New Post at NYTimes.com/Motherlode: Has Down Syndrome Hurt Us?

I have a new post on Motherlode, the parenting blog of the New York Times: “Has Down Syndrome Hurt Us?”. (Incidentally, for those of you who love the content of Motherlode and read it regularly, as I do, Lisa Belkin, the editor, is moving to the Huffington Post. I’m hoping to continue to contribute to one or both outlets.) I’ll paste the beginning of the post here, in hopes that you’ll click over to Motherlode and read it in full. I also commend the comments to you. As usual on Motherlode, they are contentious, with some advocates for individuals with Down syndrome and others who read the post as passing judgment on anyone who aborts a pregnancy after a prenatal diagnosis. A lot of the comments come down to the role of stories in ethics. Should decisions about pregnancy termination be based only or primarily upon data points or should they include real stories of real families? I leave it to you to form your own opinions, and please feel free to comment here and there. The post begins:

When a car trip gets too long, when they are stalling before bedtime, on a rainy day, my kids ask me to tell them the story “’bout when I was born.” They can recount many of the details: that William’s head was very big (they giggle every time I explain that the obstetrician had to vacuum him out) and that we had to wait and wait and wait for Marilee and that for all three of them I got medicine to make me feel better when we went to the hospital. They know that their dad and I spent three hours getting Penny’s nursery ready before I called the doctor. But for a while, when I told Penny’s story, I left out one crucial detail. I didn’t tell her what happened two hours after she was born, when a nurse called my husband out of the room and he returned with wet eyes and a sentence I couldn’t comprehend: “They think Penny has Down syndrome.”

Earlier this year Penny and I were alone as I retold the story again, and I decided it was time to let her know that the day of her birth hadn’t been all rejoicing and ecstasy. I got to the end of the familiar narrative and I added, “After you were born, I was scared, because the doctors told us you had Down syndrome.”

She cocked her head to the side. “Why you were scared, Mom?”

To keep reading, click here.

 

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. Loved it…Great article!

  2. Amy says:

    I generally avoid the Motherlode comments because I find they so often devolve into simplistic personal attacks on writers who are sharing their complex personal experiences, in part because commenters feel attacked by opinions or experiences expressed in the posts. (I definitely got the sense that some of the people disagreeing with you had aborted babies with Down’s Syndrome themselves and felt the need to defend that choice.)

    I didn’t feel comfortable commenting fully there and didn’t want to sidetracked into ethics of abortion, but I will here…

    I’m firmly pro-choice. And during my first pregnancy, it’s likely that *I* might well have chosen to abort a child with Down’s Syndrome, had I been given that diagnosis, which disturbs me now. That changed during my second pregnancy, when I had a child with a disability and knew other children with disabilities. I told my doctor I didn’t even want the test for Down’s, because I’d keep the baby no matter what. I knew firsthand what was hard about living with disability at that point, but also, and more importantly, knew what was enriching and wonderful about the individuals I knew.

    So I’m in the odd position of being firmly pro-choice, while at the same time being deeply disturbed by the rates at which babies with disabilities are aborted. I do see abortion as an individual choice, but I see all of those individual choices adding up to something that has larger implications for all of us — much like driving an SUV is an individual choice, and may be one that makes sense for each individual, but fleets of SUVs on the road can cause safety and environmental concerns.

    So, in the end, I come back to what I did say on Motherlode: that the very best solution I can see is for families like yours and mine to keep doing what we’re doing — educating the people that disability does not mean a life not worth living, demonstrating that it’s not the end of the world for parents and showing people with disabilities as full, unique individuals, not as part of a homogeneous (negative) label. Thanks, Amy Julia!

    • Thank you Amy! I can’t say I’m firmly pro-choice, and in fact I lean more in the pro-life direction. With that said, I do think there is a difference between a woman making a choice about whether she wants a pregnancy in general and making a choice about whether she wants this baby in particular. My theological assumptions about life make me hope that women will receive support to receive life even when it is unplanned and unexpected, and I feel the same way about children with disabilities. I also suspect that legislation will only get us so far (I’m glad, for instance, that doctors are required by law to provide accurate information about DS to expecting moms, although who would have thought that needed to be put into law?!?), and stories matter.

  3. Alixandra says:

    I just wanted to say thank you for this post. I feel the same way about my daughter who has cerebral palsy. She was a preemie and at first we were shicared that she wouldn’t make it and then months later when we learned that she was different, I was terrified. There was something so scary about the unknown of disability that my husband and I weren’t sure we could deal with. But 12 years later, every single minute has been completely worth it and she’s thriving. I look at her every day and can’t help but think that she’s pretty amazing.


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