Lucy Gwin is not a name many in Rochester are likely to recall. But Gwin, who lived here from the early 1970s to the late ’90s, was a national figure in the disability rights movement.
Her story is told in a new biography, “This Brain Had a Mouth: Lucy Gwin and the Voice of Disability Nation.”
Gwin became radicalized after a stay in a rehabilitation facility specializing in the treatment of traumatic brain injuries. She was injured in a car accident on Lake Avenue in 1989. After hospitalization, Gwin was transferred to a rehab facility in Cortland. To her, the recuperation was more like imprisonment: Her arms and legs were restrained to her wheelchair. Gwin also felt she had no input over the course of her treatment. She called a friend who sprang her loose and drove her back to Rochester.
The experience radicalized Gwin, who in 1990 founded a national magazine espousing full rights for people with disabilities.
“She felt (rehabilitation facilities) were shaking down insurance companies, without providing decent services,” says Albany-based journalist James Odato, author of the Gwin biography and a former reporter for the Albany Times Union.
The FBI did eventually investigate the Cortland rehab facility, part of a chain. It was shut down later, in part due to Gwin, who testified before a congressional subcommittee investigating fraud in the rehab industry, says Odato, who spent three years doing research for the book and interviewed more than 130 people. “I wanted to figure out why she became a disability rights activist in 1990. Who was she before and who after and how did she become who she became.”
In 1990, from her Rochester home, Gwin founded a disability rights magazine, This Brain Has a Mouth (later changed to Mouth: Voice of the Disability Nation). She published the bimonthly magazine for 18 years, producing more than 100 issues. Costs for the magazine were paid for by donations—and Gwin’s credit card. The former advertising copywriter declined to accept advertising.
According to Odato, Mouth had a circulation of about 5,000; some of its readers included White House staff and health care providers. Gwin made sure low-income readers were able to receive Mouth, which publicized upcoming protests, rated centers for independent living and featured interviews with leaders of the disability rights movement, as well as moving first-person accounts of everyday people.
Gwin’s description of the magazine’s readership hints at her sense of humor and no-nonsense style: “We run the gamut from people who are barely dis-labeled to diseased pariahs. You don’t have to be disabled to join us. Everyone who lives in liberty and justice is welcome.” Says Chris Pulleyn, a friend, “She could be wickedly funny; her writing is so fresh; she didn’t sound like anyone else ever.”
After the passage of the Americans with Disability Act of 1990, Gwin, through Mouth, monitored how well the landmark law was being enforced. She also wrote a column alternately giving praise and jeers on issues affecting the disability community.
“She knew how to grab attention because of her advertising background,” Odato says.
Steven Brown, a retired professor at the Center on Disability Studies at the University of Hawaii and co-founder of the Institute on Disability Culture, says Gwin had a “monumental” impact on the disability rights movement.
Chris Pulleyn, a Rochester therapist, became friends with Gwin when both worked as copywriters at a Chicago advertising agency. Pulleyn, former CEO of Buck & Pulleyn Inc., clearly remembers their first meeting in 1966. She was in a recording studio splicing tape when Gwin entered the room and immediately began peppering the other young woman with questions: “Who taught you how to do that? How much do you make? You should ask for more money.”
“She was always like that—very free with her thoughts and feelings—to a fault,” Pulleyn recalls. “Lucy was not always very nice, but she was never boring. She could criticize you or say something wonderful.”
The cause closest to Gwin’s heart was the deinstitutionalization of people with disabilities so they could lead independent lives, says Odato.
She was also deeply opposed to the right-to-die movement.
“She was concerned the world would find it too easy to use (such a law) to end the lives of people with disabilities,” he notes.
As boldly colorful as her days were as a disability advocate, Gwin’s earlier life was just as offbeat and adventurous. The Indianapolis native moved from Chicago to Rochester, along with several friends, to join their meditation teacher, Philip Kapleau, who founded the Rochester Zen Center.
Besides working as an advertising copywriter, Gwin owned a restaurant in Rochester for five years—Hoosier Bill’s Homestyle Kitchen. The registration for the restaurant was filed with Monroe County on Jan. 1, 1973, under the name Lucy Hoosier. She later worked as a cook and deckhand on an oil rig off the coast of Louisiana, an experience she turned into the memoir, “Going Overboard,” published by Viking Press in 1982.
Gwin left Rochester in the late 1990s, moving to Topeka, Kan., and then to Washington, Pa., where she died at 71 on Oct. 30, 2014, at a center for independent living—one that she considered a model for the industry.
The activist never did forget her three weeks in a rehab facility, when she was temporarily robbed of her independence and her voice. Says Odato: “It dawned on her while she was dizzy, wobbly … her brain bruised and recovering, that people with disability lose agency over their health care, their independence; they are not listened to, they are patronized.” It was a fight that drove Gwin the rest of her life.
Donna Jackel is a Rochester-area freelance writer.