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“Remembering Lucy Gwin” by Steven E. Brown

Remembering Lucy Gwin

Steven E. Brown, Institute on Disability Culture 

Lucy Gwin passed into whatever comes next on Oct. 30, 2014. Her impact on the disability rights movement is monumental. Social media responses to her passing were quick, including my own, “Another hero gone, Lucy Gwin, creator of This Brain has a MOUTH, which became the Mouth, one of the most radical disability rights magazines, passed on last night. Watch out Universe!”

What made Lucy so special? As Teresa Torres, commented, “She was the ultimate wordsmith and didn’t have an ounce of bull in her” (all quotes from Facebook unless stated otherwise*).

Lucy was the editor and force behind the Mouth until she became too ill to continue a few years ago. She struggled to find someone to mentor and succeed her, but no one appeared. Janine Bertram observed that Lucy was “the one person I believe is irreplaceable in the disability movement. Compromise was not in her repertoire.”

Mona Hughes wrote in the Orlando Sentinel on Jan. 22, 1998, after the Mouth had been around for eight years, “MOUTH won the Utne Reader alternative press award but turned it down because it was in the category of special interest. ‘Since when was anybody’s civil rights special?’ Gwin asked. I consider this publication a must-read when it arrives in my mail. I think it should be for every disabled person.”

an image of a Jan/Feb 1992 cover of Mouth Magazine that features a person in a jail cell with his foot tied to a ball-and-chain and his hands holding the bars at his window. The caption below this image reads: "If being disabled isn't a crime, why are more than three million of us locked up?"

Mouth began in 1990 after Lucy was hit by a drunk driver and acquired a brain injury. She described her escape from a brain injury rehabilitation facility after three weeks. Within a few years, Mouth Magazine: Voice of the Disability Nation caught the attention of disability rights advocates all over the country. I recall someone once saying Mouth should be in every physician’s office.

Fred Pelka, a chronicler of the disability rights movement, wrote, “the disability rights community lost a good friend, a talented writer, and a hell of an advocate when Lucy Gwin died this past week. The founder, publisher, and editor of Mouth magazine, the author and editor of ground-breaking books and articles, and an invaluable source of information about disability activism over the past thirty years, Lucy was an advocate to the end, going to bat not only for herself, but for anyone who has ever had to deal with the social service or health care bureaucracy. She was a tireless foe of nursing homes and institutions, and was personally responsible for bringing down at least one corrupt and abusive multi-million dollar nursing home chain.”**

In researching what to write about Lucy I came across an “Occupy” blog by “Mickey Z” who wrote, “To paraphrase, Lucy basically expressed appreciation that—finally—a “normal” radical like me “got it” about disability issues. A friendship was born, I soon became the “token normal” on Mouth’s writing roster, and I learned to adore their motto: PISS ON PITY. In 2005, I even included a chapter about Lucy and related issues in my book, 50 American Revolutions You’re Not Supposed to Know [which has now become another “must” on my own reading list…].

Lucy, who was 71 when she moved on, worked in advertising, on oil rig support boats in Louisiana and was a writer and mother prior to her brain injury and subsequent founding of the Mouth.

Pelka wrote, “One of my most treasured possessions is my inscribed copy of her first book, Going Overboard: The Onliest Little Woman in the Offshore Oilfields. Why that book—so beautifully written, and such a compelling story—didn’t end up number one of the New York Times best-seller list is one of the sad mysteries of life.”

Lucy liked talking on the phone and writing notes telling you what she thought of you (mine were fortunately good for my ego, but they could be the other way around). I was thrilled when she published a piece of mine on independent living, (July/August 1992) “The Ten Commandments of Independent Living.” Over the years, we communicated periodically, had a chance to meet once, I think (oh, the aging memory), and when we could Lil and I were proud to be one of many supporters of the Mouth in its later years.

Lucy was a force of nature. In an email Teresa Torres recalled, “’Lucy Gwin told me to call you’ were the keys to connecting with the greatest people in the world.”

When I learned of Lucy’s passing, I sadly added her name to my poem, “Martyrs.” But, perhaps the best way to sum her up comes from disability rights advocate, parent, teacher, writer, and friend Michael Bailey, who often wrote for Mouth, and who posted several “Lucyisms” on his Facebook page. Here’s one:

Lucyism #3.

“Dicks are the best toys ever. Hell I could play with one all day.

But you know what? It’s a waste of damn time. Everybody should get over that.
There’s a lot of hard work to do.”

(You can get a glimpse of Lucy about a month before her passing, with disability rights photographer Tom Olin at:

*All quotes used with permission of the authors or are pubic material.

** Pelka’s tribute also included how Lucy is memorialized in academia: “Lucy Gwin’s oral history recordings are archived at the Bancroft Library, University of California at Berkeley. Her papers—including a complete collection of Mouth magazines—are available at the W.E.B. Du Bois Library, University of Massachusetts, Amherst.”

Photo credit: Unknown. Image accessed from:

Prough, Andy and Catherine Malone. (1998). The Great Brain Injury Scam. Freedom Magazine., 30, 2. Retrieved from


Bertram, Janine. (Oct. 31, 2014).

Brown, Steve.

Brown, Steven E. (1994-2014). “Martyrs.”

Brown, Steven E. (July/August 1992) “The Ten Commandments of Independent Living,” This Brain Has a Mouth, pp. 20-21.

Gwin, Lucy. (1982). Going Overboard: The Onliest Little Woman in the Offshore Oilfields. Viking Press.

Gwin, Lucy. (Sept. 2001). I’m Not One of Them. Retrieved from

Hughes, Mona. (Jan. 22, 2998). Magazine Mouths Off to Tell Disabled Readers the Truth. Orlando Sentinel. Retrieved from


Pelka, Fred. (Nov. 1, 2014).

Prough, Andy and Catherine Malone. (1998). The Great Brain Injury Scam. Freedom Magazine., 30, 2. Retrieved from

Torres, Teresa. (Oct. 31, 2014).

Zezima, Michael. (2005). 50 American Revolutions You’re Not Supposed to Know: Reclaiming American Patriotism. Disinformation Books.



Older white man with gray hair and a long beard. He is wearing glasses and a light purple turtleneck.Steven E. Brown, Co-Founder, Institute on Disability Culture (IDC), and Professor and Disabilities Scholar at the Center on Disability Studies (CDS), University of Hawaii (retired, currently Affiliate Faculty), earned a doctorate in history from the University of Oklahoma in 1981. In the 1980s, he worked at and directed an independent living center in Oklahoma, and organized numerous community coalitions. In 1990, he moved to California where he served as Training Director at the World Institute on Disability. After moving to New Mexico, he co-founded the not-for-profit Institute on Disability Culture, with his wife Lillian Gonzales Brown, in 1994.

Brown’s books Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (2003) and Surprised to be Standing: A Spiritual Journey (2011) are available from online booksellers. Other publications include Investigating a Culture of Disability:  Final Report (1994), resulting from the first U.S. funding for research about Disability Culture, from the National Institute on Disability Rehabilitation and Research.

Brown relocated to the California Bay Area in summer 2014, but continues to work with the University of Hawaii CDS, which sponsors his 2015 online course, “Disability History and Culture: From Homer to Hip Hop,” for which details are available at:


Twitter:  @disculture


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