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Coleman’s Winding Path Leads Her Back to Advocacy Role

By Mike Ervin

In 1996, Diane Coleman’s life took some wild and crazy turns.

She took over as executive director of Progress Center for Independent Living in suburban Chicago after the previous executive director and the entire board abruptly resigned in the face of a consumer-staff coup at the annual meeting. Two months later, Not Dead Yet, the direct action group she founded to oppose assisted suicide and euthanasia, staged its first action. At that action she met Stephen Drake, a graduate student at Syracuse University, who became her life partner. On top of all this, she was a longtime leader in ADAPT.

For the last 12 years, her life has been a hectic juggling act, leaving her few idle hours to unwind with Sudoku puzzles. But in July, Coleman left PCIL to become assistant director of advocacy at the Center for Disability Rights in Rochester, N.Y.

”I’ll leave behind the financial management issues and the administrative and bureaucratic issues of being an ED,” she said recently. “It was good to be doing that for a while, but it’s good to be getting back to my fist love and my origin, which is the advocacy part of the disability rights movement.”

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It’s a move necessitated by love as much as anything else. One of the reasons the PCIL job attracted Coleman was because it was a short drive from her hometown of Kalamazoo, Mich. Her father had been diagnosed with cancer. But now that both of Coleman’s parents have passed away, she went to Rochester so Drake can be with his family and parents. (Drake, who is from Rochester, had earlier left academia and his native upstate New York to be with her.)

Coleman has made several moves in her life: from Michigan to Los Angeles to rural Tennessee before going to Chicago. As a teen, she was energized and inspired by what she calls the “anti-authority” of the 1960s, particularly the civil rights movement. ”I really thought it was an analogy to how I felt — a sense of discrimination because of something that I could not control about myself,” she said.

Though adopted soon after she was born, Coleman said that wasn’t a source of pain. “My parents never made a big deal about it,” she said. “It was matter of fact.” They made it clear to her siblings that she was to be equally loved, she said. Her parents motivated her to get a good education and achieve, but because she had spinal muscular atrophy, they also put notions of her supposed limitations in her head: “I wouldn’t get married. I would always be at home.”

As a youngster, she attended the segregated Parkwood-Upjohn Elementary School in Kalamazoo. Although it was connected to a regular public school, the staff seemed to go out of its way to ensure that the pupils never mixed. When Upjohn pupils were taken to the library in the other school, the halls were as clear as if there had been a bomb threat.

“You never saw anybody else,” Coleman said. “I guess they just made sure they took us when nobody else was going to see us. And in the library, it would be just us.”

Colman was mainstreamed in junior high and high school, but she missed the camaraderie she felt with her fellow Upjohn classmates.

“My junior high and high school years were really painfully lonely. But it got better.” She was one of two wheelchair users in a junior high of 1,200 students. “I’m definitely a believer in full inclusion, but I really do see the value of being with other people with disabilities. That positive identity thing is everything, and I didn’t get it until I was in my early 30s.”

By then she was living in Los Angeles, another move motivated by love. The boy she met at a summer science-math training class in 1970 and married six years later was now a man headed for business school at UCLA. Coleman had just finished her undergrad work at the University of Illinois at Champaign-Urbana.

The marriage lasted only four years. “He was a business guy, and I was a hippie. We parted (as) friends.” Coleman stayed in Los Angeles and obtained her law degree. She became involved with the California Association of the Physically Handicapped, an activist group, and joined the board of the Westside Center for Independent Living in Los Angeles.

There she worked with such well-known disability rights leaders and thinkers as Carol Gill, Paul Longmore, Barbara Waxman and Doug Martin. “And suddenly I had the opportunity to redefine my way of thinking about things. So much made sense. It changed everything. I felt such a sense of identity and connection.”

And then ADAPT founder Wade Blank showed a video at a CAPH conference in 1985 of the organization‘s first national action, held in Washington, D.C., the previous fall.

“Up to that point I had always been telling myself, ‘Oh, we just need to educate people, and when they understand they’ll do the right thing.’ And then I saw in this video police officers throwing people in wheelchairs from a raised lift onto the concrete sidewalk. That showed me for the first time that this goes way beyond that.” She decided then that that was to be her calling.

Coleman was arrested twice at the 1987 action in Phoenix. In 1989, she and her roommate, Tom Olin, drove to the Reno action and never returned to Los Angeles. They took a six-month road trip before settling into a former country schoolhouse outside Nashville, Tenn. Coleman worked for the Tennessee Protection and Advocacy Agency and helped organize ADAPT locally and nationally. Her dream was to use the schoolhouse as a social justice retreat and conference center. But PCIL called.

caption in text that fololowsPhoto Caption: Diane Coleman, founder of Not Dead Yet (NDY). NDY opposes assistive suicide of people with disabilities.

Though Coleman has never been able to devote adequate time to Not Dead Yet while an executive director, “we’ve been successful in establishing that there is a disability perspective that is distinct from the other opponents of assisted suicide and euthanasia,” she said. “We still have a long way to go before there is adequate public recognition of the threats.”

She is deeply passionate about this issue because at the time of her awakening to the disability rights movement, Elizabeth Bouvia, another young disabled Californian, made headlines by petitioning courts to force her doctors to assist in starving herself to death. “At the time I was a young disabled woman like her,” Coleman said. "It changed my life, and it made me so much more aware of the depths of oppression. Killing is the ultimate discrimination.”

Coleman said PCIL has served as an incubator for direct action groups such as Not Dead Yet and ADAPT.

“Many CILs have embraced advocacy, even street level, over time. But we still have a long way to go,” she said.

Coleman believes that liberating people from nursing homes and institutions should be a core service for centers of independent living and that youth outreach is vitally important so that mainstreamed young people with disabilities will develop a positive disability identity a lot sooner than she did. Strategic use of media, especially the Internet, is what she sees as the key to reaching young people.

“If the disability movement can be portrayed as a positive identity in the popular culture, young people could be seeking us out rather than resisting having anything to do with us.”

At the other end of the spectrum, Coleman said, CILs can gain a tremendous amount of political power by helping aging baby boomers find hope in developing that same identity. “They’re going to want our expertise. If we can share our ideas about how society can welcome everyone, people who feel odd for whatever reason will feel welcome in our group.”

A man whom PCIL helped escape from a nursing home once gave Coleman a thank you gift. It was a picture of a globe in a wheelchair.

“It made me cry,” Coleman said. “It made me think about what Justin Dart said: that people with disabilities can lead the world. We’re in every country, every class, every ethnic group, every everything. We have the potential to provide leadership on issues that are going to be of overwhelming importance to society overall.”

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