|  |
Remembering
Harriet McBryde Johnson By Joyce Bender
Bender Consulting Services, Inc
On June 4, 2008, we lost a great American civil rights leader, Harriet
McBryde Johnson, at the age of 50. Harriet was a well known disability
and civil rights attorney who fought for the right for life over death,
for Americans with disabilities.
She graced the cover of the New York Times Magazine in February 2003, in
the article Unspeakable Conversations, about her meeting with Professor
Peter Singer at Princeton University. Peter Singer, a professor of
bioethics at Princeton University, has said, "It does not seem quite
wise to increase any further draining of limited resources by increasing
the number of children with disabilities." Harriet stated in the
article, "He (Singer) simply thinks it would have been better, all
things considered, to have given my parents the option of killing the
baby I once was, and to let other parents kill similar babies as they
come along and thereby avoid the suffering that comes with lives like
mine and satisfy the reasonable preferences of parents for a different
kind of child."
Not one to miss an opportunity, Harriet went to meet with Singer in
person to debate the issues of infanticide and euthanasia as public
policy "choices" for people with significant disabilities. Harriet
stated in the article, "Singer also says he believes that it should be
lawful under some circumstances to kill, at any age, individuals with
cognitive impairments so severe that he doesn’t consider them persons."
When I first read about Harriet, I was so impressed with her courage and
her determination to succeed and then, I felt great shame. Why are we
people with disabilities accepting this fate. Why isn't the world
outraged!
Diane Coleman, the Founder and President of Not Dead Yet, has and does
speak out daily on this issue. She is another great champion of
preserving the choice of life for people with disabilities. She shares
the same disability as Harriet, and she is also an attorney and
formidable opponent to the euthanasia cause. Not Dead Yet's website is
www.notdeadyet.com. Andy Imparato, from the American Association of
People with Disabilities (www.aapd.com), and his associate, Anne
Sommers, have also spoken out on this issue and had a great editorial in
the Washington Post on May 20, 2007 entitled, Haunting Echoes of
Eugenics. In the editorial, Andy and Anne talk about the fact that
today over 80% of pregnancies diagnosed with Down syndrome end in death
and that this outcome is accepted and often encouraged.
Several years ago, I read a great book recommended by the American
Association of People with Disabilities entitled, War against the Weak,
by Edwin Black. I was horrified. I remember stating to several of my
friends, "Why didn't I read this in history class." War against the
Weak, is about eugenics and connects the atrocities of World War II and
the early 20th century eugenics movement in the United States. Edwin
Black also talks about the correlation between eugenics and genetics,
and about what he refers to as NewGenics. He states, "First, newgenics
will create an uninsurable, unemployable, and unfinanceable, genetic
underclass." This is what Harriet McBryde Johnson fought against her
entire life.
Harriet McBryde Johnson, a brilliant attorney, was a woman with spinal
muscular atrophy. Her power came from her words, spoken and written,
for those she felt were being denied the choice of living. She spoke
out for the life of Terry Schiavo and stated, "This is not about
end-of-life decision-making. The question is whether she should be
killed by starvation and dehydration."
Harriet believed that if we did not stop this madness, it could become a
way of dealing with those not desirable. Pondering this thought makes
you understand more why we have a 65% unemployment rate for Americans
with significant disabilities. If we have those saying death over
disability, what message does that send? It certainly does not imply
that the employment of a person with a significant disability is
desirable.
As Harriet pointed out, the best and brightest in philosophy or
bioethics at Princeton would be taught to think of people with
disabilities in such a horrible way.
Singer's book, Rethinking Life and Death, had a passage reprinted in
2000 in Writings on an Ethical Life. These two books are used in high
schools and colleges when teaching bioethics. Here is the horrifying
passage that so much reminds us of what Harriet was speaking out
against:
"To have a child with Down syndrome is to have a very different
experience from having a normal child. It can still be a warm and loving
experience, but we must have lowered expectations of our child's
ability. We cannot expect a child with Down syndrome to play the guitar,
to develop an appreciation of science fiction, to learn a foreign
language, to chat with us about the latest Woody Allen movie, or to be a
respectable athlete, basketballer, or tennis player."
In March 2006, Harriet spoke at the United States Holocaust Memorial
Museum on "Deadly Medicine" a disability rights perspective on the Nazi
Euthanasia program to exterminate people with disabilities. People with
disabilities were one of the first groups Hitler chose to destroy.
Between 1939 and 1941, over 200,000 people with physical and
intellectual disabilities were murdered by Hitler. This was a group
felt to be not desirable. This haunting thought is occurring today in
America. Harriet would have been executed without a doubt; since I have
epilepsy, I too would have been in that group.
Harriet is a leader we must honor and remember in our disability history
as a courageous warrior who spoke out for us all. She passed away, but
her words and her legend and her courage will live on, no matter what -
sorry Singer.
|