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Siyayinqoba Beat It! 2005 Episode 3 –

Middle Class Denialism

Ronald Louw had been exemplary in almost all aspects of his life, except the fact that he did not get tested for HIV. In this episode of Siyayinqoba the team goes to Durban where Louw’s memorial service took place. In studio Treatment Action Campaign chair Zackie Achmat, Louw’s close friend and comrade explained the importance of early testing and how many lives can be saved if everyone could do away denialism and get tested.

Jason Wessenaar: Kgotsong reya le amohela mona ho Siyayinqoba Beat It! Support group {Sesotho} [Hello and welcome to Siyayinqoba Beat It! support group.] My name is Jason. In the Siyayinqoba support group, we are all living positively with HIV. Each week we get together to talk about issues that affect our lives with HIV; from sex and the positive person to dental health. Siyayinqoba is your guide to better living with HIV and AIDS. Uma uphila negciwane le-HIV {isiZulu} [If you are living with HIV] or you have a friend, a partner or a family member who is HIV positive, this programme is for you. This week we’re talking about openness from a different angle. We are very sad to share with you that a close friend of Beat It! Professor Ronald Louw of the Law Department at the University of Natal died of AIDS related TB. To discuss this issue with us is Zackie Achmat, a friend and colleague of Ronald’s. Zackie needs no introduction, welcome Zackie. The Siyayinqoba team attended Ronald’s memorial service in Durban. Let’s hear what his friends had to say about him and the impact of denialism in his life.

The untimely death of Ronald Louw

Durban, KwaZulu Natal

Thamie Mthembu (Durban Lesbian & Gay Community & Health Centre): We’re here for the memorial service of Professor Ronald Louw, who’s an activist and a pacifist but what really brings us to this memorial today is to really drive the message home for people to get tested early, so that things like this are avoided in the future. We’re here to celebrate his life and the many contributions he’s done in advocating for the rights of discriminated people such as gay people, HIV positive people. Ronald had a heart of a socialist, we’ve come here to celebrate that kind of man and to show that we recognise and we appreciate the work that he’s done. We’re also here to say to people and say: “Look, such a great man has died and he didn’t have to.”

Nhlanhla Mkhize (Durban Lesbian & Gay Community & Health Centre): Viva treatment for all, viva. Good people, today we celebrate a life, we salute a comrade. We salute a friend, a teacher, a lawyer, he’s got endless names or titles that add towards his name. But the one I would like to share with you this afternoon is that of a father, which is what Ronald was to us at the Durban Gay & Lesbian Community & Health Centre.

Zackie Achmat (Treatment Action Campaign): I never knew Ronald had HIV, he never knew he had HIV.

Vasu Reddy (Friend and Comrade of Ronald Louw): I had no idea that Ronald was HIV positive. If I think back, in terms of our friendship and Ronald’s health over the last two to three years, what was very evident about Ronald’s health was that he was increasingly becoming ill. He started complaining of lack of energy, he’d also complained of night sweats. I asked him: “Did you for example have an HIV test?” and Ronald looked at me in his stern, abrasive way and said: “I had completed all the tests, the doctors have done all the tests and that’s it.” There was no incline idea or suspicion that he could have been HIV positive at that stage. I believe that the virus, in all likelihood was in his system for a long time.

Zackie Achmat (Friend and Comrade of Ronald Louw): When I saw him in 2004, I said: “Ronald, you’re losing weight, you’re getting coughs, you’re sick at night, you have to get tested.” I said it to him three times and he just looked at me and said: “Hayi khona.” And I say to myself: “What is it that made this thinking man, this brother, this friend, this comrade, what is it that stopped him from getting tested?”

Vasu Reddy: I think there are many reasons, I think Ronald’s life and ultimate death and inability to confront the virus, that in as much as one man may be out there as Ronald was, as a public figure promoting issues around prevention, treatment literacy et cetra, that it was fine to sow it in the lives of other people but an inability to confront the realities in ones own life.

