In DepthColumnsPhotos, movements and HIV in Western Cape

Fri,24Nov2017

Posted on Thursday, 08 August 2013 15:08

Photos, movements and HIV in Western Cape

Shauna Mottiar

Shauna is temporarily distracted by an eager photographer as she hits the road to learn more about the openness of HIV/AIDS activists in Western Cape, their willingness to share and most of all, the non-judgmental atmosphere they had created around them - an attitude borne out of the inequalities of South Africa's post-apartheid healthcare system.

 

"Hi I'm Shauna." I said, holding out my hand.
"Hello Shauna – nice to meet you." Answered the photographer.

I was attending a conference where I was to present a paper on HIV/AIDS in South Africa.

The conference delegates were all most distinguished in their fields and I was far and away the most junior of participants so although honoured, I was also nervous. It was for this reason that I approached the photographer of the event. I had noticed that he took his job rather seriously, clicking his camera without pause.

we found a man locked up in his room because the family didn't want him moving freely around while they were away during the day

He photographed participants as they set up their power point presentations, as they delivered their papers and as they took questions. He flashed away mercilessly as we had lunch and tea breaks, documenting delegates who chewed with their mouths open, blew their noses on their napkins and popped extra biscuits into their handbags when they thought no one was looking.

I even witnessed him clinch the million rand shot of a delegate adjusting his fly on the way out of the men's room.

"Er I was wondering," I began, "How many photographs of me would you need?"

He stared in surprise.

"I'm presenting a paper after lunch." I explained, "Um, I'm a bit nervous...worried about becoming distracted and was hoping you would take a couple of shots and then leave me to it?"

He grinned as I rushed on. "I'm not as important as all of the other presenters here anyway – you wouldn't be missing much."

His grin had turned into a broad smile.

"Oh sure, no worries." He said. "Good luck with your presentation."

Relieved at this small victory I made my way to the conference room calculating that I had just enough time to give my paper a final run-through.

About forty-five minutes later people began filing in and taking their seats while the Chair introduced me to other speakers on the panel.

As we exchanged pleasantries and handed over memory sticks I noticed the photographer walk into the room. He was followed by two assistants who proceeded to set up various pieces of equipment including a large camera whose complicated wiring was spread over the floor in the very spot I would be standing.

As the Chair began to outline the panel content the camera started flashing. It was so close by that we all blinked, temporarily blinded.

Following my introduction I rose to speak and gave the photographer a meaningful look – he had to have taken at least a dozen photos of me by now. He smiled back sweetly.

I began my presentation by outlining the state's response to the HIV/AIDS epidemic in South Africa. My argument was that refusing to provide antiretroviral medication in the public sector went against the right of South African citizens to access healthcare.

I stepped forward to point to a table of statistics projected on the screen. The table indicated the numbers of pregnant women presenting with HIV/AIDS at public healthcare facilities by province. It showed that HIV/AIDS levels had doubled between 1994 and 1996. With this table I hoped to drive home the point that HIV/AIDS could not be left unattended.

The moment was lost however when my foot caught under one of the camera cables. I spent the next few seconds focused on extricating myself from the snare while trying not to fall over. The photographer clicked with glee.

Re-composed I changed the slide and bravely soldiered on with a discussion on the ways the Department of Health's Strategic Plan emphasized HIV/AIDS prevention over treatment.

Some minutes later I thought it might be good to walk forward and physically engage with my listeners but a quick scan of the floor in front of me, strewn with cables changed my mind.

I stepped to the side instead and the photographer used this opportunity to hurl himself onto the floor, and lying on his side, flashed away with determination. He gave me a toothy grin and I smiled back, loathing him, knowing that my every facial expression would be captured on camera.

"Gosh what was the story with that photographer?" Asked one of the panel speakers. "He really seemed to like you – good thing you were wearing trousers for that floor shot!"

