Battling AIDSin Africa

>> A Montrealer's reflections from the front line of South Africa's epidemic

by NOEMI LOPINTO and PAVLINA SOUSSOUDIS

In June 2000, less than two months after receiving her third university degree from McGill, Pavlina Soussoudis, 29, found herself in the heart of South Africa's "AIDS belt," working for an HIV/AIDS organization in Cape Town.

South African President Thabo Mbeki shocked the world in 1999 when he announced his conviction that HIV does not lead to AIDS, claiming "a virus cannot cause a syndrome. A virus can cause a disease, and AIDS is not a disease; it is a syndrome." Currently, activists have been severely hampered in their efforts to distribute AZT to pregnant women to reduce the nearly 5,000 HIV-positive babies born per month, as nearly every major pharmaceutical company in the world is suing the South African government over a law that permits the government to import or produce cheap, generic versions of patented drugs.

Despite this controversial law, generic drugs are not being produced or distributed. Meanwhile, more than 10 per cent of South Africa's population is HIV-positive, and 1,600 people are infected each day.

The following are excerpts from Soussoudis's monthly reports, diary entries and rants sent via e-mail to Mirror reporter and long-time friend, Noemi Lopinto.

Seeds of change

I am working at Wola Nani, an HIV/AIDS organization. We mainly work with women and their children who are HIV-positive or have AIDS. Although the main office is in Cape Town, the clients live in Khayelitsha, a township. We have an anonymous centre in Khayelitsha where the women go for support, counselling, food parcels. Wola Nani has an income generation program which attempts to support these women by supplying them with seed money to purchase art supplies so they can make and sell jewellery. It is hoped that this money will eventually enable them to build their own tin shack and be able to support themselves.

However, the relationship between the staff and clients is strained right now. Wola Nani purchases the women's art in bulk and sells it, the money going to the women, of course. However, Wola Nani encourages these women to find other clients. At this point, they are not "motivated enough," according to some staff, to find other clients, and as a result rely greatly on the money from Wola Nani as their only income. We did receive a large purchase order from an organization in the U.S. This was really exciting for us; 1,500 Rand ($300) is a lot of money for these women.

Everybody has a different opinion on what is going on. It was very awkward to hear my supervisor say, "They have to stop using apartheid as an excuse." I felt very ambivalent about her comment. She is a white South African, by the way. These women have a lot of fucking problems, not only financially but also low self-esteem, among other things. Does she expect these women to overcome these issues after having lived 400 years of systemic oppression?

Holy cow

One woman I spoke to talked about HIV being a human rights issue. She believes that HIV is about power imbalance, gender oppression, status--men's decisions over women's rights. People in this country still hide behind belief and culture. I don't think South Africa will end this epidemic until we understand the role of tradition and religion--and of a culture in which rape is endemic and has been the primary means of transmitting the disease to young women as well as children.

People are still attached to the idea of traditional healers. A client at Wola Nani came in recently asking if she could borrow money to go to a traditional healer. When she was asked what the money was for, she said that she needed the money to purchase a cow. Although these women live in peri-urban settings (this is a term that is used for people living in the townships), many of them still adhere to traditional African rituals and customs. Many women still visit traditional healers. The community workers working with HIV-positive women have a really hard time with this because, for example, the traditional healer prescribes mixtures that induce vomiting and diarrhea in order to "expel" the HIV virus. The problem is that these women lose vital bodily fluids, and suffer dehydration, which of course puts them more at risk.

It is believed by those following traditional customs that healers are able to communicate with the ancestors through certain rituals, many involving sacrificing a cow. Their messages are expressed through the use of song and dance. It's absolutely essential that just as the blade enters the cow's neck, they must hear the cow moo, for the moo confirms to the people that the ancestors have heard their messages. If the cow doesn't moo, it means their messages have not been heard, and they have to sacrifice another cow. Anyway, the client at Wola Nani said that the ancestors could cure her of HIV. I watched my supervisor struggle with this, and it was decided that the Xhosa-speaking community workers would look at some of the issues during the support group.

Cut and dry

I need to find out more about sexuality in this country. I hear horrifying stories from people, the newest phenomenon is "dry sex." Men force women to have dry sex with them because it is much more pleasurable for the men. As a result, women insert herbs, old pieces of cloth etc. in their vaginas, which they wear all day long in order to keep dry. If they are found to be wet, their boyfriends or husbands think they are "loose," "sluts," that they have been fooling around, and will therefore get beaten or raped again. Poorer women from the townships insert newspapers; this often causes vaginal infections. Of course, this whole process makes them more susceptible to contracting STDs and HIV because dry sex causes vaginal cuts.

Coloured perspective

Spoke to Tracy, a South African woman. This is really fascinating because there are many truths in the new South Africa. She discussed the feelings of coloured people--she is coloured. You may be wondering why I always have to state the race of a person. You know, when I first got here, that really freaked me out. People talking in categories of "white," "coloured" and "black" but everybody contextualizes everything with race. People here make that distinction all the time. In order to understand their perspective and, on a larger level, the complexities of the struggle, I guess one must distinguish race.

