Death by Denial
- Comm/Pols 268: Human Rights in South Africa
- Amanda Cary
- Students travel to South Africa to explore the changes since the end of the racist "apartheid" system and the advent of multiracial democracy and to write about their observations and experiences. Participants meet for monthly discussions on South African history and politics during the spring semester, and then spend three weeks there, starting in mid-May, observing changes in the status, identity, aspiration and opportunity of formerly excluded groups and reporting on their findings.
Students draft one or more feature articles totaling 12-15 pages that are of publishable quality. Each has a compelling "soft" lead (descriptive, anecdotal or narrative), a clearly articulated theme paragraph, sufficient background that an uninformed reader can navigate the piece without difficulty, and a vivid, well-crafted narrative that carries the reader to a concise ending that wraps up the story. Writers follow Associated Press style and are asked to produce error-free copy.
Many of these articles later appear in the weekly Simmons Voice and other off-campus publications or on the Web. This article appears in a published book that were designed and laid out by Simmons students: Women to Women: Young Americans in South Africa (2006)
Khayelitsha, South Africa—Zeldah waits eagerly for her turn.
The wooden benches in the small waiting room overflow with people. One woman sits motionless in a trance. Another sits calmly as if she were watching a TV soap opera on her living room couch. Most just look exhausted.
Their wait could be up to three hours—on a good day.
Still, Zeldah, with her short spiky hair, looks as if she is on a mission. Finally, it is her turn. She plants herself on the cracked wooden bench as if she were giving an official press conference.
She smiles, relieved that her chance has finally come. She knows she may have to remain several more hours in the cramped waiting room before she actually sees a doctor, but she is not waiting just to be examined. She waits to tell her story.
The healthy-looking 26-year-old speaks softly but with conviction. Her baby got sick in 1997, she says calmly. Then he died. Three years later, Zeldah says she discovered lesions on her own skin and in her mouth, and her hair began to feel like that of a baby.
Zeldah, like many others waiting here, is HIV-positive and has tuberculosis (TB). But she is intent on letting people know that she takes her medicine and is healthy now. When she first tested positive for HIV, her CD4 count, a test of her immune cells, was fifteen, she says. A normal CD4 count, indicating the health of one's immune system, is 500-1500. Her immune system was virtually non-existent, and she was fighting both TB and meningitis.
To treat the HIV, she was put on antiretroviral drugs (ARVs). She also took
fluconazole to treat her thrush, an opportunistic infection of the mouth or throat, and was started on a TB treatment regiment. She says she is now healthy, and she wants everyone to know it.
"I know these ARVs are working," she says, as if testifying in court.
ARVs have been used successfully to treat HIV in America for several years now.
But in a poor township outside of Cape Town, South Africa,eldah feels she needs to convince people.
Those seated around her listen and nod with enthusiasm. They are all awaiting treatment in a clinic run by Médecins Sans Frontières (MSF) in Khayelitsha, twenty miles outside Cape Town, a township of dirt roads and crowded shacks thrown together out of discarded wood, scraps of metal scraps, torn plastic and other odds and ends. The highly unsanitary living conditions contribute to the high rates of HIV and TB.
Other factors that predispose people to infection like poverty, lack of education and gender inequality are also abundant, but that is not all. Under apartheid, such factors were severely exacerbated, and the forced break up of families and communities and the high mobility of workers encouraged a situation where many men engaged in unsafe sex with multiple partners while away from their families.
Eleven years after apartheid was formally dismantled, the scars are still visible in Khayelitsha, but new problems have surfaced where one might least expect them—from within the post-apartheid government of the African National Congress (ANC), which led the struggle for nonracial democracy in the country.
South Africa's new Constitution pledges the government to address the risk factors for HIV/AIDS, but performance is lagging behind principle. The Bill of Rights promises all citizens equal access to healthcare, food, water and social security. It also calls for equal rights to housing, a safe environment, access to information and the right to life., when it comes to HIV/AIDS, these rights ring hollow, as the government has responded slowly and often contrarily to the growing epidemic. This, in turn, has sparked a growing public outcry, led by organizations like the Treatment Action Campaign (TAC), which was founded in 1998 to carry out grassroots education campaigns on HIV/AIDS and to pressure the government to respond to it more effectively.
The TAC has gone head to head with the ANC government through protests, debates and legal action. Its goal, say TAC activists, is to get affordable treatment and support for people living with HIV/AIDS and to develop education about HIV/AIDS prevention.