"Er yes." I said as we walked out of the room and into a courtyard which had a magical view over Stellenbosch. The conference was taking place at the Spier Wine Estate which was attached to a golf course, so we were driven around in golf buggies.

"I wonder what the attraction to golf is," mused my colleague as we sat in one of these buggies en route to our respective rooms, "chasing a little white ball all the way to a little hole in the ground."

"And doing that eighteen times over!" I added. I too had often wondered: my father is a golfer, his handicap is 9; my brother is a golfer, his handicap is 5 and my husband is a golfer, his handicap is 3. It all seems rather Sisyphean to me.

A man in his 30s

A couple of hours later I made my way to dinner which was being held at Moyo, famous for its haute African cuisine.

As I entered, a hostess approached me asking if I'd like my face painted in the Xhosa tradition of dots and intricate designs.

In the background a strolling threesome began singing 'Meadowlands' a 1950s township jive song in the Kwela style using the penny whistle to imitate American swing bands of the time. The song refers to the forced removals of 'non-white' people from Sophiatown in 1956.

I looked around carefully and selected a table towards the back of the restaurant where a colleague of mine was seated.
"Anyone sitting here?" I asked.
"No, go ahead." She replied.

I noticed that some of the other seats were occupied but that these people were at the buffet. The seat next to me was one of them. My colleague and I spent a pleasant few minutes discussing the day's presentations and turned to my left I only sensed that someone had sat down next to me.

As I shifted in my chair I saw a large plate of food piled high with lamb shank, couscous and salad. I turned to introduce myself to my neighbor and saw with horror that it was the photographer. My discomfort must have been obvious because he grinned at me evilly.

"Hello again." He said cheerily.
"Hello." I replied coldly.
"Got some really good shots of you," he added conversationally, "and your presentation went just fine – you were worried for nothing!"

I glared at him not trusting myself to speak. I didn't think it would be good form to start shouting obscenities in the middle of dinner. It also occurred me that this odious man would simply whip out his camera and photograph the entire incident!

"Here you are Sir." Said a waiter placing a frosted beer on the table.
"Would you like something to drink Madam?" I thanked him and ordered a red Graptiser noticing that there was a large piece of gold where one of his front teeth should have been.
"That's the Cape Flats for you!" Exclaimed the photographer. "Gold in the teeth but no food in the belly!"

"Hey Shauna, why are you sitting way back here?" Asked Adam, pulling up a chair from the next table.
"Hoping for more photos?" Quipped Charles, also dragging a chair up to my table. In spite of myself, I giggled.

My grand quest to avoid the camera had made me the most photographed person at the conference. Adam and Charles were widely respected academics who headed up prestigious research centers. Both hailing from Africa they had met and become friends while completing their PhDs at Oxford University.

Adam was well known for his flowing, majestic Afro-chic wardrobe and Charles for his charismatic ways. They spent the next fifteen minutes quizzing me about the research I was carrying out on a social movement which was active in current HIV/AIDS debates.

The organisation was formulated in 1998 to campaign for the provision of antiretroviral medication to treat HIV/AIDS in the public health care sector.

As it stood, in 1998, only South Africans on private medical aid could access antiretroviral medication. Those who utilised public healthcare had no options for treating HIV/AIDS.

I considered this the day after the conference as I drove into Cape Town towards the township of Khayelitsha leaving Stellenbosch behind me. The inequalities of our healthcare system post-apartheid were perfectly mirrored in city spatial arrangements: the pristine tree lined suburbs of Cape Town juxtaposed against the sprawling shantytown Khayelitsha.

I was headed to an interview with organisation representatives and parked my hired car in a small parking lot crossing the street to a building which housed the organisation's office. It also housed the office of Medecins Sans Frontieres (MSF).

Just as I reached the kerb, I spotted a donkey cart making its way down the road. I stopped and stared at it in surprise. "Not like all the BMWs in Rondebosch hey?" Noted a lazy voice.

