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Dr. Fred Fay; helped change society’s views on disability

Fred Fay at his Concord home in 2009. Using emerging computer technology, Dr. Fay advocated just as vigorously on behalf of those who could not walk, could not hear, or could not see. Fred Fay at his Concord home in 2009. Using emerging computer technology, Dr. Fay advocated just as vigorously on behalf of those who could not walk, could not hear, or could not see. (Yoon S. Byun/Globe Staff)
By Bryan Marquard
Globe Staff / September 9, 2011

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“Disability is equal opportunity,’’ Fred Fay told the Globe in 1998. “Anyone can qualify at any moment.’’

His moment arrived in his junior year of high school, when his hands slipped as he performed a move he often executed on a trapeze in the backyard of his family’s Maryland home.

Left a quadriplegic by the 10-foot fall, the young man had to decide what he would attempt to do with the rest of his life. Choosing activism, he became an early advocate for disability rights, playing a role in everything from ensuring the Metro subway in Washington, D.C., was built to accommodate wheelchairs to lobbying lawmakers to adopt the Americans with Disabilities Act.

Dr. Fay, a founder of the Boston Center for Independent Living, the Massachusetts Coalition of Citizens with Disabilities, and the American Coalition of Citizens with Disabilities, died Aug. 20 in his Concord home of complications from diabetes and urinary tract infections. He was 66.

“Fred was one of the great early pioneers in disability advocacy,’’ Jonathan Young, chairman of the National Council on Disability, an advocacy organization, said in a statement. “The depth and breadth of his knowledge and commitment was surpassed only by the life he lived and the legacy he leaves behind. It’s hard to fully appreciate the contributions of our pioneers because we have the benefit of living in the worlds they created. For most of his life, Fred worked remotely from home, which meant few got to meet him in person. But Fred’s work helped transform our nation from coast to coast.’’

Dr. Fay’s life was transformed twice, once with the accident in 1961, and again nearly 20 years later, when a cyst developed on his spinal cord and moved into his brain stem. Trading a wheelchair for a motorized bed, he didn’t miss a beat. Using emerging computer technology, he advocated just as vigorously on behalf of those who couldn’t walk, couldn’t hear, or couldn’t see.

“He was a very significant political force flat on his back, influencing legislation to make the world a better place,’’ said his younger brother, Brewster, of Narberth, Pa.

Just as significant for Dr. Fay was his life away from the political fray. He lived in Concord since 1983 with Trish Irons, and before that had been married and fathered a son.

“The thing that struck me about him, always, was his amazing confidence,’’ said his son, Derick, of Riverside, Calif. “That was true in his professional life, and his advocacy, and his personal life, like when he was playing Scrabble with us. You’d think you had him beat, and then the last play he’d use all his letters and get the 50-point bonus and come from behind to win.’’

Not terribly studious before the trapeze accident, Dr. Fay quickly realized that intellect would provide the mobility he suddenly lacked.

“He loved his brain,’’ Irons said. “We all should, but he did more so than others. He knew this is the most important part of any person, and he used it.’’

Dr. Fay “had a very dominant mind,’’ his brother said. “He was a very determined person, a very focused person, a persuasive person.’’

Persuasion was much in demand as disability rights coalesced over the past few decades. Politicians needed convincing that accessibility issues mattered, and people with different kinds of disabilities tended to have their own organizations that did not always work well together.

“It’s one of the most difficult constituencies to mobilize,’’ Dr. Fay told the Globe in 1990. “Getting blind people and deaf people to communicate alone is a real challenge.’’

But communicate he did, learning to use computers in his first job out of college with IBM and welcoming each development that made it easier for one with little or no use of his limbs to reach out to the world.

“He was a great organizer,’’ said Elmer Bartels, former commissioner of the state Rehabilitation Commission. “He could articulate the goal very well, and he could get people to do the legwork it takes to get a federal bill passed: call your senator, call your representative, write letters.’’

Frederick Allan Fay was born in Washington and was living in Bethesda, Md., attending Bethesda-Chevy Chase High School when he broke his neck.

After months of treatment, he finished high school through home schooling and went to the University of Illinois, at the time a rare college that was accessible to disabled students.

He studied psychology, graduating in 1967 with a bachelor’s degree, in 1971 with a master’s, and two years later with a doctorate. In 1967, he married Linda Martindale, who now lives in Arlington, Va., and they moved to Danvers in the early 1970s. Dr. Fay worked for a nursing home, then switched to other pursuits, including private practice as a psychologist.

He worked for several years at Tufts New England Medical Center, until the cyst further limited his mobility and he retired from going to an office, but not advocating on behalf of the disabled.

After decades of working with and advising everyone, from presidents to someone new to the world of wheelchairs, Dr. Fay was presented in 1997 with the Henry B. Betts Award for his life achievements in improving daily life for people with disabilities. It was one of many honors he received through the years. “Lives Worth Living,’’ a documentary featuring Dr. Fay’s life, is scheduled to premiere on PBS Oct. 27.

Some might have let the kind of adversity Dr. Fay faced prompt them to slip quietly into a sheltered existence. Early on, a rehabilitation counselor suggested he consider a course learning to weave baskets. He wanted more.

“Fred totally faced his life with joy,’’ Irons said.

In addition to Irons and his son and brother, Dr. Fay leaves two sisters, Jean Fay Depp of Waxhaw, N.C., and Margaret Fay Pippin of Branson, Mo.; and Irons’s children from a previous marriage, Joan Barberich of Northampton and Chris Barberich of San Francisco.

A service will be held at 10 a.m. tomorrow in Spaulding Rehabilitation Hospital in Cambridge. Burial will be private.

“He put people at ease incredibly quickly,’’ his son said. “People would meet him the first time and would be anxious. He had a remarkable ability to get people to relax and feel comfortable.’’

That wasn’t easy, but then, few things in Dr. Fay’s life were simple. At home in Concord, strategically placed mirrors let visitors see the smile on Dr. Fay’s face when he dispatched his latest Scrabble opponent. The mirrors also let him see far beyond the motorized bed that launched him into the world.

“My brother was a visionary,’’ Brewster said. “He saw how society dealt with people with physical disabilities and mental disabilities, and he was able to see the common denominator of stigma. And he was a significant force in uniting different groups together, to link civil rights with the struggle to overcome that stigma.’’

Bryan Marquard can be reached at