Special Article

Remembering Harriet McBryde Johnson

By Joyce Bender [view bio]
President and CEO of Bender Consulting Services.

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.”

Harriet went to meet with Singer to debate the issue of the choice of aborting children 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 20 th 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.

Joyce Bender is President and CEO of Bender Consulting Services. Please direct questions for Joyce to info@disability-marketing.com.