This week, Amel takes a look at how information about HIV does not guarantee awareness

There are certain things you get used to when working in the field of health, particularly in HIV. Numbers, words, patterns, and systems that you become acquainted with as part of the everyday language of treatment and prevention. Working with Betengna brings you in touch with even more stories that make it possible to imagine the “unimaginable”. If you who have been listening to the diaries of Woldegerima, Uma, Aster, Gonderit and Senait, I’m sure you understand what I mean. While their stories are always full of amazing events and surprises, those very elements become a pattern that you automatically expect from any Betengna diarist. But lately, a certain situation, and in particular a question, keeps crossing my path, one that I find astonishing and never know how to answer.

It usually happens when I meet new (and I’m assuming well educated) people in other fields and explain my job to them. “I coordinate the Betengna radio diaries. It’s a radio program where people living with HIV talk about their lives…” You can see their expression change from smiley and pleasant to uncertainty and some level of worry. Realizing my reaction to their expression, they quickly and visibly recover from their shock and search their brain for the nearest intelligent thing to say, something that can make them seem informed and caring. So nearly 9 out of 10 of them will then ask me, “how is that thing? Is it decreasing now?” Needless to tell you, they are asking about HIV.

I smile politely and try to answer their question but their expression and inquiry translates into a disturbing reality for me. I’ve seen their initial change of expression a hundred times across different faces. I think it’s usually because people are not sure if I’m telling them that I’m also HIV positive or if I’m just working with people who are. Some change their expression, realizing that people who work in HIV are not necessarily also positive but others remain with that wary look plastered on their faces for a bit longer. It’s the same look our diarists talk about when they first confided to their friends or family member that they tested positive. The kind that one of the Betengna producers described he saw on landlords when he went undercover for an episode pretending to be HIV+ and looking for a house to rent. It’s not a look that intends to convey disrespect or offense to the person they are speaking to, but it does show how very little they still understand about HIV and how far removed they think it is from their own lives, as does their question, ‘how is that thing? Is it decreasing now?’ They can’t even bring themselves to say ‘HIV’.

I could of course explain to them how surveys tell us HIV prevalence is higher amongst women than men, or that urban residents are at a higher risk of infection than rural, but that would only paint a hazy picture of numbers they have no relation with (or at least that they know of). When I answer their question, I would like them to understand that the simplistic notion they harbor about HIV and what it would take to reduce it is in fact not so.  That the numbers they are asking me about have a lot to do with themselves, their families and friends. How what they do and say is an essential ingredient to what they are enquiring after. And that all said and done they are also qualified to answer their own question. So the next time, I can only think to ask them right back “I don’t know, what have you done to help decrease that thing?”