George Will’s son, Jon, is turning 40. With Down syndrome apparent at his birth, Jon’s entrance into the world was greeted with a sterile question from the doctor to the parents: “do you want to take him home with you?”
The Wills wondered, “isn’t that what new parents do with infants?”
Will has written a beautiful piece in honor of his son, whose well-lived life is a pointed and dignified rebuke to a society that now aborts 90% of all babies suspected of carrying an extra chromosome. It is a must-read:
Jon was born just 19 years after James Watson and Francis Crick published their discoveries concerning the structure of DNA, discoveries that would enhance understanding of the structure of Jon, whose every cell is imprinted with Down syndrome. Jon was born just as prenatal genetic testing, which can detect Down syndrome, was becoming common. And Jon was born eight months before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies.
This era has coincided, not just coincidentally, with the full, garish flowering of the baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby. So today science enables what the ethos ratifies, the choice of killing children with Down syndrome before birth. That is what happens to 90 percent of those whose parents receive a Down syndrome diagnosis through prenatal testing.
Which is unfortunate, and not just for them. Judging by Jon, the world would be improved by more people with Down syndrome, who are quite nice, as humans go. It is said we are all born brave, trusting and greedy, and remain greedy. People with Down syndrome must remain brave in order to navigate society’s complexities. They have no choice but to be trusting because, with limited understanding, and limited abilities to communicate misunderstanding, they, like Blanche DuBois in “A Streetcar Named Desire,” always depend on the kindness of strangers. Judging by Jon’s experience, they almost always receive it.
After I read the whole thing I pulled this book down from my bookshelf. This excellent collection of Will’s columns has survived my periodic donate-to-library purges because the stuff he’s writing about is timeless, but also because I was so very taken with another of Will’s columns about his son Jon, entitled, “Golly, What did Jon Do?” in which he smacks around the American College of Obstetricians and Gynecologists and their enthusiasm for pre-natal screening:
Medicine has. . . no ability to do anything about Down syndrome, so diagnosing Down syndrome can only have the purpose of enabling — and in a clinically neutral way, of encouraging — parents to choose to reject people like Jon as unworthy of life. And as more is learned about genetic components of other abnormalities, search-and-destroy missions will multiply.
The quality of Jon Will’s life, his father writes, is just fine. It is a life lived with dignity in disability: “Jon experiences life’s three elemental enjoyments — loving, being loved and ESPN. For Jon, as for most normal American males, the rest of life is details.”
Beautiful. The more our society insists on unattainable perfection and ponders who is “unworthy of life”, the more we need to hear about love and loving and what it means in real life.
RELATED: Thomas McDonald over at God and the Machine links to a video that demonstrates how fully we are beginning to incorporate the idea of euthanasia. A mother wants to euthanize her son and daughter, whose bodies are broken down and whose cognitive function is not really known. They’re not “brain dead” but their lives might seem like vegetative wastefulness to some — if the video is proof, then to many. In an interview, the mother says others should not judge until they’ve walked a mile in her shoes.
Well, I am not going to judge her, but I am going to say that in my family, we did walk in those shoes. When one of my brothers suffered a brain injury at age 20, it certainly changed a great deal in our family life. With my brother half-paralyzed, one leg amputated to the hip, nearly blind, prone to seizures and with a limited vocabulary, he was certainly a challenge to all of us, and of course a heartbreak for our parents. We heard “he’d be better off dead” and “after seeing him like this and your pain, I begin to believe in mercy killings” many times from “well-meaning” folk who were made uncomfortable by his imperfect and abnormal presence.
People are afraid of what they cannot control and they say stupid things, so you forgive that. Caring for a family member in this shape is difficult, draining, and people can get worn out when everyday serves a cocktail of love and sorrow. It’s possible that this mother is also wondering who will love and care about her children when she is gone, and seeks to settle that issue before it arises. No, I am not going to judge her. But I will sneer a bit at “Dr. Phil” who has enough grace to mention to this woman, and his audience, that for all anyone knew, the morning sun coming through a rec-room window brought a heart full of joy to her children, who simply could not express it or share it — and to imply that such a capacity deserved respect — but then seemed ready to let the “democratic” mob in his audience dictate moral authority. Because mobs full of people who don’t know what they’re talking about but know what makes them go “eww” are true moralists.
A few years before my brother died, he became ill and needed a very minor procedure. Without it, he would likely get worse and die. The doctors were shocked when my sister and I said, “of course we want you to do it.” To them it seemed like a no-brainer: who would want a life so reduced in quality? “It’s the life he has,” we said, “and he’s entitled to it. It may not be the life you think you’d want, but he loves music, and he has friends he laughs with, and he watches his tv shows and likes to sit outside and draw and listen to the birds. He loves flowers. It’s his life! No one is entitled to take it from him.” One of us even said — and I am not sure who, because either of us are capable of being this direct: “one day this might be all the life you have, and you might find yourself wanting to live it, even if others can’t see the point.”
They didn’t like it, but they did the procedure and my brother lived for four more years before passing in his sleep. They were his years, even if they made no sense to anyone else, and he was entitled to them.
Lots of people’s lives make no sense to others. That doesn’t mean we put human beings down and let only the perfect, the beautiful and the most fit inhabit the planet. Even if the moral geniuses think otherwise.