#AIDS2016 through the eyes and voice of a young black woman

While the International AIDS Conference is lauded by many as a chance to celebrate progress made in HIV/AIDS treatment and research, ANDILE MTHOMBENI believes it’s nothing more than a parade for NGOs where young people have sold themselves out.

Like Charlize Theron said, “I should be honoured” to have had the opportunity to attend my first International Aids Conference, in my home country. But just like her, I do not feel honoured. I thought this would be a great opportunity for me to meet and engage with very interesting people – experts, scientists, activists, researchers – from around the world, coming together to share what we have learnt over the years and how we can improve. And yet, just two days into it I could not wait to go back home. My heart was so heavy when I left, but I felt relief to be out of that “violent” space.

I felt violated as a young black woman, someone who still falls under the category of those most at risk of new infections. It was as if people were talking about us while we were in the room. Talking for us, yet we were being silenced – even when we spoke. They heard what they wanted to hear and they will go back to their offices and keep doing what they always do, because, let’s be honest, how many of us are truly introspective and reflective of our wrongs? After all, they are the experts, right! The experts who have been working for 10, 20, 30 years in the field. Their voices thus are more credible and valuable than ours, right? We are just young people – what do we know?

The intersectionality of being poor, black, young and female

People often always assume that it is men who oppress and silence women. Yes that is true, but women also oppress and silence other women. Older women suppress and silence younger women, and white women oppress and silence black women. At the conference, race seemed to be the elephant in the room. There is no way we can talk about health and its inequities but fail to address class and racial differences. Scientists would ramble on about how it is “us, young black women who are at risk” of new infections and claim that it is because of our background and environment, low-socio-economic status, and our cultural values that are patriarchal and oppressive. That may be true, but let’s not neglect to address the fact that it is white women and men who are speaking for us. They are the experts, the lead researchers, the funders. We are the victims, the helpless, the useless.

They speak of us black people as if we are children that cannot think for themselves; we need help from the “West” otherwise we will keep killing ourselves through this disease. I raised the question, how is it there are very few young black female scientists on these podiums – are we really not that educated as a people? We, young women, are not homogenous and cut from the same cloth. It is the very same older women who attend these conferences, work for non-governmental organisations (NGOs) or form part of civil society fighting AIDS that go back to their communities and tell young women to close their legs and not engage in sex.

Who are these young people chosen to represent us?

Also read: Young people are at #AIDS2016 to learn, and to teach
Also read: Young people are at #AIDS2016 to learn, and to teach

At conferences, I often see young people who are said to be representing other young people. I wondered how they choose those young people. It is always those who can mesmerise the crowd with their words; those who speak “good Engrish”. And I wonder if people ever take into account the class differences that exist in our societies. It’s often the young people, the “ambassadors” from big organisations such as PEPFAR, UNFPA, and AFRYAN etc, who are trained to speak as if they know the scale of the problem and understand it much better, when all they do is travel the world and be spokespeople of other young people. I’m not seeking the spotlight for myself here, I just wish everyone would be included and not leave anyone behind as they always preach. Clearly, we forget.

I was so touched when I attended a session put together by a project called “LINK-UP” where young women representing Burundi and Bangladesh were brought to the conference to speak for themselves, despite not speaking English “well” and needing translators. I could relate because our stories and problems are similar, as young black marginalised women from poor backgrounds. Not the young black heterosexual males who often speak on behalf of young people when those boys themselves are the ones oppressing us girls and our voices.

Are we fighting HIV/AIDS for the right reasons?

The HIV/AIDS response here and elsewhere in the developing world is led by civil society, which plays a vital role in prevention, care and support and getting people into treatment. The success of the 90-90-90 programme is entirely dependent on the cooperation and mobilisation of civil society. Civil society acts through NGOs, which can be locally based, national or international.

