We Are Beating It

Siyanqoba (Beat It) Presenters

As part of the core team that documented the HIV/AIDS struggle in South Africa, Community Media Trust Post-Production Manager LADDIE BOSCH gives a first-hand account of how the movement was televised.

It all started with Idol Pictures, which was an independent documentary film company started up by Jack Lewis. I joined and then Lucilla Blankenberg joined, and we wanted to make our own documentary stories. The Treatment Action Campaign was founded in December 1998 to campaign for access to AIDS treatment and we were personally involved in that struggle because we came from an activist background – especially Jack and I. We would attend TAC’s meetings and film what they were doing and tell stories with the footage.

We realised that we needed to make a television show that could tell the story of this struggle from the point of view of the people involved – the patients, the people who were initially called ‘victims’ and ‘sufferers’ and ‘survivors’, people who had been affected by HIV/AIDS. Jack had a nice expression; he said our purpose was ‘echo and amplify the voices of people campaigning for better health care’. So that’s where the idea for the television show started, and it evolved into a 26-part TV series, which we fundraised for and produced in its entirety, before offering it to the TV stations.

It was initially turned down by the SABC (South African Broadcasting Corporation), and eTV took it, but we had to pay eTV to broadcast it with money we’d raised from a funder. In those days eTV was interested in making money broadcasting wrestling and soft porn and stuff like that. They weren’t promoting and supporting local filmmakers or telling local stories that would assist the social movements that were going on at the time. Still, the show was on eTV for two seasons.

‘It’s a disease and like other diseases it is caused by a virus; it’s not because of magic or a curse or because of sins that you’ve committed’

Then we went into partnership with the SABC, changed the name from Beat It (inspired by the Michael Jackson song) to Siyayinqoba [‘We are beating it’ in isiZulu and isiXhosa]. The idea was to follow this movement, to publicise what it was doing, but also to assist with treatment literacy – helping people understand what they were dealing with. It’s a disease and like other diseases it is caused by a virus; it’s not because of magic or a curse or because of sins that you’ve committed. It’s better to understand the scientific reasons for it, so you could get a grip on it. If you understand what is happening in your body, you know how to treat it. So in the beginning the two messages were prevention and treatment.

We noticed that the government was very unwilling to treat – to provide medicines and education to treat the disease. They were in complete denial about it. So we publicised the campaign for scientific treatment of a growing epidemic, and that’s what motivated the television show. Each season was carefully planned, so we would deal with issues of gender violence, issues of patriarchy, issues of treatment literacy, the problems of dealing with big pharmaceutical companies, the resistance from the government, the denialism, the problems of stigma, prejudice and so on. And each season had its 26 episodes carefully planned out.

The SABC then was a much better and more progressive institution then than it has become under recent leadership. There were a number of people there at the time who wanted it to be an open public service broadcaster and not a narrow mouthpiece of a few – and they supported and promoted the show. We did have several fights with the SABC to keep the show on the air – even threatening them with legal action. But for the most part, they weren’t trying to obstruct us from telling controversial stories or dealing with controversial topics. We weren’t prevented from showing a clip of Thabo Mbeki in Parliament saying HIV does not cause AIDS. We were allowed to have that on the show.

‘We didn’t want to speak on behalf of people suffering from HIV; we wanted people to speak for themselves. So we had to find people who were willing to that, which was difficult in the early days’

The format has changed in recent years in that we take young people and train them as community journalists. We give them the topics, they go out and find the stories and characters, then we go out as director and cameraperson with the newly trained community journalists to go and document those stories. Several young black graduates have carved out careers in the local television and film industry after learning and working on the series. But in those days, we were a small team – it was just myself, Lucilla, or in some cases Jack and a cameraperson going to Lusikisiki or Durban or wherever. Peter Baker, our very resourceful videographer, also made a major contribution to the success of Siyayinqoba.

