“It never felt right that I shouldn’t be able to live in the Community,” Marilyn Saviola, ICS Senior VP for Advocacy and the Women’s Health Access Project, told Independence Radio host Stephanie Wallace. “If I wanted to have a life, if I wanted to do things, I would have to fight for them. I knew that.”
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Marilyn, who has been quadriplegic and dependent on a ventilator since she contracted polio at age 10, has been fighting for her rights and for those of all people with disabilities for a long time, including for the right to live in the community in as accessible an environment as possible.
It may seem odd, then, to know that, as a young woman, she chose to live at Goldwater Memorial Hospital, a long-term care rehabilitation facility on Roosevelt Island, rather than stay with her parents in the Bronx. “My world was constantly shrinking,” Marilyn says, “to the point where I made an intellectual, emotional decision to live at Goldwater rather than to live at home—which is so contrary to the mores of our society. You’re supposed to be home.”
But it was at Goldwater where Marilyn first began to develop a strong impulse toward independence and the skills to demand and win it. She explains, “I wanted to go to college and there was no way in hell I could go to college if I couldn’t get in and out of my house.” At least Goldwater was wheelchair accessible. Still, Marilyn had to exert a great deal of will to make the institution a suitable base from which to realize her ambitions.
Educated for Independence
Forced as a child to be educated at home in a city program that gave her minimal time with teachers, Marilyn says, “I wanted to go to college, but I wasn’t learning.” When she first applied for college, she was denied vocational rehab funds.
“They said I was too disabled and I’d never work,” she says. “They said ‘get a college that would accept you,’ so I got accepted into LIU [Long Island University]. Then they said, ‘well, she’s too disabled. She’s not going to be able to do it.’ I wrote to Senator [Jacob] Javits—that’s how far back we’re going—and said to him, ‘I’m being denied this, I want the chance to try.’ So they gave me a year’s probation. If I could maintain a C or better grade point average, they would pay for it. And I did, and they did.”
At Goldwater, Marilyn had a peer group of people 18 to 35 who, like her, were expecting to leave the hospital someday, after college or vocational rehab, to go back into the community and become productive citizens. “They developed a special unit called the young adult unit. The nursing staff, the nurse’s aides, were handpicked. They didn’t wear uniforms. We had a ‘house mother’ and a regular recreation person and social worker—everyone handpicked.”
Marilyn and her cohorts at Goldwater agitated for a different approach to hospital hours. Rather than everyone being put to bed and woken up at the same time for the convenience of the nursing staff, the members of the young adult unit were allowed to stay up if they needed to study or work on a paper. If they needed to make an early class, they would be prepared for the day by the night shift. Marilyn describes the creation of the unit and its accommodating rules as “a political achievement.”
“Then they decided to staff it with regular nurses—to move out the staff who were on the unit—because we were getting ‘too uppity,’” Marilyn says, adding by way of explanation, “It was the Sixties.” Marilyn organized a demonstration to protest the changes. “We had a sit-in in the lobby of the hospital,” Marilyn recalls. “We stopped it. I think that was my first real victory…. It was the first time I realized that you could really have power if you work together.”