Before 2003, generic versions of ARVs were not available in South Africa, which meant that the vast majority of the population could not afford the drugs. After a 2003 TAC victory in court, generic ARVs became available, giving many people their lives back.
Noncedo, a TAC volunteer, says she tested HIV positive in 2001. Her doctor told her mother that she was going to die because treatment was not available. Today, she takes ARVs and lives a normal active life.
Many TAC volunteers are HIV-positive themselves, and they are passionate about education, prevention, and affordable treatment. They say they are holding their government accountable to the Bill of Rights, and they demand changes in the way the HIV/AIDS epidemic is being handled.
President Mbeki has long had a controversial stance on the issue. He has made statements doubting both that HIV and AIDS are connected and that HIV is sexually transmitted, despite overwhelming scientific evidence to the contrary. His health minister, Manto Tshabalala-Msimang, has also made questionable assertions about the value of good nutrition to treat HIV instead of ARVs.
As a result, many South Africans do not know what to think. And they are scared.
Criticism against the government is a sensitive topic here. The ANC dominates the government with more than 65 percent of the seats in Parliament and is held in high esteem for ending apartheid by most poor South Africans. "This is the movement that liberated them," says TAC field worker Mandla Majola. "If they stand up against the ANC, they betray."
And yet the ANC led government is falling short of its responsibilities, according to Majola, who says it is time now to ask the liberation movement new questions: "Yes, we can blame apartheid, but what are you doing as the present government?"
Majola says the government first needs to address the inequality that fuels the epidemic. He compares the differences in treatment for a black person living in Khayelitsha to a white person in Camps Bay, a wealthy Cape Town suburb. "These are two different worlds," he says.
The current de facto segregation is a vestige of the de jure segregation under the apartheid system. Majola says that a black person with HIV in Khayelitsha must live in a cold, leaky shack, go outside to get water and use unsanitary community bathrooms, while a white person in Camps Bay lives in a warm, dry house with abundant fresh food and water, sanitary waste disposal and much more. In Khayelitsha, one water tap serves 500 shacks, whereas in Camps Bay a single house may have up to 13.
"These are realities that affect us. They affect our health, our well being," says
But the HIV/AIDS epidemic in South Africa is not just fueled by poverty and inequality—it is also propelled by neglect and denial.
"Many people have died because of denialism," says Majola.
The problem starts with widespread popular ignorance about the epidemic, according to the TAC activist. Public education about HIV/AIDS only came about in the late 1990s after the problem had reached labor-force threatening proportions. At that point, many people had still not heard about AIDS, and those who had often held views at odds with the international scientific consensus. Mixed signals from the government only made things worse. "I came across the word AIDS in 1998," says Majola.
In 1999, when his aunt died, Majola discovered a letter that revealed she had been HIV-positive. The next year Majola learned he, too, was HIV-positive. It was not easy to accept this, but he says he had to: "You can't run away from it. It's like the pigment of your skin. You accept it."
Majola says he dealt with his status by asking himself what he could do to help fight the epidemic rather than getting frustrated and blaming others. Like many TAC volunteers, he dedicated himself to educating others. "In a way it was a blow, but I took it in a positive way. I have HIV," he says.
Majola, Zeldah, and Noncedo, among others receiving ARV treatment through MSF and TAC, say they find the messages from the government counter productive and dangerous.
Adding to the confusion, the California-based Rath Foundation, headed by Dr. Matthias Rath, a German-born physician who promotes intensive vitamin therapy as an alternative to ARVs to treat HIV/AIDS, has begun to play a prominent role in ANC policymaking circles. In Khayelitsha clinics and TAC offices, the mere mention of Dr. Rath's name makes people's hair stand on end. One woman shakes her head in anger; another scoffs with a bitter laugh.
"That man is killing people," says Majola. "That man is confusing people, and it is causing unnecessary death."
Rath claims that ARVs, especially zidovudine (AZT), are toxic. He insists that the key to fighting HIV/AIDS is good nutrition using vitamins he produces and markets. He has also launched a smear campaign against the TAC, say TAC leaders.
Adding to the confusion, President Mbeki and Tshabalala-Msimang have publicly cast doubt on ARV treatment, and neither has denounced Rath's claims despite a consensus in the medical community against his approach. The upshot is that many South Africans find themselves wondering who to believe—their government and Dr. Rath, or the medical community and the TAC.
For her part, Zeldah says that she is alive today because of ARV treatment, and she is not alone in feeling optimistic, despite the odds against her. "We have defeated apartheid," says Majola. "We will defeat AIDS. Rest assured."