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.