The mysterious mirror of disability

If you were to build a perfect society, how would you build it? What you would include in it would be telling. But perhaps more revealing would be what you might exclude from your perfect world.

McGill ethicist Margaret Somerville wrote this week in a Globe and Mail column about a move in Denmark to make the nation a “Down syndrome-free perfect society” (actually a headline from a Danish newspaper). Apparently the Danes want to encourage the abortion of fetuses with Down syndrome so their society would be free of anyone with Down syndrome by 2030. This is the vision of a good society, the absence of apparent blemish and defect.

But I can’t help wonder how defective this concept of perfection is. Tonight I enjoyed dinner with a group a people and one of them was a quiet, beautiful boy with Down syndrome. His loving cuddles with his dad and quiet cleaning up after dinner were a sweet part of the evening. I cannot understand the mind that would name his absence as a more perfect world.

Journalist Ian Brown wrote a searingly beautiful book, The Boy In the Moon, about his son Walker who suffers from a rare and severe disability (CFC). It’s an unflinching introduction into the pain of Walker’s disability and yet Brown wonders about the mystery of his son’s disability, what it teaches the rest of us, how people like Walker might make the rest of us better (for example, growing our sense of compassion and sympathy).

Dutch priest Henri Nouwen, author and professor at Notre Dame, Harvard, and Yale and author, gave up his acadamic career to work at L’Arche and serve a severely disabled man named Adam. When someone suggested that Nouwen should delegate these menial responsibilities and focus on writing or speaking, Nouwen quickly responded, “It is I, not Adam, who gets the main benefit from our friendship.”

Nouwen shows us how God reveals himself through the reality of disability. Without trying to romanticize the complexity and hardship of any disability, he writes that Adam taught him

a lot about God’s love in a very concrete way. First of all, he taught me that being is more important than doing, that God wants me to be with God and not to do all sorts of things to prove that I’m valuable … then he taught me something else. He taught me that the heart is more important than the mind … Adam didn’t think. Adam had a heart, a real human heart. I suddenly realized that what makes a human being human is the heart with which he can give and receive love … I suddenly realized that Adam was not just a disabled person, less human than me or other people. He was a fully human being, so fully human that God even chose him to become the instrument of His love. He was so vulnerable, so weak, so empty, that he became just heart, the heart where God wanted to dwell, where He wanted to stay and where He wanted to speak to those who came close to His vulnerable heart. Adam was a full human being, not half human or less human … He wanted to dwell in his broken person so that He could speak from that vulnerability into the world of strength, and call people to become vulnerable.”

What if our quest for “perfection” is, in reality, deeply defective, our drivenness to achieve a disability? What if God is showing us his heart, his vulnerable love through the life of a disabled person? What if we need the artless grace and love of a person with Down syndrome more than they need our care-giving attention?

I can’t help but think that the Danes are avoiding a mirror that people with disability gift the rest of society – namely, that all of us are disabled. Some in visible, diagnosable ways but for others our disability is easily masked, socially accepted and undiagnosed. Denmark, and any society, will be severely impoverished and vastly less than perfect without the presence and blessing of people with disability among them.

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  1. #1 by Carol DeKoekkoek on August 28, 2011 - 2:56 pm

    Thank you Phil for your kinds words. John has been such a wonderful blessing to our family and what he has taught us. I am sorry to say the Danes are not alone. It saddens me to know that here in the US a full 90% of all children with a prenatal diagnosis of Down Syndrome are aborted, and 88% in Canada. A very sorry statement on all our societies.

    • #2 by phil on August 28, 2011 - 11:14 pm

      Thank you Carol – great to meet you this weekend.

  2. #3 by Anna Mary Thorson on August 29, 2011 - 5:59 pm

    Insight from the heart, from God.

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