The news reached me over the weekend that Lia Lee has passed away. I responded, as I’m sure many others did, with mixed feelings. Lia Lee had been in a vegetative state since 1986, and the bulk of the tragedy associated with her was in some ways already long over. Yet, as this Sacramento Bee obituary notes, her mother nonetheless wept and expressed sorrow over her absence since her death on August 31.
Lia Lee and her family are best known for forcing a radical re-thinking of the value of severely disabled people’s lives and the need for Western medical personnel to deal better with other cultural beliefs during treatment. Hmong immigrants from Laos, the Lees brought with them to the U.S. different ways of thinking both about the epilepsy that led to Lia’s brain-death and about family responsibilities and love. They considered Lia a full-fledged human being even after Western medicine had pronounced her gone.
If you don’t know about Lia Lee, then right now you should take the steps to get ahold of Anne Fadiman’s wonderful book about her, The Spirit Catches You and You Fall Down. I remember reading it shortly after it was published in 1997, and the amazement with which I turned the pages. Fadiman tells the tale of the Lee family’s desperate flight from Laos, their sense of abandonment by the U.S. government after the Hmong had helped out against the Viet-Cong in the “Secret War” during the 1970s, and their bewilderment at the treatment Lia received for her epilepsy at hospitals in their adopted California.
In fact, one small facet of this book has long affected how I teach creative writing. Early on in the book, Fadiman describes how one of Lia’s older sisters had written in elementary school a chronicle of her family’s escape from Laos—swimming across the Mekong River under attack by the Viet-Cong, even losing the life of one family member, enduring squalid refugee camps before finally managing to reach the U.S.—and the teacher’s comments along the lines of “What an interesting life you have led! Watch for proper comma use.” I decided right then and there that I would never trivialize what my students wrote about—that I would always emphasize that the details of writing are not about correctness in itself but about being able to better express the truth of the story you want to tell. I would always treat them as human beings first and writers second. Even this small lesson has served me well.
But The Spirit Catches You and You Fall Down taught so many other important lessons. The impact of Fadiman’s book really cannot be well summarized, even though this New York Times article tries to do so. It’s a book characterized by an unusual depth of research, but also of feeling. There are too few books written with this kind of attention to detail and this kind of sensitivity. Fadiman cared enough to get it right, though even she stands corrected on a few matters. I read a lot of books these days that are superficial or sloppy—and, in spite of some imperfections, Fadiman’s book , even after all these years, puts them all to shame. It is a story that endures even though what it teaches to medical personnel about cultural sensitivity has become close to standard (albeit still too seldom acted on) by now.
May the spirit of Lia Lee live on, and may we remember her as well as her family took care of her.