Anyway, this coloured woman said that unlike the blacks and whites--who she claims have a strong identity--the coloured are trying to find their place. They have never had a solidified, defined identity. They are stuck between two stools. They were taught that they are higher than the blacks, but lower than the whites. They are proud to not be sitting at the bottom of the ladder, but feel inadequate to the whites.

To complicate things further, here is another story: when I was mountain climbing with my colleagues, John, who is a white South African, said that the non-white population (both blacks and coloureds, but predominantly coloureds) are finally, slowly reclaiming the Afrikaans language. However, when I spoke to Tracy, she said that there was enormous shame in that. Afrikaans is the language of their oppressors, the language that enslaved the coloureds and for sure the blacks for hundreds of years. Furthermore, the coloureds have always felt that they could never speak it as well as the whites.

The townships

When I first had the group sessions with women, I observed that they would laugh while they were telling me their stories, even parts that we would find completely disturbing. Whoa man, that fucked me up. And then later on, I began to appreciate the humour. Humour is a very important part of life here. And I guess for these women, what is there left to do other than carry on with laughter?

I accompanied a community worker from Wola Nani, who is also HIV-positive, to see her clients. This was very depressing. I wonder how she feels. She is constantly reminded of what is to come, seeing her clients so sick. The townships are intense. I cannot describe them. All I can say is that it is really overwhelming when I am there. There is a difference between formal and informal settlements. Informal means there are no toilets, no running water, formal include toilets and water.

When I walked into one shack, the father immediately got up to find something for me to sit on, he tried to look for a functional chair, then settled for a piece of wood, which he covered with a towel. My first impulse was to tell him not to bother with the towel, but then I thought he may interpret that as rude. I removed the towel and gave it back to him; he just looked at me. And I sat down. His daughter is very sick right now.

Condomize

There was a conference in Durban, which specifically focused on the media's role in the HIV/AIDS epidemic. There was a lot of talk about the limitations of the media's approach. Their focus is that everybody "condomize." However, they fall short when it comes to explaining how women might begin to negotiate those terms with their husbands or boyfriends. There is a lot of danger around that prospect, because many women are beaten as a result of exercising their rights--those who attempt to, anyway.

So there is a gap in the media's message. How do we help those women to negotiate? These are the real issues. For many women, particularly living in peri-urban environments, women's rights are simply unheard of. Women still ask permission to do anything. They are accountable to men for their movements. Women live for relationships, even though it harms them. One woman I spoke to wonders whether a time will come when women can feel empowered and autonomous in the context of marriage. Women run the risk of being chased away or beaten when they disclose their status. They are socialized to think that they are cursed, that they are to blame for this AIDS thing. It does not occur to women that they can contract HIV from men. People, particularly women who have no status in society (unemployed, unskilled, illiterate) suffer huge economic losses when they disclose that they're HIV-positive. A woman from KwaZulu-Natal who disclosed her status to her

community got stoned to death. A woman who works as a counsellor and interpreter for clients with HIV/AIDS says that it is more difficult to work with clients who accept their "life sentences," that they see their situation as a "closed chapter." She says it is easier to work with those who are mad, emotional, and even suicidal. Because one can work to change that. But when acceptance of their "fate" sets in, there is very little room for change.

A young teacher and wife was shot through her head in Soweto, Johannesberg. On her body was a note with words: "HIV-Positive AIDS." Next to her was her mother, also dead. Her father was in critical condition in hospital. In the next room was her husband, also dead. According to the police, the husband, also a teacher, killed his wife, her mother and himself. Reports indicated that the couple had both tested positive for HIV recently.

Everywhere we go, we hear: "HIV/AIDS is a death sentence," or worse, "There is no cure--education and prevention is the only protection." From these depressing and somewhat primitive HIV/AIDS messages, millions of people learn fear, helplessness, loneliness and anger. Messages like these also add to the burdens of inequality and violence faced by women. Men often blame women for the transmission of this virus. Even worse still, women believe it.

Drug wars

So far, the government has failed dismally to respond to this epidemic. According to some people, South Africa's new leaders have been heady with the political triumph of the defeat of apartheid and nobody wished to spoil the victory with news of a deadly virus wreaking havoc on this country's future.

People in this country are very angry with the ANC government. One of the pharmaceutical companies closed down one of its own manufacturers in South Africa. People asked the government to buy the facility and produce the medication here, which would be significantly cheaper than buying from the States, but the government doesn't want to do that. There are generic brands that are just as effective being produced. The people have asked the government to purchase these brands. Again, the government hasn't responded. As it is, one nevirapine pill costs 28 Rand ($7), whereas the generic drug costs under two Rand each (50 cents). Some workers are considering going to Singapore to import the stuff illegally.

We had a meeting recently about the number of clients we have. It was suggested that we stop taking more people in because we simply don't have the manpower, and yet, what do you do when women with their children show up asking for support? People are often surprised that we only have 255 clients, which includes the children. I guess when you look at the numbers, 255 doesn't seem like much. But, that's 255 people who are getting support. I think it is our responsiblity to do the best we can. Anyway, it was decided that Wola Nani would not take in anymore clients until some of them die. God, how depressing.

People talk about the state of violence that this country is in. One of my colleagues at Wola Nani said that this is a result of apartheid. I guess the glaring fact of racism and poverty cuts across people's ability to be human. And now, a life that is taken isn't much of a loss.