Wednesday, June 4, 2008

Disability community saddened by devastating loss of disability rights activist, attorney Harriet McBryde Johnson

Harriet McBryde Johnson

The unexpected news shocked disability activists June 4 when they found out that South Carolina disability rights activist, attorney and author Harriet McBryde Johnson had died June 3.

Few obituaries have been published yet, except one in her hometown newspaper in Charleston, S.C. Johnson was in the disability rights spotlight for a number of years through essays against assisted suicide in the major newspapers, her 2005 memoir, Too Old to Die Young, her youth fiction book Accidents of Nature, her numerous years of protest against the Jerry Lewis Telethon and her legal and advocacy work on behalf of people with disabilities in South Carolina and around the country.

Here's what Ability Magazine wrote about her: "The embedded cultural response of pity prevails—a bias that Harriet McBryde Johnson has been fighting most of her life. As a lawyer she fights for her clients’ rights in her native state of South Carolina; as a national advocate for civil rights for people with disabilities, she fights to change embedded cultural biases. Through columns published in The New York Times Magazine, The Washington Post and Slate Magazine, Johnson has challenged the reasonable people in America to broaden their perspectives and shake loose the old stereotypes. In her new book, Too Late to Die Young: Nearly True Tales from a Life, she gives a rich and humorous picture of a full southern life. But interlaced is a nod to the insidious harm caused by the myth of the tragic life with disability. Born with a congenital neuromuscular disorder, she describes how she felt sentenced to death as a child by the images of pity on the Jerry Lewis telethon. As an adult she has seen this bias pervade other areas of American culture, such as the beliefs of Princeton’s controversial bioethicist Peter Singer, who has proposed that babies with disabilities should be killed at birth—and whose arguments she has tactfully disputed in a joint lecture at that campus."

I knew Harriet through her writings and the occasional emails we would exchange about media and disability topics. She always supported my work and was a disability activist who truly knew the significance of media images of disability and their impact in the lives of people with disabilities. The above picture made it onto the cover of the New York Times Magazine, and Harriet said it took much wrangling to get one that she felt truly reflected who she was, rather than one that would invoke pity.

She was a spirited and tireless crusader for disability rights, and she will be sorely missed.

Here's a listing of some of her numerous writings and a few of her interviews:

  • "Unspeakable Conversations" in The New York Times Magazine, Feb. 16, 2003.
  • "The Disability Gulag" in The New York Times Magazine 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.
  • "Legitimizing the Unthinkable: A Disability Rights Perspective on Nazi Medicine" was a lecture she gave at the U.S. National Holocaust Memorial Museum March 9, 2006. You can listen to the program here.
  • An interview she gave to BBC's Ouch! May 18, 2008.
  • CSPAN interviewed her about Too Late to Die Young on April 8, 2006.
  • She was interviewed by NPR about the Terry Schiavo case April 6, 2005.
  • On April 3, 2005, Stephen Drake from Not Dead Yet, and Harriet spoke about the life and legacy of Terri Schiavo on Greg Smith's Strength Coach radio show. You can listen to the show from its archive.
  • She received the Jean Galloway Bissell Award on October 13, 2005 for her work as a woman lawyer. The award is named for Jean Galloway Bissell (1936-1990), a lawyer who blazed a trail for other South Carolina women lawyers in fields as diverse as the private practice of law, banking and the federal judiciary. Recipients of the award are recognized by the South Carolina Women Lawyers Association for their distinguished and noteworthy service to the public and to the legal profession; achievement of professional excellence; and participation in activities that have paved the way to success for women lawyers on the national, state or local level.
  • She 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.