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Harriet McBryde Johnson

On June 4, 2008, we lost a great American civil rights leader, Harriet McBryde Johnson. Harriet died at the age of 50 and was a well-known disability and civil rights attorney who fought for the right for life over death for Americans with disabilities.

I could easily write an obituary of Harriet's life as her accomplishments are many. But instead I will do what she would have done—what she always did—and take this opportunity to educate and to further her cause.

Harriet McBryde Johnson, a brilliant attorney, was a woman with spinal muscular atrophy. Her power came from her words, spoken and written, for those who she felt were being denied the choice of living.

In February 2003, Harriet graced the cover of the New York Times Magazine. The article, Unspeakable Conversations, discussed her meeting with Peter Singer, a professor of bioethics at Princeton University, who made the inflammatory statement, “It does not seem quite wise to increase any further draining of limited resources by increasing the number of children with disabilities.”

What Singer was advocating was what Harriet railed against. She said, “Singer believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments [as he considers their condition] so severe that he doesn’t consider them persons.”

“He 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 issue of the choice of aborting children with significant disabilities.

When I first read about Harriet, I was 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?

Yet, there are those in the world who share her passion.

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. They had a great editorial in the Washington Post on May 20, 2007 entitled Haunting Echoes of Eugenics. In it, Andy and Anne talk about the fact that today over 80 percent 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 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 horrifying atrocities of World War II with 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, “…newgenics will create an uninsurable, unemployable, and unfinanceable, genetic underclass.” This is what Harriet McBryde Johnson fought against her entire life.

Harriet was an advocate of those who could not speak for themselves. 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.”

If we have those endorsing death over disability, what message does that send? It certainly does not imply that employment of a person with a significant disability is desirable. Pondering that thought makes you understand why there is a 65 percent unemployment rate for Americans with significant disabilities.

Harriet believed that if we did not stop the madness of considering death over disability, it could become a way of dealing with those not desirable. She pointed out that the best and brightest in philosophy or bioethics at Princeton and other places of learning could be taught to think of people with disabilities in 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.”

Harriet spoke at the United States Holocaust Memorial Museum in March 2006, 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, Hitler murdered over 200,000 people with physical and intellectual disabilities—a group felt to be not desirable.

This haunting thought is occurring today in America. Under its precept, 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 history as a courageous warrior who spoke out for us all. She has passed away. But, because she lived, her words, her legend, and her courage will go on.

Sorry, Singer. See? You were wrong.