The Disability Community Worldwide Mourns The Death Of Marca Bristo
Sarah Kim<https://www.forbes.com/sites/sarahkim/>Contributor
Diversity & Inclusion<https://www.forbes.com/diversity-inclusion>
I write about diversity and inclusion in the realm of disabilities.
[Disabilities Lawsuit]

Trailblazing disability rights advocate Marca Bristo dies at 66 on September 8, 2019. (AP Photo/M. Spencer Green)
ASSOCIATED PRESS

Dozens of pioneer advocates fueled the passage of the Americans with Disabilities Act in 1990. Marca Bristo was one of those key players in drafting and passing the legislation that impacts 64 million<https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html> people with disabilities today in this country.

After a long battle with cancer, Bristo died this past Sunday<https://www.accessliving.org/newsroom/press-releases-and-statements/beloved-disability-rights-leader-marca-bristo-dies-at-66/> in her Chicago home at age 66. The disability community worldwide is mourning its loss.

In 1977, 23-year-old Bristro dove into Lake Michigan to retrieve a pair of scandals that her friend's dog accidentally knocked in. Not knowing the shallowness of the lake, Bristo hit her head on the bottom, which broke her neck and ultimately paralyzed her from the chest down. Life as she knew it completely changed from this moment forward.

"It was sort of like moving around a Third World country, in many respects, if you were in a wheelchair," Bristo recalled in a 2011 video interview<https://www.youtube.com/watch?time_continue=17&v=jIbJJLqPiCU>. "It took me a while to really grasp that this was a matter of discrimination."

Rather than dwelling on the tragic accident, Bristo mustered up the courage and motivation to reshape how society saw and treated people with disabilities. Three years later, in 1980, she founded Access Living in Chicago, a nonprofit that promoted independent living for the disabled. The organization fundamentally transformed Chicago's landscape for the disabled- notably making the city's buses and schools accessible - and later became a model for cities across the country. The success and need for Access Living instigated Bristo to create the National Council on Independent Living<https://www.ncil.org/about/>, which she led for many years.

"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<https://twitter.com/SenDuckworth/status/1170784050723901442?s=20>. "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."

In 1993, President Bill Clinton nominated her to lead the National Council on Disability, which he chaired until 2002. Then, Bristo went on to help draft the ADA Amendment Act of 2008 and supported the Obama administration on disability right issues.

"She focused on her ability, not on her disability," said Valerie Jarrett, a senior adviser to President Barack Obama, who met Ms. Bristo in Chicago in the mid-1990s and later made her an adviser to the Obama administration. "There wasn't a policy decision we made over those eight years that would affect the lives of people with disabilities, without consulting Marca," Jarrett said in an interview with the New York Times<https://www.nytimes.com/2019/09/08/obituaries/marca-bristo-dead.html?smid=nytcore-ios-share>.

Those achievements account for only a small percentage of Bristo's legacy in the disability rights movement. She was married for 32 years to J. Robert Kettlewell, and they had two children. She had just recently become a grandmother.

Kettlewell mentions<https://www.washingtonpost.com/local/obituaries/marca-bristo-leading-advocate-for-people-with-disabilities-dies-at-66/2019/09/09/52a729dc-d30a-11e9-9610-fb56c5522e1c_story.html?noredirect=on> that in the days following his wife's passing, she received a phone call from Speaker Nancy Pelosi. Bristo urged the speaker to move the Disability Integration Act - designed to prohibit discrimination against disabled individuals who need long-term services - "to [the] committee and to a floor vote."

Bristo is one pinnacle example of how having or acquiring a disability does not place limitations on a person. But instead, she saw that it is the systematic oppression and physical structures that often may impede the life of a person with a disability. She spent over 40 years restructuring societal perceptions and redefining equality to ensure people with disabilities worldwide have access to fundamental rights and protection.

"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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https://www.forbes.com/sites/sarahkim/2019/09/10/the-disability-community-worldwide-mourns-the-death-of-marca-bristo/#620c1e9c78fc
Robin Troutman
Deputy Director
National Association of Councils on Developmental Disabilities
1825 K Street, NW, Suite 600
Washington, DC  20006
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