Life Deserved

Sitting in a cafe up at Yale University. It is raining outside, and there is a puddle just outside my window. As the drops hit the water, they create the rippling of small circles that spread and fade. Some of the drops hit and create dome shaped bubbles, that float across the water like little ships, or the heads of tiny swimmers sticking above the surface.

I am stuck on the idea of choice, specifically the choice of who will take part in our societies, and who will not. "Falling before the emptiness of choice," Esolen said in the article I just referenced. I am reading about bioethics, and thinking of the presentation that Shannon Joseph, our UN Advocacy Specialist gave at Columbia last week. She explained to the students the gravity of choosing which embryos should be allowed to live and which to die based on genetic screening. Those who are deemed less than ideal, those with imperfections, those who have potential to be strange or outsiders - many if not most of them are terminated before they are born. Ninety percent of children who are deemed to have down syndrome are terminated before birth. They are not terminated because the pregnancy is too dangerous for the mother, nor because of rape or incest. They are terminated because of a condition that they have already, and based on the projection of the person they would become - not because they are not human beings, but precisely because they are human beings. Human beings who are somehow deficient, unworthy. This is important to remember.

When I was in high school, I knew a young man with severe autism named Chris Matthews. He acted as manager for our football team. Chris liked to give the players high fives, he liked to carry the ball to us or the water bottle. "Who's that?" he would ask when a new player would show up, and he would greet them and smile once we explained who it was. Chris would not always look us in the eyes, he sometimes didn't understand that our words were for him. The team adored him. We gave him a jersey, and his family would come to the games, and stand under the lights and hold up signs with his number. He was friends with all the cheerleaders.

What was it about Chris that was so dear to us? He was not the most handsome nor the most athletic. He had no concept of the game. He was dear to us by his virtue, and his friendliness, and maybe for his fragility too. He was dear to us because he was Chris, and that was enough. It was wonderful, in fact.

Chris passed away several years ago, and my mother called me in Argentina while I lived there to tell me. My whole community mourned him. His parents still place memorials in the paper. Their daughter went on to Harvard medical school and carried the Matthews lineage to prestigious jobs and hospitals abroad. But Chris was their light.

And now we mold our society such that men like Chris might never be among us. That we can all be tall and blonde and muscular. Seventy percent of sperm and egg donations come from Scandinavia, and the ivy league students here in the US are heavily courted for their sperm and eggs. We want our future generations to be doctors and lawyers, each and all of them. We want them tall and healthy, without flaw or weakness.

Of course there are counter arguments here. What about the parents? The difficulty of life that the child will have? Having a disabled child is difficult, it is work. It strains finances and marriages. It is, no doubt, the source of countless tears, tears of genuine love too - I do not question that.

We must acknowledge the costs of having a child, especially a child who will have a difficult life. Such a thing must not be dismissed lightly, and I understand that sorrow and pain are serious consequences of bringing a person of disability into this world.

But I also wonder - when life is finished with us, which of us are not scarred? Who among us is not vulnerable and weak?

There is an organization called L'Arche, in which disabled people from all backgrounds come together to form community. They hold each other up in weakness, they depend on one another, and they form their lives according to the needs of each other. Jean Vanier, who started L'Arche notes that "it is the most vulnerable and disadvantaged who are the very cornerstone of humanity. They are the ones who teach us compassion and change our hearts." We understand that there is pain in these lives, that there is weakness. Such is the way of all life - what if we embrace it anyway?

What if we were a society that took the poet seriously when he said, "Love is not love/Which alters when it alteration finds?" What if we understood love in the context of something larger, in some work of bettering ourselves, of growing through pain, shedding our selfishness and vice as a fighter in training sheds layers of fat? What if we let love shape us, and life's troubles teach us, instead of assuming life owed us something, some obscure happiness that we have seen on sitcoms and cereal boxes? What if we were a people who looked in our children's eyes to see their hearts, and not simply our own reflections? And we remembered that we live more truly when we love something more than ourselves, when our dreams shape themselves into something larger, and we face difficulties with one another, allowing untold joy to come from unexpected places.

What a remarkable thing that would be.