Targeting inequality: Rouse aims for social justice in study of medicine, education

Carolyn Rouse

The work of Carolyn Rouse, a professor of anthropology and African American studies, takes a wide-ranging approach to studying inequality and social justice. She focuses her scholarship on medicine, religion, education and development. Her research has taken her into hospitals, mosques and homes in this country, as well as into village homes and government offices in Ghana.  

Photo: Brian Wilson

When she teaches "Race and Medicine," Princeton professor Carolyn Rouse invites black students to leave class 10 minutes early. She explains that this time would be needed to make up for shorter life expectancy -- on average blacks live five to six years less than whites in the United States.

Through this startling offer, typically not acted upon by her students, Rouse initiates a discussion about racial disparities in health care, a topic that is just one conduit to her core intellectual and personal interest: social inequality.

A professor of anthropology and African American studies who has taught at Princeton since 2000, Rouse takes a wide-ranging approach to studying the production of inequality and why people accept the systems that uphold it. She focuses on four areas that undergird much of society: medicine, religion, education and development. Her research has taken her into hospitals, mosques and homes in this country, as well as into village homes and government offices in Ghana, where she is working to build a school.

From studying health disorders to explore racial differences in how health care is provided, to addressing a range of social problems by founding a school in West Africa, Rouse is shining light on the scaffolding of society.

Taking a close look at the structures of daily life allows Rouse to expose and challenge cultural assumptions that often reinforce inequality. She believes that it is too easy for people to close their eyes to the world immediately around them.

"It would be like living in L.A. and not seeing the smog," said Rouse. "When you go to other countries you might ask, 'Why do they put up with this? Why are these people rich and those people poor?' But when you're in your own country you have all sorts of explanations for why Trenton is Trenton and Princeton is Princeton."

Finding a language

Rouse's engagement with issues of inequality and social justice emerged early on. "Conversations about inequality resonated with me having grown up as an African American and not having the language to explain inequality," she said. "The only language I was given was that blacks were inferior."

Rejecting that language, Rouse adopted others. As an undergraduate at Swarthmore College she spent a semester in Kenya and discovered that she loved to "film and talk to people," passions that led first to filmmaking and then to graduate school in anthropology at the University of Southern California.

"Talking to people" led to Rouse's first book, published in 2004, which uses the lens of religion to explore a cultural language new to her. In "Engaged Surrender: African American Women and Islam," she describes her fieldwork tracking the lives of several African American women in Los Angeles who felt empowered by becoming Muslim.

"Uncertain Suffering" book cover

Rouse then studied how health care is perceived and received across racial lines in the United States. In her book "Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease," published in 2009, Rouse examines the delivery of health care services for a group of adolescent patients with sickle cell anemia, a lifelong blood disease that primarily affects blacks and is expensive to treat.

Her focus was not on policy, but on institutional and cultural discourses that shape the ways disparities in health care occur and prevail.

"My problem with the conversation about racial health care is that we have (these) conversations that are built on other conversations that are culturally constructed, for instance about genes and race," said Rouse. "I don't know how many times one has to say that the color of one's skin isn't determinant of one's genetic makeup."

Central to her fieldwork, which included more than 400 interviews of patients along with their families and medical teams at two children's hospitals, was asking questions about pain and suffering in order to unearth cultural assumptions about race.

"I went into this because somebody said that adolescent boys [with sickle cell disease] were being treated badly; that they were thought to be drug-seeking and malingering," said Rouse.

Her research revealed that even if a patient did not have specific complaints about their individual treatment, staff at hospitals systematically understated a sickle cell patient's pain because they assumed that black patients, who also are often poor, had different ideas about suffering and were excessively looking for painkilling drugs.

In "Unequal Suffering," Rouse writes: "Why does the black body continue to be treated as less capable of suffering and more capable of causing suffering?"

"Carolyn has a wonderful ethnographic sensibility, and her book, 'Uncertain Suffering,' greatly helps us to understand the routine medical and social practices that perpetuate health disparities," said João Biehl, a professor of anthropology at Princeton whose own work focuses on medicine and culture.

"She truly cares and is deeply committed to making a difference in scholarly and public debates on race and medicine in this country and beyond," added Biehl.

For Rouse, the reality of illness too often is bundled into "narratives of suffering" that are used to promote a disease in order to garner attention and funding.

"For people whose job it is to open up health care access for sickle cell patients, it is imperative for them to create a narrative about suffering that relieves the patient of responsibility for their pain," said Rouse. "It is only after the patient is no longer perceived as drug-seeking that responsibility for treatment and outcomes falls on the state."

Rather than resort to such narratives, Rouse suggests that positive ways to address health care disparities, such as for patients with sickle cell disease, can grow out of community-based health programs that offer long-term disease education and social support. Such programs might be organized through settings such as churches and holistic health centers. For Rouse, social empowerment is a significant step toward social justice.

