A week ago yesterday I was driving back to Springfield from home.  I had left Maureen and Aidan in the pediatric intensive care unit knowing that he might die at any time.  His heart was strong, however, and his breathing regular.  I had left because neither of us had seen Maggie, our twelve-year old daughter, in four days and nights.  She knew her brother might die and I felt I needed to visit with her for a few hours before continuing my vigil at the hospital.  We had dinner together, we talked, we cried, then I went back to the hospital.

     It was dark on the highway.  I was listening to the radio: Terri Gross, "Fresh Air."  The show was about a recent article in the NYT on "wrongful birth" lawsuits.  The author of the Times piece, Elizabeth Weil, was explaining how and why some parents sue doctors because their children have been born with disabilities that were not diagnosed but could have been diagnosed.  My reaction was visceral.  There can be no wrongful births, I thought.  And I still think that now.

    There are many problems with the concept "wrongful
birth."  First of all, it suggests that the "cost" of raising a
disabled child so outweighs the "benefit" that somebody has to pay for
the surplus of pain and suffering.  There is, of course, pain and
suffering associated with raising a disabled child.  But there is also
much good.  How can we possibly calibrate that balance of good and bad
to come up with a legal case?  Indeed, by invoking a legal notion
reminiscent of wrongful death suits, we are perpetuating the negative
interpretation of disability.  Anything less than perfection is
tragedy!  If we are ever to improve the world for those with
disabilities the first thing we have to do is transform our thinking
away from the tragedy narrative and propose positive actions that will
allow people with disabilities to overcome the physical and social
barriers they confront.  The idea of "wrongful birth" is a step in the
wrong cultural direction.

    Weil does a good job showing how the parents who
bring these suits actually love their children dearly, even though the
rhetoric of their legal actions suggests that have been fundamentally
harmed.  The parents sue so that they can attain the financial
resources necessary to provide good care for their disabled children.  I do not doubt the love and sincerity of the parents.  But these kinds of lawsuits are, in themselves, an indictment of the terrible inadequacy of public policy on disabilities in the US.  If parents have to claim in court that the birth of their disabled children was "wrongful" in order to secure the necessary resources for their care, then the system is very, very broken.  What of the parents who do not sue?  Do they not get the resources?  A just system would provide adequate resources for any disabled child anytime under any circumstances.  That does not happen now, and that failure is driving the "wrongful birth" actions.

    There is also a  breakdown in responsibility in the claims made in these suits.  The argument that it is somehow the doctors’ fault that a disabled child is born is an abdication by parents of their responsibility to care for their children whatever their condition.  This may sound harsh, but I am worried that the blame-ridden rhetoric of "wrongful birth" plays into the arguments of Peter Singer, who, infamously, contends that parents of disabled infants should have the right to kill the children.  All of this denies the possibility of good in disability and the humanity of caring for the disabled.

    Aidan’s birth was not "wrongful."  It was not the doctors’ fault that he was disabled.  We could never have precisely calculated the sums of "cost" and "benefit" associated with his life.  How much was his comfortable sleep worth?  The very language of "wrongful birth" itself undermines the most basic realities of his life: he inspired much love and caring and sympathy in the world.  How can that be a wrong thing?