Stigma is you and me
Last weekend I visited my friend in Helsinki and we went to see Robert Mapplethorpe’s photography at Kiasma, a museum of contemporary art. The exhibition opened with a gigantic timeline of his rather eventful and idiosyncratic life in 1970s and 80s New York. One detail caught my attention: he was diagnosed with AIDS in 1986 and died of related complications only three years later.
These days this is not typically the case - the disease is highly treatable and people can live long, healthy lives with the virus. Also, contrary to the age-old stereotype, gay men are not the main demographic. Of the 35 million people currently living with HIV or AIDS in the world, about a half are women, and 3.3 million are children.
Anyone who has acquainted themselves with basic facts about HIV and AIDS also probably knows that stigma is a big part of the epidemic. There are countless stories of people who have been ostracised by their communities and felt hopeless in the face of harsh social exclusion - in addition to being infected by the virus, they have been tainted, devalued as a human being.
It’s no surprise, then, that a lot of our work in Malawi focused on managing the impact of HIV and AIDS on individuals and communities - we frequented AIDS TOTO clubs at schools and the Dunduzu AIDS Support Group, sang songs with lyrics like ‘AIDS is a disease’ and ‘it’s stupid not to get tested,’ pretending to inject our arms with our fingers-turned-needles and get tested. The team in Chikwawa ran a massive awareness raising campaign and inspired a hundred people to get tested there and then (of whom only two were positive!). The reluctance to get tested is one consequence of social stigma, and a lot of people who live with HIV do not know it - ignorance is bliss, right?
The stigma attached to HIV and AIDS was no news to me, and it was inspiring to be challenging it through the work we did at Ungweru. But like with several social phenomena, it took me a while to realise just how subtle, ingrained and pervasive this stigma is. Fast forward three months and I’m sitting at the doctor’s office in a grey suburb in Finland, on an overcast, dreary afternoon in March. I needed a doctor’s note for work and because I was feverish and felt exactly as sluggish as I did when I had malaria, I thought it would be a good idea to rule out the possibility that some little plasmodia-fuckers had somehow survived in my system despite all the doxycycline and were now kicking up a fuss.
I described my medical predicament to the doctor and told her that I’d lived in Malawi for a few weeks to explain why I thought a blood test for malaria might be a proper course of action. She started typing up a referral on her computer and mumbling about blood tests. I was too fluey to make sense of her rambling and interjected: ‘you mean a blood test for malaria?’ ‘No, for HIV’ she replied.
Even under the strain of all the cold-and-flu like symptoms, my brain was able to discern just how weird this was. She had come to the conclusion that I should be tested for HIV simply based on a set of geographic coordinates; the fact that I had been to Malawi. Nothing wrong with getting tested, but I had not expressed any desire for it or gone to see her about my sexual health to begin with. Nor did she ask me any standard questions about sex, needles or blood transfusions, or try in any way figure out whether I had been at risk of exposure.
Apparently, then, HIV is transmitted through the mixing of blood or other bodily fluids in Finland, but you can catch it like a common cold in Sub-Saharan Africa. Ironically, at the same time she had a hard time agreeing that a test for malaria would be appropriate, even though that is a disease that's actually kind of transmitted through the air. And most worryingly, she is a highly trained medical professional who has probably at some point in her life studied virology at university level and most likely has a better grasp of the intricacies of the human immunodeficiency virus than the average punter on the street.
It got me thinking: if a licensed doctor trips up like this, I must be unknowingly stumbling too. It’s easy to perpetuate social stigmas because they are something that we do not often consciously subscribe to. They are woven into the fabric of behaviours, beliefs and ideas that blankets a big part of our collective social space, and there’s nothing social animals love more and know better than to conform. It’s something about the atmosphere - slight wariness, subtle aversion, barely noticeable hesitation.
In some cases, first reactions are just that, reactions. Immediate, knee-jerk responses that have not been thought through at all. Par exemple, one current volunteer blogging from Mzuzu town admitted that ‘the moment I heard I was going to an AIDS Group therapy session my first reaction was “I hope I don’t get HIV.”’
In the rest of the blog she discusses how ridiculous and uncalled for this initial reaction is. It’s what’s so sinister and paradoxical about social stigma (not just in terms of HIV and AIDS, but anything under the sun that is or can be stigmatised) - you know that negative knee-jerk reactions are wrong and unjustified and not what you genuinely believe in or subscribe to. But it’s still there. It’s not who I am, and it is. I can’t pretend that I can fully insulate myself from the influence of negative societal attitudes, but I can try and call myself out on it and choose to react differently, the way the real me would.
Because stigma is not just a few stories from some place far away about a dysfunctional, discriminatory African village, or a few lines on an international development organisation's website and policy papers. It’s something that we have inadvertently absorbed from our surroundings. It’s you, and it’s me, and the compound effect of our hundreds of thousands of interactions with others in our daily lives.
Getting diagnosed with HIV might no longer be a death sentence in the literal sense of the term, but it can be, socially speaking. This has to change, and we can all play a part in that.
