Because of an inoperable spinal cyst diagnosed 30 years that inhibited… (Eric Neudel / Storyline…)
When he was in high school, Frederick A. Fay would shoot baskets for hours in his Bethesda, Md., backyard. Then, before heading inside, he might execute a routine of flips on a trapeze.
That was his intention one day toward the end of his junior year in 1961. Hands slick with sweat from shooting hoops, he jumped up to grab the trapeze and completed two flips. Then he lost his grip and fell 10 feet, uttering a profanity as he went down. He swore all the way to the hospital, where he learned that he had broken his neck in two places.
He was, at 16, a quadriplegic — one who would refuse to let his physical impairments define him.
At 17 Fay co-founded a support network for disabled people. Later he organized demonstrations and lobbying campaigns to expand their civil rights. He played a major role in winning support for the federal Americans With Disabilities Act of 1990, which guarantees job rights and access to public facilities.
Fay was "one of the ringleaders who created the independent movement to get the disability community organized," said former California congressman Tony Coelho, who has epilepsy and was the original sponsor of the landmark legislation. "People liked to pat us on the head and say 'Don't worry, we'll take care of you.' Fred was one of those who said, 'Thank you, but we'd like to take care of ourselves.' "
Defying doctors' grim predictions for his survival, Fay was a leading activist for 50 years, until his death on Aug. 20 in Concord, Mass. He was 66. Trish Irons, his companion of 29 years, attributed his death to quadriplegia and a series of other health problems, including infections, diabetes and dementia.
Remarkably, Fay conducted most of his advocacy work while flat on his back.
He was diagnosed 30 years ago with an inoperable spinal cyst that inhibited breathing and swallowing if he sat up, but he maintained his activist role from an ingenious command center at home with computer monitors mounted on the ceiling, a motorized bed, remote controls for doors and windows, and strategically placed mirrors.
Many fellow activists had no idea he was prostrate 24 hours a day. "I knew he was in an angle of repose, but I didn't know how much," said Becky Ogle, a former Clinton administration advisor on disability policy who spoke to Fay on the phone for 10 years before meeting him. "When I finally met him," she said, "I was blown away by his setup. Fred's brilliance never ceased to amaze me."
An early adopter of the Internet, Fay created the Justice for All listserv in the mid-1990s with another leading disability advocate, Justin Dart, who died in 2002.
"It became a voice for the disability community," said Helena Berger, executive vice president of the American Assn. of People with Disabilities, which maintains the online forum with 8,000 subscribers. "Fred was way ahead of the curve in bringing people together."
Born in Washington, D.C., on Sept. 12, 1944, Fay was one of four children whose family line included activists and educators of the deaf.
Despite his devastating fall, neither he nor his parents lowered their expectations. A few days after the accident, with Fay immobilized in a rigid frame that periodically rotated him ("like a human rotisserie," he joked), his engineer father devised a clip that enabled him to hold a pencil and do his trigonometry homework while upside down. His mother found a pair of prism glasses that let him read a book propped on his chest.
After several months of rehabilitation, Fay started a counseling group with his mother, Opening Doors, to support people with spinal cord injuries. It was one of several organizations he would help launch over the years.
After finishing high school, he enrolled at the University of Illinois, one of the few campuses in the country that accommodated students in wheelchairs. He graduated in 1967 with a degree in psychology, later returning for a doctorate in educational and rehabilitation psychology.
After college he worked at IBM in Gaithersburg, Md., where he became computer savvy. For several years he directed rehabilitation research at Tufts University's medical center.
He influenced an impressive array of legislation, including the federal Urban Mass Transportation Act of 1964. After the bill's signing at the White House, where he had to be bumped up the stairs in his wheelchair because there was no ramp, he joined other activists to push for accessibility in public buildings, an effort that led to the Architectural Barriers Act of 1968.
Fay is featured in a PBS documentary on the disability rights movement, "Lives Worth Living," that is scheduled to air on Oct. 27.
Married in 1967 to Linda Martindale, Fay said his greatest achievement was helping to raise their son, Derick, a UC Riverside anthropology professor.
He separated from his wife in 1980. In addition to his son and his companion, Irons, his survivors include Irons' two children, a brother and two sisters.
One of Fay's favorite gadgets was a shaving mirror above his bed that he could tilt to see the faces of his guests, who over the years included luminaries such as Sen. Edward M. Kennedy. His mirrors also allowed him to be a fierce competitor at Scrabble, despite having to read the board upside down and backward. His agile navigation of the house and yard on his motorized bed astonished visitors.
"Each of us has a choice how we view our situation," he said two years ago in "Understanding Our Differences," an educational video." You have the freedom inside your head to decide who you are going to be and how you are going to react to the funny, strange, pitying attitudes other people have. You'll always have that freedom, no matter what else."