What does HIV mean to us today?

Growing up, I always knew that HIV was a big deal. It was depicted as the merciless killer of people in Botswana. Before I understood much about the HI virus, I knew it was a terrible thing. It was talked about as if it was the single biggest threat to my entire country (that’s only 2 million people…. but still).

I’d say most messages about HIV were scary. However, there were also some positive messages which aimed to remove stigma about HIV. These were the messages saying that you couldn’t get HIV from hugging, playing with or shaking hands with HIV infected people. They aimed to show that people living with HIV were like everybody else and should be treated as such.

As HIV has always been something I care about, last year I participated in a HIV-awareness campaign on campus. The message of the campaign was simple enough. The campaign posters showed our faces and were written “I am living with HIV”. The posters certainly got people talking. I had people staring at me in the dining hall, people asking my friends if I was HIV positive and that sort of thing. Most people didn’t say anything to me upfront, except one friend who said I was “so brave”. From following twitter responses of the campaign, this was not an isolated comment. The idea that someone would choose to associate themselves publicly with HIV was seen (by some) as brave.

The reason I participated in the campaign was because I believe HIV affects everybody and (regardless of status) we’re all living with it. Although the ambiguity of the caption was meant for shock value, the shock value really depended on the stigma  so the campaign did reveal that there is still HIV stigma today. For me, the message should not have been as controversial as it was and I don’t think it was particularly ‘brave’, because HIV is everybody’s issue.

There were many criticisms of the campaign, ranging from problems with the concept to problems with the execution and I’ve considered these retrospectively. One of the points I’d agree with is that, in its execution (the expressions on our faces, the colours used on the posters), the campaign painted HIV as a very serious, sombre issue and thus, contributed to HIV’s negative image.

At the same time, I have considered the following: how would the campaign have gone if we [instead] all looked really happy? I’m not sure that would have worked any better. It is true that HIV is not a death sentence. However, I’m not sure a ‘happy’ HIV campaign would be sensitive because [as the campaign showed] HIV stigma is still a big problem in our societies. For this reason, it’s tricky to find a balance in the way we represent HIV.

Since this campaign, I’ve thought a lot about the way HIV is depicted. My biggest gripe is that there are hardly any campaigns about people (our age) who are born with HIV and lead ‘normal’ lives. The single story we are told is that you get HIV through unprotected sex (or sharing needles). I believe HIV is placed in this frame where it seems like infected people always did something “bad”  to get infected. There’s no nuance in the story and a result is that we are often scared into protecting ourselves.  I find there’s a big tension here. How do you use scare tactics but still maintain the dignity of HIV-positive people at the same time? What are the alternatives?

What I think hinders the fight against HIV is its association with morality. When we think about it, HIV is mostly associated with [‘immoral’] people who are promiscuous or have done drugs .That’s when HIV goes from being a normal,manageable virus that anyone can contract to a terrible disease that says something about your morals if you’re infected. That’s why it becomes ‘brave’ to associate yourself to it.  Once those morality lines are drawn, it becomes very difficult to fight the problem. I don’t know anyone who wouldn’t get nervous taking a HIV test for the first time, because being infected with HIV has become so terrifying. Don’t get me wrong, I’m not dismissing the difficulty of living with HIV. However, I think we’ve built HIV up to be this scary monster and stigma keeps on feeding the monster we’ve created.

Maybe people would be willing to test more if they weren’t super terrified of a positive result. Maybe people would be more open about being HIV positive if they wouldn’t have to face society’s harsh moral judgements. Why should it matter how someone got infected anyway? Why does it have to mean something?

The other thing is that if we over-tell one story of HIV, like the one about sexual promiscuity, people who don’t think of themselves (or their partners) as ‘promiscuous’ won’t have incentive to protect themselves. They won’t think they’re at risk. This is how HIV goes from being a virus that anyone could get, to the perception that it’s a virus that only certain types of people get. It’s tempting for us to paint HIV as something that only “those people” get [insert relevant stereotype here]. It allows us to feel safe. We’ll think it’s unlikely that we’ll get it because we are not like them. 

At the end of the day, a HIV infection is primarily a health issue. So why isn’t it depicted as such? Where are the campaigns that say “Take care of your health. Protect yourself from HIV like you would from any other illness”? Its conflation with promiscuity or sexual deviance has made it somehow different to other illnesses. There’s a similarity here to the way we think of HIV and other STDs/STIs. These are merely infections of the body. Sure, some are more manageable than others but they become much more difficult to eradicate when no one wants to talk  or think about them. Sex is how probably all of us got here, but it’s such a taboo topic in society that things related to sex have become super-shameful. We can’t talk about HIV honestly because of this shame. We can’t talk about STIs openly because of this shame. The infections themselves are often treatable. The shame is what forces us into silence and inaction. This shame and silence is what’s  killing our society.

Where do we go from here?