Like Fr. Neuhaus, I too was taken with the article “I’m Not a Saint, Just a Parent” by Simon Barnes in the Times of London. It recalled to my mind a speech I gave several years ago to a medical school in which I urged the students to always look at their patients through the lens of universal moral equality.
After the speech, an earnest young man approached me. “I am a genetic counselor,” he said. “What am I supposed to do when I meet with a woman carrying a baby with Down syndrome? I mean, I have to counsel her.” I suggested that perhaps he could bring in parents who have actually lived the experience of parenting a child with Down to keep the “counseling” from becoming a one-way street.
Barnes’ loving tribute to parenting a Down child is precisely the kind of input that I had hoped the earnest young genetic counselor could provide to his clients. Five-year-old Eddie has Down syndrome, and Barnes reports that he “is not to be pitied” for having to father a disabled child “but to be envied.”
Here are three key paragraphs from Barnes piece:
By the way, I hope you are not too squeamish. This piece is not going to pull any punches. If you find the idea of love uncomfortable or sentimental or best-not-talked-about or existing only in the midst of a passionate love affair, then you will find problems with what I am writing. I am writing of love not as a matter of grand passions, or as high-falutin’ idealism, or as religion. I am writing about love as the stuff that makes the processes of human life happen: the love that moves the sun and other stars, which is also the love that makes the toast and other snacks. Love is the most humdrum thing in life, the only thing that matters, the thing that is forever beyond the reach of human imagination. . . .
What is it like to have Down’s [sic] syndrome? How terrible is it? Is it terrible at all? It depends, I suppose, on how well loved you are. Like most other conditions of life. Would I want Eddie changed? It’s a silly question but it gets to the heart of the matter. Of course you’d want certain physical things changed: the narrow tubes that lead to breathing problems, for example. But that’s not the same as “changed,” is it? If you are a parent, would you like the essential nature of your child changed? If you were told that pressing a button would turn him into an infant Mozart or Einstein or van Gogh, would you press it? Or would you refuse because you love the person who is there and real, not some hypothetical other?
I can’t say I’m glad that Eddie has Down’s syndrome, or that I would wish him to suffer in order to charm me and fill me with giggles. But no, I don’t want his essential nature changed. Good God, what a thought. It would be as much a denial of myself as a denial of my son. What’s the good of him, then? Buggered if I know. The never-disputed terribleness of Down’s syndrome is used as one of the great justifications for abortion: abortion has to exist so that we don’t people the world with monsters. I am not here to talk about abortion—but I am here to tell you that Down’s syndrome is not an insupportable horror for either the sufferer or the parents. I’ll go further: human beings are not better off without Down’s syndrome.
By contrast, let us now consider Peter Singer’s harshly sterile views about the options parents should have if faced with a Down baby. One acceptable answer, Singer asserts in Rethinking Life and Death, is establishing the right of parents to have their unwanted Down child killed if they would prefer not to raise a disabled child:
To have a child with Down syndrome is to have a 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 abilities. 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. Even when an adult, a person with Down syndrome may not be able to live independently. . . . For some parents, none of this matters. They find bringing up a child with Down syndrome a rewarding experience in a thousand different ways. But for other parents, it is devastating.
Both for the sake of “our children,” then, and our own sake, we may not want a child to start on life’s uncertain voyage if the prospects are clouded. When this can be known at a very early stage of the voyage we may still have a chance to make a fresh start. This means detaching ourselves from the infant who has been born, cutting ourselves free before the ties that have already begun to bind us to our child have become irresistible. Instead of going forward and putting all our efforts into making the best of the situation, we can still say no, and start again from the beginning.
What a stark difference between the attitudes of these two men toward the weakest and most vulnerable among us, a difference that can be described literally as the distinction between loving and killing. And indeed, for those familiar with Singer’s writing, it is striking how often he writes of satisfying personal desires and how rarely he writes of sacrifice and love. Which, when you think about it, provides vivid clarity about the stakes we face in the ongoing contest for societal dominance between the sanctity/equality of life ethic and Singer’s proposed “quality of life” ethic: The former opens the door to the potential for unconditional love, while the latter presumes the power to coolly dismiss some of us from life based on defective workmanship. The choice we make about these contrasting paths will determine whether we remain a moral society committed to the pursuit of universal human rights.
