| Fighting
against Stigma, Culture and Discrimination
By Katy Salmon NAIROBI - living with the illnesses caused by HIV or with AIDS is hard enough. But when one adds hostility and discrimination, the burden of facing the life-threatening illness becomes far greater. "People point fingers at me in the street, in church. They whisper. Neighbours tell my visitors: ÔYou know she has AIDS, she'll give it to you,'" says Patricia Asero, a 33 year-old mother, widow and HIV/AIDS counsellor. Asero was just 22 when she found out that she was HIV positive. Asero is forgiving. She believes that it is fear that makes people treat her so badly. "They're scared of the disease, of catching it themselves," she says. But the stigma and resulting discrimination that people with HIV or AIDS meet is not just the result of ignorance. Shockingly, Asero says, the worst treatment has come from medical practitioners themselves. "In one Nairobi hospital, they have a separate bathroom for HIV positive people. I went to use the normal bathroom and the nurse came and dragged me out," she recalls. "There were many women in there and she started shouting at me. It was so humiliating." Eunice Odongo, another HIV positive AIDS counsellor, works for Women Fighting AIDS in Kenya (WOFAK). "I received a client who was really weeping. Her daughter is sick and she was told by the nurse in hospital that they should not share any cups with her at home," she says. "I explained to her that you can't catch HIV by sharing cutlery or food." It is 20 years since the first cases of AIDS were reported on in the United States. AIDS has killed close to 22 million people worldwide. While millions of Africans have died, people's attitudes towards the disease have barely changed. "Many people still believe that it's only immoral people that get AIDS," says Odongo. She says people are ashamed to be associated with AIDS. "WOFAK's field station in Kayole (Nairobi's Eastlands) is stigmatised. If you are seen entering that office, people believe you are HIV positive.'' Odongo finds the language that people use offensive as well. "The media call us 'victims' or 'sufferers'. People have to be sensitised that these are people living with HIV, they are not victims. They are not statistics. We are people." But once someone's positive HIV status is known, even close relations may be the first ones to cast out or discriminate against those with the virus. For example, one Kenyan woman won a landmark ruling last year, after her husband had forced her to move into the servant's quarters, because she was HIV positive. The Court of Appeal ruled in her favour and he was forced to take her back in. The Federation of Women Lawyers for Kenya is currently handling four cases of land-grabbing or disinheritance by relatives of people living with HIV or with AIDS. "Because the head of the family has been infected, people come to grab land even before the person has died," says Odongo. "They believe you do not deserve this land, because you are going to die and your wife will go too one day." Both Odongo and Asero are Luos, Kenya's third largest ethnic group. The Luos' practice of wife inheritance, is a major contributor to the spread of HIV among women. When a woman's husband dies, she must be 'cleansed' and 'inherited' by another man. For the cleansing ritual to work, a condom cannot be used. But women like Odongo are fighting against such cultural practices. "When my husband died, I refused to be inherited. I said my husband had died of AIDS and I was HIV positive," says Odongo. "There was a huge crowd and they were shocked. Some men said I was lying, that I didn't want to be inherited, because I have a job in Nairobi and that I thought the man would use all my money." In Luo culture, a woman who is not inherited is cursed. She is not allowed to fetch water or enter people's houses for fear that her bad luck will be passed on. Odongo was not too worried about these old taboos. "But for women who live upcountry (in the rural areas), they are under a lot of pressure to agree. They have no choice," she explains. "So many people are dying, some of these men inherit two or three wives." In the city, the biggest hurdle facing women and men living with HIV or living with AIDS is staying employed. Odongo says most people are afraid to tell their employers about their HIV status for fear of losing their jobs. Asero says one of her clients, who worked in a hotel, was fired when his boss found out he was infected. "The head of the counselling centre went to the hotel and told his manager: 'Do you check your customers for HIV? How do you know they aren't a risk to your staff?'" The man was re-instated. Odongo says that some employers try to find out the HIV-status of their pregnant female staff by contacting ante-natal clinics. "They're worried they'll have to start paying medical bills," she says. The belief that HIV positive people are not fit for work is not just an insult, but it also leaves them destitute. The Kenya Federation of Employers (KFE) is taking a lead to end discrimination in the workplace. KFE's revised Code of Conduct says people living with HIV/ AIDS - now estimated at 2 million Kenyans - should not be denied training, promotion, medical cover or insurance. But the KFE still has a battle on its hands in trying to get employers and health funds to devise schemes to help people with the cost of drugs. Gershon Konditi, KFE's deputy executive director, says most company health policies are inadequate when it comes to looking after HIV positive staff. "Employers have medical schemes for ordinary diseases, but the National Hospital Insurance Fund only covers hospitalisation. They will not pay for anti-retroviral drugs." Konditi believes that -assuming that the price of drugs is brought down so that a reasonable number of people can afford them- we will see more cost sharing schemes in the future. "Employers cannot accept full responsibility. The government will have to come in and other stakeholders in public health. Patients may also have to pay a percentage," he says. Odongo believes employers will soon realise that it pays to keep their HIV positive staff healthy, rather than let them die. "These are people who have capacity to run the organisation. If they leave them to die, the organisation might not do well," she says. WOFAK is campaigning for greater involvement of people living with HIV/AIDS in the workplace. "The voice of people living with AIDS makes a difference, because we are actually part of the solution. In every community we have people living with HIV or with AIDS. They are active people. Many do not even know their status," says Odongo. |
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