Very sad news: disability rights activist, lawyer, and writer Harriet McBryde Johnson died on Wednesday night. She was 50 years old.
The following notice comes from The Post and Courier of Charleston, SC:
Harriet McBryde Johnson, a well-known Charleston disability and civil rights attorney, died Wednesday.
"She worked yesterday. It's a shock to everybody," said friend and attorney Susan Dunn.
She was born July 8, 1957, and had been a Charleston resident since age 10.
She told The Post and Courier that she became an attorney because her disability-rights work had taught her something about the impact of law on how people live.
She specialized in helping people who couldn't work get Social Security benefits.
She was chairwoman of the Charleston County Democratic Party executive committee (1988-2001); city party chair (1995-2000); secretary of city party (1989-95); national convention delegate (1996); president, Charleston County Democratic Women (1989-91); County Council candidate (1994); and a certified poll manager.
Funeral arrangements are pending at Fielding Home For Funerals.
Johnson, who was born with a neuromuscular disease, drew national attention for her opposition to "the charity mentality" and "pity-based tactics" of the annual Jerry Lewis muscular dystrophy telethon. Lewis told the Chicago Tribune he had no intention of making peace with opponents such as Johnson. He likened the idea of meeting with them to entertaining Hezbollah or insurgents in Iraq.
The protests started after Lewis wrote a 1990 Parade magazine article in which he imagined being disabled. Among his conclusions, "I realize that my life IS half, so I must learn to do things halfway. I just have to learn to try to be good at being half a person."
Beth Haller, a friend and collegue of Johnson, has written this post about her at Media Dis&dat, and pulled together the following list of some of her writings:
"Unreasonable Conversations" in The New York Times, Feb. 16, 2003.
"The Disability Gulag" in The New York Times Nov. 23, 2003. After its publication, the NYT reported: "A torrent of letters cheered Harriet McBryde Johnson's 'courageous' article, which inspired wide-ranging meditations on life and death."
"The Way We Live Now: Stairway to Justice" in The New York Times, May 30, 2004.
"Wheelchair Unbound" in The New York Times, April 23, 2006
"Alas for Tiny Tim, He Became a Christmas Cliché" in The New York Times, Dec. 25, 2006.
"Overlooked in the Shadows" in The Washington Post, March 25, 2005.
"Not Dead at All, Why Congress was right to stick up for Terri Schiavo" in Slate, March 23, 2005.
Her memoir Too Late to Die Young in 2005, which garnered many positive reviews including this one in The Washington Post: "Harriet McBryde Johnson's witty and highly unconventional memoir opens with a lyrical meditation on death and ends with a bold and unsentimental sermon on pleasure. Born with a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With assistance, she passionately celebrates her life's richness and pleasures and pursues a formidable career as an attorney and activist. Whether rolling on the streets of Havana, on the floor of the Democratic National Convention in Chicago, or in an auditorium at Princeton debating philosopher Peter Singer, Harriet McBryde Johnson defies every preconception about people with disabilities, and shows how a life, be it long or short, is a treasure of infinite value."
The youth fiction book Accidents of Nature in 2006, which follows 17-year-old Jean, who has cerebral palsy, to a summer camp for kids with disabilities where she questions her earlier years spent with little contact with other people with disabilities. I read the book last summer and found it gives fantastic insight into the lives of teens with disabilities, something rarely seen in literature. I hope it becomes a children's literature classic, especially among kids with disabilities, because it truly gives voice to their experience.
"A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon" in Crip Commentary.
An interview she gave to BBC's Ouch! May 18, 2008.
Harriet McBryde Johnson was named the New Mobility Person of the Year in 2004.
The University of Notre Dame has a biography of Harriet McBryde Johnson on its Web site.