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ACTIVAID Workshop 2001

ACTIVAID, a student-driven HIV/AIDS activist organisation based at the University of KwaZulu-Natal's Durban campus, co-hosted a UND Students' Community AIDS Project Workshop over a weekend in October 2001. Other partners in the project were the Roots 'n Shoots organisation, the Black Lawyers Association, and HIVAN (the Centre for HIV/AIDS Networking).

One of the guest speakers was Mazwi Mngadi, a member of the National Association for People with AIDS, who spoke to the group on "Positive Living". Mazwi was born and raised in Umlazi, near Durban. He described his organisation, NAPWA, as one serving all those who are HIV-positive as well as those attached to them, offering, amongst other services, workshops for job skills training.

Mazwi Mngadi of NAPWA spoke on "Positive Living"

Mazwi's primary message to the gathering was that it was important to accept oneself so that one can live life freely. He continued with his schooling once he had been diagnosed, because he realised that there was no point in fighting against the truth when he was already waging a war against an early death. He kept saying to himself: "I'm going to live until God decides He needs me."

His mother fell ill with shock and fear when he disclosed his status to her, but once he explained that he was symptom-free and told her more about AIDS as a disease syndrome, she started to adopt a more positive approach to his condition. However, his father and other family members banished him from their home, saying that Mazwi must have been promiscuous. Mazwi himself knows that this is not true; he believes that he contracted the virus through a cut administered by a Zulu traditional healer with a used, infected razor-blade while applying a herbal remedy (this practice being known as ukuzawula. No longer having a home in town, he had to leave school to join his mother who lived on a farm. His sister persuaded their father to relent, and six months later, Mazwi was invited back home to Umlazi. However, Mazwi set the condition for his return as being that his father had to accept the reality that not only promiscuous people contract HIV. His father is a pastor, so it was difficult for him to think beyond his fears of his son not living an upright life.

Mazwi warned his audience against the use of alcohol; for the infected, it lowers the immune system, and for the uninfected, it impairs one's judgement. He has new friends now, and all his material needs are fulfilled; he is determined to live life as productively as possible. Now and again, he gets a headache, but otherwise, he's very healthy.

"If you have sex with someone," he said to the group, "use a condom. Don't see it as a plastic cover. You can contract the virus through kissing, but only if you have open sores in your mouth. Let's keep ourselves safe - be faithful to one partner, or else abstain. This is a virus that kills - I know it will take me eventually, if there's no treatment developed to combat it. It's not easy being positive - there's so much fear and discrimination, but only God is my judge. I've heard pastors rejecting sufferers in church; I've asked the churchgoers how many of them have been tested, and not one said that they had, but later, about fifteen or twenty of them phoned me to say that they were HIV-positive! So let's not judge anyone - we all have a right to be treated with love and support."

One member of the group asked Mazwi whether, with opportunities for higher education being limited in South Africa, HIV-positive youth should be be allowed to study. He replied: "You can't separate people - we all have a right to further studies. HIV-positive people live longer and more meaningful lives than some HIV-negative people. We must never classify people and discriminate against them. " Mandisa Mbali, Chairperson of ACTIVAID, agreed, saying that the triple-antiretroviral therapy regime available in developed countries is proving effective is lengthening productive life, so we should all be fighting for access to that treatment for our communities, as it would have such a positive effect on society and the economy. "It's not only HIV that kills off potential students," she remarked.

Another audience member asked Mazwi what treatment he was using. He replied that he wasn't taking anything for it other than an immune-boosting tonic and was following a healthy diet of fruit and vegetables. "I'd use whatever became available, though," he noted, " but for now I'm managing with only these interventions." He urged the group to help others who are HIV-positive to eat properly, especially if they could not afford to do so easily.

Lucky Mazibuko, who writes on living positively with HIV for The Sowetan newspaper, had said that he would not take antiretroviral drugs because they're too strong, could be toxic and that if one can't follow a healthy diet to support the immune system, the drugs could overpower one's body. Mazwi's said that he couldn't comment on the "AZT triple-cocktail", since it was unaffordable for someone like him, but he noted that all drugs have some side-effects, and it probably wasn't reasonable to target only AZT for toxicity. An analogy would be chemotherapy, which is also very expensive and highly toxic to the body, and one suffers awful side-effects while having the treatment, but millions of cancer patients follow this route in the hope that they can stave off death, and many do. He said that researchers are continuing with studies on the toxicity and efficacy of antiretroviral therapy, but nutrition is well known as being very important in sustaining life. Mazwi explained that doctors check on one's CT4 levels (to check viral load), and so one can track how one's condition is progressing.

