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Cover Story

Chris Palames: One of the IL Originals

By Mike Reynolds and Patricio Figueroa Jr.

“The disability rights and independent living movement was born in the protest culture of ‘60," wrote Chris Palames in an essay on a website he’s building to chronicle the history of the disability movement. Palames, a pioneer of independent living and disability rights in New England, has been an advocate for disability rights for almost four decades. But the activism of this son and grandson of Greek immigrants began long before he was injured in a college wrestling match in 1967.

“I have a T-shirt that reads "Proud Son of an Illegal Immigrant," said Palames, who added, “I am not a fan of Lou Dobbs” (former CNN anchor and a vocal critic of illegal immigration into the U.S.). His father, for whom he was named, was born in Istanbul before the turn of the century and fought against his homeland of Turkey with the Greek army in the Second Balkan War (1913) and World War I. Unable to go home after the war, he came to the United States as steward on a freighter and jumped ship in New York Harbor.

Palames’ own activism began in his freshman year of college. The Civil Rights Act had just been passed that summer of 1964 despite the longest filibuster in Senate history. And six months later, Palames was camping in the snow on the sidewalk in front of the White House in a round-the-clock demonstration seeking stronger federal protection for the participants of the Selma-to-Montgomery march. At Wesleyan University in Connecticut he studied religion with John Maguire, a theologian who had been one of the first Freedom Riders and a friend and advisor to Dr. Martin Luther King Jr.

Chris Palames

Palames was paralyzed in the overtime period of a wrestling match when a cervical dislocation crushed his spinal cord. Before being transported to the hospital, he called on Dr. Maguire to tell his family -- already devastated by the death of his older brother -- what had happened. When he was injured, he said he was "feeling the effects of a concussion, and I should never have been on the mat. But in those days concussions were still treated like a joke, akin to a hangover.”

A year later he was back at school -- against the advice of psychiatrist who came to his room on the morning he was leaving “White Nine,” the rehabilitation unit at the Massachusetts General Hospital. “I had spoken to this guy maybe once for no more than 10 minutes, and he’s telling me I ought to stay in Boston and live with my family ‘cause he knows I’ve got a ‘need to fail.’”

Palames said he realized later how lucky he was that the doctor didn’t have the authority to force him to stay -- authority that so many other persons with disabilities are subjected to in psychiatric institutions.

At Wesleyan, Palames picked up the scattered threads of his academic career and graduated in the spring of 1970 during the student protests that followed President Richard Nixon’s escalation of the Vietnam War into Cambodia and the killing of students at Kent State and Jackson State. Around that time Maguire introduced him to Esalen Institute co-founder Michael Murphy, a meeting that led to a cross-country road trip and a four-month stay in rugged Big Sur country on the central California coast.

At Esalen, Palames was introduced to body-mind practices and alternatives to traditional Western medicine. “But I had no idea what was going on a little further north in Berkeley; if I had I would have met Ed Roberts a lot sooner than I did.”

Back in New England he incorporated the Stavros Foundation, naming it for his brother Stephen – Stavros in Greek -- who had died of respiratory complications after being hit by a car while hitchhiking on a snow-covered road. The foundation's stated mission was to introduce body-mind practices to people with disabilities, or so he thought until he was recruited to serve as the psychological consultant to the newly formed Boston Center for Independent Living.

With a laugh, Palames remembered visiting Elmer Bartels, later the co-founder of the Boston Center for Independent Living (BCIL), “who listened to me with my long hair, Indonesian dashiki (a colorful men's shirtlike garment) and flame orange pants and said, ‘You're really weird. You should go talk to Fred Fay -- he’s into weird stuff too.'” (Fay was part of the group planning the BCIL.)

The Rehabilitation Act of 1973 had finally been passed after Nixon had vetoed two earlier versions, and the compromise the president signed called for a "comprehensive needs study" of independent living rehabilitation. Fay was sent to Washington to work on the study, and “that was how I got recruited to fill his spot at the new CIL,” Palames said. "Fred had also encouraged me to go a conference in D.C. the summer before the CIL opened (in 1974). And that’s where I met Judy Heumann, who told me I needed to go see what was going on in Berkeley (Calif.)."

At the startup of the BCIL that September, Palames renewed old ties with Charlie Carr and Joe Tringali, whom he had first met at White Nine. “Charlie and Joe and I all realized pretty quickly that the Boston CIL was misnamed. It was a transitional living program more like the Cowell Residence on the campus at Berkeley that Ed Roberts and the Rollling Quads revolted against than the actual Berkeley CIL."