I looked around. A man in his thirties, wearing blue jeans, a white T-Shirt and sneakers was leaning against the wall. He was smoking a cigarette and surveying me skeptically. I realised that I must have looked like the proverbial 'fish out of water' and quickly made my way inside the building.

I spent the afternoon talking to organisation members ranging from the provincial coordinator to members of various local branches. I learned that they referred to themselves as 'volunteers' or 'activists' and described their motivation for membership as their being 'infected' or 'affected' by HIV/AIDS.

I was touched by the openness of these activists, their willingness to share and most of all, the non-judgmental atmosphere they had created around them. It was tangible. Inquiring about their treatment literacy initiative, I was told that it was a national campaign to increase awareness around living with HIV/AIDS.

"There are people who think you can catch HIV by sharing crockery and cutlery." Explained a young woman.
"Yes," agreed another young woman, "we found a man locked up in his room because the family didn't want him moving freely around while they were away during the day."

Another of the organisation's initiatives was the treatment project. This initiative offered a limited amount of candidates an opportunity to access antiretroviral medication. The provincial coordinator explained that the point of the treatment project was to prove to the national Department of Health that commencing patients on antiretroviral medication would, in fact, successfully manage the onset of HIV/AIDS from a medical perspective.

This was important because, at the time, one of the arguments against the provision of HIV/AIDS medicines was that it simply wouldn't work because it would be difficult for patients to maintain strict regimens demanded by antiretrovirals and also that these antiretrovirals were in fact toxic.

I asked if this endeavor had been successful. A young man laughed sadly and nodded. He told me that he was HIV positive and had a very low CD 4 cell count when he started on antiretrovirals through the treatment project.

"I was so very ill and so very weak." He said.
"I hadn't been to work for weeks but the medicines made me better. I got my strength back and put on weight again. My cousin was also ill though – same thing, HIV. But he had no medicine. As I got better and stronger every day, he got sicker and weaker every day. The whole community saw what happened. Now they know the medicines can make you well again."

"Apart from the treatment project is there no other free access to antiretrovirals?" I asked.
"Hardly," answered the provincial coordinator, "the MSF has a limited programme. Perhaps you should talk to Jay – Dr Jake, he runs the project. I'll have someone fetch him from downstairs."

I nodded absently as another young woman recounted her experiences with people in her community who had been convinced antiretrovirals were poisonous and would therefore hesitate to take them.

"The government has done a good job of persuading people that antiretrovirals are bad." She declared.
"So then they don't have to supply them in hospitals." Agreed the young man.
"Yes, we can all just eat garlic and the African potato." Added another young man referring to the South African government's promoting nutrition as an alternative to HIV/AIDS medication (their exhibition stall at the 2006 International AIDS Conference in Toronto included a display of woven baskets containing lemons, beetroot, African potatoes and clumps of garlic).

"Jay isn't around." Announced a young woman who had obviously just run up the stairs.
"Probably outside, leaning on the wall, smoking!" Said the provincial coordinator with a chuckle.
"Er, please don't worry." I said, realising who Jay was. "I really ought to be leaving."

a luta continua

"A 'civil society organisation' is defined as autonomous but interrelating with the state and a 'social movement' as transforming elements of the social, political or economic system." Said Sean Freeman.

Sean was my director and one of the country's foremost political thinkers. We were on our way to meet the organisation's leader, Andy Zackman, in Muizenberg, where the shore of the Cape Peninsula curves to the False Bay coastline.

I was most excited to be on a field trip with Sean and had asked a series of questions about social movement theory. I also took the opportunity to air my own views about the term 'movement' and its connotation of transformation from one state to another and its sense of a powerful energy or force. Sean nodded in agreement adding that the organisation had some 10,000 'member' activists, which represented but a fraction of the five million HIV positive people in South Africa but that its capacity to mobilise large numbers of participants indicated just such power.

