Monday, October 29, 2007

Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, and of course I forgot to mention it until the end of the month. Our two-and-a-half-year-old son, Elijah, has Down syndrome, and over the last few years we've been learning lots about Down syndrome. Basically the most important thing we've learned is that it's really not that scary or that big a deal. (See Ellen's post on Elijah's first birthday, and my Father's Day article for While Elijah has developmental delays and takes longer to do things, he's an active, healthy, happy kid, he loves Blue's Clues just like his older brother (and now points and says "ooo" when he sees a clue), and he has a good working vocabulary of signs so he can communicate with us and let us know what he wants.

Here's some info from the National Down Syndrome Society:

Did you know...

One in every 733 babies born in the U.S. has Down syndrome. The life expectancy of people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 56 today. In that same span of time, advancements in education, research and advocacy have had a tremendous impact on the opportunities that individuals with Down syndrome have to live healthy and fulfilling lives. Today, many people with Down syndrome:

  • Attend neighborhood schools and learn in typical classes alongside their peers without disabilities.
  • Graduate from high school and go to college.
  • Comprise a vibrant part of the American workforce.
  • Actively participate in the social and recreational aspects of their communities.
  • Live independently, make their own choices, and advocate for their rights.
I'm very grateful that today we have access to all sorts of early intervention programs and therapists, and that society is generally much more enlightened and people have better awareness and understanding of disability issues. It really was a different world just a few decades ago. If you've read The Memory Keeper's Daughter, you have a sense of what life was like for people with Down syndrome not that long ago, when they were frequently institutionalized and it was assumed that they could never live or function in society. Vanity Fair recently had a fascinating article about how playwright Arthur Miller (author of Death of a Salesman and The Crucible) essentially denied the existence of his son Daniel because of Daniel's Down syndrome. Interestingly, after Daniel's birth, Miller's career never reached the heights of his earlier signature work - perhaps because in never accepting Daniel's Down syndrome, he was cutting himself off from the greatest dramas that could have been written.

A few months back Newsweek columnist George Will wrote about his son who has Down syndrome and how increased prenatal testing means that many people with genetic "abnormalities" like his son (and mine) will be terminated before birth. He mentioned that something like 85% of prenatal diagnoses of Down syndrome are aborted (I've heard 90%). While prenatal testing can be a helpful tool that can let parents prepare for challenging circumstances, in too many cases it is automatically assumed that such a life is not worth living, and babies are aborted just because they have an extra chromosome, not because of any life-threatening condition to the baby or the mother.

So part of Down Syndrome Awareness Month is helping people know that a diagnosis of Down syndrome should not be an automatic reason to terminate a pregnancy. There are actually a good number of parents willing and waiting to adopt a baby with Down syndrome. If you or someone you know is pregnant and gets a prenatal diagnosis of Down syndrome, please bring the baby to term. Don't abort the baby because you think you can't take care of him or her. Whether you raise the child yourself or someone else adopts him or her, a life with Down syndrome is still a life that is fully human, fully created in the image of God, with full personhood and identity.

I've recently started doing some reading in the fields of disability studies and theology of disability, and I may blog about this further at some point. In the meantime, let me link to some interesting resources:

If People with Down Syndrome Ruled the World
The Body of Christ has Down’s Syndrome: Theological reflections on vulnerability, disability, and graceful communities
Encountering the Disabled God
Disabled Christianity blog
Theology and Down Syndrome: Reimagining Disability in Late Modernity by Amos Yong

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