Let Their Voices Be Heard: Empowering Women in the Fight Against AIDS

At the recent U.N. Fourth World Conference on Women in Beijing, a new issue became a critical part of the delegates' packed agenda: the growing threat of the AIDS epidemic to women.

More than 30 events--workshops, panel sessions, press conferences, youth meetings--challenged participants at both the official conference and the concurrent NGO Forum in Huairou to learn how HIV/AIDS, from which most women were once thought to be "immune," now endangers women and girls in every corner of the world.

On September 5, designated Women and AIDS Day by the United Nations, a panel of HIV-positive women spoke of the long and painful struggle against fear, shame, rejection and illness that had transformed each into an HIV/AIDS activist. A young South African, Prudence Mabela, told the overflowing room about the cruel treatment she had received from her university and her community when her HIV status was revealed without her consent. Her proud voice, calm and clear despite the horror of the story she told, has become an invaluable tool in the movement to demand support and treatment for HIV-positive women around the world.

The Growing Threat to Women

Ten years earlier, though, at the U.N. Decade for Women conference in Nairobi, the subject of HIV/AIDS never came up, even though Kenya and neighboring nations in east and central Africa were then at the global epicenter of the epidemic.

In retrospect, this is not surprising. By the year 2000, more than 13 million women will be infected, and 4 million will have died from AIDS. Global HIV transmission rates by then will be slightly higher for women than for men. But in 1985, those numbers were very different: for every infected woman, ten or more males were HIV-positive, depending on the country. "High-risk groups"--gay men, commercial sex workers, intravenous drug users, hemophiliacs--were the prevailing prevention targets, and few studying the disease looked beyond these limited categories to understand vulnerability. Ten years ago, many epidemiologists, physicians and behavior specialists failed to grasp that HIV would not respect the artificial boundaries that mainstream science had drawn around it. Apart from individual women who were sex workers or who took drugs, women as a whole were not believed to be in serious danger of contracting the virus, particularly monogamous and married women and young girls.

That year--1985--was also the year that my own sociological research on AIDS in Uganda began. Like my colleagues, I, too, did not yet perceive the emerging threat to women. But one day in Kampala I saw a newspaper photo that, in an instant, revealed the ultimate direction of the epidemic.

It showed a young village woman dying of AIDS, sitting in the dust in front of her hut. She was unspeakably thin, skin and bones. The disease had sapped the life from her. I know about village life; my in-laws are villagers, and I was well aware how far from the centers of power these people live their daily lives. I remember thinking, this is a woman who will never have a voice.

The Gender Perspective

Since 1985, we've come to understand more about why the rates of infection for women and girls have skyrocketed. The reasons have less to do with biology or behavior--the focus of most HIV studies--than with fundamental issues of power and control.

Because of their low social status, women and girls throughout the world lack the ability to determine many things about the course of their own lives. Limited access to economic resources and fear of violence force many women to yield control over sexual relations to men.

Few would question that this dynamic controls the lives of impoverished female commercial sex workers in developing countries. But economic dependence also plagues monogamous and married women unable to maintain themselves and their children without help from better-paid male partners. In many developing countries, some women have several steady male partners who help support them and pay for their children's school fees.

Many cultures tolerate multiple sex partners for men, and often women have reason to believe that their male partners may be infected with a sexually transmitted disease caught from someone else. When women cannot control their sex lives, they cannot say no to men--including their husbands--who they fear may be infected. Afraid of a violent reaction or abandonment and economic ruin, they cannot force, or sometimes even ask, their male partners to use condoms so that both can be protected. While many men, aware of the dangers of HIV and other STDs, voluntarily use condoms, other men find the request offensive or even evidence that the woman herself has not been faithful. Without a prevention method they can control, millions of women face the threat of HIV infection every day, both throughout the developing world and in nations like the United States, where AIDS is the single greatest killer of African American women in their most productive years.

The epidemic has created a demand for younger and younger female sex partners, who men believe are less likely to be infected. In different parts of Africa, "sugar daddies" court schoolgirls, offering gifts and cash. In Asia, brothel brokers seek rural families that will sell their daughters, to be offered to HIV-wary male clients in the cities. Unprotected sex is especially risky for girls, who, like all women, have higher biological vulnerability to HIV infection than men. It's little wonder that, in many parts of the world, girls and young women 15 to 24 years old now have almost twice the infection rates of males the same age.

