Schenectady reporter shines a light on disability rights activist Lucy Gwin

James M. Odato has written hundreds of stories and profiles throughout his career as a journalist.

Yet the Schenectady resident and acting editor of the Adirondack Explorer may never have met someone like Lucy Gwin; a former disability rights activist whose life story seems worthy of a movie, or maybe a book.

Odato wrote the latter with This Brain Had a Mouth: Lucy Gwin and the Voice of Disability Nation, which was published Friday by the University of Massachusetts Press.

She was a force, said Odato. People who met her haven’t forgotten her and it was an interesting exploration, to say the least.

Gwin was born in Indiana in 1943 and followed an impressive variety of professional backgrounds before becoming an activist. She worked in advertising at a well-known company in Chicago, ran a restaurant in Rochester, New York, and worked as a deckhand on a ship serving oil rigs off the coast of Louisiana, all before the age of 40.

However, her life changed completely in 1989, after a head-on collision left her with a head injury. She was sent to a rehabilitation center in Cortland, where she felt she was being held hostage and no agency was given to her health care. With a little help, she escaped the center and laid out the conditions there, using her writing skills to do so. Eventually, the Federal Bureau of Investigation got involved and this rehabilitation center was closed.

Throughout his life, from the age of 41 to 71, when he died, Gwin has championed the community of people with disabilities. She founded Mouth magazine in 1990 and it included interviews with leaders of the disability rights movement, essays and other articles. It has become one of the most important publications within the movement.

Needless to say, Odato had a lot of material to work with when it came to writing about Gwin’s life, although it took years of research to answer the question that started the story: Who was Lucy Gwin?

This is exactly the kind of research he conducted during his tenure at The Daily Gazette in the 1980s and 1990s, and The Times Union (1997-2015). This is also the type of research process he teaches students at the University of Albany, where he was an instructor for six years.

In 2018, he was on the hunt for a long story idea, combing through local and less local archives and repositories for the spark of a story that would work for a magazine article.

Instead, he discovered Gwin and the large collection of documents the University of Massachusetts had on the activist.

I am . . . reading this story about this woman’s account and the tapes of her hospital stay and how she escaped this rehab facility and how she started a war against a rehab chain that had kept her in this rehabilitation facility, said Odato. And I realized that this woman was not a typical head trauma survivor. She was a force and when I started reading copies of Mouth magazine I realized it could be more than a magazine story. It could be a biography.

In the years that followed, Odato scoured various issues of Mouth magazine, read as many files on Gwin as he could find, and conducted over 130 interviews with people who knew Gwin, as well as leaders of the movement for them. rights of persons with disabilities.

The story I concocted asked me to learn a lot about the disability movement and I’m sorry to say that, like probably many Americans, I didn’t know much about the disability movement. , said Odato. There is a great history with the disability rights movement which is little known or which has not had much press.

One of the leaders of the disability rights movement that Odato interviewed for the book is Nadina Laspina, who has faced the effects of childhood polio throughout her life. She wrote the front in This Brain Had a Mouth.
After Nadina agreed to write the front of this book, [she] was crossing the street in his wheelchair in Florida and was hit by a car and rushed to hospital, concussed. . . and they were talking about sending her to a drug rehab center, and when you say that to someone like Nadina or someone like Lucy Gwin, that means. . . a loss of independence, a loss of autonomy and Nadina suddenly felt this fear and felt a little closer to Lucy. [Thats] what she says in her front. It made Lucy’s story a little more intimate, Odato said.
This brain had a mouth, focused on capturing Gwin’s life, in all its ups and downs.
She managed to overcome substantial obstacles, said Odato. and there are a few episodes in her life that were really low that she worked on.
The book also delves into what Odato calls the largest minority group in the United States; people with disabilities, highlighting a community that often does not have the visibility it deserves.
Odato will be at the Karen B. Johnson Central Library in Schenectady to talk about the book at noon on December 13th. For more information about the event, visit friendsofscpl.org. To learn more about the book, visit umasspress.com.

What’s in a name?
When Gwins magazine came out in 1990 it called it This Brain Has a Mouth and after a few years it simply became Mouth magazine. The title of Odatos is a play on the original name of the magazine.

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