In an intermediate French class at Merced College a few years ago, the students were assigned a five-minute oral report, to be delivered in French. The second student to stand up in front of the class was a young Hmong man. His chosen topic was a recipe for la soupe de poisson: Fish Soup. To prepare Fish Soup, he said, you must have a fish, and in order to have a fish, you have to go fishing. In order to go fishing, you need a hook, and in order to choose the right hook, you need to know whether the fish you are fishing for lives in fresh or salt water, how big it is, and what shape its mouth is. Continuing in this vein for forty-five minutes, the student filled the blackboard with a complexly branching tree of factors and options, a sort of piscatory flowchart, written in French with an overlay of Hmong. He also told several anecdotes about his own fishing experiences. He concluded with a description of how to clean various kinds of fish, how to cut them up, and, finally, how to cook them in broths flavoured with various herbs. When the class period ended, he told the other students that he hoped he had provided enough information, and he wished them good luck in preparing Fish Soup in the Hmong manner.Fish Soup is also a good metaphor for this book, as Fadiman untangles a complexity of threads that caused "the collision of cultures" of the book's subtitle.
The professor of French who told me this story said, "Fish Soup. That's the essence of the Hmong."
The Spirit Catches You and You Fall Down is the story of Lia Lee, a Hmong child with epilepsy, the many people who were responsible for her care - her parents and a large contingent of extremely dedicated doctors, nurses, social workers, and others, and the extreme cultural misunderstandings that compromise and obstruct that care.
It is also a work of anthropology and sociology, an ethnography (that is, an in-depth description of a culture) of the Hmong people, whose worldview and practices are radically different than any in modern society. Most Westerners know very little, if anything, about Hmong culture, and I found this aspect of the book fascinating.
The book is also a history: of the Hmong people, and of their participation in the American wars in Southeast Asia, in which they played a crucial, unacknowledged role, and which ultimately left them victimized, traumatized, and dislocated almost beyond imagining. (When thinking about The Spirit Catches You and You Fall Down, I am constantly reaching for words like unbelievable and incredible, not only as expressions of amazement, but almost as literal truth.)
Fadiman alternates between the history/ethnography and Lia's medical story. This structure builds suspense for Lia's story and prevents the history chapters from becoming tedious or overwhelming. The conflict at the heart of this story is complex and not easily unpacked. Piece by piece, Fadiman lays out the puzzle for the reader.
* * * *
From Lia's very first seizure, the conflict begins. The first seizure is brief, and by the time Lia's parents arrive at the hospital with their daughter, it has passed. The hospital has no Hmong interpreters, and Lia's parents cannot communicate what has happened, but is no longer apparent. And so Lia is misdiagnosed. Lia's parents are sent home with medication and instructions that they cannot read or understand.
What's more, Lia's parents view their child's condition partly as an illness, and partly as a sign of a special spiritual state. For the Hmong, medical practices are also religious, and religious practices involve medicine and healing rituals. Based on their understanding of the world, passed down from generation to generation over thousands of years, Lia's parents strongly object to many forms of treatment.
With one of Lia's siblings, herself a child, pressed into service as a translator, and most Western medical concepts having no Hmong equivalent, Lia's parents rarely understand the doctors' questions or instructions. The time-honoured Hmong way of dealing with such incomprehension or distrust of authority figures is to nod and say yes.
As Lia's condition worsens, the doctors prescribe ever more complicated medication regimens, further reducing the parents' ability and willingness to cope. Over time, Lia's parents would come to believe that their daughter's doctors were worsening or even causing her condition.
Everyone wants what's best for Lia, but without trust and with little or no communication, the medical staff and Lia's parents are in constant conflict. Before Lia reaches the age of five, she has been at the hospital more than 100 times, and has been admitted 17 times.
At one point, Lia is placed in foster care, an absolutely heartbreaking situation which almost kills her mother, and is so traumatic that Lia's highly experienced, loving foster mother advocates for the family to be reunited. Ironically, a doctor who is considered inexpert is able to break Lia's downward spiral by greatly simplifying her medication routine.
For the Hmong family, cultural traits that once had enabled them to survive, such as an extreme distrust of authority, or the propensity to have huge families, are, in this new context, maladaptive, even dooming. The medical staff sees Lia's parents as intractable, ungrateful, stupid, and maddeningly stubborn.
For the medical team, actions that are caring, unselfish, even heroic, end up poisoning relationships and endangering health, even putting Lia's life at risk. Talented, dedicated doctors, unaccustomed to being ignored or defied - especially by patients who are poor, illiterate refugees - find their efforts utterly thwarted. Lia's parents sees them as dangerous dictators who must be placated but ignored.
This is not a story of low-income, non-English-speaking people who were denied quality medical care. Quite the opposite. The family receives the services of huge numbers of people, all at no cost. Doctors, social workers, nurses, and psychologists lose sleep and become physically ill from the tensions of trying to provide care for people who reject it.
Nor is this a story of neglectful parents, clinging to old-world folkways or insisting that prayer will cure their child. It's hard to imagine parents investing more time in a child's comfort and welfare than Lia Lee's parents did for her.
And despite both these truths, Lia's condition worsens.
It's as if the medical staff was attempting to force a Hmong family through a narrow funnel called Western Medicine. The only way the family could have fit through that bottleneck would be to cut off their own heads. If you've ever wondered what "culturally sensitive medical practices" would look like - or if you've scoffed at the idea, believing that medicine is medicine, no matter who the patient - this book will be very illuminating.
Throughout, Fadiman maintains tremendous respect for all the actors in this complex drama, and views them all with compassion, yet with enough objectivity that the reader gets a clear picture. As a writer, I was awed by the amount of research this book represents, and by Fadiman's unerring ability to translate a huge amount of information in a lively and compelling way.
* * * *
The obvious and catastrophic mistakes chronicled in this book are not made by doctors, nor by Lia's parents. They are made by governments.
The Hmong didn't want to come to the United States, Canada, or any of the many countries in which they were re-settled. They wanted to live as they had, in peace and isolation, an isolated ethnic group in Southeast Asia, a people without a country. The Hmong were uprooted and devastated by war and its aftermath, then again by the incredibly inept ways in which they were resettled, a recipe for disaster which added trauma on top of (those words again) almost incredible trauma. Once in the US, the Hmong (like most refugees) have been vilified, hated, and subjected to bigotry. But because they vehemently resist assimilation - just as they resisted imperialism and forced assimilation for thousands of years - this racism can be intensified and prolonged.
Fadiman finds instances where Western intervention was filtered through a culturally Hmong lens, with brilliant results. When a healthcare worker in a refugee camp organizes a vaccination pageant, compliance rises from zero to complete success. When a resettlement agency is able to give a small group of Hmong a plot of rural land, within two years the community is self-sufficient - while the Hmong resettled in modern urban environments languish on public assistance and fare more poorly than almost any other immigrant group. Sadly, these positive solutions were extremely time-consuming and labour-intensive, and depended on the unusual involvement of one dedicated, resourceful organizer, making them all but impossible to replicate.
Researching online, I've learned that several medical schools have adopted The Spirit Catches You and You Fall Down as a required text for their medical ethics classes. The book has also led to changed medical practices in the state of California and elsewhere. You can read more about that here; the link contains spoilers that I have tried to avoid in this post.