We Remember... 
Frederick A. Fay was prostrate 24 hours a
day. Strategically placed mirrors were among the devices that aided him. Fay
had an inoperable spinal cyst diagnosed 30 ago years that inhibited breathing
and swallowing if he sat up.
Frederick Allan Fay (Sept. 12th, 1944
– Aug. 20th, 2011). Fay, a native of the Washington, D.C.,
area, was a pioneer of the rights of the people disabilities and a longtime
activist and lobbyist for the cause. He was 66.
Fay, who earned many honors in his lifetime, was one of
the founders of the Boston Center for Independent Living -- the second CIL in
the country -- and a leader in the nationwide efforts to secure passage of the
Americans with Disabilities Act, which became law in 1990. His activism also
helped bring to fruition sections 503 and 504 of the Rehabilitation Act of 1973
(which prohibits discrimination against persons with disabilities) and the
Individuals with Disabilities Education Act of 2004.
In 1975, his work on a “Comprehensive Needs
Study” of people with severe disabilities demonstrated the need for
independent living centers nationwide, for which federal funding eventually was
secured. He was a disability policy adviser to the White House and Congress and
a pioneer in the field of assistive technology, particularly in the use of
computers to empower people with spinal cord injuries and other disabilities.
Fay, active in gymnastics as a youngster, sustained a
cervical spinal cord injury in a backyard trapeze accident when he was 16,
which preceded his use of a manual wheelchair. Growing up in Washington, D.C.,
he later wrote that "every single curb was like a Berlin Wall telling me that I
was not welcome to travel farther than a block."
At 17, he co-founded "Opening Doors," a counseling and
information center. In 1963, Fay and his mother founded the Washington
Architectural Barriers Project. That led to the passage, five years later, of
the Architectural Barriers Act, which made the D.C. subway system accessible to
all.
In 1964, he was invited by President Lyndon Johnson to the
Rose Garden for the signing of the Urban Mass Transportation Act. At the time,
the White House was not accessible, and Fay had to be bumped up the steps in
his wheelchair.
Fay attended the University of Illinois, one of the
nation's first wheelchair-accessible universities, from which he earned
bachelor’s, master’s and doctoral degrees. He later moved to the
Boston area, finally settling in Concord, Mass. In addition to the Boston CIL,
he founded the Massachusetts Coalition of Citizens with Disabilities and the
American Coalition of Citizens with Disabilities.
Until syringomyelia, a progressive disorder that affects
the spinal cord, made it impossible for him to sit upright, Fay worked for many
years at the Tufts New England Medical Center. Later, he was able to work at
home by using a headset to speak and listen on the phone, and he had a personal
computer mounted on a stand near his motorized bed. He also arranged to have an
electronic work station suspended over the bed. From there, he created the
“Justice for All” forum that compiled and distributed disability
rights information.
“Fred represented the political arm of our
community,” said Pat Figueroa, a longtime disability rights activist.
“Without a doubt, he was the best political strategist we had. He was a
devout Democrat, and now he’s in a place where they don’t allow
Republicans.”
Figueroa knew of Fay through his involvement with the
National Paraplegia Foundation, and later through Fay’s role in developing
the BCIL. They met around 1990, and the two joined forces in an effort to get
Bill Clinton elected president of the United States in 1992.
After developing a network of trusted and like-minded
people, the two devised a strategy to have the disability community play a
pivotal role in the election. With the help of a large group of advocates
around the country -- which included Becky Ogle, Chris Palames, Judy Heumann
and others -- they hammered out a nationwide get-out-the-vote plan. Working
with the leaders of the Democratic National Committee, they incorporated their
plan into Clinton’s election strategy. The plan worked. For the first
time, people with disabilities had played a significant and undeniable role in
a national election.
During Clinton’s 1996 re-election campaign, Fay and
Figueroa repeated the effort, a job made much easier with the popularity of
email and websites.
“The independent living-usa dot com web portal (now
accessed at www.ilusa.com) was something Fred Fay encouraged me to
launch,” said Figueroa, publisher of Independence Today. “He
even sent me a huge number of disability-related links.”
Numerous political figures, including senators Edward
Kennedy and John Kerry, found their way to the site of Fay’s motorized
bed. That fact prompted the saying, “All Massachusetts politics go through
Concord,” where Fay’s house was located.
A film about Fay’s life and his role in the
disability rights movement, “Lives Worth Living,” by Storyline Motion
Pictures, is scheduled to air on PBS television on October 27th.
According to the Storyline Motion Pictures website: “Fred Fay’s life
proves that one man can change the world, even though he has to lie flat on his
back just to stay alive. ‘Lives Worth Living’ looks at Fay’s
struggle to survive after a devastating spinal cord injury and his alliance
with a small group of dedicated activists who formed the disability rights
movement and helped drive the nation toward equal rights.”
Of Fay, Colleen Starkloff, co-founder, with her late
husband Max, of the Starkloff Disability Institute, wrote: “Fred’s
passing is a great loss to the disability community, but his life was a
tremendous contribution to disability rights. Our thoughts and condolences go
out to his son, and his great, loving Trish. Fred lives on in advocates across
this nation, and his contributions benefit the lives of millions of people with
and without disability. We loved him, and we will miss him.”
Said Ogle, the senior advisor on disability issues
for the Kerry-Edwards presidential campaign of 2004: “Fred Fay … was
a pioneer in every sense of the word. Fred managed to lead one of the most
impressive, productive and meaningful lives all the while being flat out on his
back 24-7. Some people who are upright won't come close to accomplishing all
Fred was able to accomplish flat out on his back. Granted, Fred was fortunate
to have Trish and others in his life who supported his goals and desires, but
they will be just as quick to dismiss their own contributions and give full
credit to Fred.” Fay was the longtime life partner of Trish Irons; father
of Derick Fay of Riverside, Calif.; and brother of Jean Fay Depp of North
Carolina, Margaret Fay Pippen of Missouri and Brewster W. Fay of Pennsylvania.
He also is survived by many nieces, nephews and cousins.
-- Compiled from various sources |
