Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease

Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease

Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease

Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease

Synopsis

On average, black Americans are sicker and die earlier than white Americans. Uncertain Suffering provides a richly nuanced examination of what this fact means for health care in the United States through the lens of sickle cell anemia, a disease that primarily affects blacks. In a wide ranging analysis that moves from individual patient cases to the compassionate yet distanced professionalism of health care specialists to the level of national policy, Carolyn Moxley Rouse uncovers the cultural assumptions that shape the quality and delivery of care for sickle cell patients. She reveals a clinical world fraught with uncertainties over how to treat black patients given resource limitations and ambivalence. Her book is a compelling look at the ways in which the politics of racism, attitudes toward pain and suffering, and the reliance on charity for healthcare services for the underclass can create disparities in the U.S. Instead of burdening hospitals and clinics with the task of ameliorating these disparities, Rouse argues that resources should be redirected to community-based health programs that reduce daily forms of physical and mental suffering.

Excerpt

During my first visit to Children’s Hospital East (CHE), a pediatric teaching hospital located in an urban center in the Northeast, there were no visual surprises. I had just spent three years conducting fieldwork at Children’s Hospital West (CHW) and had become accustomed to everything from the alternating commercial linoleum and broadloom, ultraperformance carpet (in a style named “Traffic”) to the young cancer patients hooked up to several intravenous drips, pushed on gurneys or in wheelchairs, who clarify the hospital’s moral purpose. Inside CHE, colorful murals and playful structures welcome families in the main entrance while large pictures of smiling multiethnic children line the hallways. The people walking through the hospital mirror the racial diversity of the photos on the wall, and an initial reading of the hospital can make one extremely hopeful that multiculturalism has arrived. At second glance, however, one notices that fairly clear racial and ethnic divisions mark status differentials. Representative of a pattern throughout the United States, the hospital administrators, physicians, nurses, and therapists at CHE are generally not representative of the city’s ethnic diversity. Instead, the ethnic faces at CHE belong primarily to the black and Latino health care consumers and the low-wage staff.

I was scheduled to visit Eva, a twenty-one-year-old sickle cell patient whom I met through a social worker. Eva, an adolescent with a café au lait complexion, moved her tall, thin body slowly and deliberately, as if her bones were made of lead. Despite the slowness of her gait, she spoke . . .

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