Fay became an activist after being injured in a trapeze accident at 16 that damaged his spinal cord. Fay learned that he would never walk again and began using a wheelchair and then driving a car.
When he was 17, Fay co-founded a counseling and information center with his mother Janet called “Opening Doors” and the Washington Architectural Barriers Project that fought for accessibility of the D.C. transit system.
Fay developed assistive technology systems that use computers to empower people with physical disabilities. He was pivotal to the movement that achieved the passage of the Architectural Barriers Act of 1968, Sections 503 and 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act of 1975 and the Americans with Disabilities Act of 1990.
Fay had to lay flat on his back and switch from a wheelchair to a motorized bed after developing a cyst on his spinal cord that spread to his brain stem in his mid-30s.
Fay co-founded Justice for All, an activist blog of the American Association of People with Disabilities (AAPD,) as well as the Boston Center for Independent Living (BCIL), which opened its doors in 1974. He first visited the White House in 1964 when it was not yet accessible and entering in his wheelchair required assistance.
Fay was the chair of the Democratic National Committee’s Disability Caucus, the director of research and training at the Tufts University’s Department of Rehabilitation Medicine and the recipient of the 1997 Henry Betts Award at the Library of Congress via Satellite. He co-founded the Massachusetts Coalition of Citizens with Disabilities and the American Coalition of Citizens with Disabilities.
Judy Heumann, special advisor for international disability rights at the U.S. Department of State, said Fay was involved in the independent living movement from its inception.
“Fred was one of the real leaders in the movement,” Heumann said. “He was very much in touch with the changes that were about to start happening, moving away from the medical paradigm to the human rights model.”
Heumann said Fay’s experiences as a disabled and non-disabled person helped shape his perspective.
“He was a very articulate man who was able to inspire people so they could move forward in their lives and also be able to address and attack the issue of discrimination that people were facing,” Heumann said. “His legacy is very deep and I feel very honored to know him.”
Bill Henning, executive director of the BCIL said, “Fred's death saddens the BCIL family, yet his always ardent support for disability rights, which was always backed by a profound intelligence and creativity, has given us energy for the decades since he helped found the organization. Fred was a true giant in our world, eminently human in so many positive ways, always with vision and action for justice for all.”
Marca Bristo, president of the United States International Council on Disabilities called Fay an icon of the independent living movement. She compared him with Ed Roberts, Judy Heumann, Lex Frieden and Gerben DeJong, who she described as “thinkers and activists who framed the vision and set us on our course.”
“Fred understood that for people with disabilities to break free from the chains of oppression that bind us, we had to work in the corridors of power (politics), thought (academia) and discourse (media),” Bristo said in a statement.
Bristo said that in addition to his organizing, teaching and activism, Fay also empowered people by providing personal support, which included speaking to her for months after she received a frightening diagnosis of a condition that he had also experienced and was able to guide her through.
“What struck me most about Fred during this was not just his empathic abilities but his complete and total willingness to give of himself...at all times of the day,” Bristo said.
The AAPD released a statement saying, “Our movement has lost a fighter, an innovator, and a problem solver. We have also lost a friend.”
“Through the assistive technology he developed or the legislation he championed, Fred changed our lives and our world in tangible ways,” the AAPD said.
Fay leaves behind his life partner Trish Irons and his son Derick Fay. A documentary of his life called “A Life Worth Living” will air on October 27th on PBS.
This article was published in the October 2011 issue of Able News.