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.
–Ian Brown, in The Globe and Mail