Zackie Achmat: Ronald took care of all of us but he didn’t take the time to take care of himself. And the message that every one of us has to take out is that you have to take care of yourself. MC, Vasu, Trish, Libby, Phillip, Nathan, Sibongile, all Ronald’s comrades, friends, colleagues, you have to get tested, you have to get treated.

Vasu Reddy: I think the first point for me about Ronald’s life post HIV, is his acknowledgement that I’m now HIV positive and I think at some level, as late as it was, we transcend the denialism. And what he said to me, I remember this vividly when he lay on his bed in Westville at the Westville Hospital, he said: “Vasu, when I get out of here, I want to make some serious changes to my life and what I would really like us to do is to start a campaign for early testing”, which I think yet again, is Ronald’s acknowledgement of his own denialism and over and above that, moving beyond that denialism to make a difference to the lives of other people. And I think a campaign for early testing is an important lesson we learned from Ronald’s life.

Support Group

Jason Wessenaar: Zackie, why is it that somebody like Ronald who was educated, who was an activist especially around issues of HIV/AIDS and human rights, somebody who had the money and possibly the access and also the knowledge about HIV, didn’t go and test on time and didn’t get treatment on time to perhaps save his life?

Zackie Achmat: It’s a very difficult one, I can’t really explain it; I mean it’s impossible to explain. But to give you an idea, at the beginning of this year suddenly his mom became ill with cancer and on the day that his mom died, he was diagnosed with AIDS. If you look at what’s happening in our country, we all know from the deaths in Mandela’s family, deaths in the Buthelezi family and so on that there are middle class people who are dying and there are many people who are dying but we’re leaving it to our parents to disclose. They have to deal with their own personal and private grief, many middle class people I know who have HIV have friends who are teachers, friends who have helped them to get on to medication, but have not come out. And those friends of mine, if I hadn’t spoken to them, they wouldn’t have been on medication because they’re scared to go and get tested and so on. So there’s enormous stigma, they either deny it completely and they die like the late Parks Mankahlana, they die like the late Peter Mokaba, in denial or they die in a situation where it’s open and too late. It’s also the fact that people like myself, who are middle class, can buy our privacy. So if I wanted to, I could go quietly to a doctor, I could get my medicines, I could take them in a corner, I wouldn’t need to deal with anyone.

Busisiwe Maqungo: It’s so sad that he was so supportive to people living with HIV and he never gave his friends a chance to support him. Yinto ayishiye ne-friends zakhe into yoba {isiXhosa} [It is something that he left with his friends that] had we been there for him, maybe he would have tested early. If we were there to support him maybe he wouldn’t have died.

Jason Wessenaar: After this short break, we talk more about AIDS denialism. Stay tuned.

Jason Wessenaar: Mmuhi re ya ho amohela hape mona mo Siyayinqoba Beat It! Support Group. {Sesotho} [Welcome back to the Siyayinqoba support group] – the programme for everyone infected and affected by HIV. Ronald was a friend of Siyayinqoba and over the years we have interviewed him on different topics. We compiled this insert from our archives which gives us an idea why he meant so much to so many people. Let’s go back in time.

In memory of Ronald Louw

Durban, KwaZulu Natal

News reader: Despite massive HIV/AIDS awareness campaigns about breaking the silence, many people still choose to keep their HIV/AIDS status a secret. Gugu Dlamini was murdered after revealing her HIV/AIDS status.

Ronald Louw (in 1999): I represent the National Coalition for Gay & Lesbian Equality on the Gugu Dlamini Action Alliance to ensure the prosecution of the murderers of Gugu Dlamini. The HIV/AIDS issue needs to become a human rights issue. We need to see it as much more than an education issue, much more than a safe sex issue, it’s a political issue, it’s a campaigning issue, it’s an issue affecting everybody in their daily lives. The more the disease is kept in the closet, so to speak, or hidden from the public view, or hidden from families, or hidden from communities, the more difficult it is to control it. I don’t think people realise that they are working with people who may be infected with the HI virus or may have AIDS. They may not realise that people in their own families have HIV/AIDS.

