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US Marilyn Saviola, Disability Rights Advocate, Is Dead at 74

21:05  01 december  2019
21:05  01 december  2019 Source:   nytimes.com

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Marilyn E. Saviola, who after childhood polio left her a quadriplegic spent much of her adult life advocating for people with disabilities, pushing for the removal of both the physical barriers and the attitudes that hinder people like her from fully participating in society, died on Nov. 23 at her home in Brooklyn. She was 74.

a group of people walking down the street: Marilyn Saviola in 2005. She joined the battle for the rights of people with disabilities in the late 1960s, when it was still relatively new.© James Estrin/The New York Times Marilyn Saviola in 2005. She joined the battle for the rights of people with disabilities in the late 1960s, when it was still relatively new.

Independence Care System, which supports people with disabilities and chronic conditions, and where Ms. Saviola was a senior vice president, posted news of her death on its website. The cause was not given.

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Ms. Saviola joined the battle for the rights of people with disabilities back when it was still relatively new, while in college in the late 1960s. She was executive director of the advocacy group Center for the Independence of the Disabled in New York from 1983 to 1999 and then spent the next 20 years with Independence Care System, running its advocacy and women’s health program.

Those roles put her in the midst of the push for obvious accommodations like curb cuts in sidewalks and less obvious ones like financing for personal aides for people who need help dressing, bathing and getting in and out of wheelchairs. Over the years her wide range of activities included blocking buses in her wheelchair in transportation-related protests and organizing a singing group for people with disabilities.

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This past summer she was honored at the opening of a newly renovated radiology unit at NYC Health & Hospitals/Gotham Health in the Morrisania section of the Bronx that typifies her impact. The new unit, equipped with lifts, movable examination tables and a modified mammography machine, is designed to make it easier for women who use wheelchairs or have other disabilities to receive mammograms and obstetric and gynecological care.

a group of people in a room: Over the years Ms. Saviola’s wide range of activities included organizing a singing group for people with disabilities, seen here rehearsing at the Riverdale Community Center in the Bronx in 1997.© James Estrin/The New York Times Over the years Ms. Saviola’s wide range of activities included organizing a singing group for people with disabilities, seen here rehearsing at the Riverdale Community Center in the Bronx in 1997.

“Marilyn Saviola’s steadfast advocacy has ensured that the needs of the disability community are at the forefront of health care policy discussions,” Victor Calise, commissioner of the New York City Mayor’s Office for People With Disabilities, said at the time.

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For Ms. Saviola, such services and facilities were a civil right on a par with those fought for by black people and women.

“Our goal is not to get to the front of the bus,” she told The New York Times in 1997, “it is to make government pay for technology to get us on the bus.”

Marilyn Elizabeth Saviola was born on July 13, 1945, in Manhattan and grew up in the Bronx. Her father, Peter, and mother, Camilla, immigrants from Italy, owned a candy store and luncheonette. But her life changed drastically in August 1955, when she became sick while visiting relatives in Connecticut.

Polio was diagnosed. The first vaccine for it had recently been developed, but she hadn’t yet received it.

“I was supposed to do it when I went back to school in September,” she recalled in an oral history recorded for the Disability Rights and Independent Living Movement Oral History Project in 2001.

She was taken to Willard Parker Hospital in Manhattan.

“I was in this huge room where I guess there were maybe four or five other people,” she recalled, “and they would always die. Apparently I was one of the few people who ever survived in that room.”

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She spent time in an iron lung and, when she came out of it, had to use a respirator to breathe. She was transferred to Goldwater Memorial Hospital on Roosevelt Island, which provided long-term care for people with disabilities and chronic conditions, but eventually was sent home.

There, in her family’s two-story home, with stairs to negotiate, her life became more limited as she grew larger and her parents couldn’t easily lift her. In her teens, she decided to return to Goldwater to live.

“I had a lot of friends, but when you’re getting to like 16 and 17, they all would go out and I would be stuck alone,” she said. “So I had nothing. At least in Goldwater I had a peer group, you know, and I got out.”

She began to think about her disability and why it was easier for her to live in an institution than at home. She finished high school at Goldwater — there were tutors there — and was accepted at Long Island University.

At first she didn’t go to classes in person; she took them via a speaker phone.

“It was horrible,” she said. “All I had was the work and none of the fun of going to college.”

She began attending classes at the university’s buildings in Brooklyn, using a motorized wheelchair. That had its challenges.

“Going to the library was a joke because it really wasn’t at all accessible,” she said, “nor could you get any help unless you brought an able-bodied person with you or a person whose disability was less than yours.”

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Yet she earned a bachelor’s degree in psychology there in 1970. Two years later she received a master’s degree in rehabilitation counseling at New York University.

While in college she became involved with others who were turning the activism of the period toward issues faced by people with disabilities.

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“We were beginning to get much more militant about our movement,” she said in the oral history. “Wanting for change to occur through the goodness of well-meaning — this wasn’t enough.”

She participated in demonstrations with groups like Disabled in Action (later becoming its president), and she began to realize she wanted to leave Goldwater Memorial and live on her own. In 1973 she moved into her own apartment. She was surprised when friends and family members kept telling her how brave she was.

“The thing was that I wasn’t scared,” she said. “It was much scarier for me thinking about remaining the rest of my life in Goldwater than leaving the institution and living on my own.”

In the ensuing decades she was a strong voice on issues including transportation, housing and education for people with disabilities. In the 2001 oral history, she noted a simple sign of progress.

“Ten, 15 years ago, if I wanted to go to a movie, the way I would go is find out what movie is playing at the theater I could get into, as opposed to what movie is it that I want to see,” she said. “Now it’s so much easier, because so many of the theaters are accessible.”

Ms. Saviola is survived by her partner of many years, Robert Geraghty.

Although Ms. Saviola knew that in many ways the push for disability rights is still in its early stages and that the gains made by advocates like her can be undone, in a video interview with The Times in 2010 she noted one clear sign of progress, at least in New York: visibility.

“One of the greatest changes is, I’m not the only one,” she said. “I’ll go to an event, a concert, I’ll go into a store, there are other people who are wheelchair users. That didn’t happen 30 years ago.”

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