The culture of silence

The other night, I went on a nice enough date with a nice enough guy. We were having nice enough conversation, until he decided to tell me about a documentary he had recently watched on African despots. The conversation quickly turned to politics; I was arguing that political power provides unprecedented access to wealth in Africa, and how the old guard capitalized on this idea, to the detriment of their people. As the queen of segues, I managed to somehow relate this discussion to my own extended family and the varying degrees of success that exist within it. I mentioned that 2 of my uncles had passed away from AIDS related illnesses, and that I didn’t think that there was any African living in Sub Saharan African who didn’t know anyone that had died from HIV/AIDS. My date looked a little taken aback by this statement. At this point, I thought I’d offended him (or at the very least, made him uncomfortable). He assured me that this was not the case, but said that he was ‘pretty sure’ he didn’t know anyone who was living with HIV/AIDS, let alone had died from it. This completely surprised me – my date was born and raised in Africa, to African parents.

Now, before you attack me (‘that’s a stereotype!’) let me explain why I made this assumption. Sub-Saharan Africa is home to a staggering number of people living with HIV/AIDS. 25% of adult Botswanans are HIV infected. South Africa currently has the largest population living with HIV/AIDS (5.6 million as of 2009). Partially as a result of high HIV infection rates, Swaziland has the lowest life expectancy in the world – only 32 years. In Zimbabwe, an unfathomable 71% of all orphans are AIDS orphans. Despite what the denialists and leaders who claim to be able to cure AIDS (only on a Thursday, though!) would have you think, for most Africans, AIDS is not just any disease – it’s *that* disease. It’s the disease that’s catching up with malaria in terms of overall mortality rate. It’s the disease that is killing off the most economically important sector of the population. It’s the disease that’s leaving women husbandless, children parentless, grandparents to raise their grandchildren.

Knowing all this, I found it really hard to believe my date’s claim. This got us talking about what I call the culture of silence that still surrounds HIV/AIDS. In “Illness as a metaphor”, Susan Sontag discusses the stigma attached to tuberculosis and cancer (in the 20th century). Cancer patients were treated like walking contagions, somehow responsible for their own current unfortunate situation. Lung cancer happened to people who smoked; stomach cancer, to those who didn’t eat healthily. Essentially, lifestyle choices were the obvious explanation for the disease. The same sort of rudimentary logic has been applied to HIV/AIDS infection; if you engage in risky sexual behaviour, you’re going to get HIV. I’m not saying that the rhetoric doesn’t have its place – HIV is transmitted through the exchange of bodily fluids like blood and semen. Most commonly, it is sexually transmitted, so if you have unprotected sex with someone infected with the disease, there’s a likelihood you’ll be infected yourself. Same thing applies for IV drug use. But, this sort of just glosses over the issue. There isn’t enough room here for me to tackle the complex socio-economic and political issues that explain why the infection rates of HIV are so high in some places – but suffice it to say, it’s not because Africans are having more sex.

This brings me back to my central point; the stigma that surrounds HIV/AIDS and the behaviours associated with it have entrenched many Africans firmly in this culture of silence. Simply put, we don’t talk about it enough. In Kenya, this fear of talking about the disease sometimes manifested itself in strange forms, like obituaries printed in the newspaper, speaking of people who died of ‘a long illness bravely borne.’ I even saw this silence in my own family. An older cousin who was diabetic lived with my immediate family for a short period of time in the 1980’s, and one day, when I was about 8, my parents told me that he had passed away. The explanation was that he died from diabetes, and it wasn’t until I was older that my mother explained that he had contracted HIV from sharing his insulin needles with an infected person. Amongst extended family, this fact was NEVER discussed – it’s almost as if not talking about it meant it never happened.

This pervasive, oppressive silence highlights an even deeper problem that’s probably affected the increase in infection rate – the assumption that AIDS discriminates, that it somehow only affects certain people. To go back to that conversation with my date, my theory was that he did know people who’ve died from HIV/AIDS – he just wasn’t aware that that’s how they died. Like me, he grew up in an upper middle class neighbourhood, and went to school with the children of dignitaries and expatriates and politicians. The people who ran through our social circles were wealthy and well to do; they went to church every Sunday, hung out in golf clubs, travelled extensively. People like that just don’t get HIV – right? That type of assumption feeds into faulty logic – that girl looks ‘clean’, she comes from a good family, she goes to church, she’s a virgin – and when HIV started to manifest itself in wealthier communities, instead of talking about where it was coming from, we just pretended it didn’t really exist. On one hand, it’s easy to see where the hesitancy to talk about HIV stems from, when you live in a socially conservative, somewhat (or very) religious society. Talking about sex was a ‘Western’ thing to do, and (supposedly) encouraged promiscuity. In high school, my close girlfriends and I barely whispered about the subject with each other, and the running assumption was that most teenagers we knew weren’t sexually active. Obviously, this wasn’t – isn’t – true, but it’s an assumption that was held by many. My friends and I were educated and exposed, but if we didn’t think that our social peers were having sex (unprotected pre-marital sex at that), we certainly didn’t think that they were contracting HIV at alarming rates. And if they were – well, obviously they deserved what they got.

What’s gotten me most frustrated in recent years is the crushing effect that this silence has on women and girls. On a global scale, women lead the numbers in increases in HIV infection. In sub-saharan Africa, many factors play into these types of statistics – biology, tradition, and sexual violence to name a few. Columbia economist Jeffrey Sachs noted that HIV/AIDS ‘damages society just as it does the human body’ by killing off those who constitute the building blocks in society, the ‘women and breadwinners who sustain and safeguard the community as a whole.’ In Kenya, where I grew up, women aged 14-25 are 4 times as likely to be HIV infected than men. In countries where subsistence and micro-economic projects are really important for future economic growth, women are the bearers of a lot of the economic burden. If we’re also getting HIV at higher rates, what does this mean for our long term economic future? 3 decades into the AIDS epidemic, we’re still blaming sexual promiscuity and immorality for a disease that has so many more dimensions, and we’re barely participating in productive discourse about how to stem the numbers and reduce infection rates, let alone increase acceptance of those already living with HIV/AIDS.

I’m not implying that there has been no progress when it comes to speaking openly about HIV/AIDS in sub-saharan Africa. In the 1990’s, Uganda took an unprecedented, highly aggressive approach to reducing HIV infection rates, with much success. A really important part of the campaign was the acknowledgement that many young unmarried people were sexually active, and the introduction of VCT programs (Voluntary Counselling and Testing for STI’s) and safer sex awareness did much to stem the tide of infection. More recently in Kenya, AIDS education has become an important part of the curriculum in both primary (grade school) and secondary schools. An even bigger stride is the recent endorsement of condom use by the Catholic Church, despite the general unwillingness to endorse comprehensive safer sex education and awareness campaigns. These examples of progress, albeit encouraging, are nowhere near enough. And until they’re enough, I’ll keep making my dates uncomfortable.