Marilyn Saviola, fierce advocate for disability inclusion, has died.
Marilyn Saviola, who broke down barriers for people with disabilities, especially in the area of women’s health care died peacefully in her sleep on Saturday Nov. 23. She was 74.
Her fight led to New York City Council hearings in 2012 that resulted in more money being allocated to making several women’s health care centers accessible across the city.
“Everyone benefits from accessible care and universal design. At some point in your life, you’ll probably need something more accessible,” Saviola said in a press release.
Born and raised in the Bronx, Saviola contracted polio at age 10 and was sent to Goldwater Hospital, on New York’s Roosevelt Island, to live.
While there, she came into contact with other people who grew to be instrumental in the disability rights struggle and who lobbied the hospital to obtain the services necessary to leave the institution and live in community.
Despite having been initially deemed too disabled to attend college, in 1965, Saviola admitted to Long Island University, where she became involved in anti-Vietnam protests and the women’s movement. Her activism there led her to begin thinking about disability rights and soon her Brooklyn apartment became the meeting place for the newly-formed group Disabled in Action.
“Sitting majestically in her massive power chair, with the ventilator humming. I was awed by the life she was able to build for herself, after freeing herself and helping to free others from the institution (Goldwater),” disability activist Nadina LaSpina, who also lived for a time at Goldwater Hospital, said on her Facebook page.
After working as a rehabilitation counselor at Goldwater Hospital for 11 years, Saviola became executive director of Center for Independence of the Disabled in New York in 1983.
Under her leadership, the organization became a leading independent living center, recognized for its expertise in advocacy and services for people with disabilities.
Saviola was also an early advocate for the creation of the, highly successful but now-threatened, Consumer Directed Personal Assistance program which allows disabled and elderly people to hire people they know as caregivers rather than rely on agencies to assign strangers to work with them.
In 1998, Saviola became senior vice president for advocacy at Independence Care System, a non-profit which coordinates a range of services enabling adults with physical disabilities to live independently.
In 2008, she founded the ICS Women’s Health Access Program, making women’s preventive health care more widely available to the disabled. She also sought to make primary care more accessible to both women and men with disabilities.
Saviola has also served as the chair of the Manhattan Borough Disability Advisory Group, as a board member of the Association of Independent Living Centers in New York, a member of the New York City Medicaid Managed Care Task Force, and as a board member of Disabled in Action.
In 2018, Saviola was inducted into the New York State Disability Rights Hall of Fame.
In July, Saviola was honored by NYC Health + Hospitals — the largest public health care system in the U.S. — for her unwavering advocacy of the rights of people with physical disabilities to live as independently as possible.
“This unexpected honor means a great deal to me,” Saviola told The Amsterdam News. “NYC Health + Hospitals was one of the first health care providers in New York City to embrace our goal of making health care accessible to people with disabilities.”
Loreen Loonie, Senior Vice President, Marketing & Communications for ICS said in an email: “She died peacefully in her sleep. She is survived by a vast network of family and friends. We are waiting for the information on memorial plans and we will share them on our website and Facebook page,”