By then she was crying.
I suspect the reason we can't stop debating the value of genetic testing, despite its many virtues, is that we don't care to choose our fates.
Genetic control threatens what Harvard University political scientist Michael Sandel, in his book The Case Against Perfection, calls our “lively sense of the contingency of our gifts – our sense that none of us is wholly responsible for his or her success, [which]saves a meritocratic society from the smug assumption that that success is the crown of virtue.”
We aren't really scared of the slick and dreamless future Dr. Somerville conjures out of her distaste for quasi-therapeutic abortion. We aren't even that afraid of what perfections we might attempt with genetic technology. We're afraid of what the new biotechnology will do to us – that its “stance of mastery and control,” as Carl Elliott, a brilliant bioethicist in Minnesota, has written, “leaves insufficient cultural space for the alternate ways of living a human life.”
I have no objection to genetic testing. If you can avoid it, I don't want your child to face the daunting, aimless future Walker may have, especially after his mother and I are gone.
But I have an objection if the results of those tests are the only measure you accept of what constitutes a valuable life. I object if you say that my son is a mistake, that we don't want more of him, and deny what he is: an exotic, living form of freedom; a way of being liberated from the grind of the survival of the fittest; free of all the orthodoxies by which we normals measure a “successful” life – the Harvard acceptance, the hot partner, the good job, the fit body, the millions.
Disability is by nature anti-establishment. It's the very lack of so-called normal expectations, the absence of the possibility that Walker and I can ever “achieve” much or even disappoint each other, that frees us from the established and the status quo, to be who we actually are with each other, rather than what society says we are supposed to be. A rare and often impossible form of love lies in that small hollow.
Genetic tests are a way to try to eliminate the imperfect, and all the pain and fear that comes with imperfection. (Especially our own.) But imperfection is not just pain and agony.
On his good days, Walker is proof of what the imperfect and the fragile have to offer – a reminder that there are many ways to be human, and that judgment is our least valuable human capacity.
In terms of physical human evolution, he is a mistake, an error. But he is peerless as a way of developing what Charles Darwin himself in The Descent of Man deemed the evolutionary advantages of “the social instincts … love, and the distinct emotion of sympathy.”
I see him for three days every two weeks, now that he lives mostly in an assisted-living home. When he does come home, I try to take him for a walk down Bloor Street, the big city artery nearest our house, him in his chair and me on foot.
I lean down and push the chair with my elbows, so I can talk in the ear hole of his soft foam helmet. “Look, Walkie,” I say, “look, the white micro-miniskirt is back this summer!” Or: “That Hungarian butcher has had that same side of meat hanging there for a year – let's never eat in there.”
I say all sorts of things, whatever comes to view. I am pretty sure he understands none of it, rationally. But he knows we are having a Conversation, and he knows he is on one end of it. The wriggling, blasting laugh of pleasure our yakking always gives him reminds me again and again how important it is to make that gesture – to engage another, to try to reach the Other, no matter how remote the likelihood of any return or result or reward.
It doesn't matter that Walker will never pass his genetic test. What matters is that I pass his test, that I had a chance to be a human being, a friend, a chatting buddy, a decent if doltish dad, and that I seized it.
I am ashamed to say I regret many things in my life. But I never regret those pointless but utterly unpredictable strolls, those strange, lifting afternoons on the hot city sidewalk with the test-failing boy. They're just one more way of measuring what we might be.
Ian Brown is a feature writer for The Globe and Mail.