The group noted that there are many political debates surrounding the question of treatment, both as policy and as a human rights issue. The Treatment Action Campaign's Zackie Achmat and Lucky Mazibuko are both at the stage where they need antiretroviral treatment, but they will not accept offers of the drugs while the vast majority of the infected population in South Africa does not have access to the therapy.

The UND Students' Community AIDS Project Workshop in session.

The audience asked Mazwi whether he was angry with the person or means through which he contracted the virus. "Whether it was through a girlfriend or the blades, will anger and blame change anything?" he replied. "It would be more important, for me, to inform that partner, help them to get diagnosed and follow a safe and healthy lifestyle." When asked whether he had informed his partner about his status, he replied: "Yes, but she didn't believe she could be positive too. Before my diagnosis, we had not been using condoms because I knew I had been faithful to her, and she was too." He felt that some planning needed to be done before disclosing one's status to a partner; he gave his girlfriend a lot of information about the virus first, and then told her about his diagnosis. "However," he warned, "it is certain that she will get the virus if we don't condomise now. Even if one knows one is infected, one must still use a condom - because one can get re-infected and so increase one's viral load. Women are more at risk of infection and anal sex is also very risky. STDs (sexually transmitted diseases) are also high-risk factors."

Mazwi's closing message to the group was to inform them that one in three women and 50% of the youth in South Africa were HIV-positive. "Young women are the most vulnerable, so the youth must mobilise around this epidemic. It's not just a media thing, a poster or a message on TV - it's in our lives. Those who are positive and those who are negative should be working together on this. All those going to a club or shebeen and drinking heavily tonight - tomorrow morning, if you find a strange girl or guy with you - you will have underestimated the danger of your current lifestyle."

Suzanne Leclerc-Madlala maps out the "African AIDS belt" for the Culture Focus Group.

Another guest speaker at the workshop was Suzanne Leclerc-Madlala, Associate Professor in Social Anthropology at UND and HIVAN's Deputy Director of Campus HIV/AIDS Support and Outreach. In introducing herself and her role in HIVAN to the group, she explained that HIVAN, (the Centre for HIV/AIDS Networking) was co-ordinating a response to HIV/AIDS on the campus, through, amongst other things, its Campus HIV/AIDS Support Units.

She then addressed a focus group on the socio-cultural aspects of HIV/AIDS, questioning why, 20 years into the epidemic, previous educational programmes had failed in Africa, and more particularly, why our own province of KwaZulu-Natal was so badly affected.

In providing background to the high HIV prevalence in KZN, Suzanne cited the following macro-level factors as being crucial to the spread of the virus:

• Durban is the largest harbour in the region, with goods being transported from it throughout the province, country and continent, via container trucks. The truck-drivers frequently use commercial sex-workers along the routes and then have further casual sex with other partners and their wives.
  

• South Africa has long been dependent on migrant labour for its hugely lucrative mining industry; the miners also use commercial sex-workers and take the virus back to their girlfriends in the townships and their wives in the rural areas.
  

• Ongoing civil strife and violence arising from political and faction fighting has resulted in the constant mobility of groups of people from one area to another and in the disruption of family life - these two factors, i.e the movement of people and the breakdown of the family structures, have played key roles in the spread of the virus.
  

• Poverty plays a vital role in the susceptibility of populations to infection, with poor nutrition undermining immune systems and little or no infrastructure for shelter and hygiene compromising the health of communities for generations; KZN has long been the most under-resourced province in the country.
  

• The low status of women, through social traditions, has resulted in women being unable to protect themselves against the sexual advances of men on whom they depend for money.
  

• Sexually transmitted diseases (STDs) - KZN has had an epidemic of these since the 1940s, many of which are left untreated. Men are actually proud of their STDs, because they say these demonstrate that they are popular with women. The STD epidemic must be countered in order to combat HIV, because the virus moves easily into the corrupted female vaginal tissue.
  

• Lack of circumcision in Zulu men is seen as a factor in the spread of HIV. Apparently, Shaka Zulu halted the practice of circumcision because he did not want his soldiers enacting the ritual away from the kraal. Medical studies suggest that the male tissue in uncut men is thinner, allowing for easier transmission of the virus, (although this is viewed as controversial and circumcision is not generally regarded as an easy solution within a public health strategy).

