By: Elizabeth J. Pfeiffer
I was preparing to conduct the final interview of my dissertation research in Mahali (a pseudonym), Kenya, as Jane sat down across from me for the third time. We were sitting in a consultation office in the truck container clinic where we had agreed to meet on that cold and raining August morning. The lump in my throat had been with me since I had awakened that morning. I knew its persistence was due to the fact that it was my last day of nine months of ethnographic fieldwork, and that I would soon need to say goodbye to people and places I had come to care about very much. I was there to study AIDS-related stigma.
During the two times we had met before, and as Jane traced the various trajectories of her life with me, I was especially struck by how prominently HIV/AIDS featured across her story. This probably shouldn’t have surprised me, since people living in Kenya have experienced one of the world’s harshest AIDS epidemics. I had decided that for our final life-history interview together, I would begin our time with a single question: “Tell me about your life as it relates to HIV/AIDS.” This launched Jane into a very lengthy and detailed story, or oral history, about the epidemic from her own subjective positioning. Jane had come to live in Mahali, a small urban town located along a major highway in Rift Valley Province, in the 1980s, only a few years before the emergence of Ukimwi or Slim, as the disease was originally named in this part of the world. Her narrative about a circulating virus—spanning across all the decades of the epidemic—not only shed light on some of the ways that the stigma associated with the now chronic illness HIV/AIDS operationalized at my field site, but on the complexities of the contemporary “modern” and interconnected global world.
Jane first came to learn about Ukimwi through local talk, gossip, and media representations—or the words of others—about prostitutes who were suffering from a mysterious disease. Soon the rumors in Mahali about Slim became uncomfortably personal for Jane. It was through a circuit of local gossip that she learned that her husband’s lover was suffering from Ukimwi. This news propelled Jane into action and to make the following observations and conclusions:
I very much wanted to go and to see this disease that I had been hearing about …. [Then]I got the chance of going to see [my husband’s lover] …. Because I wanted to see. How does a person look like when she has HIV, the Slim? So…I saw how slim she was and how she was changed. …
After she died … many others followed her [and they died also]. And I think even they did not follow [her in death] because they were sick, but because of knowing how they had been sharing [sexual partners]. … I started seeing a lot of dying. …. We were hearing reports that HIV was so high in Mahali. So the [newspaper] articles could announce to the entire country, “Take care [be careful] in that place.”… It was the highway.
From the start, through a combination of circulating—local, national, and international—stories about HIV/AIDS, people living in Mahali came to think about, respond to, and even experience the AIDS epidemic and notions of risk in very particular ways. HIV/AIDS was understood not only to be a “prostitute’s disease,” but because of its positioning along a major highway, dangerously rampant in Mahali. At the same time, people could even die of Ukimwisimply by knowing that they had engaged in sexual relations with an allegedly infected person. All of these stories impacted the ways people thought about their community, the lives (and deaths) of those living in it, and themselves.
Jane went on to share numerous stories about the various ways that HIV/AIDS had impacted her life. At one point, she spoke of her sister’s boyfriend, who had died of complications associated with AIDS. She offered the following words to describe her experience at his burial, and that further underscored for me the potency of spoken words—their significant role in the activation of AIDS-related stigma—and the ways that people sometimes used them to spontaneously “attack”one another:
… The boyfriend died. …When we went for the burial…the brother [of the deceased] attacked us [with words]! In front of all the mourners. He asked [those in attendance]: “You people who are here. Do you know when a person died—when anything happened long time ago—what people would do? How could they communicate? Because there were no phones.” [He] went on, “Like by screaming—you hear people screaming. You would know there is a danger. You could burn smoke. When you see the smoke that was going upwards, you knew there was danger….So, now this one here today” Now [he was] hitting the coffin. “This one is danger. This was my brother and my brother died of HIV. And I want to tell all…. You know the [girlfriend]—the girl he was moving with! Don’t greet [the girl or any of her relatives]. Don’t talk to them!” Oh—I felt like fainting …
As Jane makes overt in the above passages, words in Mahali were powerful, sometimes even more so than the virus, itself. At the same time, people living or associated with HIV/AIDS were construed as dangerous—with the potential to threaten what mattered most to all people living in Mahali (both the stigmatized and those doing the stigmatizing), such as life chances, health, reputations, and relationships. To temper the threats felt by the brother of the deceased, he attacked Jane’s whole family with loud words that served to both shift blame onto Jane’s sister for the man’s death, and to communicate that the girlfriend was dangerous, and thus a person (and family) to be feared and socially avoided.
Daily life for Jane and her sister—as it was for all Mahali residents—was dangerous, uncertain, and circumstances could (and did) change rather unexpectedly. It was also full of insecurities, inequitable suffering, and plagued by historic legacies of political and ethnic violence and conflict. It is within this context that my dissertation explores the circulation of all kinds of information about HIV/AIDS—from national HIV/AIDS statistics, anti-stigma campaigns, and global treatment and prevention messages, to medical reports, illness narratives, eulogies, memories, and local gossip and rumors—that worked their way into local narratives or what I refer to as viral stories. Drawing on the lived experiences of people like Jane, I demonstrate the power of words—as people circulated, processed, and expressed them—as they produced frictions within and between people, and thus fueled AIDS-related stigma in this part of the world.
An anti-stigma campaign sticker hanging in the community
About the Author:
Elizabeth (Libby) J. Pfeiffer had conducted anthropological research in the USA, Jamaica, and Kenya that broadly explores issues related to health, social inequalities, gender, globalization and development, and education. She recently (January 31, 2014) earned a PhD in Social-Cultural Anthropology, with a doctoral minor in African Studies from Indiana University, Bloomington. With funding from a NIH pre-doctoral training fellowship award in Translational Research (TL1RR025759; A. Shekhar, PI) and a Kinsey Institute Graduate Student Research Grant, Libby conducted ethnographic research that centered on the social and structural roots of AIDS-related stigma in a community located along a major highway in western Kenya. She wrote and successfully defended her dissertation, Viral Stories: HIV/AIDS, Stigma, and Globalization in Kenya with the support of an Indiana University College of Arts and Sciences Dissertation Year Fellowship Award. In February 2014, Libby began a T32 NSRA post-doctoral training fellowship in STD/HIV research at the Indiana University School of Medicine, which will enable her to continue her research endeavors in Kenya. Please contact Libby: firstname.lastname@example.org