We were based in the Western Cape and to some extent had a Western Cape focus because this is where the TAC started and many of their campaigns originated here. There were more active participants, more events happening here. From the Western Cape, it grew to the Eastern Cape, Gauteng and to KwaZulu-Natal (KZN), and as this national campaign grew, we could follow activists and find new developments and new stories, and people who were willing to tell their stories. We didn’t want to speak on behalf of people suffering from HIV; we wanted people to speak for themselves. So we had to find people who were willing to that, which was difficult in the early days.

The very first story I did was about Gugu Dlamini, the woman who announced in December 1998 that she was HIV positive, became an activist and a spokesperson in Durban, and who at the end of December in that year went to a shebeen in KwaMashu and was stoned to death. So, as you can imagine, it was difficult to find people who were willing to tell their stories – to speak about their fears, their own misconceptions and about what they needed in order to live a productive life while carrying this virus inside their body. But we followed the movement to find people who were brave enough to be open and eventually we had a fairly good representation nationally of people who had been infected or affected. We gave quite a bit of attention to KZN – a small province with the highest incidence per capita of HIV in the world – and to dealing with issues related to HIV, like tuberculosis and other opportunistic infections, and so on.

We started out by calling the show ‘Beat It’ because it was always about not accepting the disease as a death sentence, but about how to beat it and make it manageable. Our approach was always very positive, forward looking and optimistic – and we combined that with making scientific knowledge accessible to everybody. That was the philosophy for the show and how we approached it.

‘We were never physically assaulted, shot at or stabbed, but we were definitely threatened and vilified for opposing the official policy on HIV and for criticising Manto Tshabalala-Msimang and Thabo Mbeki’

Because so many people were in denial about the epidemic at the time, we did experience some resistance and flak. We were accused of being in the pockets of the big pharmaceutical companies because we were advocating the use of Western medicine. We were never physically assaulted, shot at or stabbed, but we were definitely threatened and vilified for opposing the official policy on HIV and for criticising Manto Tshabalala-Msimang and Thabo Mbeki. I remember we were filming the funeral of the daughter of an ANC politician in KZN who had died of AIDS but because the mother was a loyal supporter of Thabo Mbeki’s policy at the time she was in complete denial about it. And from the podium, she verbally attacked the journalist, the cameraman and the show for reporting on what was happening.

But at the same time, the show was getting quite popular and we’d go into villages and people would see us wearing the T-shirts and start singing the theme song. So the show had traction; it found an echo. But we had to be careful not to be an uncritical voice just echoing a social movement, so we attempted to get the widest range of opinion discussed and debated in studio on the show. Our guests ranged from the Health Minster, to the Director General, medical practitioners, activists, denialists – everybody got invited to the show and had an opportunity to part of the discussion.

We also showed defiance and resistance on the show. There was a growing mood of anger and opposition and desperation at the grassroots level trying to get our leaders to listen to us. The TAC got to a point where they had to increase the intensity of their campaigns to get a growing audience. And the HIV-positive T-shirt was their first big thing. A small group of activists saying: ‘You know what,’ in Vuyiseka Dubula’s words, ‘We refuse to die!’ We’re going stand our ground and let our voices be heard. We’re going speak our minds and insist that this issue be taken seriously. So they made a T-shirt with the biggest possible lettering declaring “HIV positive” and took it from there. And that was very successful.

It polarised opinion. Some people were scared to wear it. But it became settled in the political landscape – people just refused to be quiet. Friends of the campaign and people who weren’t HIV positive were happily wearing the T-shirts. I remember people phoning or coming to our offices asking: ‘Don’t you have these T-shirts? Where I can get them? Will you allow me to reprint them?’ It became a bit of a fashion thing – activists with guts and style.

And that was coupled with mass mobilisation, getting people out on to the streets to protest, getting people to occupy hospitals and clinics. And we were able to film a lot of that stuff because we knew when it was going to happen. We knew, for example, that there was going to be a march on a hospital in Grahamstown where patients had been neglected and allowed to die – criminally so. We knew that activists were going to march to the hospital and occupy it. And when they were forcibly removed and shot at, we were there to record and document all of that.