Ronald Louw: Queers, comrades, fellow Africans and fellow citizens of the globe, we come to the most exciting part of the proceedings…

Ronald Louw (in 2004): I think my political awareness really developed in the later part of university and shortly after I became involved in the youth movement. Of course, that was the time the Mass Democratic Movement and a lot of activism at the time. I was quite religious and I was involved in particularly politically orientated church, the Rondebosch Congregation Church, who also were giving a lot of support to … and objectors and that was the issue I was dealing with at the time as well. And I think I sort of cut my teeth both on the Cape Flats and in the Rondebosch Church, which were sort of quite disparate parts of the struggle but I think taught me different perspectives as well.

Ronald Louw: I’ve known Sibusiso for a number of years, in fact, but it was fairly recent from about May 2000 that I got to know Sibusiso again. He fell suddenly ill; he was admitted at King Edward. I came to visit him on the second day that he was here. My first impression was, having been utterly appalled at the conditions in the hospital. I was stuck immediately by the filth of the wards. You know I’ve been to visit people in the prisons and I think the condition in prisons is better than the conditions here. When he was first admitted, he came in having already being diagnosed with meningitis, it was very clear that he had to go on Acyclovir immediately. When he arrived in the hospital the sister in the ward said there was no Acyclovir in that ward, they will try and find it in other wards. And I phoned a few hours later and I spoke to the nurse on duty in the evenings, she said she didn’t know anything about this and no Acyclovir had been found and in the evening their dispensary was closed and it would only be opening at ten o’clock the next day. I decided to phone the hospital and ask for the Superintendent and I said a complaint about conditions. They said: “Well please speak to the PRO”, I said: “Put me through to the PRO”. They put me through and I got through to his office, he was in a meeting. I said could I speak to his deputy and she was in a meeting but I could speak to the deputy’s assistant. I eventually spoke to the deputy’s assistant, I forget her name now and she asked me to put the complaint in writing, so I said no this is a matter of more urgency than writing. There is somebody who is on a drip for meningitis having to climb steps to fetch his own food. I can only assume that Sibusiso’s removal to another ward was a result of the complaints. That didn’t deal with the substance of the campaign because other patients were put in his place.

Sibusiso died in November 2000. Ronald Louw died in June 2005.

Support group

Jason Wessenaar: Welcome back to Siyayinqoba Beat It! Support Group, we are talking about why middle class people, who have access to information and healthcare, remain in denial about HIV/AIDS.

Lihle Dlamini: How long after his diagnosis did it take him to disclose his status?

Zackie Achmat: Immediately, what happens to him is that the doctors think that he has PCP pneumonia, white man, gay and they give him cotrimoxasole and it doesn’t help. And a few weeks later, he’s still sick. They start him on antiretrovirals, the cough won’t go away, he has to be on the thing to breathe all the time. His doctor phones family and says: “Look we think he’s going to die, so you better just come up.” They went up and they speak to the doctor on duty and they say: “Listen have you tested this guy for TB?” “Yes, but the TB results are negative”; but it’s negative with most people with HIV. So they say to them: “Have you given him TB treatment?” “Oh do we have to?” Private hospital: “Do we have to?” This is three weeks after he had been sick, I’m sure he had TB a few months before and they start him on TB treatment. But he doesn’t get better immediately and they check the lungs and they go in and do a biopsy and they find out that it’s TB. Two days later, he’s dead.

Lihle Dlamini: Do you think had he tested early, that would have helped in his early diagnosis of TB because he would have recognised the symptoms, the sweating and the loss of weight.

