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EIGHT Ericka’s Sepsis, Lia’s Convulsions, and Cultural Differences The thesis is that our identity is partly shaped by recognition or its absence, often by the misrecognition of others, and so a person or group of people can suffer real damage, real distortion, if the people or society around them mirror back to them a confining or demeaning or contemptible picture of themselves. Nonrecognition or misrecognition can inflict harm, can be a form of oppression, imprisoning someone in a false, distorted, and reduced mode of being.1 —Charles Taylor What we distribute to one another is esteem, not self-esteem; respect, not self-respect; defeat, not the sense of defeat; and the relation of the first to the second term in each of these pairs is indirect and uncertain.2 —Michael Walzer THERAPY AND IDENTITY Several of Billy Richardson’s and Jackson Bales’s care providers at Baylin asked themselves whether to cease aggressive medical treatment (Billy) or to introduce standard therapy (Jackson) against the wishes of each patient ’s family. Those conflicts might conceal a more fundamental level of agreement between the intensive care unit (ICU) house staff and each patient ’s family regarding the value of conventional medical care. Although these patient’s outcomes were uncertain, neither the care providers nor the family members disputed the soundness of the medical data that guided their treatment regimens. Michelle Richardson did not propose nonmainstream alternatives to what the hospital could offer, and Harold Bales did not believe that his religious faith could change Jackson’s situation or that it required house staff to use unconventional healing methods. The Richardsons were especially adroit when interpreting and assessing data regarding Billy’s condition, and they did so daily. Like many parents in Baylin’s ICU, they were able to understand complicated medical information and were remarkably articulate when speaking in the house staff’s technical language about their son’s case. Yet to many families, Michelle and Kyle Richardson appear to have been coopted by the medical establishment because they never asked whether high-tech, tertiary medical care was the best way to address their son’s condition. These concerns about cooptation point to another kind of conflict that is increasingly appearing in pediatric health care settings, some aspects of which I mentioned when discussing In the Matter of Martin Seiferth, Jr., and Custody of a Minor in Chapter 4. Such clashes are culturally based, challenging the merits of conventional medical treatment and the account of the body on which it relies. That is to say, some patients and families are requesting alternative healing methods and natural remedies for chronic and acute ailments. Such methods and remedies typically claim superior effectiveness when compared to standard medical approaches, relying on laboratory or anecdotal evidence. Not infrequently , their use is also linked to a worldview or set of religious beliefs and practices, and failure to appreciate their merits can indict the religious frameworks of which they are a part. No less than illness, therapy can touch on an patient’s or family’s culture and identity. In this chapter, I will explore two cases involving alternative therapies and cultural differences in the care of children. The first is a case from a hospital on the West Coast that was presented to me for critical commentary while I was doing fieldwork in Baylin’s ICU. Focusing on the story of an infant girl, Ericka, that case concerns whether, and on what terms, care providers should accommodate unconventional therapies and New Age religious beliefs and practices. Second is the story of Lia Lee, a child of Hmong immigrants to the United States, whose epileptic seizures and subsequent brain damage confronted her American doctors with grave medical and cultural challenges. As recounted in Anne Fadiman’s stirring ethnography, The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors , and the Collision of Two Cultures,3 Lia’s story concerns cultural differences in the course of treatment and whether quality-of-life considerations are potentially ethnocentric. When pediatricians treat patients such as Ericka and Lia, they must consider whether or how to negotiate between the culture of modern biomedicine and cultures outside the mainstream, whether indigenous or transplanted from elsewhere. In such cases it might seem wise to coordinate conventional methods with nonmainstream beliefs and practices, even at the expense of providing optimal care for patients in need. I want to discuss the merits and limits of that idea after examining each account...

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