Who should speak for people living with HIV/AIDS?

People uninfected by HIV are, for the first time ever, being allowed to assume paid leadership positions in the National Association of People Living with AIDS.

Until recently, NAPWA has had a policy of hiring only HIV positive employees. However, NAPWA has been re-thinking this policy on the grounds that each and every South African is affected by the disease.

NAPWA is one of many organisations representing people living with HIV/AIDS (PWAs), although it is the only organisation to claim national representation. It has a critical role to play in lobbying for the rights of PWAs and in providing support to all those infected and affected by the disease.

In the past, having an HIV positive director was seen to be essential for making HIV/AIDS visible, giving the disease a “face” and combating the widespread social denial of the reality of HIV/AIDS. Having an HIV positive director also provided a positive role-model of someone who had disclosed his or her HIV status, and was living a full and productive life with HIV.

However, the thinking in the organisation has shifted. Some feel that limiting NAPWA’€™s membership to PWAs has implicitly created an exclusionary identity whereby those who are not HIV positive are excluded from the struggle for prevention, care and support. By including people regardless of their HIV status, NAPWA will promote the view that everyone can and should be involved in AIDS activism.

“We came to realize that we are discriminating against non-PWAs”, says Vilas Tyeku, the national chairperson of NAPWA. “We get a lot of support from people who are living with AIDS at heart, so why not include them? We are now calling NAPWA the national association of people infected and affected with AIDS. AIDS affects everyone who is living.”

The present interim director of NAPWA, Nkululeko Nxesi, is not HIV positive. “By employing a negative person, NAPWA is saying it’€™s a societal problem, not just an issue for PWAs,” says Nxesi.

According to Nxesi, what is important is whether a person has a passion for dealing with HIV/AIDS, not whether a person is or isn’€™t infected.

However, there is another important reason for this shift in perspective.

Napwa’€™s previous director, Peter Busse resigned last year. Unfortunately, Busse had been ill frequently over the previous few months. “If you confine NAPWA to PWA’€™s you will always have a succession problem at a staff and committee level,” says Busse.

“PWAs are likely to become ill so that the hand-over to the next person becomes difficult,” agrees Tyeku.

But hiring HIV negative employees on the grounds that HIV positive people inevitably become sick is the sort of discriminatory logic that feeds arguments for pre-employment testing and discrimination against PWAs in the workplace.

This is clearly not the sort of argument that NAPWA wants to entertain. Instead, organisational management and planning processes should be put in place to allow for a smoother staff turnover.

What NAPWA needs now, says Morna Cornel, Director of the AIDS Consortium, is the sort of strong national leadership that will strengthen its organisational structures and make the organisation less reliant on a few key individuals in the long term.

When the permanent position for the director is advertised in March this year, it therefore seems likely that the decision regarding an incumbent will be based on the individual’€™s skills rather than on his or her HIV status alone.

“It would be ideal to have NAPWA run by an HIV positive person but what is essential is that it is run by a competant person,” says Cornel. “And it’€™s such a small pool of people who are living openly with HIV that you are looking at a very small group of candidates to whom preference should be given.”

Treatment Action Campaign member and AIDS activist, Zackie Achmat, is HIV positive and is outspoken in his criticism of the organisation. “The central issue for NAPWA is not the HIV status of its director, but its lack of vision, programme and political courage,” he says.

He says the board of NAPWA includes HIV negative members, but this has not changed life for people living with HIV/AIDS in the country. “It is not clear that an HIV negative director will change this position now,” Achmat adds.

However, for NAPWA, the continuing distinction between HIV positive and HIV negative people is cause for concern. In its view, this kind of thinking runs the risk of feeding into the very prejudice and stigma which it hopes to overcome.

“You cannot normalize the disease if you create or re-enforce categories of difference,” says Mary Crewe, Director of the Centre for the Study of AIDS at the University of Pretoria.

In France, the recent nomination of Emmanuelle Cosse, an HIV negative and heterosexual woman, as President of the AIDS activist organisation, ACT-UP Paris, caused an initial stir and has already changed people’€™s perception of who the stakeholders are in AIDS activism.

“People’€™s gut feeling is that an HIV positive person must run an organisation for HIV positive people much like a woman must run a woman’€™s organisation,” says Peter Busse.

“But PWA organisations should open up at an appropriate time. It’€™s just that people are perhaps stuck in the old paradigm. If you look at the history of PWA organisations internationally, they start off closed to give PWAs confidentiality and a sense of safety that their status won’€™t be disclosed. Then, over time, it opens up, which is a positive thing.”

But the question of whether an HIV negative person can ever understand the issues in the same way remains. Mark Heywood of the AIDS Law Project is not convinced.

“I think NAPWA should be led by a person with AIDS. People with HIV have a perspective, a sense of urgency and necessity that, like it or not, HIV negative people, including close friends and family, do not have,” says Heywood. – health-e news agency.

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