On representation, imagination, and prenatal screening for disabilities
January 9, 2007 by Kristina Chew, PhD
Filed under Health
reads a headline in today’s New York Times: Due to new, less invasive screening techniques—-an ultrasound exam that can detect whether or not a child might have Down Syndrome as early as eleven weeks into pregnancy—American College of Obstetricians and Gynecologists (ACOG) is recommending that all women who are expecting be screened. Previously, only women 35 and older have been routinely tested for chromosonal abnormalities in their fetuses. The new ulstrasound exam, a nuchal translucency test, measures the fluid that accumulates in the back of a fetus’ neck: There is a “strong association” between this thickening of the back of a fetus’ neck and Down Syndrome, and studies that use this measurement along with two blood tests have been shown to detect 82 to 87 percent of Down Syndrome cases.
Having just posted on English professor Michael Bérubé’s book about Jamie, his son who has Down Syndrome, Life As We Know It: A Father, a Family, and an Exceptional Child (1998), I wanted to point out two quotations made in the New York Times article and then a passage from Bérubé’s book, all while keeping in mind my recent post on Procreative Beneficience, PGD, and the Selecting of the “Best” Children in light of the issue of for autism.
Dr. James Goldberg, former chair of the ACOG’s committee on genetics noted that:
……..a 29-year-old woman and her partner might now choose amniocentesis instead of a blood test. In the past, the more invasive procedure was seldom recommended for younger women because it could sometimes result in miscarriage. Now the risk is considered to be quite low, and in any event, Dr. Goldberg said, for some couples “losing a normal pregnancy secondary to the procedure is not as problematic as the birth of a Down syndrome child, so they’re willing to take that risk.”
Dr. Nancy Green, medical director of the March of Dimes, is quoted as saying:
“The new guidelines are much better for the broader group of women who are having babies,………and that’s public health: doing the most good for the biggest number, the good in this case being the information people need to make decisions.”
As Bérubé writes in Life As We Know It: A Father, a Family, and an Exceptional Child and on his Michael Bérubé (which he will no longer be writing, as of yesterday), the birth of, and life with, a Down Syndrome child is not easy, life with Jamie is more than worth it. From these brief quotations from Dr. Goldberg and Dr. Green in the New York Times article today, what one understands about Down Syndrome is that a child born with it—that a disabled child—can be “problematic” to a family, and that having the information in one’s first trimester of pregnancy that one is carring a child with Down Syndrome—a disabled child—-will do “the most good for the biggest number.” Given that the population of children with Down Syndrome—-of children with a disability—does not comprise “the biggest number” in society, one might wonder what form “the most good” might take.
If you read Bérubé’s accounts of life with Jamie (as a young child learning to eat, speak, and walk, or as an adolescent accompanying his father on a trip to the Pacific Northwest: “Traveling with Jamie is like nothing else in the world”), you will get a different picture about “the good” of life with a disabled child. As Bérubé writes in the Epilogue to Life As We Know It: A Father, a Family, and an Exceptional Child, “representations matter”:
That’s why advocates of the disabled are so concerned about polite words, popular movies, and visual and textual representations of every kind………… we need to deliberate the question of how we will represent the range of human variation to ourselves. (p. 260)
……….
…..I have tried to represent James to the best of my ability. I have done so in the belief that my textual representation of him might make his claims on the world as broadly and as strongly as possible……..My task, ethically and aesthetically, is to represent James to you with all the fidelity that mere language can afford, the better to enable you to imagine him—-and to imagine what he might think of your ability to imagine him. (pp. 263-4)
The task Bérubé describes here is mine, too, as another parent of a disabled child, my son Charlie who has autism. The second passage I have quoted here follows a description of autobiographies by writers with Down Syndrome, such as Special Kind of Hero: Chris Burke’s Own Story (1991) by Chris Burke. When I write about my son’s disability I am, like Bérubé, constantly aware of the fact that it is me speaking about him, not Charlie speaking about himself in his own voice. Like him, I do my best to represent Charlie “the better to enable you to imagine him—-and to imagine what he might think of your ability to imagine him”—–and that is why I (and many autistic writers) have written about references to autism, autistic people, and life with autism as a “tragedy” or a “nightmare” as fighting words.
As more tests for screening for chromosonal and genetic abnormalities in a fetus are developed, I will do my best to represent Charlie and life with a disabled children, as honestly and truly as I can in the one tool I can, in language, in the words of a mother. Life without my disabled child would be simply unimaginable.
Nuchal translucency is not new. The technology has been available AT LEAST since the 90’s, because that’s when my sister and my friends did it in Brazil (where it’s a routine test, covered by any health insurance). This test is also available in any prenatal diagnostics clinic in the US… It’s just that insurance doesn’t usually cover this test and American doctors don’t usually prescribe it.
Thanks! So perhaps now there will be more of a push to have insurance cover it, and for doctors to prescribe it?
I think so, Kristina.
I remember when I was pregnant in 2003 and thinking that the US was so backward for not offering the nuchal translucency test, when this had been routine in prenatal care in South America and Europe for years.
Again, I think the parents have the right to know in advance. This will help prepare them for the birth of a special needs child. And the test is never mandatory.
But if the parents decide to abort a child, well, I think it is better to do it in early pregnancy than at 16-20 months (after an amnio) when the fetus is more developed.
We can all have our personal opinions on abortion, but there will ALWAYS be people doing it, it’s been like that since the beginning of times. Not everyone is prepared to raise a child at any time in their lives.
The youngest child on our street has Down’s Syndrome.
She is a ray of sunshine in her family’s life.
I can’t imagine seeing her mother out walking now without her in the stroller, smiling and waving at everyone.
(Short street. 6 occupied houses, 4 families with children. Ours are the 2nd through 4th youngest on the street.)
I was offered the nuchal translucency test when I was pregnant with Lady in 1997. I was on the couch having an ultrasound scan at the time, and had not read or been told anything about it in advance. I opted for the test, without thinking too much about it. I refused it for my next 2 pregnancies as I really didn’t want to know.
Those quotes from the doctors are disturbing. It’s obvious that people are expected to want to terminate pregnancies when a disability is detected.
A relative told me about a friend who has had her 2nd child with Down Syndrome. They are all ‘devastated’ and I was expected (I think) to join in the chorus of sympathy. This woman had even had all the screening and had been told her child was healthy (meaning ‘normal’) so she was extra upset. I’m sure in time they will come to accept their children as they are, but I do feel for the little girl who managed to sneak past the barriers.
When my doctor explained the test for Down Syndrome to me while I was expecting Charlie, the words that came out of my mouth were “well, of course I’ll have the baby, regardless.” Charlie was already moving (I rather feel that I could “feel” him from shortly after conception).
In the course of doing research for his book (which is—to mention something totally different—on the New York/New Jersey waterfront), my husband Jim learned that Arthur Miller had “‘placed’” his son Daniel, born with Down Syndrome in 1962, immediately in an institution (see RaggedEdge).
If I ever teach a course on autism and disability studies, there will be plenty to talk and think about.