Carr, recently named commissioner of rehabilitation in Massachusetts, was the one who followed most closely the path Roberts had blazed, Palames said. And Tringali “was the guy who just wanted to be left alone to live his own life, until he realized that the only road to real independence was to get up every day and be willing to fight for it.”

Taking Heumann's advice, Palames started visiting Berkeley whenever he had a chance for a week or two at a time. There, he got to know Roberts, Mary Lou Breslin and Pat Wright, and he spent as much time as he could with Heumann. “I call her ‘my muse,’” he said.

In Massachusetts, Palames challenged the policy of linking independent living to transitional living and personal care assistance, a program that provides services to those who need help with day-to-day activities. Finally he broke ties with the Boston CIL and went on to guide Stavros to become the first center for independent living in the country to serve a multicounty region, stretching from Connecticut to the Vermont border. Tringali eventually left Boston and moved into the farmhouse that became the hub of the Stavros outreach approach to independent living; Carr and his wife, Karen Langley, still describe it as the time Tringali went off “to live in the commune.”

“Chris has always been an idea guy,” said Pat Figueroa, another pioneer of independent living. “He always had a sense of the big picture. Others would stick around to work out the details and figure out how to make it all work, but Chris has always been a visionary of the independent living movement.”

Palames' crowning achievement came in the summer of 1982, when he was asked to moderate a conference in East Lansing, Mich., which included the creme de la creme of the independent living movement. Conferees included Barry Bernstein, Barbara Bradford, Marca Bristo, Bernie Cantu, Carr, Figueroa, Lex Freiden, Robert Funk, Heumann, Michael Moore, Teresa Preda, John Ross, Tony Serra, Max and Colleen Starkloff, Michael Winter, Ray Zanella, and a list of observers and invitees such as the late writer Gini Laurie.

Palames was responsible for keeping all the egos under control and the discussion on track with the goal of the conference: the continued growth of the independent living movement and its funding. The conference's final report was titled "Challenges of Emerging Leadership: Community Based Independent Living Programs and the Disability Rights Movement 1983." The final report to the Mott Foundation (a private, grant-making organization based in Flint, Mich.), which helped fund the conference, was drafted by the Institute for Educational Leadership.

The final report took a year to finalize; Palames recalled the countless pages of chart paper notes and the tape recordings. Afterward, Palames was now known to the movers and shakers on the national stage. His next move was to establish a local base.

After six years at Stavros, he left to establish Independent Living Resources, a “kitchen table top non-profit,” as he calls it. He has managed to keep it small and uncomplicated, and he still operates it from his home. Palames later went on to play a key role in the development of the Vermont Center for Independent Living and then spent four years in Massachusetts state government in the mid-1980s working with a South Dakota populist named Jim Gleick. The latter's "'Gunfight at the O.K. Corral'-style of advocacy,” according to Palames, was shaped in South Dakota as an ally of the Native American (or the American Indian) Movement and a witness to its brutal suppression.

In 1988, Palames left state government to work on Michael Dukakis' presidential campaign. Then he took Independent Living Resources “out of mothballs and caught the great wave of the ADA." He did training seminars on disability rights law around the country with the Disability Rights Education and Defense Fund (DREDF), Boston’s Adaptive Environments Center – now the Institute for Human Centered Design -- and AARP's National Training Project. And he developed a close relationship with Ron Mace, the movement's greatest design innovator over the last decade of his life.

When asked how his early involvement in civil rights influenced his perspective on independent living and disability right, Palames said: “All of us who came into the disability movement in those early years were inspired by the civil rights movement and the women's movement … Our politics and our whole world view was shaped in the ‘60s. It just took some like me who were isolated outside of cities a little longer to make the connection.”

Palames is cautiously hopeful about the future of the disability movement. “There are things going on today that feel a little like the '60s. This 'Age of Obama' is a time when the forces of change are obviously quickening, but we need to step up fast and strong to make it happen, or we’re going to get run over by the reactionaries and the fear mongers. My best bet is that we are going to see a new generation of leaders coming to the fore who are artists and communicators and media savvy. It’s not going to be another generation of CIL executive directors; that’s not what the times are calling for. What we need today are powerful and creative ways to use the new media.”

Palames' web site, Another Turn At The Wheel, can be found at: http://www.independentlivingresources.net/index.html .

Mike Reynolds is a freelance writer and short movies producer. Patricio Figueroa Jr. is the editor and publisher of Independence Today.

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