You Don't Know Lucy

From 1990 to 2008, Mouth Magazine was the leading voice of the disability rights movement. James’s Odato’s new book This Brain Had a Mouth: Lucy Gwin and the Voice of Disability Nation details the life of the magazine’s founder, Lucy Gwin.

Of the numerous notable activists in the disability rights movement (and there are many), Lucy Gwin’s name was one I had never heard up until a few months ago during a bout of some random, late night internet sleuthing when I discovered she was the founder and editor of Mouth Magazine. I had heard of Mouth Magazine years ago, and I knew it had been a publication centering around disability rights, one that deemed itself “the leading voice of the disability rights movement.” But I had never heard of Gwin.

Here’s Lucy Lucy Gwin was born in 1943. The result of a headon collision that left her with a brain injury, Lucy Gwin’s life path led her to both advocating for people with disabilities on various issues as well as founding Mouth Magazine. Journalist James Odato was inspired to write about Gwin after finding out about, and becoming intrigued by her after discovering documents pertaining to her in the archives at the University of Massachusetts at Amherst. As Odato states in the book, Mouth Magazine “.....touched on things that readers thought and experienced. She brought attention to the dearth of job opportunities, housing and training….the incompetence of

professionals, the indifference of government administrator, the plague of isolation, and the vulnerability to prejudice and abuse.”

Odato admits he had very little knowledge of the key figures or history of the disability rights movement upon embarking on telling Gwin’s story. Although This Brain had a Mouth tells the story of Gwin’s life and her activism in the disability rights movement, as well as her role as the editor of Mouth Magazine, it also serves as a good primer about the movement itself for the general public that might not know much about it. As Odato points out “We find out a lot about a lot of the civil rights movement, the women’s suffrage movement, the abolitionist movement….a lot of these movements get on the front page of newspapers, but….go to the local mall, walk up to 100 people and ask them the name of one disability rights leader….just one..out of 100 people, how many people are going to come up with a name?” The answer, unfortunately, is probably not many.

This Brain had a Mouth ultimately tells two stories. The larger story and the main focus of the book is of the founding of Mouth Magazine and the outlet it came to serve as for the disability community. The second story, one of no less importance, is of the battle Gwin fought to remedy the broken rehabilitation hospital system she found herself subjected to after her accident. After Gwin acquired her brain injury, New Medico Community Re-entry Systems, a brain injury rehabilitation center, the condition of which Gwin found to be deplorable.

While at New Medico, Gwin’s desires to be released and go home were attributed by the staff there as a symptom of her brain injury. Gwin begged friends to come rescue her, which they eventually did. Her time at the New Medico facility would spur her life of activism into what would eventually take the form of Mouth Magazine.

It’s evident from Odato’s book that Gwin herself had what one might describe as a prickly personality, yet, it’s debatable whether or not this was due to her brain injury. The book details stories from Gwin’s friends and associates that support this opinion, with one friend describing her as having a possible “borderline personality disorder,” and “fight or flight tendencies.” In reflecting on Gwin’s personality, Odato explains that he was “....trying to figure out what she was like prior to the accident and what she was like after the accident, and everything I could determine was…her personality was very much the same on both sides of the accident.”

During its years of publication, Mouth Magazine served as a sounding board for the Disability Community. As Odato says about the leaders of the Disability Rights Movement, “One of the things that Mouth Magazine was so good about is if you just read Mouth Magazine, “you would learn a lot about who these people were. You certainly will learn about the contemporary disability rights movement…” Odato observes, pointing out that the birth of Mouth Magazine coincided with the passage of the Americans With Disabilities Act in 1990 and documented the ongoing work of the disability rights movement after the Act’s passage. “She was writing about the post ADA period. Laws, just because they’re on the books don’t necessarily get honored,” Odato says. Through Mouth Magazine, Gwin aimed to hold those accountable who wouldn’t comply with the newly written Americans With Disabilities Act (ADA.)

Mouth Magazine was initially meant to serve as an outlet for brain injury survivors, like Gwin herself, to expose and reform what she viewed as the broken aspects of rehabilitation facilities, like the one she was subjected to after the accident. Yet over time, as Mouth Magazine grew, the kinds of authors in the magazine varied, with some by writers with disabilities themselves and others by parents of children with disabilities.

The deterioration of Lucy Gwin’s health and her inability to find a sucessor were the primary reasons why publication of Mouth Magazine came to an

end, as she was unable to find a sucessor to lead the publication. If you visit the website for Mouth Magazine today, you’ll find that the website exists, but no updates have been made to it since 2009. The website advertises what Mouth was as “....a bimonthly disability rights magazine whose readers’ only special needs are for human rights and straight talk.” It also notes on a bright yellow banner across the site’s homepage that the site was last updated in 2009 Lucy Gwin died in 2014, but the passion she had for the work she did remains immortalized in This Brain Had a Mouth. Still, the legacy Gwin left behind of “advocacy journalism,” as Odato calls it, lives on. Of Gwin’s work, Odato says, “She gave a voice to people she identified with. She had a calling. She had a remarkable career doing this work. In your lifetime you may not meet anyone who had as much passion for anything.”

Archives of Mouth Magazine can be found at https:// www.mouthmag.com/

This Brain had a Mouth is available from amazon. com.