Essentials Of Health, Culture, And Diversity by Mark Edberg

Exercise 2

A Classic Example of the Clash of Ethnomedical Systems: Lia Lee, a Hmong Child with Epilepsy
Perhaps one of the most profoundly documented cases of a clash between two ethnomedical systems and the social and health consequences of that clash concerns the story of a young Hmong immigrant girl in California who had epilepsy. This tragic but revealing story is recounted by Anne Fadiman in The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors,and the Collision of Two Cultures (Fadiman 1997).
The Hmong-Background. Before proceeding any further, you may be wondering: Who are the Hmong? They are a Southeast Asian population that originated in China and eventually lived in the mountainous regions of Laos, Thailand, and Vietnam. Historically, the Hmong lived in small villages of about 20 households, in high and remote mountain areas. Hmong society was patriarchal, clan based, with multiple generations and family members living in the same household. Villages subsisted on small-scale agriculture. The Hmong language is Sino-Tibetan, but there was no written language until a Romanized alphabet was developed by missionaries in the 1950s.
With respect to religion and its relationship to the ethnomedical system, many Hmong in the United States have become Christian. However, the Hmong who first came to the United States were largely animist and traditionally practiced ancestor worship. Hmong people believed in multiple spirits present in everyday life, and in the existence of supernatural power. Very importantly, the Hmong believe in the existence of multiple souls within each individual, a belief that plays an important role in the etiology of disease and in healing. Shamans (indigenous healers-see Chapter 6) are central to healing, in large part because they are viewed as capable of traveling in the world of spirits. In the beyond or supernatural world live the souls of the dead and the souls of those waiting to be born. Three days after birth, a Hmong baby is given a soul-calling ceremony, in which the baby is first given a name. A necklace is placed around the baby's neck to keep the soul (called a " plig ").
When someone is sick, a shaman is called to perform a soul-calling ceremony. A shaman goes into trance reinstate a wandering soul, which is possible cause of the illness. Another ceremony or healing practice involves magic to pull the bad spirit from the body of a sick person. Herbal medicines are also used.
Migration to the United States. The Hmong population came to the United States as refugees, a direct consequence of the Vietnam War. During the war, the United States trained a secret Hmong army to disrupt supply lines coming down the Ho Chi Minh trail from North Vietnam, which passed through remote mountainous areas in Laos. The Hmong army was widely known for its courage in fighting much better equipped Vietnamese soldiers, and they also rescued numerous downed U.S. pilots who had flown bombing sorties in Laos targeting the supply trail. When the Communists took over in Vietnam, then Laos in 1975, both governments persecuted the Hmong, and many tried to flee across the borders to refugee camps in Thailand. Since 1976, many Hmong from these camps have been resettled in the United States, most notably in central California, Minnesota, and Wisconsin, though there were resettled Hmong in San Diego, California, Providence, Rhode Island, and other locations as well. When they arrived, most Hmong had little experience with Western culture, including the biomedical system. Life in the United States was difficult at first. Many Hmong were not literate; elders did not learn English, and had few job skills. The pattern of extended family living and clan social structure was harder to practice in the United States. Many Hmong were exposed to formal education for the first time. Eventually, adaptations were made, and Hmong children attended and often did well in school. In 2002, the first Hmong state senator was elected in Minnesota. The Hmong New Year and other festivals remain important wherever the Hmong are.
The Story. Fadiman's The Spirit Catches You and You Fall Down , is a story of a clash between one ethnomedical system-that of the refugee Hmong community-and the biomedical framework under which the doctors and hospital operated. The clash came over a little child with epilepsy, viewed one way by the Hmong and another by the medical system. A young Hmong girl named Lia Lee was diagnosed with severe epilepsy by a hospital in Fresno, California. In the Hmong ethnomedical system, however, epileptic symptoms meant something very different than the biomedical understanding of epilepsy. First, according to Hmong belief, epileptic symptoms were viewed as the result of soul loss, where a soul must have been frightened out of Lia's body by a sudden or dramatic situation. Epilepsy was known to the Hmong as qaub dab peg , or, in English, a spirit catches you and you fall down. The sudden event identified by the Lee family was a loud door slam, which caused her soul to flee and precipitated her seizures. Second, epileptic seizures were also viewed by the Hmong as a kind of blessing, as evidence that the person can perceive things other people cannot, and therefore has a special, spiritual capability. To cure the seizures and return Lia's soul to her, a shaman (called a " txiv neeb ") was needed to perform a soul calling.
The difference between the treatment prescribed by doctors at the hospital and the treatment prescribed under the Hmong system was dramatic-though the Lee family did believe that something needed to be done to address the increasingly severe seizures. There was misunderstanding, miscommunication, and frustration on both sides. The Lee family did not always understand the changing regimen of medications for their daughter, and they believed that some of the medications were in fact causing harm-a belief that had some basis, since Lia suffered from side effects including, eventually, an infection that caused a coma and eventual vegetative state. The doctors did not understand the Hmong ethnomedical beliefs about epilepsy and viewed the Lee family as resistant, even to the point that Lia was taken from her family for a period of time by social services.
At the time, few resources were available to bridge the gap in understanding. Even though both the biomedical doctors and the Lee family came to some understanding of each other's treatment approach and reasons, this did not really occur until the story reached its tragic conclusion. It is a case in point for the need to understand the diversity in health beliefs and practices, and to take a collaborative approach to treatment that recognizes the legitimacy of different systems.
Figure Hmong Girls at New Year Festival in Laos

What are some examples of the nocebo effect that you have seen or heard about?