Helping Parents and Advocates Improve
Educational Results for Children with Disabilities
Helping Parents and Advocates Improve
Educational Results for Children with Disabilities
"Which would have been more discriminatory, to deprive Lia oft/ic optimal care that another child would have received, or to fail to tailor her treatment in such a way that her family would be most like/v to comply wit/i it?" ('p. 78)
by Mary Steen
by Anne Fadiman.
What doctors at the Merced [California] Community Medical Center diagnose as epilepsy, "a sporadic malfunction of the brain" controllable by anti-convulsion drugs, Lia Lee's Hmong parents already know as "the [soul-stealing] spirit catches you and you fall down," to be treated by a shaman and animal sacrifice.
Anne Fadiman takes the Hmong perspective for the title of her book describing this collision of Hmong culture with American medical practice. But her view is even-handed and sympathetic to both Lia's family and her doctors.
The doctors, for example, are confronted with medical situations, sometimes emergencies, in which their training dictates blood samples, spinal taps, tracheotomies. But a Hmong person has strong taboos against such invasive procedures, regarding these taboos "as the sacred guardians of his identity, indeed, quite literally, of his very soul" (p. 61).
Lia's frustrated doctors describe as "noncompliant" her parents' failure to follow the admittedly complicated schedule of medication they prescribe. But the Lees have no written language. no concept of 2 teaspoons. or 5 milliliters. Translators, when available, struggle to communicate.
Moreover, the Lees' only previous experience with western drugs has been with antibiotics in the refugee camps in Thailand. where a few days' worth of pills transformed acute illness into health and that was that. They see no reason to give Lia the medicine when she isn't actually seizing.
During the nine years she worked on her book, Fadiman came to know the principals in this drama: Lia's parents, Nao Kao and Foua Yang, and her primary doctors, Dr. Neil Ernst and Dr. Peggy Philp. It is clear that she admires them all.
Foua and Nao fled hostile soldiers in Laos. breaking through a fire set by the soldiers, hiding in dense forest, and crossing a river to Thailand-with eight children. "We carried the babies and when we came to steep mountains we tied ropes to the children and old people and we pulled them up" (p. 156).
They left behind not only all their possessions, but a life in which they were competent farmers, to come, finally, to the United States, where "there were a lot of strange things," electric outlets, toilets, and canned food among them. Seventeen years later, Foua says, "I [still] don't know a lot of things and my children have to help me. and it still seems like a strange country" (p. 182).
In the face of such extreme cultural dislocation Foua and Nao have raised "athletic, bilingual children who [move] with ease between the Hmong and the American worlds" (p. 250).
Dr. Ernst and Dr. Philp, described by a resident as "easily the best pediatricians in the county," are married to each other. Combining "idealism and workaholism," they share a practice and a half; one of them is always home when their sons get home from school in the afternoon.
"Every morning," Fadiman writes, "the alarm buzzed at 5:45. If it was Monday, Wednesday, or Friday, Neil got up and ran eight miles. If it was Tuesday, Thursday, or Sunday, Peggy got up and ran eight miles. They alternated Saturdays." (p. 412). Said another resident, who had trained under them, "Few other people I know would have gone to the lengths they did to provide good medical care to Lia." (p. 42).
But these two sets of competent and well-meaning people, all of whom care intensely about Lia's health, ended up at loggerheads.
Fadiman tells this compelling story with the skill of a novelist, while filling in considerable historical and cultural background. More important, she raises questions vital to all citizens: Is the United States a melting pot or a salad bowl? Who decides on treatment-the doctor or the parents?
Finally, as Fadiman asks in her Preface. "What is a good doctor? What is a good parent?"
Voter Editor Mary Steen, LWV Northfield, read this book with her students at St. Olaf College. She recommends it to anyone interested in good writing, medicine, Hmong culture, or immigration.
Reprinted by permission from League of Women Voters Newsletter, March 1999
