Asking the Wrong Questions About Down Syndrome?

I have a new post on the Health site of theatlantic.com. They named it Better Prenatal Testing Does Not Mean More Abortion, but my favorite part of the post is this paragraph:

In retrospect I wonder why I spent so much time convincing myself that the test results would be negative. I spent no time thinking about why the prospect of a child with Down syndrome caused such tightness in my chest, such a need to convince myself that it couldn’t be true of my child or within my family. Why was I so frightened of Down syndrome? Was it the way the tests were presented, the aura of somber intensity that came along with the uncertain results? Was it fear on behalf of my baby? Or fear for myself? Did it disrupt a hazy vision of the life I had always expected our family to lead? Was it the fact that a diagnosis of Down syndrome automatically led to a conversation about abortion, that Down syndrome automatically led to a choice that wouldn’t have otherwise been on the table? I didn’t ask myself any of those questions back then. I just wanted a healthy baby.

To read more on the history of prenatal testing and abortion, read the article, and please offer your comments if you have something to say.

And for much more information on prenatal testing, Down syndrome, and women’s choices, check out What Every Woman Needs to Know About Prenatal Testing: Insight From a Mom Who Has Been There

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. I left a comment over at Atlantic relating to the thrust of the article and the headline.

    Turning to your questions above, I think the issue lies in the last sentence “I just wanted a healthy baby”. The wanting element is, in effect, a form of expectation that is in conflict with acceptance. It is our attachment to our wants and expectations that causes fear. As the saying goes “I knocked at the door of fear, and no-one answered”. Acceptance keeps us connected to our true reality, expectation separates us from it. Having had the experience you will have an understanding of this?

    • jandrprinsen says:

      This comment really spoke to me; thank you!

    • Mike, Yes–I’m sorry that this quotation was unclear. My book, A Good and Perfect Gift, is all about misguided wants and unearthing assumptions that needed to be overturned. In this article, and with my original title for it (Asking the wrong questions about DS) I was trying to demonstrate how I thought I knew what I wanted (and what I “deserved” in a child). Then I was given Penny, and I have been delighted to find that in receiving her I was able to let go of many wants and my sense of entitlement while still receiving the joy of her presence in our lives.

      I did express concern to my editor at the Atlantic about the title, and I asked Mark to offer his comment over there to make sure the numbers are clear. Still, in the US the data is different than Europe, and my hope is that telling the positive story about Down syndrome will help women make the choice to use prenatal testing simply to prepare to bring those children into the world.

      • Thanks Amy, yes our children certainly become our teachers, which is one of the real gifts that they bring.

        The US and NZ data are pretty close, although we don’t have the early blood tests. I think that with the new guidelines we have just secured in NZ that we have stemmed the flow, so to speak. Did you see our press release on that Amy?

        • Mike, I’m wondering if you’d be willing to write a guest post to describe what has happened in New Zealand? You’ve inspired me to think about offering some guest posts around World Down Syndrome Day that give a sense of the different stories around the world… If you’re interested, my email is amyjuliabecker [at] gmail[dot] com

          • Thanks Amy. This press release summarises what has happened in New Zealand. There is a link at the bottom of the press release to a more detailed blog.


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