There is evident division in the civil society, both by size (small vs. big NGOs) and ideology (human rights vs. other). Bigger, more established, human rights organisations tend to be either international or receive a lot of international backing. Smaller ones are locally formed, locally run and receive some funding from the bigger sibling. The sector is further divided by race and racialisation, with the former predominately white-staffed and the latter, black-staffed. It’s evident that race politics still plagues the health field and impacts on the work that is meant to prevent disease and respond to epidemics such as HIV/AIDS. White people are not for us and they will never be for us. I could be wrong. The worst part is that some, if not most, black people have bought into this and are puppets to the system: the system of NGOisation. They want to run a business out of an NGO, a get rich quick scheme, at the expense of their fellow brothers and sisters who are dying of HIV/AIDS daily.

Everyone wants to open an NGO nowadays; it’s trendy. You stand more chances of being successful in your NGO endeavour if the focus is on young black women or LGBT communities, or sex work. That’s not to say that these issues should not be focused on; clearly they should. But the conference is the space where people come to sell themselves; they parade themselves and their NGOs to funders. Either funders buy into what you’re selling or not. If they’re returning customers, you have to kiss their hands and feet to make sure they keep sustaining you and the lifestyle you have created for yourself. I say “lifestyle” because most people do not start NGO organisations anymore entirely for the good of communities; they start them because they see money making opportunities. The opportunity to travel the world and attend conferences in comfort? It’s all done in the name of “activism”, “advocacy”, “justice” and “helping my community”.

You’re at these conferences to network with the right people. Do not waste time mingling with nobodies, that’s the strategy. Especially the young people who know nothing, unless you want to use them as a front, as your way to get funding. We are not there to support one another but rather out there to backstab each other. It’s a competition, a very dirty and ugly playground. There is an inner circle, and if you are not part of it then you have work to do. It’s all a chess game, and we young people are the pawns.

It is not that HIV/AIDS cannot be managed like other diseases. I believe it can be successfully prevented and cured. However, because the vision has been lost, misguided, and shifted from being about saving people’s lives to being about money; it’s now all about funding and capitalism. It felt like I was in a fashion show. As a friend echoed, the flea market felt like a “Wall Street of health”. Everyone is talking about funding this and that (which is important on its own, make no mistake), investing millions here and there. And often where there is money, there are misguided outcomes: a survival of the fittest, selfishness and ego boosting. Capitalism has disguised itself under philanthropy.

Also read: Millions of people around the world are still without HIV treament
Also read: Millions of people around the world are still without HIV treament

As much as I would like to believe that there is hope to reduce HIV new infections and that by 2030 we would have made progress, that is not going to happen. I cannot be an optimist while the very same people that have misguided the vision are still the ones in charge. We won’t go anywhere until people are reflective and embrace active transformation.

HIV has turned into a business, a money-making scheme. Without the problem, the money would be directed elsewhere. No-one wants to see the billions of dollars go somewhere else, because then that means their lifestyles are at risk and many would lose their jobs within this NGO industry. And thus, they would rather keep the problem alive and come to conferences, hiding under excuses of needing more research data and funding, needing to refocus strategies, people not learning their lessons and continuing to have unsafe sex, stigma and discrimination.

I see little hope wherever capitalism is involved, because it is very seductive. The so-called young people that are leading the “fight” are being led by those same people who have misguided the vision. They, too, become brainwashed and aspire towards this misguided vision. Aiming to open their own organisations and hooked on the travelling obsession looking for more funding. Neglecting the very people that they claim and preach to be doing all that for.

They don’t really care about us

Poor black people are being paraded. Our lives are cheap; we are being left to die while they speak and pretend to be for us when actually they are using us to gain money and maintain their careers. Yes, money is needed to fight this war but how much is enough? Are we ever going to reach a point where we say we have enough money now, let’s do the work?

I would love to believe Charlize Theron, Prince Harry, Elton John and co. when they say that “us young people” are the ones to end this thing, but I am skeptical of that. Because some of us young people have already sold out. There is no hope for us unless we move away from the contamination and start afresh. We keep starting new organisations, partly because we see no hope in the existing ones, but we are going nowhere. We are working hard to make sure the problem remains rather than working hard to make sure it goes away. If our intentions were truly for the marginalised, then why don’t we work together rather than individually opening our own foundations when we are driven by the same vision or goal?

