I finished reading The Spirit Catches You and You Fall Down a few days ago. First off, I mistakenly called the family Cambodian in my earlier post; they are Hmong. I didn’t really know a whole lot about the Hmong before reading this book, and I still don’t know a lot about them. Interspersed within the medical narrative were histories of the Hmong, who have faced persecution just about everywhere because of their refusal (stubborn or courageous, depending on your point of view) to assimilate into the mainstream culture. Anne Fadiman characterizes them as “scrappy.”
But I begin to see why people on SDN are so frustrated with the way the parents behaved. They took the epilepsy meds and pretty much made up their own medication regimen, without informing the doctors. The kid kept seizing, and the result was painful.
What I don’t understand is this: why did the parents, who were very mistrustful of Western-style evidence-based medicine, keep bringing Lia back to the doctors? In general, it seemed as though they loved the kid to distraction, but they were so ambivalent about her treatment: medicating her whenever they felt like it, skipping days, overdosing her. For a long time, this was not communicated to the doctors, either willfully or because of faulty (or non-existent) interpretation.
Some bleeding hearts might say it’s politically incorrect to suggest that the parents purposely withheld information. But no. Politically (and factually) incorrect would be saying something like “All Hmong are dirty liars,” which is just ludicrous. Don’t confuse personal accountability with group stereotypes. In fact, the only criticism I have of this book is that Fadiman treats the Hmong like porcelain figurines. The doctors are very realistic — some efficient and some effusive — but the Hmong are long-suffering victims to the last man; no criticisms allowed. Although she devotes a lot of time to what the doctors could have done to facilitate communication, she seems almost afraid to point out that compromise is a two-way street and that the parents’ confused stubbornness is just as much to blame as the physician’s insistence on a biomedical treatment.
In the end, I found myself sympathizing with the parents but empathizing with the doctors. Lack of compromise can have terrible results.