Catherine Miller

Klára proudly shows me her handiwork. Carefully embroidered kittens and blushing milkmaids and the beginnings of a tablecloth which will be her next project. As we talk Monika arrives and sits smoking sulkily, looking out over the summer terrace of the house in the Karlín district of Prague as sounds of a ballet class drift from the other side of the courtyard. The two girls banter and share in-jokes and there is the atmosphere of a girls' boarding school during the summer holidays.

From outward appearances, it might be hard to guess that this is Dům světla (The Lighthouse), an asylum centre for victims of HIV and AIDS, or that these two women are here because, after becoming infected by HIV, they were left with nowhere else to go. Only on closer inspection do you notice that the girlish hijinks are a little forced, the giggles too nervous and the banter pitched too loudly. They seem torn between trying desperately to ignore and yet come to terms with an illness whose significance they barely grasp.

Eighteen-year-old Klára was infected with the virus by her long-term boyfriend and father of her child. It was her mother who pushed her to go for testing, "I thought, Mum doesn't believe me so I'll show her I don't have it," she remembers with pathos. Her story is confused and contradictory, and she recites it as though it were a film script. "I ask, why me? Why me in particular when I still have my life in front of me?" she says, though she seems capable neither of asking nor answering such a question.

Monika, ten years her senior, is more hard-nosed than her comrade but adopts the role of the tart with a heart. From the North Bohemian borderlands, she plied what she calls, with incongruous coyness, the "oldest profession." "Clients used to stop me and ask, 'Mit Gumi oder ohne Gumi' and I said with a condom, otherwise it's no go. I quickly learnt to explain in German why it had to be like that." With six children, all in state-run homes and now with the HIV virus herself, it is hard however to believe that Monika was really as scrupulous as she insists.

Asylum from intolerance

Were it not for Dům světla, Monika thinks she would now be sleeping under a bridge. But while the centre provides patients with social care and a wide-range of treatments, both physical and psychological, it is clear that they gain most from the sense of solidarity. The two girls rely on one another to keep their minds off the constant presence of their illness. "If I was here on my own, I would go mad," says Klára. "Once I fell out with Monika and I was in my room on my own... I had such terrible thoughts, I realized what a bad state I was in."

The fact that a sense of community and trust has grown up in the house, demonstrates the rapid progress it has made over the three months since its opening. When I visited the centre this summer, Mirek, already in the advanced stages of his illness, was the only patient there and made his way painfully slowly through the deserted rooms alone. He was pessimistic about the prospects for the centre, saying that people were already too isolated and worn out with their illness to come. Though Dům světla has come to life more quickly than Mirek might have predicted, one house is clearly not able to solve all the problems of AIDS in Czech society.

"No-one knows about [my illness]," says Klára, "only my family and my sister. It would be unfair towards my parents. They have friends and are respected and if people found out about it they would hold it against them and make some kind of witch out of me."

Secrecy and isolation are the main features of AIDS victims' lives in the Czech Republic. At present, none of those outside the capital has made their illness public and they continue to live anonymously. Jiří Hromada, of the gay organization SOHO is quick to point out, however, that this kind of prejudice is not just a Czech phenomenon, but is symptomatic of all small and conservative societies, where the net-curtains twitch and everyone knows each other's business.

Intolerance, in this case, cannot be excused with ignorance. Since 1985, when the Czechoslovak Communist regime finally decided to recognize the existence of this "anti-Socialist" disease, there have been strong education and prevention campaigns, testing has been free and anonymous and surveys show that the level of awareness in the population is high. Yet even now, almost fifteen years on, a friend of mine was recently warned by relatives not to go to a certain swimming pool, because "foreigners go there and you could catch AIDS." 20% of Czechs are reported to not want an HIV positive person as their neighbour and Mirek says that even his social workers refuse to drink from the same cups as him.

Paradoxically, it is the success of the preventative campaigns which has indirectly led to the stigmatization of AIDS and HIV victims. Up to the middle of this year, there were only 417 detected cases of the disease in the Czech Republic. These admirably low numbers, in comparison with the alarming infection rate in nearby countries such as the Ukraine (around 40,000), have a bad social side-effect for those who do become infected. Very few Czechs ever come into direct contact with people affected by the disease, and so the fear of the unknown persists.

Promiscuous elders

Opinion is divided along generational lines, with the under-30s, educated in the post-Communist era, approaching the issue far more openly. Jiří Hromada believes that Communism simplified people's way of thinking and that those who grew up under the regime find it difficult to accept anything new - be it computers or a disease - and continue to see AIDS as a punishment for homosexuality or other alternative lifestyles.

It is this apparently conservative group in society, which may, ultimately, blot the Czech Republic's good record in dealing with AIDS. Middle-aged Czechs persist in the "it's nothing to do with me" attitude, yet their extra-marital liaisons and Christmas party scandals may end up sending the statistics soaring. Research carried out by Lidové noviny and the Sofres-Factum agency at the beginning of this year, shows that while 60% of the adult population does not think AIDS is a problem and only 3% of 40- to 45-year-olds use condoms regularly, 67% of teenagers express fear of infection by HIV and 64% use condoms as a matter of course. Young Czechs are shown in the research to be much more monogamous and sexually responsible than their supposed elders and betters.

But while the country waits for these open-minded young men and women to grow up, the current Czech AIDS victims have little hope of coming in from the margins of society. For now, it seems, they will stay tucked away in their little house in Karlín, sewing tablecloths, giggling together and finding a little light in the darkness.

Catherine Miller, 10 January 1999

Some parts of this article appeared in the 1 December 1999 edition of The Prague Post.

Dům světla is open to all, provides free testing for HIV and can arrange consultations in a number of languages.

Confidential line: 02/24 81 07 02
Office: 02/24 81 42 84

Or write to:

Dům světla
Malého 3
Praha 8
Karlín