At the AIDS conference, the PrEP drug was being sold to young people. We are told that it is a preventative measure, and yet I wonder how much of scientific education is given to the same young people being told to market and take PrEP themselves. Yes, the Department of Health has a National ART guideline which can be accessed online for people to familiarise themselves with the scientific technicalities of antiretroviral treatment. But we are not seeing the long term consequences, instead it’s just another cover up given to us to make us believe that everyone is working hard to keep us alive, just because they care about us right? I wonder what kind of selective care and love this is.

They care about young girls – they want to keep us in schools until high school but don’t want to support us in getting higher education because then we become too smart like them. They definitely do not want us to be doctors and scientists like them – instead they would rather have us be field workers and data collectors in their studies about us, and pay us stipends of R150 per day. We do the work for them and they take it and choose what to present at conferences and what not to. They speak on our behalf because we apparently do not have the expertise/capacity or knowledge on how to engage in such big spaces?

Our bodies are their guinea pigs, they test their drugs on us. “Take PrEP,” they say, “No wait try the dapivirine ring, try this, try that”. Black bodies are cheap, they are an experimental playground.

Promise after promise is made, and next year we will be here again saying the same thing, taking pictures with young people and celebrities and then claiming to be making progress and involving young people. So the question becomes, when do we go out there and implement what we have promised? See what works and what doesn’t and how best to improve? Instead, we keep travelling and spending money and chasing more of it without actually doing the work and evaluating our efforts. There is no accountability. Who is holding NGOs, government, and young people truly accountable? We are all sleeping with each other in the same bed and screwing the poor blacks. We are hypocrites and we lie, not only to ourselves, but to those that need us the most.



Also read: AIDS2016 Editorial: We cannot wait for another Nkosi Johnson moment to scale up the response to HIV/AIDS
Also read: #AIDS2016 Editorial: We cannot wait for another Nkosi Johnson moment to scale up the response to HIV/AIDS

There is no doubt in my mind that when this vision of fighting HIV/AIDS started it meant well, but somewhere down the line, we lost it. Money is needed and is vital but it does not solve all problems. If anything, it creates bigger problems like greedy and selfish people who want to run their own NGOs and exploit black people within those organisations. I have always wondered why money always comes from a “funder”, then goes to white-led organisations before getting to the grassroots blacks who only get the crumbs of the bread – it’s because people are greedy. White people will forever be trusted to know and do what is best for the blacks while we follow behind them like headless chickens.

Being black is constant humiliation. I am angry and I am hurt. Just because you give someone money or funding does not mean you have to parade and prostitute them like you are the master and they are the slave. Our shameful old ways have not changed. They have just been reformed and polished, well hidden under the face of “I am helping you, without my money you would be nothing”.

Now with that all said and done, I would like to thank my funders who made it possible for me to attend this conference, but I think I would be happier seeking further education and trying to find alternative ways of changing the world and making young people’s lives better. I do believe there are some genuine people out there interwoven within this whole complicated system, working tirelessly to make sure people’s lives are transformed and changed for the better. To those of you – you know who you are – I say to you keep up the good work. It never goes unappreciated. You might be drowning in the midst of the sharks that have turned their backs against their roots and humanity but your work is not going unnoticed. At the end of the day, not everyone, whether it be at the conference or outside, is all about pushing themselves forward. Some people are genuinely concerned and wish to bring about change. That, I have to believe.

To the young people that represented at this conference and those who will carry on to represent in future conferences and meetings, I pray and hope to God that you do not get caught up in the system of capitalism and greed and forget your fellow youngsters who truly need empowering and assistance. I have more to learn and I am open to being convinced otherwise, but within every good intention there is some great work that is achieved. However, bad also finds a way to sneak itself in there, and some of us unfortunately have to be the “bad cops” who critique that.

Andile MthombeniAndile J Mthombeni  is a Masters student in Research Psychology at the University of the Witwatersrand. She is part of an advocacy action-research organisation African Gender Institute (AGI) that aims to empower young women’s leadership skills through researching Sexual & Reproductive Health & Rights (SRHR). She has research interests in fatherhood, young women, HIV/AIDS as well as knowledge production. Email her at Andile.Mthombeni@wits.ac.za

Featured image courtesy of the International AIDS Society/Marcus Rose