A Few Notes on the Invisible
Posted by George Estreich, <i>Biopolitical Times</i> guest contributor July 23, 2013
Biopolitical Times
I’m just home from the annual National Down Syndrome Congress convention, and even given the fact that Down syndrome lands in the news with regularity, there were two big pieces of news during the week I was there. The first was a report that researchers have found a way – in a dish, at least – to “silence” the extra chromosome associated with Down syndrome, which “could help researchers to identify the cellular pathways behind the disorder's symptoms, and to design targeted treatments.”
The second was the release of a full report of the facts surrounding the death in January of Ethan Saylor, the twenty-six-year-old man with Down syndrome who – on refusing to leave a movie theater for a second showing of Zero Dark Thirty – was dragged from the theater by three off-duty sheriff’s deputies moonlighting as mall security, handcuffed, and held face down. He died of asphyxia. Before he died, he was crying in panic for his mother, who was en route to the theater. His death was ruled a homicide by the coroner, but a grand jury declined to indict the deputies. The case has gotten national attention, but the outrage has been mainly confined to what we would call, for lack of a better word, the Down syndrome community – those with Down syndrome, and those who care about them. It has taken months for the full record of facts to be released, and an independent investigation has finally begun.
At the convention, thinking about recent news and the people all around me, I thought a lot about invisibility. In Denver, for a few days, people with Down syndrome were unusually visible – not in the context of human interest features or stories about new prenatal diagnostic tools, which is the way they usually appear, but as family members of all ages. My own daughter was back home, though I had two suitcases full of copies of her story: I was selling my book about her, the one she calls “her book,” in the fluorescent, sunless caverns of the Convention Center. (Convention Center, a curious phrase, given the unconventional population.) But throughout the Center, and to a lesser extent in the streets and hotels nearby, people with Down syndrome were visible everywhere.
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.
Read more...
The second was the release of a full report of the facts surrounding the death in January of Ethan Saylor, the twenty-six-year-old man with Down syndrome who – on refusing to leave a movie theater for a second showing of Zero Dark Thirty – was dragged from the theater by three off-duty sheriff’s deputies moonlighting as mall security, handcuffed, and held face down. He died of asphyxia. Before he died, he was crying in panic for his mother, who was en route to the theater. His death was ruled a homicide by the coroner, but a grand jury declined to indict the deputies. The case has gotten national attention, but the outrage has been mainly confined to what we would call, for lack of a better word, the Down syndrome community – those with Down syndrome, and those who care about them. It has taken months for the full record of facts to be released, and an independent investigation has finally begun.
At the convention, thinking about recent news and the people all around me, I thought a lot about invisibility. In Denver, for a few days, people with Down syndrome were unusually visible – not in the context of human interest features or stories about new prenatal diagnostic tools, which is the way they usually appear, but as family members of all ages. My own daughter was back home, though I had two suitcases full of copies of her story: I was selling my book about her, the one she calls “her book,” in the fluorescent, sunless caverns of the Convention Center. (Convention Center, a curious phrase, given the unconventional population.) But throughout the Center, and to a lesser extent in the streets and hotels nearby, people with Down syndrome were visible everywhere.
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.
Read more...