Too often, then, the needs and vulnerabilities of women and girls are overlooked by HIV prevention programs that do not take the question of power into consideration. Too often "universal" behavior change messages--"Use a condom every time you have sex"--bypass entirely the question of who controls the decision to use a condom at all. Too often women--particularly those for whom "Be monogamous" is either already a fact of life or an economic impossibility--find little of value in what prevention programs promote. Because so many standard prevention approaches fail to reach them, women remain far more ignorant about the epidemic than they should be after more than ten years of HIV programming--with deadly consequences.

An Empowering Solution

Meaningful prevention programming for women requires a different kind of strategy, one that has at its heart the concept of empowerment: creating programs that help women gain control over their economic, social and sexual lives.

Empowerment of women was a primary theme throughout discussion of all the issues at the Beijing conference, from health and reproductive rights to economic development and education, from ending violence against women to legal reforms to strengthen their rights. For HIV prevention, empowerment takes the forms of economic opportunity to lessen women's dependence, social and political advancement to give women a voice, and HIV prevention methods that women can control.

Empowerment as an HIV/AIDS prevention strategy for women is a central focus throughout this special issue of AIDScaptions. Geeta Rao Gupta offers an opinion on how to close the gap between discourse on gender sensitivity in HIV prevention and the reality of daily program practice. Lawyer Jane Kiragu examines efforts in Kenya and elsewhere in Africa to reform long-standing discriminatory laws that inhibit the ability of women and girls to protect themselves from HIV and, once infected, from impoverishment. Nash Herndon updates readers on development of women-controlled HIV prevention methods such as the female condom and vaginal microbicides. From Thailand, Kari Hartwig reports on a special workshop for AIDS prevention professionals from Southeast Asia, one of the first to examine HIV transmission among women as a cross-border issue requiring regional cooperation.

Also critical for women is the issue of care. Women are and have always been the caregivers for their families and communities. The epidemic has put enormous pressure on women in many regions of the world, who must simultaneously care for ill husbands and other family members, look after children and earn income, even if they themselves are sick, writes Kathleen Henry.

Limited funding for gender-sensitive prevention and care programs is a serious problem in developing countries. Peggy Scott, Julie Becker and Rita Badiani examine the value of integrating HIV prevention into existing family planning programs. Halima Shariff looks at the scarce resources available in developing countries for women-oriented counseling and treatment programs to slow perinatal transmission of HIV. And Telma Cavalheiro, an HIV prevention activist in Brazil, describes how nongovernmental organizations in her country have led the way in reaching women with HIV prevention education despite tight budgets.

Making the Connections

Since I saw that stark photo in 1985, the epidemic has come closer and closer to home for me. In the last ten years, I have lost many women friends and colleagues, from Uganda and elsewhere, to AIDS. I have seen whole regions of Africa devastated by AIDS, and observed the epidemic's alarming spread into Latin America and Asia.

Yet I am also convinced that the international women's movement, recently reinforced by the Beijing conference, can help strengthen the effort to protect women from HIV. A disease fueled by ignorance, economic and political disenfranchisement, and sexual powerlessness, AIDS cuts across common issues facing all women: domestic violence, trafficking of girls and young women, better health, improved educational and economic opportunities, equality under the law. Unfortunately, many fighting to have the voices of women heard on these issues have been slow to incorporate HIV/AIDS prevention into their agendas, which can only happen when women see HIV/AIDS in one woman as a potential global threat for all women.

The tactics and lessons of the women's movement--networking to educate and empower, promoting analysis from a woman's perspective, understanding the need to reach women "where they are," encouraging women to speak of their experiences--are ones that HIV prevention programs must learn to adopt, with input from the women they serve. As approaches designed by women become more and more part of standard HIV programming, I believe we will achieve what may not have been possible ten years ago: giving women a voice against HIV/AIDS.

-- E. Maxine Ankrah, AIDSCAP Women's Initiative

Dr. E. Maxine Ankrah is senior advisor, AIDSCAP Women's Initiative, which is responsible for increasing gender-aware programming throughout the AIDSCAP project.