‘We used to get batches of letters every week from prisoners asking advice or just commending us for doing the show and making the information accessible to them’

There were medical practitioners in Cape Town and Johannesburg who decided to defy the official policy of denial and start rolling out the treatment. The campaign itself was importing drugs and making them available to people with the help of doctors. It was an example of how things could actually work, how it wasn’t that difficult to deal with the problem. It just took will, commitment and application over a period. So were documenting those stories as well.

In the beginning, there were about a million people who were watching the show. And our re-broadcasts drew an equally substantial viewership. It was very popular among lower income viewers. A lot of the people were young women who were unemployed, people who’d been forced to leave school, people in prison. We used to get batches of letters every week from prisoners asking advice or just commending us for doing the show and making the information accessible to them.

‘Brazil set an example of how to be open, clear, frank and explicit.’

We also stayed in touch with developments in other countries. We got footage from India, Botswana, Uganda, Malawi, Mozambique. We tried to give the show an international flavour, so that people could feel that this was an international phenomenon, not just a curse visited on a community at the bottom end of Africa. And setting an example that South Africa could emulate. And we reported and reflected on those stories. I remember a few people went to Brazil, where they took the route of producing generic drugs locally at a much reduced cost than what the patented medicines were costing them and we sent a cameraman with them just to follow the discussions. And we got very valuable footage that we could incorporate into the show.

Brazil set an example of how to be open, clear, frank and explicit. It was as if both the government and civil society here in South Africa were scared to be blunt and frank and open about the sexually transmitted aspect of the disease. We wanted to pretend that we were pure and moral. I remember someone saying at the time that Thabo Mbeki was in denial because he felt that if he admitted to the existence of HIV, he felt he would be admitting that Africans were rampant sexual beings and that would be an affront to our moral selves. So rather than admitting that it was happening, we were treating everything with euphemism and denial.

We had a few episodes throughout the first seven or so seasons that dealt with shortcomings in the public messaging around HIV/AIDS, and we made the point that the loveLife campaign was distant, it didn’t really reach people. They seemed to be wasting their considerable resources on nebulous, poorly formulated and executed messaging that wasn’t getting across to people. In fact, it probably contributed to people switching off to the messaging altogether and ignoring it – and that went on for several years!

‘It was very inspiring to see young people and older people – even grandmothers – who decided no, we’re not going to sit at home and die; we demand a right to better health care!’  

We were experiencing the depredation of the population because of the disease and denialism. We covered lots of funerals – funerals of friends and family, funerals of babies – and it affected us emotionally to witness people getting wiped out unnecessarily. It was difficult, but we were determined not to become despondent. We were optimistic because we were witnessing a growing movement. It wasn’t a dwindling movement of people who were giving up. It was a growing movement of young people – especially young black women who decided: I cannot live with this uncertainty. In fact, I will not surrender my life to this disease and to political leadership that does not have the will to do what is necessary. That was very encouraging. It was very inspiring to see young people and older people – even grandmothers – who decided no, we’re not going to sit at home and die; we demand a right to better health care!

And then there were real landmark beacons of hope, like the Constitutional Court judgment that said the government has a responsibility to provide Nevirapine to pregnant mothers to prevent mother-to-child transmission. That was a milestone. That was the highest court saying yes, this is the responsibility of the government. And with that that judgment, activists could campaign for treatment and at the same time campaign for education to accompany the treatment, so people aren’t just left in the dark.

We took it upon ourselves to provide the information because nobody else was doing it. We had a constant segment devoted to treatment literacy – simple, basic scientific knowledge that people would find useful. You had to take several pills more than once a day at a specific time without skipping a dose, avoid alcohol, avoid a number of other things. Monitor the side effects and get yourself a treatment buddy to do this with you or remind you and keep you on the road to good health. We decided that that was the contribution we would make: get people on treatment, get them to understand what the treatment would do, and get them to adhere and understand why it’s important to adhere.

And gradually, instead of people just dying, more people were going on treatment, more people were living longer. And there were more stories of surviving the illness and living fruitful lives. Gradually, the arrow started pointing the other way.

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