Harriet McBryde Johnson 1957-2008

Harriet McBryde Johnson 1957-2008

     Last December 24th, in the New York Times, Dr. Peter Singer eulogized one Harriet McBryde Johnson.  This was a tribute to their 2003 head to head meeting, in which they sat on opposite sides and engaged in the single most fascinating debate on human rights that I have ever read.

   As a little background, Peter Singer is a very controversial figure.  He is a member of the Princeton faculty and an atheist, an animal rights activist, and a bioethicist who takes some very controversial stands.  Singer is a radical Utilitarian.  He caries the ideas of this philosophy as far and as fast as he can carry them to their furthest conclusions.  He rejects the “doctrine of the sanctity of life,” as stemming from an irrational religious dogma. 

     Consequently, he holds that a right to life can only be given to those who hold a preference to live, leading him to support abortion, infanticide, and euthanasia.  Most disturbing of all to Ms. McBryde Johnson and other disability rights activists, he argues that parents of “defective” babies should be allowed to terminate them in order to replace the baby with one more likely to bring them happiness.

     The reason this is so offensive to Harriet McBryde Johnson in particular, is that she herself was born one of those infants.    She was born with a very severe muscle wasting disease that confined her to a wheelchair her entire life.   She was an anomaly, supported by modern day antibiotics and technology to survive and thrive with a condition that it would never have been possible to survive with in the past.  She graduated from Law school and was a practicing lawyer in South Carolina.   She was also an atheist, fiercely independent, and abhorred the pitying poured upon her for her condition.  She was a member of “Not Dead Yet,” a disability rights group that blockaded a university hall at Princeton in protest of Dr. Singer’s appointment. 

   And yet, here she was, meeting with the man, discovering to her dismay that in person, he was not a monster.  He treated her with disarming respect and dignity.  He calmly proceeded to argue that parents have every right to kill all babies born as she was, and argue an extermination of sorts for the greater good.

     Ms. Johnson then proceeded to dismantle the idea that a baby can be “replaced.”  That she and her brother born later have a complete package of strengths and weaknesses, virtues and flaws so different as to be incomparable.  She proceeds in her own words to politely “argue for her very existence.” 

    She proceeds to note from personal experience that she ENJOYS her life.  She speaks of a family she knew that found joy and beauty in caring for their completely unconscious daughter.  She notes how assumptions about the quality of her life engender prejudice and pity and keep minds closed from really understanding her experience.

    A student of Singer’s, noting that she eats meat, ponders why she has so much respect for human life and so little for animal life.  She herself wonders how Singer can have so much respect for animal life and so little for the human.  She argues that so much suffering, suicidality, pain in the world occur entirely in a framework of oppression, and that they are entirely curable. 

    More than anything, this debate is a battle of abstraction over real life.  Bioethics has a love of the theoretical and the experiment in thought.  Ms. Johnson had real life battles and experience fighting for her own right to life, liberty, and the pursuit of happiness.

    As a pediatric resident at the time, we discussed her writings and experience at length.  In the course of discussion, one resident mentioned how “unreasonable” it is to give sway to the emotional arguments of those whose lives are directly affected by these issues.   Personally, I can see nothing more unreasonable than refusing to give the personal experience of the disabled the greatest weight in discussing rights and quality of life.

   I think this debate exposes the real danger of high minded ethical and social theory.  In their detachment, in their ivory tower, they can support a system that in its true life practice is inhumane, cruel and revolting.   Life is not abstract.  Life is life.  Ideas like Dr. Singer’s have been used in support of  eugenics, which reached unknown heights in the 1940’s in Nazi Germany. 

Ms. Johnson saw herself on the forefront of the battle to ensure such things never happen again.  While I do not agree with her every position, particularly in relation to a higher power,  like Dr. Singer I am taken by her fight, her dignity,  and her vision for a more equitable world.  Her passionate, reasoned, and articulate arguments touched the heart and opened the mind of this Doctor.  I invite everyone to read the experience as written in her own words for the New York Times.

   Tagged: abortion, abstraction, atheism, bioethics, Disability, ethics, eugenics, experience, infanticide, life, medical ethics, practice, religion, rights, theory   

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