CARELESS WHISPERS
SPECIAL KAY’E
Two guys are at a party one night when a third they don’t
know comes over. They stand in amazement, as he casually tells them that a
woman on the other side of the room has just told him that they are both HIV
positive. He doesn’t believe it and wants to know if it’s true?
The pair look over at the woman the guy’s pointing at and indeed, she’s
someone they know. She’s a fellow service user at their local HIV organisation.
They’ve seen her at several support group meetings. The chaps ignore
the question, decide against approaching the woman and leave the party immediately.
The following week, they report the woman to the organisation for breaching
their confidentiality.
But what’s the organisation to do? While services normally guarantee
a service user’s confidentiality in the sense that the service won’t
divulge information about them to a third party without their express permission,
they’re not really in a position to safeguard service users from each
other. If a member of staff, whether paid or unpaid, is alleged to have breached
a service user’s confidentiality, there are usually procedures for dealing
with this. But can an organisation really be expected to investigate and ‘prosecute’
an alleged breach that occurred out in the community where no staff member
was involved?
Such incidents, while real, are at best a case of ‘he said, she said’.
Even if sanctions were considered, could they really be without evidence?
Without witnesses? And what form would such sanctions take, exactly? Withdrawal
of services from the alleged perpetrator? Banning them from attending future
support groups?
The point I’m trying to make is that while organisations can stress
the importance of confidentiality to individuals and always do, it’s
really left to us to decide how we’re going to treat each other.
And that’s where the problem lies. I doubt there’s anyone out
there living with HIV who doesn’t appreciate how important confidentiality
is, with all the stigmatisation and discrimination that still abounds. Even
those who have reached a point where they feel they can be totally open about
their status must remember a time when they couldn’t. If we are so careful
with our own confidentiality (at least when it matters to us), why can’t
we be equally careful with the confidentiality of others?
I’ve heard theories. The most obvious is pure malicious intent: if I
don’t like a particular fellow service user, or we dated at some point
and then broke up, or he or she dated my brother, sister, nephew or niece
and cheated on him or her or whatever, the easiest way to hurt this person
would be to tell the world about their HIV status.
Then, apparently, there are those who, after feeling able to tell others about
their own status, feel a need to show that there are many others out there
who are just like them and begin pointing out others whom they know to be
positive. Finally, there are those who are just naturally careless and thoughtless
and simply talk too much.
Whatever the motivation the result is the same: people begin to view each
other with suspicion when they should be offering each other support. Even
worse, people start thinking that attending support groups is just too risky
and stay at home in isolation instead. In London, where there are more support
groups for black people than I can recall, this might not present such a problem.
It’s always possible, (though maybe unlikely), that a person will be
able to go to a support group and not see anyone he or she knows. It might
be the same in other large cities like Manchester and Birmingham, which also
have huge black communities.
Here in Leeds however, where the black community is small to begin with and
almost everyone lives in the same neighbourhood, goes to the same bars, clubs
and parties and are dating (or have dated) each other or each other’s
friend or relative, it’s much trickier.
It’s my opinion, that this is something that needs to be addressed in
some way. Surely it can’t go on. If it does, a considerable number of
people are going to lose out on vital support services. Only one of the two
chaps at the start of this piece still attends his local support group meetings,
at least from time to time. The other has completely disappeared.
Meanwhile, whether it’s due to guilt (I hear she was “named and
shamed” at a subsequent meeting) or due to totally unrelated issues,
the woman in the story no longer attends. Some might say it serves her right.
Personally, I feel it’s just as tragic.
