NRL News

“Countless families with children with Down syndrome have lives marked by love and joy, lives that have been changed for the better”

by | Feb 10, 2023

By Dave Andrusko

Amy Julia Becker is a name known to many of our readers. We’ve commented on several of her terrific essays in this space. Her webpage says she is an “Award-winning writer and speaker on personal, spiritual, and social healing.” She writes with great eloquence stories aboutchildren with Down syndrome—including her own now 16-year-old Penny, who has Down syndrome.

I will talk about her brilliant essay that appeared yesterday in the New York Times in a moment.  First I’ll quote from a piece she wrote that appeared eleven years ago at

I hate the thought that there will be fewer people with Down syndrome in the world as a result of advances in prenatal testing. As I’ve written before, it impoverishes us all when we selectively abort babies based upon particular characteristics (gender, for instance, in China and India … disabilities here in America). But I also hate the thought that mothers of children with Down syndrome think they are alone. Yes, some women choose abortion when they see a karyotype with three 21st chromosomes. But many other choose life.”

Her essay yesterday touches on many aspects, but I would like to focus on the prejudicial manner in which too many doctors still respond to a prenatal diagnosis of Down syndrome and Ms. Becker’s observation about mothers of children with Down syndrome feeling “alone.”

She is not, let me make clear, guilt tripping the “67 percent of American women who received Down syndrome diagnoses on prenatal tests [who] had abortions.” She is writing non-judgmentally:

I understand the fear many women feel in facing a prenatal diagnosis. I wish more of them knew that countless families with children with Down syndrome have lives marked by love and joy, lives that have been changed for the better. While I see every abortion as a tragic loss of life, I am especially saddened for the families who have chosen abortion because they feel scared or alone at the thought of raising a child with a disability.

Too many pediatricians offer too much bad news too early—most often prenatal but also shortly after birth. Becker writes

According to the National Council on Disability, 86 percent of medical providers talked about termination of the pregnancy after a prenatal diagnosis, whereas only 37 percent discussed continuing the pregnancy. Furthermore, genetic counselors and doctors who offer information overwhelmingly relate biomedical concerns without describing the social supports available for families, or the self-reported happiness of most people with Down syndrome.

Prenatal testing, in the hands of an unhelpful medical staff, obviously tilts a prenatal decision in a frightful direction. But it also rests on a terrible assumption:

Testing rests on an assumption that desirable children conform to a norm of development, alongside a corresponding thought that undesirable children deviate from that norm cognitively or physically. You can see the result of these assumptions in the high abortion rates for fetuses with Down syndrome.

The assumptions behind our prenatal testing programs also condition parents — and society as a whole — to see our kids as valuable according to their physical strength, intellectual capacity and social acuity rather than setting us up to receive their lives as they are given.

She ends with a very important insight:

These decisions appear to be individual ones, and yet every decision about whether or not to bring a child with a disability into our world is made within a social context. Women who choose to continue or to terminate pregnancies after receiving a prenatal diagnosis are not making solely personal decisions. They are making decisions that reflect their communal and social reality.

And then

These decisions both create and advance a less diverse world, a world less tethered to the limitations and vulnerabilities that invite us into relationships of mutual care and concern for one another.

What would an example be of the correct use of prenatal testing?

Done right, prenatal testing could allow parents to prepare well for the birth of their children. But without broad social acceptance of people with disabilities, without a medical establishment that conveys the positive social situations of many people with disabilities, and without funding for accurate and up-to-date information in the face of a prenatal diagnosis, more and more women will face decisions about their pregnancies without the support they deserve. And the more we assume that prenatal diagnoses of Down syndrome will result in abortion, the more we will send a message to all our children that their worth depends on their ability to achieve. Instead of reinforcing structures that welcome only homogeneous bodies and minds as units of production, we need a system that supports and welcomes a diverse range of humans with their particular limits and struggles and gifts.

“Weneed a system that supports and welcomes a diverse range of humans with their particular limits and struggles and gifts.” You are valuable because you are you, not what you can do or not do, or whether you are “convenient” or not.

Becker‘s final paragraph on an earlier essay was the perfect conclusion:“Penny was not the ‘perfect baby’ that I expected, but she was exactly the baby I needed.”

Categories: Down Syndrome