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Fay, advocate for rights of those with disabilities, dies at 66

Mon., Sept. 5, 2011

A quadriplegic at 16, he helped pass ADA

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.

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 a command center at home with computer monitors 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 adviser 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 Association of People with Disabilities, which maintains the online forum with 8,000 subscribers. “Fred was way ahead of the curve in bringing people together.”

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