George Estreich reports on his return from the recent National Down Syndrome Congress in Denver, where he notes “two kinds of invisibility” emerging in the news. The first has to do with the news of a genetic research team who’ve been able—in the lab, anyway—to use one inserted gene to “silence” the effects of the extra chromosome in the 21st position—the extra one responsible for some of the developmental challenges and heightened medical risks associated with Down syndrome. The claim is that this finding “could help researchers to identify the cellular pathways behind the disorder’s symptoms, and to design targeted treatments.”
The second has to do with the death of Ethan Saylor, a young man with Down syndrome who re-entered a movie theater to see a film for the second time, without paying. Saylor was pursued by three security officers, pinned to the ground, face-down, and died of asphyxia. Estreich notes—as have I elsewhere—that this story has gotten national news, but only just. And the only outcry has come from inside the Down syndrome community. Saylor died in January. The full facts of the case have been withheld from the family and the public until just this month.
Estreich has written beautifully in the past on the strange new world of advanced prenatal testing devoted to detecting Down syndrome, seeking to understand what it means with adroit, attentive language. And here, for Genetics and Society, he brings together all these developments with a meditation on what’s visible, and what’s not:
There are two kinds of invisibility: a literal one, abetted by new technologies, whose likely effect is to ease a population from sight; and a cultural invisibility, fueled by misunderstanding and fear. The two are interrelated. Misunderstanding and fear can fuel the demand for prenatal tests, which can in turn decrease the population; the resulting absence of contact can, in turn, drive further misunderstanding. More subtly, the very fact of prenatal testing drives the way we think and talk about people with Down syndrome: away from a discussion of citizens with rights, and towards a discussion of possibilities, potentialities, and risks. They occupy a kind of limbo of human value. They are discussed – often inaccurately – in terms of their effect on others, rather than in terms of their opportunities and hopes.