leaders to support Access Living and its building project and to serve on the board and committees.
Bristo co-founded the National Council on Independent Living and was its chair for many years. President Clinton appointed her chair of the National Council on Disability in 1994, and she served until 2002. “I will remember Marca for a lot of reasons,” says Kelly Buckland, executive director of NCIL. “But the one that most often comes to mind was my first NCIL conference in 1989. Marca was president of NCIL and led a march on the White House to get President George H.W. Bush to support the ADA. That led to a meeting between the NCIL leadership and the White House the next morning, and eventually led to White House support for the ADA.”
Threading the Advocacy Needle
CILs are supposed to be all about serving and empowering the grassroots. Activists, including those of us who founded Chicago ADAPT, met and organized at Access Living and still do. That often put Bristo in the middle of tensions, with activists nurtured and supported by Access Living protesting against the powerful people Bristo was trying to charm.
Bristo was deeply committed to advocacy, and she knew that successful advocacy works on many levels. In an interview with NEW MOBILITY’s Josie Byzek that appeared in Mouth magazine in 2000, Bristo said, “Voluntary compliance only goes so far. Deeply-rooted patterns of discrimination require both a carrot and a stick. If there’s no consequence for violating the law, people will go on violating it.”
So while Bristo developed personal relationships with and won the genuine respect of powerful and influential people, Access Living earned a reputation as a CIL with strong and effective advocacy that would engage in lawsuits, street protests or whatever tactics would win.
Amber Smock, who is deaf, is Access Living’s director of advocacy. She says, “While a lot of people felt Marca was intimidating, I knew her as a warm and generous and fun person. Yes, she could have high expectations and she would let you know if you didn’t meet them. But she was wise enough to both be challenging and to be challenged. She had great conviction that what she was doing was the right thing and it could be very uncomfortable to disagree with a person who had such a proven track record. But she could still hear you and was willing to take guidance and change tack. She still respected and loved you as a person. And when push came to shove, she’d take great risks with you right by your side.”
Smock says, “She had very broad shoulders, literally and metaphorically. I leaned on them, as did everyone. Her loss means I need to stand on my own and let other people lean on me.”
Bristo met her husband of 32 years, Bob Kettlewell, when he was a staff member for former U.S. Congresswoman Cardiss Collins. Bristo and Kettlewell had a daughter, Madeline, and a son, Sam. Madeline gave birth to their only grandchild, Beatrix, in July.