The beauty of Down syndrome

February 7, 2007 09:00 AM

Commentary by Nathanael Blake

Meeting the parents has become a ritual trial of postmodern romance. Still, one of the key questions my father means to pose to my girlfriend when he meets her is rather unusual: If she and I marry, will she help care for my youngest brother when my parents die?

Zachary, you see, has Down syndrome. The current abilities of medicine make it quite possible, even likely, that he'll outlive my parents or at least their ability to watch over him, so someone else will eventually have to look after his needs. My other brothers and I have been helping him for nearly 12 years now, so it seems natural that this will continue. We've always cared for him and those marrying in will have to accept this responsibility. (Note to the curious: My lovely Julie agreed to this when I forewarned her of my father's planned query.)

But Zachary's dependence hardly means he is helpless. He can, for example, read and write, albeit at a low level. He'll never be a writer or an engineer, but in time he'll be able to hold down a simple job. Perhaps he'll even be able to live on his own as other people with Down syndrome do.

I doubt that will happen for Zachary, though. I don't think he will desire solitary living; he loves others and is loved too much. He's cheerful and outgoing, greeting everyone with hugs. Like the rest of the family, he loves to play soccer. He is fond of drawing, Legos and matchbox cars. His life is happy and he is a joy to those fortunate enough to know him.

This happy life is increasingly normal for those with his condition. But even as the quality of life and ease of care for them improves, the eugenics campaign against people with Down syndrome is becoming more ruthless and effective.

The American College of Obstetricians and Gynecologists recently issued new guidelines instructing that every pregnancy be screened to see if the preborn child has Down syndrome.

Goodbye Ob/Gyn, hello Ob/Gene. The authors of these new guidelines surely know that when detected, 80 percent of American babies suspected of having Down syndrome are aborted. These doctors are no doubt also aware of a 2005 study in the American Journal of Obstetrics and Gynecology which found that doctors frequently pressure women to have such abortions-even presenting medical disinformation in order to influence the parents to "terminate" the child. And because so many babies with Down syndrome are aborted, fewer people know anyone with the condition and the resulting ignorance means more lies and more abortions. Furthermore, sometimes the tests are wrong.

As doctors pressure parents, parents pressure doctors. Approximately half the states in America allow for "wrongful birth" medical malpractice lawsuits. Allowing the birth of someone who doesn't meet a parent's criteria for a normal or ideal human specimen can land a doctor in the dock.

The undeclared but obvious goal of these practices is the elimination of Down syndrome. It's a quiet, measured and thoroughly respectable eugenics program in place around the world. Simon Barnes of the London Times wrote of his son that, "At the hospital, when they discovered on the scan that Down's syndrome was a possibility, they very kindly offered to kill him for us."

Welcome to the world where every child is "wanted." In practice, the idea that it is right for every child to be wanted means that parents have a right to the child they want. The child's dignity and value is only that assigned by the parents. Instead of blathering about children being wanted, we should see that they are welcomed.

The problem with wants is that they are generally selfish. Of course, it is well and good for a couple to want children. That desire may make it easier to welcome them. But to make the worth and even the life of a child dependent on the parents' wishes makes children chattel. In contrast, a welcoming attitude sees children as glorious gifts, and as such, there may sometimes be surprises which can lead to greater joy.

Disabilities make clear this distinction. No one wants to give birth to a baby with Down syndrome. Parents who are primarily concerned with wanting a baby will be dismayed that the child doesn't fit their plan-their desire didn't include disability. And so they will kill their baby if they can, since it wasn't what they ordered.

Alternately, there are parents who are willing to unconditionally welcome whatever child they have. They recognize that life cannot be completely controlled and refuse to attempt such by having their baby killed. They're happy despite the difficulties of raising a disabled son or daughter. They delight in the wonder of each child.

It's a matter of love. When Zachary was born, my family didn't know of the joys he would bring, only the challenges. But we accepted him, and have found that he provides us with mirth and pleasure in ways a more normal person couldn't. He loves with an unabashed enthusiasm that brings joy to all who know him. So the question is, "What kind of people would deprive the world of such a special person?"

Release issued: 7 Feb 07

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