Questions of exclusion
The 14th World Aids Conference at Barcelona may have succeeded
in getting the world's politicians climbing on the Aids treatment bandwagon,
but it ended on a sour note. At the final press conference, Canadian Aids
activist Tom MacAulay read out a letter to the organisers from the HIV
positive community there. It criticised the arrangements for scholarship
recipients, and the visa chaos. It deplored the state of the 'PWA lounge'.
Rightly: two years ago at Durban the one space exclusive to people with
HIV was an airy marquee in a beautiful garden. At Barcelona it was a gloomy
basement mausoleum.
But most importantly, the letter said: "The community has been excluded
from meaningful decision-making processes at every level." It ended
up by ironically echoing UNAIDS Director Peter Piot's opening speech:
"We must be involved [in] the decision-making process...THIS IS NOT
NEGOTIABLE!"
OK, so why must people with HIV be centrally involved in an event like
Barcelona? After all, these days we're not a tiny group of the despised,
battering against the walls of the world's denial. Hardly anyone disagrees
that defeating Aids is the 21st century's most urgent health priority.
What is it about the input of positive people that remains essential?
To answer that question, you need to ask another. What is it about the
experience of being HIV positive that is unique? Is it having a life-threatening
illness? No. Having to think about the consequences of the sex you have?
No, because everyone should.
No, it's the moment you swallow hard and tell your lover, your mum or
dad, or kid, that
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you have the virus. You wait to see whether they embrace you, whether they
