Marilyn Saviola
In Image No. 1 – Marilyn Saviola out for a roll.
Marilyn Saviola’s lifetime of service to our community began in the earliest days of the New York City Disability Rights Movement. Severely disabled by polio, which she contracted in 1955, Marilyn spent much of her youth at Goldwater Hospital, where she participated in in-patient efforts to get out into the world, go to college and make their own way. By her late teens she had joined the Architectural Barriers Committee (ABC), one of the first political voices for the then-new movement. That’s when I first met her, as a little boy. After winning a difficult battle with the New York State Vocational Rehabilitation Agency over whether her disability was too severe to warrant higher education, Marilyn became a student at Long Island University, where she met Judy Heumann. When Judy and others founded Disabled In Action in 1970, Marilyn quickly threw in with them.
Her apartment became both a meeting place for DIA and the first rehearsal space for the Disabled In Action Singers--a long-lived folk music troupe which I was fortunate enough to record and perform with, many years later. In 1983 she became Executive Director of the Center for Independence of the Disabled, New York (CIDNY), succeeding Pat Figueroa at the helm of the first Independent Living Center in New York State. She held that position for the next fifteen years.
Next came another long stint, as Vice President of Advocacy at Independence Care Systems (ICS). ICS has gone through several incarnations over the years, but it was initially intended to provide coordination of services for people with disabilities--to manage the care and supports on a long-term basis for people with chronic conditions who live independently and are eligible for Medicaid.
As one of the advocates for creation of the home care program, a longtime home care consumer, and an experienced executive, Marilyn was immediately interested in ICS’ potential, and helped build it into a large-scale, successful and unique combination of provider and insurer. By 2007, ICS had some 3000 members, with offices on the second floor of 257 Park Avenue South (where portions of the DIA Singers’ first CD were recorded).
Marilyn was continuously involved in a host of projects, but one particularly consistent effort involved women with disabilities. In 2008, Marilyn launched the ICS Women’s Health Access Program for Women with Physical Disabilities, which focused on preventive, gender-specific health care, and in 2012 she released a report, with New York Lawyers for the Public Interest, entitled “Breaking Down the Barriers, Breaking the Silence: Making Health Care Accessible for Women with Disabilities.”
Meanwhile, in 2010 Marilyn served as chief narrator for a lengthy video profile of the DIA Singers, which appeared in the New York Times under the title “Able To Sing, Able to Fight for Their Rights.”
Marilyn worked at ICS until she passed away in 2019, at the age of 74. She left behind a remarkable lifetime record of steadfast organizational work and unstoppable activism.
Note: a version of this entry appeared in Able News, ablenews.com
by Warren Shaw
