Panos Institute - September 17-30, 1999
Geoffrey Denye Kalebbo

More tragically, South Africa's Gugu Dlamini, who æcame out' on television as HIV-positive last December was beaten to death in her hometown of KwaMashu Durban shortly afterwards.

As Dr David Miller, psycho-social advisor for the United Nations AIDS organisation UNAIDS, says, "stigma is a killer."

Millions of Africans living with HIV/AIDS are at risk of infecting their partners because of stigma associated with the disease, according to experts at the International Conference on AIDS and STDs in Africa (ICASA) which ended in Lusaka on Sept. 16.

Furthermore, a few may seek vengeance against a society which segregates against them, experts fear.

"Where there is stigma against people living with HIV/AIDS, they will go underground. They will be segregated. These people, underground, become more dangerous than the virus itself," the Commissioner for Health Services in Uganda, Dr Sam Okware, says.

Stigma discourages the "infected and affected" - people with HIV and their families - from seeking counselling.

"It is unfortunate that we are still hampered by our old enemy: stigma," UNAIDS Executive Director Dr. Peter Piot told conference delegates. "Eliminating stigma must be central. It is about breaking silence, and breaking silence means breaking secrecy, not confidentiality, about AIDS."

It is ironic, however, that at the conference, the stall for people living with AIDS was tucked away in a secluded corner of the Agricultural Show grounds, at least two km from the conference venue, the Mulungushi International Conference Centre.

"There is stigma here," Aulora, a journalist from Zimbabwe, joked.

"This looks like we are in quarantine," Lynde Francis, a Zimbabwean woman living with HIV/AIDS lamented. "The conference organisers did not even want us to present any paper at the conference, yet we feel so much at the heart of this problem."

Francis said they would have been left out of the conference programmes had it not been for the intervention of Piot.

"Stigma causes negative psychological stressful situations. This will result in a negative impact in the outreach programmes," a Ugandan doctor Esther Sebowa told Panos Features at the ICASA this week.

UNAIDS' Miller added that disclosure of HIV status by women has led to violence against them. "Many of the women are thrown out of their homes, abandoned or beaten, as their partners respond to the community sense of the disease and such disclosure."

He concurred that stigma prevents people from taking control of their lives through counselling. "If they do not go for counselling, then we have lost valuable opportunities to prevent further transmission.

"It is possible the people of KwaMashu felt Gugu had ashamed them. Others could have felt that she is going to spread the disease," said a South African delegate.

To contract HIV/AIDS seems to carry shame with it. HIV/AIDS is predominantly transmitted by heterosexual means. Talking about sex is taboo in most African cultures, and catching AIDS carries the label of promiscuity with it. That usually translates as stigma and shame.

Brigitte Syamalevwe, a person living with HIV in Zambia, is comparatively lucky.

"What has given me courage is the support I have received from my friends. I had support from my community, my special doctor," she said. Acceptance and understanding by those around her seems to give her the drive to live on positively.

Talking to others has taught Brigitte how to keep healthy. She has learnt to keep an eye on her diet and, on the advice of her doctor, to avoid visiting friends who have infections that could compromise her health.

Since she went public, other women living with AIDS have found in her a friend with whom to share pain.

She told of a letter she received from a friend living with AIDS. The letter reads, "I have just told my children. They have reacted differently. What should I do?"

When people living with HIV/AIDS overcome the stigma that surrounds their health, they learn to face prejudice and fear.

"Some people living with HIV/AIDS feel everybody around them blames them for their condition," Muchindu, a Zambian living with AIDS, said. "They too develop stigma towards themselves, the disease and other people around. They generate wrath against society, and decide the best way to punish society is to deliberately spread the virus."

The result of perceived stigma could be for the person to abandon safer sex measures such as condom use. But this attitude is changing.

"For fear of contracting new strains of the virus, I insist on using the condom," said Jeremiah Mulumba, Lusaka chairperson of Network of Zambians Living With AIDS.

Mulumba believes that unless HIV/AIDS is given a human face, it will be difficult to shake off the stigma. "When I told my parents that I wanted to go public about my status, they refused me to. When I did, they literally disowned me," he said.

Today, Mulumba is able to share experiences and recent research findings with other affected people. He says he is no longer scared about tomorrow because he considers HIV/AIDS as a terminal illness - no different from cancer.

But for Romeo Tshuma of Zimbabwe, testing HIV positive meant a double stigma û he is gay and homosexuality is illegal in Zimbabwe. "I am now forced to make my status public, but the stigma against us is just unbearable. I want to be granted freedom to network with gays who have tested HIV/AIDS positive," he pleaded.

The stigma that struck Sony Kalenda attacked a vulnerable point: his children. "My neighbours did not want my children to play with their children. My children felt rejected and started getting withdrawn," he said.

Kalenda added: "When I appeared on a TV programme showing people living with HIV/AIDS, my children's schoolmates teased them about it. But I kept telling my children that that is my condition and they should accept it. My fear, however, is that my children might have inhibitions that could affect their behaviour in future."

Social workers and health workers at the conference agreed that stigma against people living with HIV/AIDS can only be tackled by spreading knowledge about the disease.

Ugandan Okware said education is central in the fight against AIDS. "We do not have drugs for AIDS. What then would you say has reversed the infection rates in Uganda? Education. It is high time medics accept that HIV/AIDS is not merely a medical problem," he said.

The achievements of Uganda, Senegal, and Thailand reveal that a broader, community-based approach works.

Thailand started community mobilisation at a very early stage in its HIV/AIDS epidemic. The process benefited from the political support of ministers and officials from the highest level of government. It involved acknowledging the importance of condom distribution and increased condom use. The combination helped check new infections from soaring heights in the 1980's to an impressive decline in the 90's.

It was dubbed the "social vaccine."

The much-promised presence of many African heads of state failed to materialise at the conference, but that does not mean, said Miller, that the 11th ICASA should quietly wither into history.

If his wishes come true, the conference will be a springboard in accelerating anti-stigma activity. Only then, said activists, will the death and pain of the likes of Gugu Dlamini find meaning.
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