AIDS Stigma in South Africa

Fellows Fall 1999

By Kai Wright

June 08, 2009

Durban, South Africa - Fall 1999 -- Winnie, a 36-year-old Zulu woman, discovered she is HIV positive when she got sick about a year after being raped. Terrified and alone, she confided in her younger sister, who informed her mother, who ordered her exiled within their home. "They don't touch my dish, they don't take my washing. (My mother) didn't want to hear anything about this, because what they are thinking is, 'You got the virus because of not taking care of yourself, it is a thing for prostitutes,' and so on. That's how they judge us.''

Winnie turned to her best friend for support; the friend shunned her and began spreading the word about her infection. "So I don't advise to have a friend, because she will start gossip -- It's better to be alone.''

In South Africa, Winnie's home, 1 in 8 people are HIV positive, compared with about 1 in 300 in the United States. The national health ministry estimates another 1,600 South Africans are infected daily -- meaning the epidemic is growing faster here than anywhere else on the globe. But South Africa is not alone in the region. The four countries with the highest HIV infection rates in the world are located in Southern Africa: Botswana, Namibia, Swaziland and Zimbabwe -- in each of which, more than 1 in 5 adults are believed to be HIV positive. Still, in 1998, more than of the 1.4 million new infections globally were found in South Africa.

In the last year, the world's policy-makers have slowly begun to notice this carnage. The Clinton administration, which has never before requested an increase in the global AIDS budget, last summer began inching upward the amount of U.S. foreign aid targeted at fighting AIDS -- boosting it from $112 million in 1999 to a proposed $325 million for 2001. African leaders, who once denied the virus' existence, now champion their own national AIDS programs. Even the U.N. Security Council, having never before focused on a health issue, convened in January to explore how it can help African societies corral HIV before it captures more people like Winnie.

But those working on AIDS in Africa say none of these programs will succeed without a massive attack on stigma surrounding HIV. All of the numbers on HIV's prevalence are estimates, because the vast majority of those infected have never been tested and don't know they are carrying the virus. Of the few who do, most will never tell their friends, families or even sexual partners. That is because they've heard too many stories like Winnie's -- stories of rejection, discrimination, and even deadly violence. "Some will tell you it,'' shrugs a frustrated Sister Thabile Sibankulu, a nurse in the HIV clinic for a township just outside of Durban. "I've never disclosed my HIV status, but the only thing that I've done, I've practiced safer sex. Others are afraid of breaking their relationships. Because many of our women are dependent on their husbands, either with HIV or otherwise. So if they tell their partner they are HIV positive they will suffer.''

It's a vicious cycle. This stigma persists, in a society where few families haven't been touched by the virus in some way, precisely because most people with HIV either do not know they have the virus or will not admit it. The resulting silence about the lives of HIV-positive people feeds the existing stigma. The stigma in turn convinces people that the last thing on earth they want is to take an HIV test. In Winnie's province of KwaZulu-Natal, out of a population of nearly 8.5 million, a mere 4,800 people took voluntary HIV tests in 1999. The virus' stealthy spread thus continues.

Winnie didn't know Gugu Dlamini, but like everyone else living with HIV in KwaZulu-Natal, she has heard the tragic story. On World AIDS Day in 1998, Dlamini "came out'' in her township as HIV positive during a campaign to reduce stigma associated with the disease. Two weeks later, Dlamini's boyfriend found her body, beaten and unconscious, discarded on a roadside near her home. She died without ever waking. Today, police have released the only suspects and all but closed the case.

To Winnie and others in the area, the lesson is clear: At all costs, conceal your HIV infection. Many who were once open about their status have renewed their silence.

For South African President Thabo Mbeki, who has pledged to lead the continent in responding to the epidemic, this is the message that must be countered. First, he must face the history of his nation's battle against AIDS. The fading "AIDS kills'' billboards and placards around KwaZulu-Natal and throughout Southern Africa are a reminder of the initial efforts to simply scare people into awareness of AIDS. Today, with the well-meaning encouragement of international supporters, African leaders have honed that message into warnings that AIDS kills the economy, too. But people living with the disease are lost in both of these campaigns and, ultimately, they have come to be seen as the agents of society's devastation.

"It's the way, I think, this whole HIV thing was presented to us as a country,'' reasons Bonga, a 27-year-old HIV-positive Zulu man who has spoken to only one person about his infection in four years. "AIDS is looked at as a disease for bad people -- for the prostitutes, for the gays, for the people that have really been living evil. So now the minute you submit to such, then obviously you are one of these evil people... It's not good enough to go to schools, to go to these workplaces and clinics, to put up posters saying, 'AIDS kills, please take a condom. AIDS kills, please take a condom.' What about the people that are already infected?''

If Winnie's is the story of HIV's stigma in low-income townships, Bonga's story is that of the black middle-class. Handsome, confident, smartly dressed in his casual khaki pants, pullover and ball cap, the American-educated Bonga should be the picture of black South Africa's post-apartheid renaissance. Instead, he has been unemployed for the better part of five years, and he's recovering from drug and alcohol abuse. Bonga is healthy; the virus itself has not affected him yet. His problems stem from the rejection he's faced since discovering the infection.

In 1994, a young and ambitious Bonga won his first professional job offer. The company sent him for a pre-employment HIV test. "The confirming results came back and I was not hired. That was that,'' Bonga numbly recalls. "They could not make an investment in me.'' He went on to secure three more professional job offers, only to have them revoked after each employer discovered he was HIV-positive. So he moved to KwaZulu-Natal's capital, Pietermaritzburg, and launched a career detailing stolen cars -- a field in which employers didn't ask questions about his health.

Pre-employment HIV testing is now illegal in South Africa. But many say the practice still continues in informal sectors such as domestic employment. Other examples of unchecked discrimination abound. Banks, for instance, require loan applicants to hold life insurance policies that cover the value of a sought-after loan. But life insurance companies require HIV tests as a prerequisite for coverage and legally reject those who test positive.

Last month the insurance industry convinced lawmakers to omit protection against bias for people with HIV and AIDS from a new sweeping anti-discrimination law. The original version of the bill included people living with the disease, but insurance industry lobbyists argued that the legislation would cripple business. For Winnie, Parliament's acquiescence means she still can't get the home loan she needs to break free of the isolation she bears in her family's house.

Mercy Makhalemele, who founded KwaZulu-Natal's association representing people with AIDS, is the person in which Bonga confided. Countless other people with HIV in KwaZulu-Natal have done the same. Prior to Dlamini's murder, Makhalemele worked to convince others to join her in publicly disclosing their HIV status in order to fight stigma. She doesn't want to wait for the government; she believes that the only way to fight AIDS in South Africa is to build a movement of people living openly with the virus.

While white South Africans are making strides -- last year a white Supreme Court judge disclosed that he is HIV positive -- the work is just beginning in the black community. In KwaZulu-Natal at least, Dlamini's murder derailed the process.

Makhalemele has suspended her disclosure campaign. She thinks there first must be an infrastructure to support people like Winnie and Bonga when they come out and risk losing everything. So she's rounding up AIDS activists from around the region to join her in showcasing their efforts to the hordes of Westerners who will converge on KwaZulu-Natal for a world AIDS conference in July. Her goal is not just to drum up funding, but also to build partnerships with members of the global community of people living with HIV and AIDS. With more seasoned help, she reasons, they can launch a movement.

"People are now somehow very scared because of this situation. And we can understand it. If people are going to be encouraged (to come out), they have to have the support,'' Makhalemele says. "It is time that men and women in the first world who are HIV positive start establishing partnerships -- just like governments do. To me, that's the most practical thing.''