In Carl Sagan’s Contact, an alien civilisation discovers Earth, and sends a blueprint for a machine that will transport just five earthlings to another world. To build the machine, humans have to develop entire new industries and technologies. Once the construction is complete, the human race has to decide which five people can represent them – a delicate exercise that balances the interests of financial clout, geopolitical representation and gender.
The world of national and global responses to AIDS often acts a bit like an alien, in its attempts to make good on the principle of actively involving communities and people who are affected in the response. The reason this principle is so embedded is that those communities spent years being the only ones doing anything about the epidemic, and kicking doors down to get politicians and donors to do something about it. They had strength in numbers, and millions owe their lives to them. (And I’d estimate that tens if not hundreds of thousands of people, including me, owe their jobs to them).
As the principle has become central to the response to AIDS, the various movers and shakers have looked for ways to enshrine it in policy, to systematize it. Local, provincial, national AIDS coordination committees are all supposed to have community members on them. Donors like the Global Fund to fight AIDS, TB and Malaria want to know that various categories of people affected have played a role in designing any projects they fund. Governments and international advisors, have created space, often because they know that’s where the smart money is.
But the thing is, it’s so damn hard for those who are in charge to make this work – given their assumptions, that is. As one senior government official said to me last year, “we’re happy to involve the [insert category of marginalized population here], but they need to pick the right representative”. The right representative. Right presumably meaning those who will stay broadly on-message, and who understand the ins and outs of epidemiology, evidence-based policy making and global financing. Good luck with that.
There is also an expectation that whoever the representatives are, they should represent and reflect the views of their communities. But these aren’t homogenous communities. Often their main shared characteristic in common is being HIV-positive or selling sex for a living, or something along those lines. While people within these categories may well have shared experiences, this doesn’t mean they all want the same things or that they cope in the same way. People within them often fundamentally disagree with each other in many ways. The structured, formalised systems for community involvement that are increasingly the norm do have some value, but they cannot resolve conflict or create compliance. Another UN official once told me she had arranged over 20 meetings with sex workers to “try and get them on common ground”. I would have thought that after 2 or 3 meetings she might have realised she was doing something wrong.
Just like the aliens who may one day come and ask to be taken to our leader, the handful of national policy makers who insist on being accountable to just one or two interlocutors when they are supposed to meet the needs of thousands, are living on another planet.