James M. Odato has written hundreds of stories and profiles throughout his career as a journalist.
Yet, the Schenectady resident and interim editor of the Adirondack Explorer has perhaps never come across anyone quite like Lucy Gwin; a late disability rights activist whose life story seems fit for a movie, or perhaps a book.
Odato has written the latter with “This Brain Had a Mouth: Lucy Gwin and the Voice of Disability Nation,” which was released by the University of Massachusetts Press on Friday.
“She was a force,” Odato said. “People who met her did not forget her and it was an interesting exploration, to say the least.”
Gwin was born in Indiana in 1943 and took an impressive variety of career paths before becoming an activist. She worked an advertising job at a well-known firm in Chicago, ran a restaurant in Rochester, New York, and worked as a deckhand on a ship servicing oil rigs off the coast of Louisiana, all before the age of 40.
However, her life completely changed in 1989, after a head-on collision left her with a traumatic brain injury. She was sent to a rehabilitation center in Cortland, where she felt she was held hostage and not given any agency over her healthcare. With a bit of help, she escaped from the center and exposed the conditions in it, using her talents as a writer to do so. Eventually, the Federal Bureau of Investigation became involved and that rehabilitation center was shut down.
Throughout the rest of her life, from age 41 to 71, when she died, Gwin advocated for the disability community. She founded “Mouth” magazine in 1990 and it included interviews with leaders of the disability rights movement, essays and other articles. It became one of the most significant publications within the movement.
Needless to say, Odato had plenty of material to work with when it came to writing about Gwin’s life, though it took years of research to answer the question that started the story: Who was Lucy Gwin?
It’s exactly the sort of research he’d done during his time at The Daily Gazette in the 1980s and 1990s, and at the Times Union (1997-2015). It’s also the type of research process he teaches students at the Univerity of Albany, where he’s been an instructor for six years.
In 2018, he was on the hunt for a long-form story idea, combing through local and not-so-local archives and repositories for the spark of a story that would work for a magazine article.
Instead, he discovered Gwin and the sizable collection of documents that the University of Massachusetts had on the activist.
“I’m . . . reading this story on the account of this woman and the records of her hospital stay and how she busted out of that rehab facility and how she started a war against a rehab chain that had kept her at that rehab facility,” Odato said. “And realized that this woman was not your typical head injury survivor. She was a force and when I started reading copies of ‘Mouth’ magazine I realized that this might be more than a magazine story. This could be a biography.”
In the ensuing years, Odato poured over various issues of “Mouth” magazine, read through as many files on Gwin that he could find, and did more than 130 interviews with people who knew Gwin, as well as leaders in the disability rights movement.
“The story that I put together required me to learn a lot about the disability movement and I’m sorry to say that like probably a lot of Americans, I did not know much about the disability movement,” Odato said. “There is a big history with the disability rights movement that is little known or hasn’t gotten a lot of press.”
One leader in the disability rights movement that Odato interviewed for the book is Nadina Laspina, who has been dealing with the effects of childhood Polio throughout her life. She wrote the forward in “This Brain Had a Mouth.”
“After Nadina agreed to write the forward for this book, [she] was crossing the street in her wheelchair in Florida and got hit by a car and was rushed to a hospital, was concussed . . . and they were talking about sending her to a rehab facility, and when you say that to someone like Nadina or someone like Lucy Gwin to them that means . . . a loss of independence, loss of agency and Nadina suddenly felt that fear and felt a little closer to Lucy. [That’s] what she says in her forward. It made the Lucy story a little bit more intimate,” Odato said.
“This Brain Had a Mouth,” focuses on capturing Gwin’s life, in all of its highs and lows.
“She was able to overcome some substantial obstacles,” Odato said. “and there’s a few episodes in her life that were very low ebbs that she worked through.”
The book also delves into what Odato refers to as the largest minority group in the United States; people with disabilities, spotlighting a community that often doesn’t get the visibility it deserves.
Odato will be at the Karen B. Johnson Central Library in Schenectady to speak about the book at noon on Dec. 13. For more information about the event visit friendsofscpl.org. For more on the book, visit umasspress.com.
What’s in a name?
When Gwin’s magazine came out in 1990, she called it “This Brain Has a Mouth” and after a couple of years, it became simply “Mouth” magazine. Odato’s title is a play on the magazine’s original name.