I was thrilled when George Estreich offered this piece that compares two recent Today Show segments, both related to Down syndrome. If you don’t know of George’s writing already, I commend it to you for his thoughtful, careful, elegant approach to words and ideas. His memoir, The Shape of the Eye, will be released in paperback in April, and I’ll alert you to it again then, but you might just want to preorder it now (my review of it when it came out in hardback is available here)…
On January 23rd, Today.com/Moms reported a heartwarming story on which I commented in the New York Times: a patron disparaged a child with Down syndrome in a Houston restaurant, after which his waiter refused, on principle, to serve him. As the father of an eleven-year-old girl with Down syndrome, I was both moved by the story, yet aware of the complications beneath it, the conditional belonging experienced by so many with disabilities.
On January 28th, Down syndrome was back on Today. However, this time the emphasis was very different.
The show profiled Jason and Robin Vosler, an expectant couple. Ms. Vosler had just gotten the results of a new noninvasive blood test—Sequenom’s MaterniT21 Plus—to determine whether their fetus had Down syndrome. In a much blogged-about exchange, Matt Lauer says, “Let’s get right to the good news,” and asks the couple for their test results. Ms. Vosler replies that “. . . the test checks for three different kinds of Down syndrome [sic], and that chromosome wasn’t showing, so we’re safe . . . the baby doesn’t have Down syndrome.”
Some parents have expressed anger, some great sadness. For me, the five-minute segment evoked a weary familiarity with a world of contradiction. Sometimes that contradiction remains at bay, and sometimes, as in this instance, it is painfully apparent. One day, on Today.com/Moms, a child with Down syndrome is a loved family member, and someone to protect. But less than a week later, on Today.com/Health, a child with Down syndrome is someone to protect a family from. Not being pregnant with one is “good news,” and because of a test, a couple is “safe.” You couldn’t invent a starker illustration of our attitudes towards Down syndrome, and disability in general—or the difficult questions coming our way, as our increasing acceptance of people with disabilities collides with increasingly accurate prenatal tests.
These difficult questions, however, are absent from the Today Show’s account, which emphasizes ease and low risk. It’s true that unlike invasive tests such as amniocentesis or chorionic villus sampling, MaterniT21 avoids the risk of miscarriage by using a simple blood draw. However, there are limits to the test. MaterniT21 is only recommended for “high-risk” patients, such as women thirty-five and older; according to guidelines issued by the American College of Obstetricians and Gynecologists, “cell free fetal DNA testing should not be offered to low-risk women or women with multiple gestations because it has not been sufficiently evaluated in these groups.” The same guidelines offer this caution: “Cell free fetal DNA does not replace the accuracy and diagnostic precision of prenatal diagnosis with CVS or amniocentesis, which remain an option for women.” As a result, ACOG recommends that “[a] patient with a positive test result . . . should be offered invasive prenatal diagnosis for confirmation of test results” [emphasis mine]. In other words,a woman with a positive result, wanting to be absolutely certain, might wind up having the invasive procedure anyway—thereby taking on the very risk of miscarriage she wishes to avoid. These complications run counter to the message of risk-free simplicity Today provides.
But there are real questions to consider. In theory, Down syndrome is only the beginning. As our methods of detection grow easier and more accurate, how will we decide what counts as healthy? When dozens or even hundreds of conditions can be forecast, which tests will be recommended, and on what grounds? How can we guarantee that patients will not only receive good information, but be able to make sense of it? How will this test affect both the actual numbers of people with disabilities, and their welcome in our society?
Which brings me back to how the two stories fit together. In one, we’re supposed to feel good about the presence of Down syndrome; in another, about its absence. For me, the separation, the fact of two stories rather than one, is the heart of the problem. During the more recent segment, no one with Down syndrome was shown. No parent of a child with Down syndrome, or expert on Down syndrome, was interviewed. Given that the test’s very purpose is to identify the syndrome, it’s profoundly odd that the condition is barely mentioned, and the people who have it, or their families, never came up. The erasure is troubling.
We need to start putting these stories together; our tests will compel us to. Ultimately, we need to arrive at a coherent account of who we are, as a society and as a species. I hope that account will be more and not less inclusive, and that our stories bear accurate witness to the lives we include. The more we are able to predict about our future selves, the more we need to value difference, and to imagine—whatever we choose—the connection between our values and our happiness. In a world where we have the power to write those values into the species, a simple feel-good story is not enough.
The Shape of the Eye, George Estreich’s memoir of raising a daughter with Down syndrome, will be published in paperback and e-book by Penguin in April. George lives in Oregon with his family.