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Berold, Ralph (2002) The personal is political – new thinking about HIV and AIDS. CCS online : -.

We are either living or dying each day

Langa* was 26 when he died a few weeks ago. He was a young black guy who was completely open about his homosexuality. Robert Mugabe's worst nightmare. Although he was fearless as a gay activist, he never came to terms with his HIV status. He died quickly once his immune system became depleted. He lost weight and in the end he could not walk. His friends had to visit him at his bedside in a hospice.

The week of Langa's memorial service, I heard about three more young people had that died. One was a tenant in the building where I live. According to my domestic worker she became very sick and her flatmates had to look after her for her last months. She was a white girl. Too often we think of HIV/AIDS as a black or a homosexual disease.

A friend of mine was up from Cape Town recently. He came up to bury his sister. Sorry about that, I said helplessly. Another friend of mine told me about how the opening performance of a new play had to be cancelled when one of the lead actresses collapsed that afternoon. She died shortly afterwards.

As the HIV epidemic advances, as it becomes an AIDS epidemic, many more of us will know personally some of the 4 to 5 million people who will die in the next five to ten years. It could be someone closer than we think. Do we even know our own status?

Not many of us know people who are living with HIV and coping. Here I count myself lucky. In my work at Wits University, with the AIDS Consortium and the Treatment Action Campaign, I have come to meet and to know a number of people who are living full lives openly with HIV. These individuals have a rare courage, first to have gone for an HIV test, then to have come to terms with their HIV status, then to begin to live “positively”, with a healthy approach to life and close attention to their health. Many have managed to survive with HIV and AIDS for years. Some have even come back from death's door.

Why is it that some people manage to live for a long time with HIV and others die so quickly? I have seen two characteristics in those who stay alive. The first is that they do not succumb to the dominant assumptions about HIV and AIDS. That is, they do not believe that HIV equals death. Because they can conceive of a life with HIV, they are able to hold their own lives together, and they have the psychological strength to face the many challenges of the disease. Research has shown that a positive attitude can actually have a good effect on the immune system. Shame, inescapable fear and deep depression all work to deplete the immune system.

The second reason why some people with HIV live and others die is very simple. They do not have access to treatment. Since the mid 1990s anti-HIV medicines (antiretroviral therapy) have developed to the point where, in USA and Europe at least, HIV/AIDS is no longer considered a terminal illness. In these countries HIV is viewed as a chronic but manageable disease, not unlike diabetes. We no longer find AIDS wards in the hospitals of the first world. Instead, people living with HIV are carefully monitored and treated on an outpatient basis. Even here in South Africa, in arguably one of our poorest urban communities, Khayalitsha in Cape Town, a small clinic run by Medicins sans Frontiers (Doctors without Borders), has shown that we can keep poor HIV positive South Africans alive in the same way.

Of course antiretroviral drugs alone are not the whole story of HIV treatment. Access to life saving medicines should include the necessary drugs for AIDS- stage opportunistic infections, such as TB prophylaxis, cotromoxizole and acyclovir. Also necessary are blood tests to measure CD4 cell count and viral load to ascertain the extent of HIV progression. And probably even more important than drugs are good doctors and nurses who are fully understand HIV, are free from prejudice and are skilled in managing HIV positive patients.

The War of Words

There are three main assumptions that underlie most South Africans’ views of HIV and AIDS. What these dominant discourses have in common is that they keep the whole issue of HIV and AIDS in the realm of “the other”. They prevent us from re-conceptualising the disease on a personal level and re-searching the epidemic on a socio-political level. They can be summarised as:

(1) Prevention is the cure
(2) HIV = AIDS = death
(3) HIV is a punishment from God

Statement 1 - "Prevention is the cure"

This unfortunate assumption is the basis both of our national HIV/AIDS policy and the main HIV education programmes. It is all very well focussing on the issue of prevention, but try to tell this to the millions of us are already infected.

A strategy focussing almost exclusively on prevention may have been appropriate for the 1990s when the disease exploded from 1% to 10% of population within a decade. But surely today our attention should focus on more people finding out their status and beginning to access treatment and counselling?

There is a level of denial inherent within the prevention assumption. We deny that we are not yet infected, as individuals, as families and as communities. As long as we keep the barrier up (be it physical-latex or social cultural-racism) we will be fine, thanks very much.

Statement 2 - "HIV = AIDS = death"

You don’t go for an AIDS test. Nor do you die of HIV. We live with a fundamental confusion about what is HIV and what is AIDS. Even the president seemed to have trouble understanding this. It is not difficult. HIV is a virus which attacks a person’s immune system. When your immune system is weakened below a certain point, then you have AIDS. AIDS is characterised by a syndrome of opportunistic infections (OIs) such tuberculosis, pneumonia, as well as skin, fungal or intestinal infections.

These central facts are lost somewhere between the condoms and the debates around abstinence. The media is saturated with particular kinds of messages at the expense of others. As a result we are highly aware, even paranoid, but fundamentally misinformed. As a result of not having correct and useful information, or not knowing where to seek it, people experience a loss of power when it comes to matters relating to HIV and AIDS. A student who finds out that s/he is HIV positive will go into serious shock and without proper counselling will probably drop out of school and literally out of life, as the weight of mortality appears closer than expected. This happens on a daily basis.

