LAWRENCE — As increasing numbers of people living with HIV in Africa access life-saving medications, stories of the epidemic's heroes have begun to circulate globally. Across the continent, African women, in particular, are leading the charge in advocating for political, socioeconomic and public health reforms to stop the spread of the virus and care for HIV-infected and affected persons.
However, in her new book on the epidemic in northern Nigeria, a University of Kansas professor is the first to detail a largely untold story about how ordinary women are courageously living with the disease, defying its stigma and seeking a brighter future for their families, largely outside the public's eye.
"Much of what we hear in the news are stories about political leaders and activists who outline critical, but very broad, goals for the future. They say, 'We want an AIDS-free generation' or, 'We want antiretroviral therapies for everyone,'" said Kathryn Rhine, associate professor of sociocultural anthropology. "The women with whom I worked sought futures that displayed their dignity and respectability. It's not only that they want this kind of life for themselves; they are actually making it happen through marriage, childbirth, education and work."
Rhine's book "The Unseen Things: Women, Secrecy, and HIV in Northern Nigeria," published recently by Indiana University Press, features her ethnographic research on how HIV-positive Nigerian women live meaningful lives with this condition.
Her research began in 2003 as the United States and others global donors ramped up aid to African nations in order to make antiretroviral therapies widely available. In Nigeria alone, close to 500,000 people have collected subsidized medications, and as many as 1.5 million more people are under medical supervision or on waiting lists for treatment.
As a result of these medications, an HIV-positive diagnosis is no longer a death sentence. Antiretroviral therapies have also drastically reduced the risk of women infecting their children during pregnancy. Rhine said the success at reducing fatality rates has introduced the issue of what it's like to live with this deeply stigmatized disease.
"HIV has been traditionally thought of as a disease of prostitutes and of immorality, like 'God's punishment' for something you did in your life," Rhine said. "And women are much more susceptible than men to being blamed for it."
In addition, the misperception that these women will never recover from a deadly disease leads to another stigma. Some people believed that they should be kept at a distance and treated as outcasts in their communities and families, she said.
"While global health interventions may indeed transform patients' overall health and life expectancy, scholars and activists often focus on the significance and consequences of antiretroviral therapies for the nation over the social relationships that produce health and well-being among patients themselves," Rhine said. "I explore the aspirations, dilemmas and everyday lives of women participating in the world that HIV prevention and treatment campaigns have opened up."
A great deal of her research for the book focuses on gender inequality, especially how and why married women are more likely to contract HIV than single women are. This population is typically not a focus in global prevention campaigns. Rather, most efforts center on promoting abstinence before marriage and fidelity.
"Many of these women abstained from sex until they were married. Many of them were faithful to their husbands, but they still contracted the disease," Rhine said.
She found a key element of the women contracting HIV centered around trying to protect their husbands' secrets. "Not just their suspicions over HIV infection," Rhine pointed out, "but also infidelity, infertility, abuse and a lack of economic support, among others."
"In many ways protecting your husband's secrets reveals your commitment to him, your marriage and your family. It demonstrates your love and even your faith in God," Rhine said. "Yet at the same time, as these women are protecting their husbands' secrets, they are also being exposed to the virus. If a wife asks her husband to use a condom, it would imply that she does not trust him or that she has betrayed his trust, which would jeopardize their relationship."
She said that a secret functions as a kind of bargaining tool for women in exchange for their husbands' care and at least the appearance of a virtuous marriage. But in the end, things often fell apart. Women would contract HIV, fall sick and face the possibility of divorce or abandonment by their partners, families and communities.
"My point isn't to say these women should be going public immediately upon learning their status but rather to emphasize the dignity that they seek through discretion. Women ultimately want partners who can know and love and support them for who they are," Rhine said. "They want to be able to disclose their diagnosis on their own terms, which makes sense in this cultural context and really all cultural contexts."
Her research also revealed the importance of counseling and support groups. Rhine learned that these organizations often functioned as a matchmaking service where divorced or widowed women with HIV were able to meet HIV-positive men.
"That was great for them because if they were finding a partner in a support group, then they didn't need to worry about this question of disclosure," she said.
Rhine spent more than 13 years working with the women, watching them fall into and out of love, completing their education and making a living, just as they observed her go through similar life stages.
"The women in my book are trying to craft lives that meet the kinds of social and cultural ideals that women around the world seek." Rhine said. "Their stories expand readers' understanding of what it means to live with hope, dignity and respect, not only in the context of disease but also through all of our deeply human struggles."