I have a confession to make. It is not one that particularly flatters me. Instead, it reveals just how ignorant and foolish I really was, how little I really knew.
When I came to South Africa, I expected to find HIV/AIDS everywhere. I expected for it to dominate the headlines and fill the news channels. I expected to hear politicians orating about it from parliament and people talking about it as they gathered around a table. I expected massive campaigns with organizations scrambling to recruit volunteers. There was even a tiny little morbid part of me that expected to find streets full of cadaverous AIDS sufferers. You know, like the ones we see all the time on our news channels — babies with distended bellies and walking ghosts with vacant eyes.
But in truth, none of these expectations have materialized. The news is far more likely to report the latest episode of political squabbling within the African National Congress or the Springboks’ victory over some other rugby team. When the brand new Health Minister Barbara Hogan broke with a decade of government stonewalling and confirmed the link between HIV and AIDS, the story headlined the BBC news Web site, but was conspicuously absent from most local newspapers. Those organizations I was so eager to join proved equally elusive. Looking for volunteering opportunities involved lots of begging, footwork and a good dose of luck. Outside of classrooms and seminars, I heard hardly a whisper about the problem.
South Africa is a country with 5.5 million HIV-positive residents. That, according to the United Nations, puts South Africa in the unenviable position of being the country with the largest population of HIV-positive people in the world. It means that a whopping one in five South Africans is infected. Despite numbers like these, the epidemic seems spectral. It is as if it exists only in the pages of the World Health Organization (WHO) reports and in the ubiquitous offerings of free condoms in restrooms.
Obviously, this could not be true. HIV/AIDS, despite the claims of conspiracy theorists, is real. It claims approximately 1,000 lives a day. Reports commissioned by think tanks and by the South African government warn that this drain will have terrible implications for the economy, indeed for the very future of South Africa democracy. It can also be seen in the ragged children who haunt the curbs and dodge the footsteps of tourists and other pedestrians in hopes of a coin, a half-eaten candy bar, anything. HIV/AIDS is, after all, notorious for taking its victims from the young and vigorous, leaving behind an entire population segment of AIDS orphans.
Why then does the epidemic remain so elusive? How can something so large, so prevalent leave so few footprints?
I suspect that much can be attributed to stigma. The nature of the disease, particularly its mode of transmission, makes its victims untouchable. Despite the efforts of the government and others, these people are seen as promiscuous, immoral or at the very least irresponsible and foolish, and therefore somehow deserving of the illness. Stigma is so bad that, despite laws meant to prevent such behavior, the infected face losing their jobs, their homes, their friends and sometimes even their lives. In one particularly horrifying case, Gugu Dlamini, an HIV-positive activist, died when her neighbors beat her to death. They claimed that Dlamini had shamed the community by declaring her status on the radio.
The fear of such consequences extends also to families. One of the few people willing to discuss the subject, a fellow student, told me that when her aunt died of an AIDS-related complication, her family refused to let the doctor write HIV/AIDS as the cause of death. Instead, they pressured the doctor into substituting tuberculosis. This is quite common here. Common enough, in fact, to warrant the addition of a line for underlying cause of death to the death notification form. Yet, by all accounts, most AIDS deaths are still misreported, often at the insistence of worried relatives.
HIV/AIDS is overwhelming and frightening. Its scale is immense, its complexities numerous. The epidemic puts huge pressure on all of us, whether we are directly affected or not. In reaction, it is tempting to cope through stigma and silence. It allows us to convince ourselves that we are safe. Stigma lets us believe that we are better than the victims, while silence simply ignores their existence. But in order to work, they force us to strip others of the respect they deserve as fellow men and women. They provide no solution and contribute to the problem.
For the infected and their families, the costs are obvious. For the rest of us, they are not as easy to see, but are ultimately just as devastating, although in a different way. Instead of losing our lives or our loved ones, we, if not careful, face losing our humanity.