The death
of Fred Fay on August 20th*, 2011, is a deep loss to the world of
disability advocacy. Fred was an unparalleled pioneer, innovator, and
advocate. Fred was injured at 16 while working on a gymnastics trapeze
routine and was a paraplegic since.
At 37, another spinal
cord injury led Fred to stay in bed full-time. Fay was a pioneer -
he attended University of Illinois due to it’s accessibility for
people in wheelchairs. A few years after his first injury he was
invited to the White House and had some trouble getting in to meet
President Johnson; Two and a half decades later, presidents were
calling Mr. Fay for advice on critical disability rights issues.
Before
Fred Fay was a pioneering advocate, he worked at IBM and developed some
of the architecture for the modern day Internet. Yeah, besides helping
write PL-94-142, the law that allowed people with disabilities
to be educated in public schools, and helping to write the
Americans with Disabilities Act, he helped build the Internet.
Fay accomplished most of his advocacy while lying in bed.
Fred
Fay leaves a legacy far more than just legislative victories or a
number of presidents who looked to him for policy advice; his
legacy lives on within the disability community. Fay worked with
just about everyone in the disability rights community at one point or
another and several talked about making the pilgrimage to Concord, MA
to see Fred at his house.
I knew of Fred as he was the
founder of the Justice for All email listserv in 1995. In 1997,
while a senior in college, I was asked to provide technical assistance
for a TASH, The association for people with severe handicaps,
presentation Fred was to give in Boston. I, along with a number of
friends, brought my computer to Boston for the TASH conference and
“helped” Fred, who had won the prestigious Betts award earlier that
year, gave a great presentation about the potential for using the
Internet for activism.
The conference presentation was
awesome. Years later, when trying to cover another story, Fred
helped me out in a big way, and the minute he found out I worked for
the same insurance company he was covered under, well, who else would
he ask for questions on his policy. I even had the pleasure of making
that pilgrimage to Fred’s ultra futuristic home, where his bed traveled
all around the house. I never played Scrabble like many other folks
did; Fred apparently was an incredible Scrabble player, but he also had
an insane music collection, including every single REM album.
The
loss of Fred Fay is unique; no one will be able to fit in his shoes (or
bed) or have as much first hand knowledge of the disability community.
Fay had a vision of people with physical disabilities being included in
mainstream society, and while much of that goal has yet to be realized,
it has made tremendous progress, with much of that progress a direct
result of Fred’s tireless activism.
A documentary
scheduled before Fred’s death will be played on PBS in October,
[2011?] and the Largest Minority Radio Show on WBAI in New York
spoke with the documentary’s executive producer / independent living
pioneer Elmer Bartells and Head of the National Council on Disability,
Jonathan Young (Full Disclosure - the author also appears on this
episode but in a different segment) Funeral plans have not been made
public as of this writing.
Click here to listen to the Largest Minority radio show streaming
Click here to see an interview with Fred from the upcoming PBS Documentary.