Concerns raised about the HIV sector sharing activists’ route of HIV transmission
Chiva would like to acknowledge an important article on Aidsmap, in which two anonymous voices, both HIV activists living openly with HIV, express their frustrations with peers in HIV advocacy for repeatedly sharing the information that they acquired HIV perinatally, without their consent.
Even though someone is open about their HIV status, this does not mean they’re open about the route of transmission, the two argue in the open letter. In fact, most do not discuss this aspect of their experience in public spaces. For revealing that someone was born with HIV has certain repercussions, exposing mothers or other family members, for example, who may not be open about their status.
“One of the universal rules of the HIV world is that you do not ask someone how they acquired HIV, and yet our peers regularly share our transmission route without our consent.”
After the two were revealed, without permission, to have been born with HIV on event panels, in mass emails, YouTube videos and in funding applications, they’re urging the sector for more sensitivity around the sharing of this information..
“Focusing on our stories is important. Highlighting the differences we have to navigate is crucial. But this can be done without exposing us.”
This is a reminder to all those involved in HIV advocacy that whilst providing platforms for younger voices is crucial, we must do so sensitively, whilst respecting the full autonomy of those we work with.
We must ensure young people own their stories and how and where they’re being shared. And this means participation and empowerment practices must be at the core of everyone’s approach.