The Not-So-Simple Life
My all-time favorite movie is Witness, director Peter Weir’s 1985 thriller about a Philadelphia detective hiding out amongst the Amish on a Lancaster farm. The movie makes Amish life look amazingly beautiful and serene, from the dusty roads winding through sun-drenched fields of grain to the wonderful barn-raising scene set to an awesome Maurice Jarre synthesizer score.
But a recent study in the news reminded me that nothing is as simple as it seems. Researchers at the Clinic for Special Children in Lancaster County, in consort with Indiana University and Riley Hospital for Children in Indianapolis, last week announced that they had identified a new inherited disease — a “multi-system autoimmune disorder” — and the recessive gene behind it. All 10 children with the disease are Amish; symptoms include developmental delays, an unusual appearance, and chronic diarrhea. Scientists hope that with the genetic cause identified, they can treat the disease more effectively. [SIGNUP]
If you’re wondering what the Clinic for Special Children might be, it was founded in the ’80s by D. Holmes Morton, a pediatrician at CHOP, to treat inheritable disorders of Old Amish and Mennonite populations. (In 2002, the clinic identified the genetic cause of a devastating form of microcephaly found only in Pennsylvania’s Old Order Amish; the one in 500 kids afflicted are born with extremely small heads.) The Amish are descended from a grand total of 200 or so original immigrants to America, and since it’s rare for outsiders to marry into the religion, their gene pool is quite shallow, as scientists say. The Amish give birth to more twins than any other population in the world, and among the genetic disorders they’re prone to are dwarfism, maple syrup urine disease, and the very rare Crigler-Najjar syndrome. The Clinic for Special Children is both a pediatric practice and a genetic-disorder testing laboratory. Dr. Morton held a barn-raising to build the place, and it raises money by auctioning homemade quilts, furniture and cakes.
A downright tectonic case of old rubbing up against new, isn’t it? The Amish come in their horse-drawn buggies to have their children tested and treated according to the latest research, via the newest technology. Their attitude toward the outside world is apparently far more complex than we learn in elementary school. They are, for example, in the forefront of horticultural research, and grow bioengineered, genetically altered crops on those picturesque farms. They’re often described by those who interact with them as deeply curious about the world around them; they are, after all, German in origin — the nation that gave us such philosophers as Hegel, Schopenhauer, Nietzsche and Kant. And while their formal education may end with grade eight, the Amish have plenty of time to ponder, as they plow those golden fields, the paradox that their religion, which sets them apart from an outside world they consider dangerous and sinful, can also condemn their children to terrible suffering.
SANDY HINGSTON is a Philly Mag senior editor.