Harriet McBryde Johnson - Beloved voice of the community remembered

An acerbic and insightful voice for the disability community, who aimed her pen at targets ranging from euthanasia to the Jerry Lewis Telethon, will write no more. Harriet McBryde Johnson, 50, unexpectedly died in her sleep, June 4. She will be honored August 17 at a memorial service in her hometown of Charleston, S.C.

Johnson lived most of her life in Charleston where, according to the Charleston Post and Courier, she was loved and admired. The newspaper described her as a “tenacious, well-known Charleston disability and civil rights attorney.”

A New York Times obituary recognized Johnson for challenging a Princeton professor’s contention that severely disabled newborns could ethically be euthanized. The Times called Johnson “a feisty champion of the rights of the disabled.”

Until age 13, Johnson attended a special contained school for people with disabilities. She was “invited to leave” when she worked toward getting a particularly bad teacher fired. Her parents convinced a private high school to admit her and her academic career took off from there. She had a B.S. in history from Charleston Southern University, a Master’s in Public Administration from the College of Charleston, and her law degree (J.D.) from the University of South Carolina. For most of her legal career, she had a private law practice representing clients on benefits-related issues and also represented clients facing discrimination using the Americans with Disabilities Act (ADA).

She came to my attention with “Unspeakable Conversations” in The New York Times in February 2003, her debate with Professor Peter Singer on disability and personhood. I was struck by her ability to view, what is a gut-wrenchingly emotional situation for most of us with disabilities, in a fairly detached way. She went to one of Singer’s lectures representing the “Not Dead Yet” disability consumers group, which argues against assisted suicides and euthanasia of persons with disabilities. She was invited to Princeton to debate Singer. Despite her strong feelings against his philosophic leanings, she believed he was in essence a nice man who was sensitive to her needs on stage, and with whom she exchanged a spirited e-mail correspondence, despite possible fallout from her friends in the disability community.

“The Disability Gulag” was another article published in The New York Times, in November 2003, on escaping the institutionalization that threatens so many people with disabilities. Johnson’s family had sufficient means to ensure she always had the resources needed to be as independent as she could be. She described the “gulag” to which persons with disabilities are consigned if institutionalized or placed in nursing homes. She dared to hope that this institutionalization would end in her lifetime.

Johnson weighed in on the Terri Schiavo debate in “Overlooked in the Shadows” in the Washington Post, in March 2005, where she pointed out that there wouldn’t have been support for Terri’s feeding tube to be removed if she wasn’t already considered disabled. She supported the intervention of Congress into the debate on behalf of Schiavo.

In “Wheelchair Unbound,” an April 2006, The New York Times article, Johnson writes about speaking at the U.S. Holocaust Memorial Museum.

“Alas for Tiny Tim, He Became a Christmas Cliché,” an article by Johnson in the in the December 25, 2006 The New York Times was filled with her delicious irony. She wrote that the crippled children’s school she attended as a teenager had considered staging a play based on Charles Dickens’s “A Christmas Carol.” But who would be Tiny Tim? Johnson quoted directly from the Dickens book: “Alas for Tiny Tim, he bore a little crutch, and had his limbs supported by an iron frame!”

“Alas!” Johnson wrote. “A little crutch! An iron frame! In our world, the crutch-and-brace kids were the athletic elite. They picked up the stuff we hard-core crips dropped.”

Johnson’s “A Step-by-Step Guide to Organizing a Protest Against the Jerry Lewis Telethon” is a sensible down-to-earth guide for organizing any demonstration, especially demonstrations that might be unpopular with the public. Find this guide on disability activist and poet Laura Hershey’s web site: www.cripcommentary.com.

To get a sound bite of Johnson’s humor and hear one of the last interviews she gave, you can listen to her interview on the program “ouch!, 13 Questions”. This program is geared toward British consumers with disabilities, in which the interviewer picks 13 questions to ask the interviewee. Check the BBC’s web site, www.bbc.co.uk, in the archived programs section, “Ouch!” on May 12, 2008

Fortunately, she gathered many of her writings into her 2005 memoir: “Too Late to Die Young: Almost True Tales of a Life.” The title comes from the first chapter in which she saw a Jerry Lewis telethon when she was very young. Lewis went on and on about finding a cure for muscular dystrophy, or his poster children, whom he referred to as “Jerry’s kids,” would die without reaching adulthood. She saw that they looked a lot like her, so she thought she probably would die soon. With each year that went by, Johnson would think: “Well at least I got to be a kindergartner before I die,” etc. She was a 30-year-old adult before she realized that everyone was eventually going to die. She came to the conclusion, an example of her acerbic wit, that since she was now more than 30, it was too late for her to die young.

The memoir includes the following events: attending a world-wide disability conference in Cuba, going to the 1996 Democratic National Convention as a delegate, being at the White House for the signing of the ADA legislation, trying an ADA case and her discussions with Singer.

I was fortunate enough to meet her when she was keynote speaker at a Minnesota Justice Foundation banquet soon after the Singer article appeared. Her voice was warm and she was a wonderful story teller. Johnson was a small woman, with a degenerative muscular disease with bones that could fracture easily and almost spontaneously. She had to be very careful about how long, and in what way, she was positioned in her chair. She weighed about 70 pounds. She needed help to perform almost all activities of daily living. She didn’t dwell on her own physical frailties and only spoke of them at this event to show how much she would have fit the profile of people Singer would have thought it appropriate to kill at birth. Her understated approach was more compelling than most emotion-laden debates.

Harriet McBryde Johnson touched the lives of thousands of people, both in person and through her writings. She will be missed but definitely not forgotten.

Memorial service for Harriet McBryde Johnson will be held in Charleston at 2 p.m. Sunday, August 17 at the ILA Hall 1142 Morrison Drive. Her family asks that memorials be sent to USC Law School for a scholarship in Harriet’s name. They hope to raise $100,000. Checks should be written to: USC Educational Foundation, “In Honor of Harriet McBryde Johnson” in the memo line. Mail to: Office of Alumni and Development, USC School of Law, 701 S. Main Street Suite 202, Columbia, SC 29208

The Gimp Parade, a very well-researched and up-to-date blog authored by Kay Johnson from Minnesota, has an index labeled “just for Johnson.” www.thegimpparade.blogspot.com

Laura Hershey has set up a page on her web site for persons to remember Harriet and celebrate her life. It can be found at www.cripcommentary.com.