Zackie Achmat: I want to say two things about TB and early testing. First, the biggest problem that we face in the country with ARV rollout and so on is that most people are getting to the clinics too late and they’re still put on waiting lists but people are getting there too late. It’s very important to get tested early, not simply because you need ARV treatment but you can get cotrimoxasole you can get TB Prophylaxis. So even if there wasn’t ARV treatment, it’s important to test early because there are many things you could do to stay alive along time. So that’s the one thing, but the biggest problem that we have in South Africa and in Africa is that most people die of TB. And TB, we all know it’s something that can be cured but the tests that people use for TB now are 106 years old. If you take the HIV test that we have, it’s in 1987 they started it and it was a difficult test, you had to go to the hospital, you had to go back and forth. Now what do you have? You have a test that in 15 minutes, you can get a reliable result without a laboratory. Why don’t we have that for TB?

Vuyani Jacobs: It was a problem with pharmaceutical industries to actually invest in that because they had to treat a lot of people, they had to treat a lot of poor people, so they did not make a lot of money out of it, so they just left it, there’s nothing to make money out of it.

Jason Wessenaar: Ha re kgutla mabenkeleng {Sesotho} [After the break we wrap the discussion] Stay with us.

Jason Wessenaar: Welcome back to Siyayinqoba Beat It! Support Group, we’re talking about why middle class people who have access to information and healthcare, remain in denial about HIV/AIDS.

Primrose Mathabatha: I want to share a personal story with everybody. Coming from a very powerful family and I’m born from a middle class type of family. And you sit in the corner and you try to be defensive and protect yourself against stigma and discrimination. I remember a point when I was on ARVs and I had to lie that it’s actually a diabetic treatment because I was afraid of rejection, I was afraid of being cast away from the family, I was afraid of being alone and die alone without a family until I said to myself: “Primrose if you really want this to work, it’s about you and accept it, you’re HIV positive.” I’m grateful, I opened up and I wish everybody here and the viewers at home and whoever is watching this, let’s all confront our fears, come out. It’s about you. Even if you think that you’ll be rejected by family and friends, there will be another person that will love you.

Vuyani Jacobs: A long time ago we used to go around schools and do workshops on HIV and talk about HIV everywhere. And I stopped going to middle class schools, I stopped going to other schools, I said: “It’s a waste of my time.” I’m going to go to the people I actually come from and I have a history with because they turn to you and say: “Oh my God he really has HIV”, as if they don’t. Middle class people have a problem amongst themselves, as long as leadership within themselves doesn’t come out, the rich managers of banks, the CEOs of companies don’t come up and say they have HIV. The sport players, the cricket players don’t come up and say they have HIV, those support groups will never happen.

Busisiwe Maqungo: I just joined a very big manufacturing company, predominantly white and Afrikaans. When I go there to do trainings, they only give me the general workers, it’s always black and very poor and I’m like, “How are these people around here?” It’s as if this work is only meant for general workers, the ordinary workers, people from the factories, people on the ground. You find that very few companies give me people from management. We are going to give you people but don’t take too long and bring them back. What about you guys?

Jason Wessenaar: They may be doing that … not really. I think there’s a number of issues. The one issue is we need to have a lot of people that are middle class that are managers that are doctors who are open about their status, who’d be able to provide that education of that information at those people’s level.

Zackie Achmat: The burden of HIV openness is put on poor women, middle class people have to come out and disclose because we need additional role models to show that this disease is not simply a disease for poor black women or poor black men, that it’s a disease of all races and of all classes, and that’s very important to all of us. But most importantly we need middle class people to disclose to their colleagues or to their friends so that they don’t feel that burden of internal and self stigma.

Jason Wessenaar: Thank you Zackie, it’s been a pleasure having you and thanks to the support group and of course you viewers at home. Today we’ve learned that HIV affects everyone regardless of race, colour or gender, we are all vulnerable. Middle class people seem to have more to lose and an even greater difficulty of coming to terms with their status. Most of the openness work is so essential to fighting HIV/AIDS is being done by the working class people. My thought for you today is, don’t die of fear and denial, there is so much that can be done, get tested and get treated when needed. You can enjoy many good years of health. We hope that you’ve enjoyed the show and are feeling the Siyayinqoba Spirit, that together we can beat it. Join us again next week in the Siyayinqoba Beat It! Support Group. Till then stay healthy and remember we can beat HIV.

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