Diabetes Among the Pima: Stories of Survival (review)

To the Pima Indians of the Gila River Indian Community in Southern Arizona, diabetes is a fact of life. Nearly half of all adult Pima are diabetic. For more than forty years, researchers have been drawn to the desert to study the epidemic. Carolyn Smith-Morris spent ten years with the Pima developing the social networks and cultural acuity necessary to encourage them to speak openly to her about the disease. Uniquely, her research focuses on gestational diabetes mellitus (GDM) in Pima women and their place within the epidemic. She argues that pregnant women represent the key to successful intervention as well as to understanding why the epidemic remains unchecked. Between 1999 and 2000, she conducted over ninety formal interviews with women. Her strategy involved moving gradually, on “Pima time,” from general topics concerning health and illness to more specific questions about diabetes and its etiology. Smith-Morris’s rich ethnographic study provides a valuable insight into the social, historical, and gendered factors that shape the illness narratives of diabetes among the Pima.

Smith-Morris’s research represents a small part of the academic attention devoted to the Pima diabetes epidemic; a simple PubMed search retrieves over five hundred related biomedical articles. She skillfully utilizes the four decades of National Institutes of Health (NIH) research on the Pima to provide a detailed background on the impact of genetics, history, and culture on the disease’s prevalence. Her research contributes additional ideas about the Pima’s perceptions of medical authority and willingness to modify behavior to reduce risk. While she identifies her work as part of a cultural explanatory model, she does not shy away from the biomedical aspects of disease. Additionally, she includes and elaborates upon the history of diabetes as a disease of development and the historical public health initiatives and policies aimed at indigenous peoples. Her narrative does an admirable job of condensing and interpreting the secondary literature in a manner that makes it accessible to multiple disciplines.

Central to Smith-Morris’s study are the themes of perceptions of health, medicine, and risk. Her interviews with the pregnant Pima women about their experience with prenatal care and GDM illustrate the cultural obstacles preventing early screening or successful glycemic control. Clinical research suggests that GDM often foreshadows the later development of type 2 diabetes in Pima women and can lead to health complications for their babies. Typically, GDM disappears at the conclusion of pregnancy, and the Pima women often avoid testing or treatment as they view GDM as the unwanted harbinger of the disease many Pima cannot escape. Smith-Morris’s interviews with the pregnant women reveal an unexpected complexity behind the decisions not to modify behaviors. Pima gender identities connected to traditional activities and values, such as the desire to be a good cook; the consumption of fry bread; or ambivalence toward exercise, stymie preventive strategies and intervention programs. She also suggests that the intense NIH research and publicity contributed to the stigmatization of diabetes within the community. The longitudinal studies and clinical trials that failed to find a cure further influenced community fatalism regarding the inevitability of the disease. Smith-Morris aptly illustrates the multiple aspects of the Pima response to diabetes and also provides glimpses into the frustrations of health care providers who struggle with patient noncompliance that appears indifferent, fatalistic, and apathetic.

The voices of the Pima women are omnipresent in Diabetes Among the Pima. Smith-Morris credits years of participant observation for the cultural sensitivity and trust that contributed to the success of her formal interviews. She explains the necessity of finding an environment where her subjects were most comfortable speaking, even if it meant compromising the quality of her recorded interviews because of the background noise of televisions and children. Her interviews effectively negotiated the obstacles of medical terminology and elicited meaningful conversations about disease within a culture protective of its privacy and reluctant to discuss health concerns. Structurally, the monograph...