The NYT today has a story on the ethical questions surrounding prenatal testing for Down Syndrome. It focuses on parents of disabled children and their efforts to tell the world, and especially soon-to-be parents, that life with Down Syndrome is not the tragedy it is often made out to be.
This strikes close to home for me. For years I have tried to tell the same story, centering on my son Aidan. He did not have Down Syndrome; indeed, his disabilities were much more severe. Yet my thinking is the same as the parents in this story: instead of holding fast to often unrealistic expectations about who are children are or will be, why not open ourselves to what they actually are. Disability might mean that certain outcomes will be impossible. But that does not mean that those lives are somehow meaningless or lacking in value. Accepting the full range of human diversity, disabled as well as abled, makes us more humane.
One paragraph in the story jumped out at me:
The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.
Calling the parents "evangelists" strikes me as unfair. The larger issue, however, is well captured here. It seems to me that, as a society, we are more concerned with "preventing" disability (which, of course, is impossible. Even if some sorts of disabilities were eliminated completely through abortion, there are plenty of others that occur later in life...) than we are are celebrating human diversity. The only reason new parents fear Down Syndrome is image of it they receive from the society around them. Disability is defined as a problem. Parents worry that their children will "fail" or be a "burden." Society has only slowly adapted and accepted disability (it is still common to find physical barriers, like stairways, blocking access to people in wheelchairs). If more were done to support people with disabilities, if the culture were less obsessed with youth and beauty and "success," there would be much less to fear in a diagnosis of Down Syndrome.
Taoism is a good starting point for a wider acceptance of disability. Here are two lines from Chuang Tzu:
Sounding the ten thousand things differently, so each becomes itself according to itself alone - who could make such music? (18)
...the real is originally there in things, and the sufficient is originally there in things. There's nothing that is not real, and nothing that is not sufficient.
Hence, the blade of grass and the pillar, the leper and the ravishing beauty, the noble, the sniveling, the disingenuous, the strange - it Tao they all move as one and the same. In difference is the whole; in wholeness is the broken. Once they are neither whole nor broken, all things move freely as one and the same again. (23)
So each becomes itself according to itself alone: that sounds right to me.