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 ![end of story]()
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.