Carolyn Rouse and Ashley Schoettle

AT LEFT: Rouse is founding a school in Oshiyie, Ghana, an endeavor that has involved Princeton students, including Ashley Schoettle, whose experience in Ghana inspired her to write a senior thesis this year on foreign aid and its limitations. MIDDLE: The school, shown being built, will open to 30 students in September. Rouse said she hopes the school will address some of the "asymmetries in knowledge and wealth" in the area by providing scholarships to the community's poorer children. AT RIGHT: Rouse (second from left, wearing backpack) tours Oshiyie, where she has been working since 2006 to learn about the community and establish the nonprofit school. (Photo: Brian Wilson; Satellite view of Oshiyie: Courtesy of Princeton's Digital Map and Geospatial Information Center; Ghana photos: Courtesy of Carolyn Rouse)

Founding a school

Rouse's interest in race and inequality has taken her into a subfield of anthropology known as applied anthropology. Since 2006 she has been working with the community of Oshiyie, Ghana, to build a school. She also is conducting research on land rights, chieftaincy and social inequality in Greater Accra.
The school, Pan African Global Academy, will be the first high school in the immediate vicinity of Oshiyie, which is on the coast not far from Accra, Ghana's capital. It is scheduled to open this September with two teachers and 30 students. After the school is established, Rouse hopes to bring Princeton students on board to help with teaching.

The project is being supported by the Princeton Environmental Institute through the Grand Challenges Program, which provides funding to faculty teaching and research initiatives that address problems associated with development, energy and health.

"I'm actually having a good time, but it is the hardest project I've ever worked on," said Rouse.

She has spent much of her academic leave this year grappling with matters such as providing building instructions for the school, learning about legal issues related to land use and solidifying a web of social relationships necessary to move the work forward. Rouse returned to Ghana this month to check on progress.

"My goal was to have a project that was socially, economically and environmentally sustainable," Rouse said.

Noting that it is "so easy to critique development," she explained that what she can offer as an anthropologist is "the reflexive piece." By working closely with the residents of Oshiyie and asking them about their vision for the community, she is able to assess the resources they have already.

"There are a lot of Ghanaians who because of development think that what they have is inferior and that they have to throw it out," Rouse said. She emphasizes to the residents of Oshiyie that because their town is slated as a tourist destination, its natural beauty holds great value, even as hotels go up nearby.

The school, registered as a nonprofit, will play an especially important role in Oshiyie, she noted. With a curriculum focusing on materials science, agriculture and engineering, it will foreground finding solutions to local problems, such as water scarcity, poor drainage, soil erosion and hunger.

Rouse hopes that some of the "asymmetries in knowledge and wealth" in the area can begin to be addressed by providing scholarships to the community's poorer children. As the school grows, it will become necessary to charge full tuition for wealthy students in order for the school to be financially self-sustaining.

Going forward, Rouse also expects that the school will play a role in enhancing the culture of Oshiyie, as well as supporting economic growth. Her plans include redesigning the marketplace in order to attract tourists and reduce waste. Included in these plans are building a cold storage facility and a museum with a café that will generate revenue for the school. The students will design and run the museum and café as part of their curriculum, and the storage facility will enable their parents, who mostly are fishermen, to freeze their catch to eliminate waste.

"We are going to present a different model of development," Rouse said.

Rouse has created opportunities for Princeton students to participate in the project. Next spring, she will teach a course, "The Anthropology of Development," that will include a studio component for designing the marketplace. Designs then will be shared with a Ghanaian architect who already has visited Princeton as part of planning for the project. After architectural review, Rouse will go over the designs with the chief of Oshiyie, with whom she has been consulting all along, about the best model to adopt.

In addition, four Princeton students -- two undergraduates and two graduate students -- took the opportunity to visit Ghana with Rouse in the summer of 2008. Their experiences have significantly illuminated their own academic and professional pursuits.

Ada Amobi, a member of the class of 2009 who majored in anthropology, will be studying medicine at Harvard University next year and possibly will return to Oshiyie to help Rouse develop particular aspects of the project.

"Ada and I have discussed working together on the health curriculum for the school and conducting a study of wellness in Oshiyie," said Rouse.

Ashley Schoettle, who took Rouse's "Race and Medicine" class two years ago, went to Ghana to pursue her own research into the use of mosquito nets to protect against malaria. She also accompanied Rouse on some of her interviews and planning meetings for the school.

Schoettle, who graduated this month with an A.B. from the Woodrow Wilson School of Public and International Affairs and a certificate in global health and health policy, said it was invaluable to be guided by an anthropologist, especially when she realized that the villagers were not inclined to use the mosquito nets she had provided.

"Professor Rouse helped me to realize how positive intent alone is not sufficient to make lasting change, but that all of the logistics, including cultural affinities and practices, need to be fully understood before implementing programs," said Schoettle. Building from this experience, she wrote her senior thesis on foreign aid and its limitations.

For Amy Moran-Thomas, a doctoral candidate in anthropology, visiting Ghana with Rouse caused her to redefine her research. She now has expanded her study of how people deal with the guinea worm, a parasitic infection that is spread through contaminated water, to include other nutritionally related chronic diseases, particularly diabetes. For the sake of comparison, she also extended her fieldwork to Belize, where she currently is located.

"The opportunity to study in Ghana with Professor Rouse was instrumental in helping me to better align my research framework with people's actual experiences of illness, and the meaning these concerns have in their everyday lives," Moran-Thomas said.

Observing Rouse working on the school project was crucial for another Ph.D. candidate in anthropology, Gwen Gordon, who researched the shifting sands of land laws and rights in Ghana two years ago, and is now studying land rights among tribal populations of New Zealand.

Paying close attention to the way Rouse worked in the community, Gordon said she especially learned from the "careful, observant way she moved in the world."