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COMMENTARY
Pioneers of the IL Movement
This is Part III of a series about the evolution of the
service-delivery system.
By Pat Figueroa, Jr.
The establishment of the Berkeley Center for
Independent Living, Inc. (CIL) in California was the beginning of the
independent living movement. But this beginning almost did not happen.
The
Berkeley center got its grant, and the bureaucrats at the Rehabilitation
Services Administration (RSA) of the Department of Health, Education and
Welfare also issued as many as six other demonstration grants to organizations
for exploring other modalities of “independent living.” Among these
was a grant to The Institute for Rehabilitation and Research (TIRR), which set
up a transitional living project known as New Options. The project, headed by
Lex Frieden, was a modular training program in which participants learned IL
skills.
Other projects included a brick-and-mortar housing program; a state
vocational rehabilitation counselor model (involving counselors who purchased
everything the client needed to live independently); a hospital-based model
with a skills development component; and a home-based model that basically
modified homes to increase participants’ independence.
When all was
said and done, the evaluators had one criterion in mind: Which served the most
people for the fewest dollars? The answer was obvious: the Berkeley center,
which they called the “resource model.” Ironically, it is one of the
few times in history that the government went the cheap way and bought into
more than it could or would be able to handle.
The brain behind the
Berkeley CIL was Ed Roberts. Roberts began the revolution in 1969 at Cowell
Hospital on the University of California campus, and he and the group known as
the “Rolling Quads” (the RQs) were living in the community. Roberts
and his cohorts not only lived the IL philosophy, they exemplified it.
Some
of the individuals identified or associated with the Rolling Quads and the
Cowell Residence Program were John Hessler (now deceased); Billy Charles
Barner; Cathrine Caulfield (first woman student in the Cowell program, 1968);
Herbert R. Willsmore; John “Jack” Rowan (chair of CIL’s board of
directors, 1976-1982); Peter Trier; and James Donald. Little is known of what
became of these people or their whereabouts. Their actions, however, forever
altered for the better the lives of countless individuals with disabilities. It
was the beginning of the end of medical institutions for “severely
disabled” persons.
As the Berkeley community became a Mecca for people
with disabilities, across the country other “severely disabled”
individuals were charting similar courses to independence. In St. Louis, around
1970, from his room in a nursing home with only a post-office box and a phone,
Max Starkloff conceived of Paraquad, a residential organization advocating
independent living for people with disabilities. Starkloff would not only be
successful in developing Paraquad, but he would also become one of the most
pivotal leaders in the IL movement, eventually assuming the role of first
president of the National Council on Independent Living (NCIL).
While the
IL movement flourished on the West Coast and Midwest, on the East Coast, a
group of students in the Northeast founded the Boston Center for Independent
Living in 1974. Other centers followed in Massachusetts, Vermont and other East
Coast states. Then in 1978, a renegade chapter of the National Paraplegia
Foundation (NPF) started a small project with an anonymous donation and some
state vocational rehabilitation funds. That became known as the Center for
Independence for the Disabled in New York (CIDNY), the first CIL in the state.
This New York City-based center was headed by one of the few minority leaders
in the movement, a fiery Latino named Patricio Figueroa, Jr. This was a big
test for the IL movement as the eyes of the country shifted to the Big Apple.
Like the song by Frank Sinatra, if the CIL made it in New York City, it would
make it anywhere.
Figueroa was no stranger to advocacy. As a
protégé of Fred Francis, who made the City University of New York
accessible before the Section 504 regulations were even signed, and as someone
who worked for Eunice Fiorito, the director of the NYC Mayor’s Office for
the Handicapped, he learned the inner workings of government. And, as a friend
and mentee of Judy Heumann, co-founder of Disabled in Action, he became a
shrewd strategist. The city of New York would be transformed by the people
associated with CIDNY and the Eastern Paralyzed Veterans Association.
As
George Washington is known as “the father of his country,” Ed Roberts
is considered “the father of the IL movement.” In the same vein,
Gerben DeJong was the movement’s Thomas Jefferson, the author of a
fledgling America’s Declaration of Independence. As a doctoral student in
public policy studies at Brandeis University in 1980, DeJong defined the IL
movement. In a short thesis and a series of other discourses, Dr. DeJong
referred to the movement as a “paradigm shift.” He compared the
elements of traditional rehabilitation with those of the IL movement. The
service delivery system was being changed. The consumer, not rehabilitation
professionals, was now taking control and defining his or her needs. Pity and
condescension were out; advocacy and “systems advocacy” were in. The
IL philosophy was simple: People with disabilities have the same rights,
options and choices as anybody else. And they were taking control of the
services, their lives and their destinies.
But what would this mean for
charities (or voluntary agencies) and the myriad disability-specific
organizations?
Next issue: The independent living movement today.
********************************
Pat Figueroa, Jr., is an artist,
author, advocate and co-founder of Independence Today. He resides in New
York.
First Article in this
Series
Second
Article in this Series. |
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