The following tribute to the late disability rights pioneer, Marca Bristo, was written by Fun For The Disabled’s Vanessa Harris and Access Living’s Bridget Hayman. It is being re-printed with permission. Anyone with a disability, whether from vision loss, birth defect, injury or other, owes the freedoms and rights they enjoy at least in part to this brave and relentless champion of equality. It’s time to pick up the torch.
Remembering Marca Bristo
Internationally renowned disability rights leader Marca Bristo died September 8th, 2019 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.
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.
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.
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.
Fun for the Disabled
Vanessa Harris, the founder of Fun for the Disabled, is an environmental engineer who loves to dance. She enjoys “chair dancing,” moving to the music in her wheelchair. She just launched a new not for profit organization: The Strategy for Access Foundation NFP.
“Our mission is to provide short documentary subjects and inspiring stories about people who manage to have a good life and create a legacy while they are alive regardless of their disability or circumstances. We also cover entertaining and educational information about products, organizations, places and events for the disabled and their friends and families so that they can share memorable experiences.”
Visit Fun for the Disabled: https://www.fun4thedisabled.com/
Follow their blog: https://www.fun4thedisabled.com/blog/
Bridget Hayman is Access Living’s Director of Communications. She is a 2018 University of Chicago Civic Leadership Academy Fellow, a 2017 ADA 25 Advancing Leadership Fellow, and a Rotary Ambassadorial Scholar. She holds a master’s degree in visual culture from Lancaster University, England, and a triple bachelor’s in English, journalism, and public relations from the University of Northern Colorado.
Access Living is a diverse group of people with deep experience in disability advocacy, service, and social change. Over 60% of their staff have disabilities or lived experience with disability. At the heart of everything they do is the mantra of the disability rights movement: “Nothing about us without us.” Their core services include advocacy, independent Living skills, transition support, peer support, information and referrals. Learn more about Access Living at: https://www.accessliving.org/