Fred Fay
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Frederick A. Fay (September 12, 1944 – August 20, 2011) was an early leader in the disability rights movement in the United States. Through a combination of direct advocacy, grassroots organizing among the various disability rights communities, building cross-disability coalitions between disparate disability organizations, and using technology to connect otherwise isolated disability constituencies, Fay worked diligently to raise awareness and pass legislation advancing civil rights and independent living opportunities for people with disabilities across the United States. He won the 1997 Henry B. Betts Award for outstanding achievement in civil rights for Americans with disabilities. Fay was recognized for "flat-out advocacy" over several decades. He helped lead the nationwide efforts by disability advocates to secure passage of the Americans with Disabilities Act of 1990. Jonathan Young, chairman of the
National Council on Disability The National Council on Disability (NCD) is an advisory agency on disability policy in the United States for all levels of government and for private sector entities NCD is an independent agency of the United States government headquartered in ...
, said, "Fred was one of the great early pioneers in disability advocacy...the depth and breadth of his knowledge and commitment was surpassed only by the life he lived and the legacy he leaves behind." Frederick Allan Fay, Ph.D., was born on September 12, 1944, and raised in Washington, DC. At age 16, he sustained a cervical
spinal cord injury A spinal cord injury (SCI) is damage to the spinal cord that causes temporary or permanent changes in its function. Symptoms may include loss of muscle function, sensation, or autonomic function in the parts of the body served by the spinal cor ...
, and started using a manual wheelchair for mobility. At 17, he launched his disability advocacy career by co-founding "Opening Doors," a counseling and information center. Fay attended the
University of Illinois The University of Illinois Urbana-Champaign (U of I, Illinois, University of Illinois, or UIUC) is a public land-grant research university in Illinois in the twin cities of Champaign and Urbana. It is the flagship institution of the Univer ...
, one of the nation's first wheelchair-accessible universities. A few years later, he was a founder of the Boston Center for Independent Living, the Massachusetts Coalition of Citizens with Disabilities, and of the
American Coalition of Citizens with Disabilities The American Coalition of Citizens with Disabilities (ACCD) was, in the mid-1970s to early 1980s, a national consumer-led disability rights organization called, by nationally syndicated columnist Jack Anderson and others, "the handicapped lobby". ...
. He was also the leader of the National Paraplegia Foundation, now known as th
United Spinal Association
and established and presided over its first chapter in Washington D.C. The Association still follows Fay's core principles of self-sufficiency and independent living to this day. Fay worked for many years at the Tufts New England Medical Center, until
syringomyelia Syringomyelia is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord. Often, syringomyelia is used as a generic term before an etiology is determined. This cyst, called a syrinx, can expand and elongate o ...
made it impossible for him to sit upright. For the past quarter century, Fay has worked from his home in Concord, Massachusetts. In the early years, he used a headset to speak and listen on the phone, plus a personal computer mounted on a stand near his motorized bed. He had an electronic workstation suspended over the bed. It was from there that Fay launched the Justice for All forum that compiles and distributes disability rights information to his wide network of friends and allies. One of the continuing visionaries of the disability rights movement, Fay provided ongoing leadership to disability advocates. He was recognized in the movement for his irrepressible enthusiasm and optimism. Fay made a short video with another disability rights notable, Roland W. Sykes, founder of DIMENET. He also appears in the 2011 disability rights documentary '' Lives Worth Living,'' where he argues that sheltered workshops should be resisted and that people with disabilities should be encouraged to live their lives independently. '' '' Fay died on August 20, 2011, at his home in Concord at the age of 66. He is succeeded by his son, Derick Fay, and survived by a brother and two sisters, as well as his companion Trish Irons and her two children from a previous marriage.


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External links


Disability Rights and Independent Living Movement
{{DEFAULTSORT:Fay, Fred 1944 births 2011 deaths American disability rights activists American activists with disabilities