As for micro-level factors, these largely fall into the category of social beliefs, such as:

• Having multiple sexual partners is acceptable, it is the norm; the man wants to be known as amasoka, sexually popular (whether he's married or unmarried, older or younger) - this is the modern form of polygamy. However, today, in the context of the HIV/AIDS epidemic, this belief is a lethal one, as it propels the advancing spread of infection.
  

• Sex is equated with love = you must have sex to show and prove love.
  

• This leads to coercive and/or enforced sex (which starts with cajoling, becoming more cunning and pleading, through to outright rape). Sex has become a normal expectation amongst youth - young women know only this "rough" type of sex, so they equate violent sex with "caring". It does not occur to them that it's not acceptable or appropriate in loving human relationships - which is why South Africa has the highest rape statistics in the world, and HIV and rape are bedfellows / co-epidemics.
  

• In contemporary KZN society, condoms are imbued with many meanings about trust and lack of trust. Men believe they can tell if a woman is clean or dirty, trustworthy or untrustworthy. Also, the mechanics of condom use are not understood at all - it's believed that the trapped semen can travel up to the throat and choke the man to death.
  

• Girls who express themselves about sex are seen as "controlling" and very unattractive because of it. The men feel that talking about sex and dictating its progress is their prerogative, and a "good woman" does not propose condom use.
  

• Ideas about men - the general view is that men need to have sex regularly because they will go insane if they don't. (One wonders what the future of marriage is in the face of these belief structures.)
  

• Traditional healers have a huge role to play in the epidemic, both positive and negative: many of them are misunderstood when they claim to be able to cure HIV/AIDS - but the Zulu word for "treatment" is the same as that for "cure" = ukhelapa = the majority of healers are really trying to say that they can treat or relieve the symptoms of AIDS, but cannot eradicate the virus itself. This confusion is undermining the safe sex / educational and behaviour change programmes being implemented. Some treatments offered by the healers are made to be very expensive, others are cheap and effective - they need their own organisational structures and regulation to be improved.
  

• The "virgin cure" myth - girls are dying of AIDS at the age of 14 at King Edward Hospital - they must have contracted the virus at age five!!

Suzanne traced the cycle of infection in the following way:

Given that the majority of King Edward's recorded deaths from AIDS falls within females aged 25 to 35, one can extrapolate that these women, whether they are sex-workers, promiscuous or were simply coerced into having unprotected sex, are contracting the virus from their HIV-positive male peers and/or older men. The older men are also infecting older women, who are producing HIV-positive babies (future orphans), as are the younger women.

We already have 75 000 orphans of AIDS in KZN - and can expect to have about 250 000 within the next five years. How do we break this cycle? Members of the focus group suggested the following additional points of importance:

• The increased wealth of men and the decreased poverty of women can be viewed as key factors in the spread of HIV.
  

• Young men are increasingly frustrated and violent, because foreigners with no family ties and dispensable income were "taking local women and jobs away from them".
  

• Older men apparently prefer younger girls, and the girls see the older men as wealthy and offering more tenderness than their younger counterparts.
  

• Young men, even family members, are seen raping young girls "out of anger".

Creating posters for behaviour change.

The social circumstances of young women are important. They will do anything to have money and especially to acquire "nice things". The theme of poverty feeds into and cuts across all of these issues - but what options do young people have? Should government offer free education to help the youth get a decent future? How will this help if there is no understanding that their behaviour needs to change? They would never complete their studies or filter into the economy as graduates, which would cost the State a fortune. Suzanne said these are sizable and important questions, but what can we do in our own small circles and environments to make a change? How can we spread the message?

The large group then split into smaller teams to create poster designs illustrating awareness of the various issues discussed, such as "love equals sex", "condoms and trust", "girls who talk about sex", etc and proposing ideas for behaviour change. Our team proposed more balance in family structures and society, with transformation in the ways that people communicate with each other and a revival of the values of positive ubuntu, respect, self-worth and less materialistic goals in life; in this way, the older generation can once again guide and mentor the youth instead of preying upon them, owning them or disregardng them, and the younger generation can look to their elders to teach them, support them in healthy ways and believe in them:-

Older men and older women = united
Younger men and younger women = united
AIDS-free generation

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