The Beauty of Imperfection

2013-06-13 Grace
Grace is in the second grade and she is a good student, when she is not socializing. At home she has four pets: two cats (Cecelia and Leonardo) and two dogs, Lucy and Jackson. Grace is an avid performer, singing into her karaoke machine and taking tap dancing classes. Event though she is the youngest member of the family, her nickname is The Queen because she tries, often unsuccessfully, to call all the shots. Grace has Down Syndrome.

As someone who is passionately pro-life, something I care deeply about is recognizing the humanity in those who don’t meet our usual definition of perfection. One of the great, unknown tragedies of modern America is that the vast majority of babies with Down syndrome are aborted, depriving them of their lives and us of their light and of our need to exercise our humanity in empathy with and sacrifice for those who need us. As Viktor Frankl said:

If all men were perfect, then every individual would be replaceable by anyone else. From the very imperfection of men follows the indispensability and inexchangeability of each individual.

To be born with a serious genetic defect is of course a terrible tragedy, but to spare us from the knowledge of tragedy by hiding those who suffer–either through abortion or institutionalization and segregation–is to compound and expand that tragedy. We are most human when we recognize humanity in those who are not like us, and that’s why I love this story:

Guidotti’s life has been all about beauty and the power of images. He spent years as a fashion photographer in Milan, Paris, and with a studio in New York, always shooting what fashion editors decreed to be beauty. Then, fifteen years ago, when he considered photographing a woman with a disability, he was shocked at images in medical textbooks he consulted. Where, he asked, is the humanity?

Where indeed. As a result, Guidotti began a personal effort to change that by photographing people–often children–who suffer from these conditions. The results are challenging, beautiful and–especially when you learn that so many of the subjects died young–heartbreaking.

Bill passed away in 2010 due to complications from Marfan Syndrome, a connective tissue disorder. Bill always wanted people with this condition to be proud of their long fingers, arms and legs. He wanted to be a pilot.
Bill passed away in 2010 due to complications from Marfan Syndrome, a connective tissue disorder. Bill always wanted people with this condition to be proud of their long fingers, arms and legs. He wanted to be a pilot.

Check out the article, and watch the video as well. Really, you’ve got to watch the video.

2 thoughts on “The Beauty of Imperfection”

  1. ceejay-

    As far as the stats go, I just double-checked on Wikipedia. Of course Wikipedia itself is not necessarily credible (that’s debatable), but they often do a good job of citing papers, and this is one of those cases. Here’s the relevant section:

    Down Syndrome Abortion Rates

    And the specific quote:

    In the United States a number of studies have examined the abortion rate of fetuses with Down syndrome. Three studies estimated the termination rates at 95%, 98%, and 87% respectively.

    I haven’t read the studies, but I glanced at the footnote and there are three of them and they are from 1999, 1999, and 2000. So this would appear to contradict most of the concerns raised on the Patheos article you linked (e.g. that it was a single study from the 1970s).

    The one caveat is that I don’t know if this considering all Down syndrome pregnancies, or just those that are detected in prenatal screening. To my mind, this is a relatively immaterial point since–in discussing the societal relevance–it’s the reaction to what we know that really matters. Of course there are no abortions of unborn human beings with Down syndrome for that purpose in the absence of screening, but that says nothing one way or the other about societal acceptance of Down syndrome.

    I also remember reading, although I can’t find the link now, an opinion piece at Salon or Slate (one of those types) by a mother of a child with Down syndrome talking about the hostility she faces and the assumption that she must not have been smart enough to do prenatal testing. In addition, a family friend recently had a Down syndrome baby. When they did the prenatal testing and got the results back, the nurse broke down in tears at their reaction, which was “How do we prepare for this baby?” and not “When can we schedule the abortion?” The nurse said it was the first time in her experience that a mother had elected not to have an abortion after learning her baby had Down syndrome.

    So both the anecdotes and the published papers all point to a very, very high rate of abortion at least in cases of prenatal screening, as far as I can tell.

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