To Marca Bristo, longtime disability rights activist and founder of Access Living, change occurred on scales both large and small: from fighting for legislation in Washington and blocking CTA buses to protest lack of accessibility, to connecting with individuals to help them recognize their own place within the community of people with disabilities.
Throughout her career of fighting for the rights of individuals with disabilities, she was seen as a force to be reckoned with, relentless in the fight for equality.
“She was an incredible leader. She was a visionary. She was undaunted by the word, ‘No,’ ” said Judy Heumann, a disability rights activist and close friend of Bristo, based in Washington, D.C.
Bristo, 66, died Sunday of cancer, at home with her family at her side.
“Marca acted on what she believed in,” Heumann said. “She spoke up and spoke out. What she needs to be remembered for is her vision, her fortitude.”
Born in New York state and raised on her family’s farm, Bristol spent her senior year of high school in the Philippines. After graduating from Beloit College in Wisconsin in 1974, Bristo attended Rush University College of Nursing, training to be a midwife.
At 23, her life changed. Bristo was in a diving accident in Lake Michigan that rendered her paralyzed from the waist down and required her to use a wheelchair. After the accident, while working at Northwestern Prentice Women’s Hospital, she noticed a difference in the way women with disabilities were treated and pointed out the disparity to her supervisors, Heumann said. Thus began a lifetime of fighting discrimination.
Through her activism, Bristo had a significant impact on the lives of people with disabilities in Chicago, a city she loved dearly, and beyond, said Karen Tamley, commissioner of the Mayor’s Office for People with Disabilities.
In 1980 Bristo helped found Access Living, a nationally recognized disability rights organization dedicated to assisting those with disabilities in Chicago with living independently, and led the organization for many years. Today, the organization helps about 3,000 people each year, said Andres Gallegos, Access Living board chair.
“Marca touched the lives of countless people throughout the country, many of whom don’t realize the impact she’s had,” Gallegos said.
Gallegos, who has considered Bristo a friend and mentor for more than 10 years, said he learned to embrace his own disability by watching “how she carried herself and led the disability community.”
Locally, Bristo also led the charge in the fight for accessible public transit. In 1984, she and several other people with disabilities chained themselves to CTA buses, later filing a lawsuit against the CTA that led to the implementation of bus lifts and later other accessibility measures on buses and at rail stations, Heumann said.
“She was a force,” Tamley said. “She really fought for people with disabilities to be able to have equality and equal rights in all aspects of community life in Chicago and beyond.”
With other disability rights leaders, Bristo helped write the Americans With Disabilities Act, civil rights legislation that prohibits discrimination against those with disabilities. After it passed in 1990, she worked to ensure that it fulfilled its promises, Heumann said.
Over the years, her activism took on many forms: She co-founded the National Council on Independent Living in 1982. President Bill Clinton appointed her as chair of the National Council on Disability. She served as the first person with a disability to hold the role, from 1994 to 2002. She participated in the negotiation for the United Nations’ Convention on the Rights of Persons with Disabilities, which the U.S. adopted in 2006, and was appointed to the Ford Foundation board of trustees in June.
Bristo also was pivotal in forming the first fair housing program to address disability discrimination, fought for the inclusion of disability issues in domestic violence law and helped implement the requirement for all televisions to have close-captioned decoders.
Bristo gave her whole self to advocacy, openly telling friends she had several disabilities, some invisible, including a struggle with addiction and alcoholism, Heumann said. She spoke of her life in totality and recognized discrimination within the disability community, fighting for inclusivity within the movement.
“That’s part of the disability experience: taking risks and having a tenacious sense of can-do-it-ness,” Bristo told Chicago Magazine in 2008. “The things we’ve been advocating are not just for a marginal group of people; they’re for the society as a whole. Disability affects all of us. It’s time that we normalize and accept it rather than perceive it to be at the margins of our society.”
Bristo continued her activism until the very end, only taking time off work when treatment required it, Gallegos said. She stepped down from her role at Access Living in late August.
Bristo is survived by her husband, Bob Kettlewell; their children, Sam and Madeline; a sister, Gail; and a granddaughter.
A private funeral and burial will be held for the family and a public memorial service will be announced at a later date.
