Dan had no way of knowing that Foua and Nao Kao had already diagnosed their daughter's problem as the illness where the spirit catches you and you fall down. Foua and Nao Kao had no way of knowing that Dan had diagnosed it as epilepsy, the most common of all neurological disorders. Each had accurately noted the same symptoms, but Dan would have been surprised to hear that they were caused by soul loss, and Lia's parents would have been surprised to hear that they were caused by an electrochemical storm inside their daughter's head that had been stirred up by the misfiring of aberrant brain cells.
This quote summarizes the primary misunderstanding between Lia's doctors and parents: her doctors considered her illness to be caused by a neurological disorder located in the brain, while her parents considered it to be of spiritual origin. These very different "explanatory models," each grounded in culture, caused each party to respond in different and sometimes contradictory ways. Lia's doctors wished to treat her disease with medication, with the hope of eliminating her seizures. Her parents, while soliciting the doctors' help, felt that too much medication would interfere with the spiritual healing conducted by a tvix neeb (shaman). They also may have felt an internal tension between the desire to keep their daughter safe and the belief that her seizures, being of spiritual origin, would lead her to be honored within her community, possibly as a shaman.
Conquergood considered his relationship with the Hmong to be a form of barter, a "productive and mutually invigorating dialog, with neither side dominating or winning out." In his opinion, the physicians and nurses at Ban Vinai failed to win the cooperation of the camp inhabitants because they considered the relationship one-sided, with the Westerners holding all the knowledge. As long as they persisted in this view, Conquergood believed that what the medical establishment was offering would continue to be rejected, since the Hmong would view it not as a gift but as a form of coercion.
Dwight Conquergood was an ethnographer working in Ban Vinai, the largest refugee camp in Thailand. The Hmong embraced Conquergood's public health campaigns, which incorporated traditional knowledge and beliefs. His dog-vaccination campaign used a Rabies Parade, in which three characters from Hmong folktales paraded through the camp and the chicken, which traditionally held powers of augury, explained the etiology of the disease. Similarly, a sanitation campaign used a parade of children led by figures called Mother Clean and the Garbage Troll singing songs about disposing of trash and using the latrine. Conquergood also embraced the knowledge of the Hmong for himself. He was treated with Hmong herbs for diarrhea and a gashed toe, and he went to a tvix neeb as well as a Western doctor when he contracted dengue fever. His attitude can be contrasted with the attitudes of Lia's physicians and other western doctors, who had almost no knowledge of Hmong beliefs and whose advice was treated with skepticism.
If [doctors] continue to press their patients to comply with a regimen that, from the Hmong vantage, is potentially harmful, they may find themselves, to their horror, running up against that stubborn strain in the Hmong character which for thousands of years has preferred death to surrender.
Fadiman presents the unwillingness of the Hmong to compromise as an inborn trait. What doctors labeled as "noncompliance" was a hamartia - a virtue in one context, a flaw in another - that allowed the Hmong to survive for thousands of years without losing their culture to assimilation. Presenting it as inborn, however, takes away individual agency and neglects to recognize the many ways in which Hmong have compromised and adapted to life in their new country.
As long as doctors and parents continue to negotiate, even if they disagree, the conflict is confined to differences in belief systems. "Once the police are called and court orders are obtained, however, the difficulties escalate to another level," wrote Culhane-Pera. "The differences are no longer about beliefs. The differences are about power. Doctors have power to call the police and to access state power which Hmong parents do not have." Because the Hmong have historically been so resistant to authority, they are especially confused and enraged when they are stripped of their power in a country to which they have fled because of its reputation for freedom.
When Lia's parents refused to give her the medication prescribed by her doctors, Neil Ernst reported them to Child Protective Services (CPS) and had Lia placed in foster care. His action, and CPS's response, demonstrates that the United States privileges certain beliefs over others. One could argue that the Lees' traditional healing methods were actually superior to the doctors' medication, as their care kept Lia alive for twenty-six years when her doctors assumed she would die within days. Lia's neurologist, Terry Hutchinson, even admitted that it might have been an excess of medication that made Lia's body susceptible to the septic shock that caused her brain damage. Despite this evidence, medical knowledge is considered to be superior, with decision makers likely unaware of their own biases. It is ironic that the United States, known for its freedom, has systems that deprive freedom to those who do not share dominant ways of thinking.
The doctors can fix some sicknesses that involve the body and blood, but for us Hmong, some people get sick because of their soul, so they need spiritual things. With Lia it was good to do a little medicine and a little neeb, but not too much medicine because the medicine cuts the neeb's effect. If we did a little of each she didn't get sick as much, but the doctors wouldn't let us give just a little medicine because they didn't understand about the soul.
