Beloved Disability Rights Leader Marca Bristo Dies at 66 


September 8, 2019 | by Bridget Hayman

Bristo’s legacy lives on in the organization she built for and with disabled Chicagoans and her advocacy for the global disabled community 


Bridget Hayman

Director of Communications

(312) 640-2129

She will Rest in Power

CHICAGO — September 8, 2019 —Internationally renowned disability rights leader Marca Bristo died this morning from cancer.

Marca founded and built Chicago’s Access Living, one of the nation’s leading disability rights and service organizations.  She had recently stepped down from her role as CEO because of her prognosis.

Paralyzed from the chest down in a diving accident at age 23, Marca became a staunch disability activist early in life, starting Access Living just two years after her accident. From there, her work expanded to the national and international stage. 

Advocates from all fields recognized Marca powerful – and sometimes deliberately controversial –  tactics. Along with other people with disabilities, Marca physically blocked Chicago Transit Authority (CTA) buses during protests in 1984 and filed a lawsuit that forced the agency to install lifts on buses and improve accessibility.

Almost 40 years after Marca founded Access Living, the organization has continued to be a highly influential voice in the fight for equity and inclusion of people with disabilities. It is run and led by disabled people, and in addition to high profile advocacy efforts, Access Living provides essential services to nearly 2,000 Chicagoans with disabilities so they can live the lives they choose in the community. Through outreach and information and referral, Access Living reaches thousands more people every year. The organization has sued agencies including the CTA, the Chicago Housing Authority and the City of Chicago for civil rights violations of people with disabilities.

“That’s part of the disability experience: taking risks and having a tenacious sense of can-do-it-ness,” Marca said in a 2008 interview with Chicago Magazine. “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.” 

One in four Americans has a disability and there are approximately one billion disabled people in the world.

Marca was an early champion for people with disabilities and one of her crowning achievements was helping to author the Americans with Disabilities Act, the landmark legislation that granted people with disabilities civil rights that was signed into law in 1990. However, Marca’s advocacy never stopped – her efforts 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.

Marca served as the Chair for the National Council on Independent Living for many years after co-founding the organization in 1982. President Clinton appointed her as chair of the National Council on Disability from 1994-2002 and she was the first person with a disability in the role. As the vice president of North America for Rehabilitation International, she participated in the negotiation for the United Nations’ Convention (UN) on the Rights of Persons with Disabilities, which the UN adopted in 2006. 

She was given 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. 

Access Living opened the doors of its permanent headquarters in 2007, a model of universal and green design. The building, which Marca personally spearheaded the $14 million in fund-raising for over the course of just three years, has been widely recognized in architecture.

Marca was named by a Chicagoan of the Year by Chicago Magazine in 2007, Crain’s Chicago Business as one of Chicago’s 100 Most Influential Women; was named as one of the Chicago Sun-Times’ 100 Most Powerful Women in 1990; is the recipient of an honorary degree from Beloit College; and is a Distinguished Alumna of the Rush-Presbyterian-St. Luke’s Nurses Alumni Association. Most recently, Marca was elected to the Board of Trustees at the Ford Foundation.

When Marca stepped down as CEO of Access Living late last month, Executive Vice President Daisy Feidt was named Acting CEO. A search has begun to pick a new permanent CEO who will sustain Access Living’s national leadership.

Said Andrés Gallegos, Access Living’s current board chair: “Marca was exceptional.  A visionary and leader with extraordinary skills who built Access Living into the most influential center for independent living in the country. She loved Access Living and foremost for its people. She challenged and helped those around her achieve their full potential, and in doing so, she has cultivated the next generation of disability rights leaders.  As a testament to her leadership and influence, Access Living alumni are in leadership positions in city and state government, national disability advocacy organizations and have served, and are serving, as advisors to federal governmental leaders.  She was rightfully proud of that. Through them, her legacy lives on.”

Said U.S. Senator Tammy Duckworth: “Marca reached out to me during my first few months home after Walter Reed, and she has been a friend and counselor—especially on disability issues—ever since. 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. 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. While we have so much progress yet to make, the disability community can thank Marca’s leadership, activism and sacrifice for the more inclusive society we live in today. I was honored to call her my friend and will miss her dearly.”

Said U.S. Senator Dick Durbin: “I was proud to call Marca a friend and one of my heroes. 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.  Her persistence led to the passage of the Americans with Disabilities Act, the most significant civil rights law of our time.  Generations of Americans with disabilities will have Marca Bristo to thank for the freedoms they enjoy because she dedicated her life to them.”

Said former Illinois Attorney General and LT. Governor Neil Hartigan: “Marca was one of the most extraordinary people I’ve ever known. I’ve only had a very few heroes in my life, but she was one of them. It’s a privilege to have been a friend of hers. She did more for the dignity and enhancement of disabled people than anyone in our lifetime.” 

Marca was raised in New York state on her family’s farm. In high school, she was Captain of the Color Guard, where she earned fame as the only Captain in the region who could toss her ceremonial sword into the air and catch it.

At age 17, she spent her senior year of high school in the Philippines, beginning a lifetime of international travel. She began Beloit College in Wisconsin in 1971 with one year of college credits after having attended college-level courses in Manila. After graduating from Beloit, she attended the Rush School of Nursing with the intention of becoming a midwife. She became a registered nurse in Labor and Delivery at Rush-Presbyterian St. Luke’s Medical Center. Following her paralyzing accident, she was a family planning nurse specialist at Northwestern’s Prentice Women’s Hospital prior to her full-time disability advocacy. Marca was also a recovering addict and alcoholic, which greatly influenced both her personal and professional life and helped drive her disability advocacy efforts.

Near the end of her life, Marca said she had no bucket list — that she had done what she set out to do and seen what she wanted to see.  She also shared her firm belief that the disability activism work she started was in good and capable hands to be carried on by the staff at Access Living.

Marca 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 who stole her heart from day one.


Established in 1980, Access Living is a change agent committed to fostering an inclusive society that enables Chicagoans with disabilities to live fully–engaged and self–directed lives. Nationally recognized as a leading force in the disability advocacy community, Access Living challenges stereotypes, protects civil rights and champions social reform.