Gwin, Lucy

As a writer, editor, and activist, Lucy Gwin had a profound impact on the disability rights movement. Her sharp wit and even sharper analytical skills became the driving force behind Mouth, the magazine she produced for nearly twenty years and which reflected her unwavering commitment to the principle that disability rights was an essential part of the civil rights movement.

Born in Indiana in 1943, Gwin lived “a lot of lives,” in her own estimation, working in advertising, as a dairy farmer, civil rights activist, a writer, mother, and laborer on oil rig support boats in Louisiana, all before the age of 40. While living in Rochester, N.Y., in 1989, however, her life took a sudden turn. After a head-on collision with a drunk driver left her in a coma for three weeks, Gwin was remanded to the New Medico Brain Rehabilitation Center for care for traumatic brain injury. According to her account, she discovered not care, but a world of isolation, patient abuse, and powerlessness, and she asserted that New Medico would not release her until her health insurance funds ran out. After enlisting a friend to help her escape, she used her skills as an organizer and writer to confront the health care system that had held her against her will. Working with Ken Collins and other brain injury survivors, she attempted to push the Brain Injury Association of America into becoming a more consumer-oriented agency and she waged a campaign to expose conditions at New Medico which eventually resulted in shutting down the facility.

In her efforts to build a grassroots movement, Gwin increasingly advocated for a cross-disability approach predicated on the recognition that arguments for disability rights were fundamentally arguments for civil rights. To provide a voice for the movement, she founded the influential Mouth Magazine in 1990, becoming bot only its primary writer, but its designer, publisher, and editor. Through the often acerbic pages of Mouth and her other activism, Gwin took on a wide range of issues over the next twenty years, insisting on the necessity of an all-disability rights approach, advocating for home- and community-based services, critiquing the concept of “normality” and the myriad systemic failures to cope with disability. As a supporter of the group Not Dead Yet, she became a vocal opponent of the concept of “death with dignity” and physician-assisted suicide, arguing they were a threat to the disability community by privileging cost reduction over human lives.

After years of struggle with her health, Gwin died at her home in Washington, Pa., on Oct. 30, 2014.