In this quote, Foua explains to Fadiman the reason that she and Nao Kao wanted to limit Lia's medication. Perhaps if Lia's doctors had understood about the soul, they could have supported the Lees' efforts to seek spiritual as well as medical treatment while reassuring them that the medicine would do no harm. Arthur Kleinman, a psychiatrist and medical anthropologist, notes that such conjoin treatment not only promotes trust between doctors and patients, but can also improve the outcome, as "illness is so profoundly affected by psychosocial factors" (266). And, in fact, a project in which Hmong healers and Western mental health providers worked together was incredibly successful.
It was so haunting. I started to have nightmares that it was going to happen, and I would be the one on call, and I couldn't stop it and she was going to die right before my eyes. It was inevitable. It was just a matter of when.
Despite the assertion that "western medicine saves lives," it doesn't always succeed, as Lia's story poignantly reminds us. In fact, the final seizure that put her in a coma may have actually been brought on by the medicine she had been prescribed and not by her family's noncompliance. Ernst did his very best, and yet he may not have been able to save her even had there been no cultural collision.
First, get rid of the term 'compliance.' It's a lousy term. It implies moral hegemony. You don't want a command from a general, you want a colloquy. Second, instead of looking at a model of coercion, look at a model of mediation. Go find a member of the Hmong community, or go find a medical anthropologist, who can help you negotiate. Remember that a stance of mediation, like a divorce proceeding, requires compromise on both sides. Decide what's critical and be willing to compromise on everything else. Third, you need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you can't see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone else's culture?
This quote shares psychiatrist and medical anthropologist Arthur Kleinman's retroactive advice to Lia's physicians. He suggests that it is possible to understand medical practice as a process of cultural compromise. Dwight Conquergood demonstrated the power of this model when he used theater and characters from Hmong folklore to teach about public health, such as the importance of vaccinating dogs against rabies and of properly disposing of trash.
Once, several years ago, when I romanticized the Hmong more (though admired them less) than I do now, I had a conversation with a Minnesota epidemiologist at a health care conference. Knowing she had worked with the Hmong, I started to lament the insensitivity of Western medicine. The epidemiologist looked at me sharply. "Western medicine saves lives," she said. Oh. Right. I had to keep reminding myself of that. It was all that cold, linear, Cartesian, non-Hmong-like thinking which saved my father from colon cancer, saved my husband and me from infertility, and, if she had swallowed her anticonvulsants from the start, might have saved Lia from brain damage. Dwight Conquergood's philosophy of health care as a form of barter, rather than a one-sided relationship, ignores the fact that, for better or for worse, Western medicine is one-sided. Doctors endure medical school and residency in order to acquire knowledge that their patients do not have. Until the culture of medicine changes, it would be asking a lot of them to consider, much less adopt, the notion that, as Francesca Farr put it, "our view of reality is only a view, not reality itself."
Despite Fadiman's hope that cross-cultural competency can prevent tragedies such as the one which befell Lia, the idea that Western medicine actually is superior to Hmong cultural beliefs - at least in terms of medical outcomes - establishes the inevitability of the story's tragic outcome. Neil Ernst acted the way he did not because of a personality quirk, but rather because he possessed medical knowledge which compelled him to act in a way that contradicted the family's wishes. The collision leading to Lia's demise was not between one between two cultures (Hmong and the U.S.), but rather one between Hmong culture and U.S. medical science.
Which is more important, the life or the soul?
Fadiman grapples with this question throughout the book. Doctor Bill Selvidge argues that a patient's spiritual life is irrelevant if a child dies, for in that case he or she will never grow up and be able to choose whether or not to follow the parents' religion. Psychologist Sukey Waller, on the other hand, counters that if the parents believe surgery could condemn a child's soul to eternal damnation, that that fate could be worse than death. Fadiman offers no answer to the dilemma, instead posing the question for readers to ponder.
Before we met, I would have considered Lia - someone who cannot speak, laugh, think, work, or, in my lexicon, "contribute" - deserving of kindness but of little value, a partial person if a person at all. She taught me otherwise. How can I say she is not valuable when she altered the course of my family life, my life as a writer, and my whole way of thinking - and may also have influenced some of the people who have read about her?
In an interview, Fadiman expands on the ways in which Lia has contributed to her life. Foua taught her how to be a good parent, and Lia taught her the principle that one cannot measure a person's value by achievements alone. Hmong culture helped her to recognize that there are some problems for which the rational approach is not always the most effective. Her friendship with the Lees has been rich and complex.