Statement 3 - "HIV is a punishment from God"

HIV is a virus. It is not a sin. Due to its inherited associations with promiscuity or deviation we tend to think of HIV as the sign that a sin has been committed. Death and sex are powerful taboos, and because they are mixed up in our understandings of HIV and AIDS, there is a great deal of emotion and preconceived judgement.

Stigma can be self inflicted, in the form of shame. It can be projected, in the form of discrimination against someone perceived to be HIV positive. In South Africa where we are so quick to discriminate on the basis of race, class, gender or language, HIV/AIDS becomes another weapon in the arsenal of our psychological dirty tricks.

Religious institutions have been complicit in these constructions of otherness and blame. They should be the first to change. Jesus and other holy men cured the lepers, the sick, and practised ultimate compassion. Fortunately some religious leaders (such as Archbishop Ndungane) are beginning to preach true moral renewal.

New thinking

We need new metaphors. Let us look at HIV and AIDS as an opportunity both in our own lives and in our social history. We need only to look as far as people living with HIV to be surprised and inspired. A friend of mine living with HIV is getting married in December. Why would anyone in his position get married if he is going to die anyway?

My first HIV test was a real wake up call. In the week I waited for my result I thought about many things differently. HIV forces us to wake up to our own lives, to consider our own relationships, to challenge us to take care of our own health. It challenges us to re-examine our difficulties with talking about sex, or to look at the way we as men and women relate to each other.

HIV/AIDS presents us with new socio economic and development questions. It alerts us to the way in which many people in our society are excluded from basic human needs such as food, security and health care. It makes us ask if our new government doing enough to look after the poorest most marginalised people. Should we let the orphans die, as Parks Mankahlala suggested, so that we do not need to care for them? The crisis is shaking up and reconfiguring our collective values.

The treatment lobby has been very successful in generating a powerful new discourse around HIV and AIDS. Even the poorest people now speak with ease of CD4 cell counts, mother to child transmission prevention (MTCTP), highly active antiretroviral therapy (HAART), generic medicines, and international trade agreements. Education towards treatment literacy is not just a means to understand and empower the HIV positive activist, but begins a new foundation for adult basic education. The fact that we take this discourse to the streets around our new institutions of power (the Constitutional Court, NEDLAC, the Complaints Commission), is a test of the very instruments of our democracy.

Forms of action and power

Besides engaging in new and constructive ways with the meanings of HIV and AIDS, what practical measures can we take to make a difference?

1. Get an HIV test

It is scary to going for a test if you are not sure what the results may be. When counselling, I always congratulate my client on their bravery. There is no way round this. Overcoming fear is the only way to come to terms with HIV on a personal basis. People say - Why should I go for a test if my life will be miserable once I know Im positive. In this case ignorance is not bliss. It is death.

Even if you will not have access to a good medical aid or expensive antiretroviral drugs, it is still worth knowing your status. If you are positive you can come to terms with this while you are still healthy and begin to seek further information or alternative medical assistance. Make sure you get proper pre test counselling to prepare yourself.

2. Speak out about HIV and AIDS, gender, sexuality and mortality

HIV/AIDS raises so many difficult questions within our lives or experience. Instead of bottling these up or being afraid of raising the issue, why not speak to people about these things? It’s up to you to make a difference within your own community. Somebody has to start.

3. Get informed

Given the low level of knowledge about HIV and AIDS, try to educate yourself further about the basic science of the disease and the social issues that have caused and the pandemic, as well as it impacts. The Treatment Action Campaign offer treatment literacy workshops. Also find out what other AIDS organisations and private and public health services exist in your area. Where can you refer people to and what services do they offer? The National HIV/AIDS helpline at 0800 012 322 is an excellent source of information and referrals.

4. Disclose your status

If you are HIV positive, communicating your status with other people is a difficult things to do as long as HIV and AIDS are stigmatised as they are. It is advisable not to disclose your status too quickly, but to only do this with someone you trust. This could be a family member, a friend or professional counsellor. Speaking to someone about your feelings can be very good for you. They may also be able to help you in times when you need help. Many people who have come out openly about their positive HIV status, have been surprised at the support they have received as a result. Being openly HIV positive can in fact be a very good advocacy or educational opportunity. You may act as a role model to other people living with HIV/AIDS (PWAs) to disprove the assumption that if you are HIV positive you are sick.

5. Fight for the right to life

Whether you are HIV positive or negative, you should fight to end the discrimination, stigma and prejudice associated with HIV and AIDS. Fight for the right of all people to health care and life saving medicines. At this stage the divide in the struggle with HIV/AIDS is not whether or not you are infected, but whether or not you are actively support a new commitment to HIV and AIDS. Choose to remain part of the problem or become part of the solution. Every single South African must make this choice!

* Langa is not his real name.

Ralph Berold works as an HIV educator for the University of Witwatersrand. He is a founder of Positive – Wits HIV/AIDS Campaign, and an active member of the Treatment Action Campaign and AIDS Consortium. He can be reached at 011 717 1435 or

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