Down Syndrome: What Story Will you Tell?

Last updated on: July 29, 2011 at 5:18 pm by Amy Julia Becker

Down Syndrome: What Story Will you Tell? 2011-07-29T17:18:32-04:00 Amy Julia Becker

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I had this moment when we were on vacation in Virginia Beach. I was looking at Penny, and I wondered what other people thought when they saw her from a distance. I assume they saw a little girl playing in the sand with her family. And I assume if they got closer, they would see that her eyes look a little different. Maybe they would hear her say, “I’m five years old!” and wonder about how small she is. They might walk away with two impressions–one of a little girl like any other on the beach, the other of a child with Down syndrome. Or maybe those two impressions are one in the same. Regardless, that moment got me thinking about the two stories our culture tells when it comes to Down syndrome, and so I wrote a post for her.meneutics, “Two Stories About Babies With Down Syndrome.” It begins:

“It’s a girl!”

I received these words with tears of joy when our third child, Marilee, was born. We could have known her sex months earlier, of course, but we decided to wait. And yet, as I wrote in a recent Her.meneutics post, other cultures are far less willing to receive girls with joy. In both India and China, many people receive the prenatal information that they are having a girl as cause to terminate a pregnancy.

Prenatal information always comes within the context of a larger cultural narrative. We express our dismay over the “gendercide” halfway across the globe, yet prenatal testing in the United States also comes within a cultural context. Here, prenatal testing focuses upon identifying “fetal abnormalities.” Information about such abnormalities occasionally help a baby survive through surgical intervention in utero or due to additional medical support at birth. Information can also help parents receive a child with physical or cognitive delays. But the same information is often used as the reason for having an abortion, particularly when tests identify the presence of an extra 21st chromosome, more commonly known as Down syndrome.

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