On June 14, 1989, 46-year-old Lucy Gwen was driving north on Lake Avenue on her way to a date, her dog Digger in the back seat, when an oncoming vehicle crashed in her face. She bounced her head off the door and got her into a twitch.
This accident became the major turning point in her life – but not because of the physical injuries she suffered. Instead, she was more profoundly affected by her subsequent stay at a brain injury rehabilitation facility in Cortland.
She said her rights were ignored and her desire to leave was dismissed as a symptom of traumatic brain injury. Gwen said she saw her roommate being raped by the staff and feared the same would happen to her.
James M. said: Odato, whose biography was about Gwen: This brain had a mouth, released in October by the University of Massachusetts Press. “They treated her as a person…without any value as a human being but only their value as a source of income.”
A month later, she succeeded in finding her ex-boyfriend, who agreed to examine her. She’s moved into an apartment off Monroe Street, still recovering physically but flaring with indignation.
In July 1990, released the first issue of the magazine, which will become Mouth, the feisty and influential disability advocacy outlet that Gwen is reminded of.
That is if it is remembered at all. Despite nearly 20 years of emotional activity, Gwen remains little known, including in Rochester where she has done much of her work. She passed away in 2014 at the age of 71.
“She made a place for what would be considered a radical voice for disability rights, and she was fierce in that voice,” said Center for Disability Rights CEO Bruce Darling, who knows Gwen well. “It basically made us think of ourselves differently…
“I don’t think a lot of people in Rochester realize that she was here, and the impact she had,” Darling said. “We have a great civil rights tradition here, and for me she was a part of that.”
Ten feet from a hurricane
Before Lucy Gwen began her career in disability advocacy, she was an advertising copywriter for a reputable company in Chicago. Her former classmate and friend, Chris Boleyn, remembered writing commercials for kitchen cleaning products, deodorant, and “aging pills,” among other things.
“She was one of the smartest writers I’ve ever met,” said Pauline.
With her creative intelligence and keen awareness came a fickle personality; The tension between these two characteristics was a defining theme of Gwen’s life.
She has left a field of wreckage from broken relationships in her wake, including with her ex-husbands and two children. “Lucy was very good at keeping people from her,” a former friend recalls in Odato’s book. Another said spending time with her was “like being 10 feet from a tornado.”
Gwen was a woman of diverse interests and talents. She spent a year on an oil rig in the Gulf of Mexico and wrote a memoir about her experience. She ran a restaurant, Hoosier Bill’s, on Monroe Street in the 1970s. She was fascinated by crows, watching them intently and making omens of their course.
“Lucy can be really mean, but she’s never been boring,” said Pauline, who shared an apartment in Chicago and was close with her again in Rochester after they moved east in the early 1970s. “You just never knew what you were going to do next.”
It is not clear what lasting effect the car accident had on her. A friend he saw in the hospital immediately afterwards remarked that it was “the same hole it’s always been”.
Darling said there was no doubt she had suffered lasting brain trauma, although the effects are difficult to determine.
Odato, who interviewed nearly 130 people in writing his book, said he relied on Gwen’s self-identification.
“I only know that she considered herself a member of the Handicapped Nation from the time of that incident onwards,” Odato said. “The longer she lives, the clearer it becomes that she is a member of the Nation with Disabilities.”
Keep the activity alive
first issue of This brain has a mouth – later shortened to Mouth – Passed in the summer of 1990, at the same time President George W. Bush signed the Americans with Disabilities Act into law after years of advocacy.
Veteran disability rights activist Nadina LaSpina wrote in the foreword to Odato’s book: “At the time, our movement was going into a much more serious and “tame” situation.” We needed Lucy to keep the passion and excitement of real activism alive, with her self-branding from the press (and) its shameful, heart-wrenching articles.”
The magazine went on to issue 109 issues over the course of 18 years, praising those Gwen considered genuine activists and berating those involved in bureaucracy. Most of the copy came from Gwen herself or from reporters who reported their own experiences with the disability.
“Lucy Gwen was writing for an audience of people, many of whom were in institutions, in a home, or in their own homes — people who were members of a disabled state,” Odato said. “These were people who didn’t get a lot of attention from the mainstream media, then or now.”
Gwen left Rochester in 1998, and moved the magazine’s operations–“22,000 pounds of chaos,” as she called it–to a center for independent living in Topeka, Kansas. She later moved to Washington, Pennsylvania, where she was living at the time of her death.
Mouth It wasn’t a profitable venture at all, and Gwen didn’t have much money after she left her first advertising career. She refused to run ads and lived mostly on Social Security benefits, eventually leaving more than $100,000 behind in a passive state.
Her massive papers are kept in the archives of the University of Albany, where Odato, who was a longtime correspondent at Albany, is located Times Unionthrough her story.
Some of the people he invited to the book refused to speak, and still struggle with their interactions with her. Others refused to use their full names. One way or another, they all had memories.
“Those people who interacted with Lucy — if you call them 25 years after you last saw them, they remember her very clearly,” Odato said. “She was someone who definitely left an imprint.”
Darling, of the Center for Disability Rights, said Gwen’s biggest contribution has been to provide a platform for those who have been denied a say.
“She was a wonderful woman,” he said. “I miss her. Everyone was a little afraid of her.”
As Gwen herself said, she talked about Mouth And those she saw as co-fighters: “We weren’t saints. We just wanted to see justice done.”
Contact staff writer Justin Murphy at jmurphy7@gannett.com.
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