Why Does Our Culture Celebrate Down Syndrome?

In an article for the Catholic World Report, Leslie Fain writes:

In the last two or three years, at high schools from Florida to Illinois, students have been forsaking quarterbacks and cheerleading captains and electing teenagers with Down syndrome to be homecoming kings and queens.

Last year, Target featured a boy with Down syndrome in one of its ad circulars, and the clothing company Wet Seal recently signed as a model a spunky teen with Down syndrome named Karrie Brown, after she received more than 11,000 likes on her Facebook page thanks to a little cheerleading from the company . . .

While the lives of babies with Down syndrome are quietly snuffed out, our culture will likely continue to celebrate the accomplishments of older children and adults with Down syndrome. Why the disconnect?

Enjoying a cupcake on her 8th birthday

It’s a good question. Leslie Fain interviewed me for this article, and we had an interesting conversation about what I have in the past called the “two stories” of Down syndrome. One story is a story of eradication–an increasing number of women who have access to technology for prenatal diagnosis of Down syndrome who then choose to terminate. The other story is one of inclusion–increasing supports for individuals with Down syndrome and their families at school, through medical advances, and in the workplace. I have seen these stories as competing ones, and I have tried here and elsewhere to tell (and show–thus the pictures of Penny that overpopulate this blog) a “good story” about Down syndrome through our daughter Penny’s life and her place in our family. (See also George Estreich’s piece for this blog, What We Think Today, in which he contrasts the way the Today show examines advances in prenatal testing and heartwarming stories about children with Down syndrome.)

But Fain wonders whether these two stories are not in competition but are rather intimately linked to one another, whether our culture is becoming nostalgic about individuals with Down syndrome precisely because fewer of them exist around us.

And a dance party with her best friend

I’m not sure her hypothesis is right (and neither is she, by the way). Due to increased maternal age, which increases the incidence of Down syndrome, the birth rate for children with Down syndrome has remained steady even as the number of abortions has increased in recent years. In other words, though there are more terminations, there are not (yet) far fewer births of children with Down syndrome.

I’m hopeful that the positive stories about Down syndrome pose a challenge to the abortion rate rather than an indication that we are marching down a slow but steady and inevitable path to the extinction of babies with Down syndrome. Still, I think Fain’s question is worth considering, and I would love tok now what you think. Why, at a time when more and more fetuses with Down syndrome are aborted, are we celebrating the lives of the children and adults growing up in our midst?

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 think maybe it has to do more with the state of “political correctness” and everyone-should-be-treated-with-respect we are in. No one wants to offend anybody else, so people who would have never had a chance at something previously are now given those opportunities to show an all-inclusive mentality. While people celebrate Down syndrome, when it becomes a reality for them, it’s still scary. I don’t know. Jut thinking out loud. Your post really made me think. Thanks!

    • I don’t see it as celebrating down symdrome, just realizing these individual human beings deserve as much respect and rights as those without the disorder. This IS completely different from a fetus’ “right” to life.

  2. Amy Julia, I honestly think these are two separate issues. Here’s a letter I wrote to our alumni magazine in response to George Will’s confusing them in an earlier article regarding his son with Down:
    http://paw.princeton.edu/issues/2012/09/19/sections/letters/8720/index.xml

    • Brian, as I posted on FB: I’d love to here more from you about why these are separate issues. It seems to me that they are overlapping ones. Not the same, but not entirely distinct. (Though I’m also not sure how/if celebrating people with DS in the media is related to the termination rate for DS pregnancies.) But it seems to me that there’s a difference between not wanting a baby and not wanting this particular baby due to some particular characteristic (i.e. in China or India, a prevalence of sex-selective abortions or here in the US and Europe a prevalence of abortion for fetuses with DS). This discussion also brings up the undeniable dynamic between individual choice and collective consequences. In the US, we prioritize the choices of the individual and we protect those choices by law for good reason. But I don’t think prioritizing the individual means that the individual shouldn’t be asked to consider the collective consequences of her decisions. Sex selective abortion in China has had massive negative social consequences. Similarly, the series of individual decisions made by parents back in the 1970′s to keep their children with Down syndrome at home led to massive positive social consequences (school inclusion, greater life expectancy, etc.). Women here have the legal right to choose, but with that right comes the responsibility to consider themselves and their potential children as a part of our whole culture.

  3. Mark Leach says:

    I expect the reasons there are more “good stories” being reported and celebrated than ever is a combination of the following factors:

    1. There’s never been a better time to be born with Down syndrome due to advances in early intervention and inclusion, so …
    2. There are more “good stories” to tell than ever before, considering it was not that long ago that segregation/institutionalization was the standard, hiding these lives from the rest of society, and …
    3. It has never been easier to communicate broadly, with social media, blogs, and the vast increase in media outlets needing content to share with readers.

    • Trisomy18Foundation says:

      Ever since I saw the movie Freakanomics, I’ve been into counter-intuitive explanations you wouldn’t expect. Example: legalized abortion in the 1970s explains a substantial part of the crime decline in the 1990s. So it occurred to me when Amy posted this question that it “could” be that parents who had the CHOICES to continue or not continue pregnancies involving Down Syndrome truly CHOSE instead of felt victimized by the birth of the beautiful child with DS. And those mothers and fathers are of course, more likely to CELEBRATE their child they consciously CHOSE to bring into the world. Of course, this doesn’t address the parents who didn’t have a prenatal diagnosis and learned at birth, but isn’t that an ever smaller slice of the new parents population in the DS community?
      Victoria Miller

      • I do think choice can lead to celebration. My concern is that women often make the choice to terminate under very trying circumstances–with a deadline as well as possible misinformation and pressure from others. Many people who are not able to celebrate when their child is born or diagnosed with DS also have the experience of grief that turns to joy, whereas that transformation can’t happen with a terminated pregnancy…

  4. It is the Woman’s decision whether to keep or abort a fetus with down syndrome. I think that is what you and your ilk are missing. If she decides to keep it and take responsibility for that baby, then that is her choice. If she decided it is cruel to keep a child with those disabilities and she isn’t ready to take it on, that is also her choice. There is no disconnect. No pro-choicers are trying to crawl into women’s wombs to say, “YOU MUST ABORT” or “YOU MUST KEEP”, it’s a matter of personal choice.

    • And yes if the woman chooses to have that baby, like every other human born on their earth it should be treated with respect and have basic human rights. I don’t see the confusion.


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