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?
Bro. Sam, I agree with you. I only wish the North Koreans agreed. I believe the Jews were the first that considered all births sacred. A month or so ago I pondered that moment when life begins, and I wrote this:
Dance of the Haploids
What is that "spark" that occurs when the male and female gametes fuse?
Life! Potentiality is born!
And if we must withhold from calling it life for "practical" purposes, then how honest are we? The female gamete by itself will forever be only an egg, the male gamete by itself will forever be only a sperm (although it may seemingly possess all "normal" male characteristics, a strong single-minded drive, competitive beyond belief, forever wriggling and wrangling to get the prize) -- but when fusion occurs, the female haploid chromosome set and the male haploid chromosome set fuse into a new diploid individual, and it is at this point that "potentiality" occurs -- the spark -- and egg and sperm are no more.
Bro. Bartleby
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P.S. You may be interested in a bit of talk this morning about the intersection of Tao and Jesus at:
http://onecosmos.blogspot.com/
Posted by: Bro. Bartleby | March 25, 2006 at 12:04 PM