Wednesday, June 3, 2009

On Clefts and the Immense Privilege of Being White and American

My friend Becks sent me a link to an article about the film Smile Pinki and it's recent success at the Oscars and in raising money for Smile Train, a non-profit organization which repairs the cleft lips and palates of children in developing nations for free. I remembered vaguely hearing of the film during Oscar season, but have not seen it myself.

In watching the trailer, I was reminded of how privileged we were to be white, middle class Americans with access to the resources we had access to when our son Aleks was born with a cleft lip and palate nearly 7 years ago. When Aleks was born, I was told that clefts were the single most common facial deformity and the fourth most common birth defect. Approximately 1 in 700 children are born with a cleft. With certain populations, for instance, among Native American/First Nation peoples, that goes up to 1 in 500. In India, 35,000 children are born with clefts each year.

Having a child with a birth defect was deeply saddening for me. I had spent my pregnancy doing everything "right" and was confounded about how this could happen to me and my child. I felt as though the mistakes I had made had set in motion an issue my son would have to deal with for the rest of his life. I cannot imagine raising him without knowing what I know about clefts, without the information I gleaned to explain this from the dozens of doctors we spoke with, without the pamphlets and books we read, without the support of our families, and without the state having paid for my breast pump and Aleks' surgeries. In developing nations, it seems that families of cleft-affected children don't even know that other children have this deformity. They are isolated and alone. More so, I am sure, than I have ever felt.

Were we not from America, where the initial lip repairs are performed at 12 weeks of age, were we not white and middle class which results in our extensive privilege: our extended families with their relative wealth, our ability to not be questioned or looked down on, our ability to walk around the world assumed to be intelligent and responsible enough to provide the best for our child, our college-educated, well-fed brains which help us ask the right questions and be advocates for our children - all of the things that help us to receive the best possible care - what might the world be like for Aleks?

Later in the evening, my husband came to me and told me he'd read an article about Lebron James having surgery to remove a growth from his jaw. What surprised him was that the doctor mentioned in the article is Aleks' plastic surgeon. Upon further research, Jon discovered that Dr. Papay also helped head the team who performed the recent face transplant at the Cleveland Clinic. Jon said, "we have the best facial plastic surgeon in the world."

It's a total coincidence. The only reason we have Dr. Papay as our surgeon is because his name was given to us by the plastic surgeon who did Aleks' original surgeries in Montana. What's more, our plastic surgeon in Montana was one of the best plastic surgeons for cleft repair in the world. The only recent book on cleft-affectedness mentions him.

We arrived in Montana when Aleks was 10 days old so that Jon could begin work on his Master's degree. We had a phone number for the local cleft & craniofacial clinic and nothing more. We called and were introduced to Dr. Hardy who became our primary care provider for the cleft issues. He had excellent bedside manner and was actually quite handsome to boot. He performed Aleks' first three surgeries at 12 weeks, 6 months, and 9 months.

While Aleks recovered in the PICU, someone told us a story they'd heard about a family similar to ours. They were living in Missoula, far away from their well-to-do family in New York City when they had a child born with a cleft. The patriarch of the family decided to do an extensive search to ensure that his grandchild had the absolute best care available. He soon called the parents up again and told them to just stay there: his research had uncovered Dr. Hardy as the ideal doctor for the job. And so it was we proved tremendously lucky as well.

Of all the places to find oneself with such obstacles, we have unbelievably found ourselves perfectly located. It seems that all of our trials are like this: whenever something terrible, earth-shaking, and heartbreaking happens to us, we do uncommonly well in the end. I don't know why. I don't believe in God. I don't believe in the universe. I positively loathe the secret laws of attraction. I see that the bad things are still bad things. They still break my heart. They still make life unbelievably challenging. Yet we have it so, so unfathomably good. I can hardly make sense of it.

If there is meaning to be found in this life, I suppose it is our commitment to one another, to the world, to our love of this awesome universe and the wild and enchanting things in it that can be extracted from our struggle. We cannot untie the need for justice from anything at all. Our struggle simply illuminates the struggle of others and the need for all of us to be able at all moments to ask for a hand to help. The challenges we encounter highlight the need for inter-dependence, community, and collective action. It is the only sense I can make of it.


Chrissy Johnson said...

What a beautiful entry.

Julie said...

Very well said.

Lynnie said...

It is definitely a privilege most white people don't take the time to acknowledge. Thanks for taking the time to really flesh out the issues. Very thought-provoking post.