Not familiar with Cape Town I had suggested Sean drive but given that the car had been hired in my name it made more sense for me to drive for insurance purposes. Sean assured me that he would provide ample directions from the passenger seat. This did not go exactly as planned however when his cell phone rang.

"Yes, it's just for this week." He said into the phone.
"Everything goes back to normal next week."
"Er which way?" I asked hesitantly motioning an upcoming off ramp.
"No, of course not!" He exclaimed waving a hand.
I took this to mean I was to ignore the off ramp.
"This way, this way." He said pointing to the off ramp, just as I was about to drive past.
"Oh sorry I thought your hand waving meant not". I explained in a loud whisper.
"What? No I wasn't waving my hand at you!" He assured his phone.
"No, when I wave my hand it doesn't mean I'm being dismissive."

At this point we had reached a four way stop and Sean obligingly waved his hand again. This time I carefully consulted a signpost before turning left. Sean nodded approvingly. The remainder of the journey was just slightly less perilous and we eventually arrived at the Muizenberg office where we were directed along the sea facing road to where Andy lived.

I looked curiously around the charming little house, where tea and cake had been laid out on the lounge table. Andy shook my hand warmly and smiled when I told him that he had been the keynote speaker at my University graduation.

As I sat on the sofa he and Sean chatted casually about generic medicines and the pharmaceutical industry. I was struck, yet again, by how eloquent Sean was and how brilliantly conceived his questions were. We began by asking Andy what his organisation's main objective was.

"We want to create a moral consensus behind our demands. Government is morally weak in failing to provide HIV/AIDS treatment to South Africans. The left needs to give a sense of morality to politics."

"Is this the reasoning behind your personal decision not to take antiretrovirals?" I asked.

"Yes, I couldn't take medication that is denied to the majority of HIV positive South Africans even if it had a detrimental impact on my own health." I nodded, seeing that morality had to become an essential feature of the entire organisation's activity.

We then moved on to discuss some of the organisation's strategies and learned how activists used a mixed repertoire of tactics drawing from the anti-apartheid movement's civil disobedience campaign but also utilising methods entrenched in the democratic order. These included protest and petitioning as well as seeking rights-based justice in the courts.

Indeed, it was the Constitutional Court decision compelling the Department of Health to provide Nevirapine in public hospitals that paved the way for the eventual provision of antiretrovirals in the South African healthcare sector. Nevirapine is an antiretroviral prescribed to pregnant women preventing transmission of HIV from mother to child.

The Constitutional Court case was brought against the Department of Health by the organisation in 2001.

"Would you say your focus is single issue?" Asked Sean.
"Well we have to go beyond demanding the right to healthcare for HIV positive South Africans. We must also hold the government to its promises."

I considered this point as the interview came to an end. Enacting policy to provide HIV/AIDS treatment was only one part of the equation. Ensuring that the policy was effectively enforced would be another. To use the battle cry of the Mozambican freedom party: a luta continua (the struggle continues).

As we drove away from Muizenberg, I recounted to Sean my unfortunate experiences with the photographer. He chuckled with delight.

"Ah, the limits of solo advocacy," he said, "perhaps you should have approached him in a group – you know, drawn in a few of those biscuit snatchers to support your cause?"
"Because there's force in numbers?" I asked.
"Because there's 'power in movement'." He answered.

1 - An apartheid zoned township of Cape Town for people who were designated to be 'black' or 'coloured'.

2 - A reference to Sidney Tarrow's book on social movements entitled 'Power in Movement'.



Shauna Mottiar

Shauna Mottiar

Shauna Mottiar is Senior Research Fellow at the Centre for Civil Society,UniversityofKwaZulu- Natal. She has a PhD in Political Studies from the University of theWitwatersrandand her research interests include civil society, social movements and social protest. She currently manages the Centre for Civil Society Philanthropy and Social Entrepreneurship project focusing on the role of philanthropy in social justice and social change.

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