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HIV-Positive Nurse Empowered by Speaking about Pandemic By Suvendrini Kakuchi TOKIO - Whenever Shoko Kitayama speaks about her experiences as a person living with HIV, her audience listens enraptured. The people in the crowd, this time a group of nurses, alternately clap or burst into laughter as the slender, pale woman relates with a dash of humour how she overcame the fear and pain she felt when she first found out she had the virus that causes AID. Kitayama,
a 34-year-old health worker, found out she had HIV when she was
working as a volunteer in Africa years ago. "Every word she (Kitayama) spoke was effective not only because it revealed her challenging spirit but also because it helps us to understand the needs of patients better and work toward creating a better environment for HIV patients," she added. Kitayama, not her real name, is a public nurse herself and is one of a handful of women who have decided to go public about her HIV status in a society where speaking out on taboo issues - especially as a woman - is not easy. She
was working in a public health office in Japan, when she decided
to go to Tanzania as a volunteer in 1994. She worked as a nutritionist
in Kilosa, a village where malnutrition was a pressing problem for
residents. "That (return) was a hard blow," she recalls. "I loved Africa and the people. I learned a lot about the preciousness of life in the village because people are not rich and as commercial- oriented as the Japanese." But today Kitayama, who lives in Kyoto in western Japan, leads an equally busy life working as a community nurse and spending much of her spare time giving lectures on her positive approach to life with HIV. She also helps out with an AIDS prevention panel at the Health and Welfare Ministry, and has finished a book that is a compilation of her experiences. She says she is keen to educate the Japanese on HIV prevention and also to teach people to not discriminate against those with the virus, as they have rights and the same feelings as everyone else. "My message is aimed at mostly young women who face the highest risk in Japan. I want more women to protect themselves by being aware that HIV is not only a foreign concern and also raising a consciousness about the disease by saying that it could affect anyone of them," she says. "Sex is after all not something to hide or be embarrassed about, because it is part of everyday life," she continues. As a person living with HIV, Kitayama can tell others about life from the point of view of those who are HIV-positive. The first doctor she consulted in Japan asked her to "be quiet" about her HIV status since she was a public servant. Her (Japanese) boyfriend broke up with her, saying he could not consider marrying her one day because of her HIV status. She is helping to lobby the government to enact policies that will allow easier access to HIV testing, especially in rural areas where public centres are often closed in the evenings and also to protect the privacy of testers better. "Businessmen and office ladies need testing but will not be able to go to the testing centres if these places are only opened during lunch hour, or if, as is small communities, feel they could easily be recognised at the public health centres," she explains. Analysts say making these facilities accessible is key in Japan, where the extent of the pandemic is greater than what is commonly known in a country of some 120 million people. Government officials say the registered number of people with HIV is 1,598, but they say that 7,000 is closer to reality. In 1999, Japanese officials released a report pointing out that many people do not take HIV tests because they are unaware they could be infected in the first place. Others learn about being positive after a considerable delay that could have been crucial in medical treatment. Chizuko Ikegami, who runs Positive Living and Community Environment (PLACE) Tokyo, a community group that works with women with HIV and also offers sex education to women, explains that the government has yet to keep pace with changing sexual behaviour in Japan. PLACE Tokyo has also been inviting Kitayama to talk to the general public in order to raise awareness about the disease among women. "Kitayama as a patient herself offers the most effective message. By presenting a positive image, she is empowering patients and herself as a woman," says Ikegami. Indeed, people with HIV here often lead lonely lives, isolated from friends and relatives and even in hospitals supposed to care for them. But perhaps the biggest sign of society's discriminatory attitude is the fact that despite her boldness in speaking out, Kitayama uses a pseudonym when she campaigns. This, she explains, is because she does not want to lose her job. "I have told my parents (about HIV), which was a particularly difficult thing to do. But I do not want my boss to know because it could lead to him asking me to leave," she says. Kitayama now carries with her an official document that recognises her as a handicapped person. Her health insurance also covers medication and the services of a counselor who is her chief advisor and confidant. She believes she cannot reverse the clock, but has found a way of using her HIV status to making her life as productive and relevant as possible. Mused Kitayama: "For the first time in my life I feel that in spite of my infection - or maybe because of HIV - I have been able to lead a life that does not bother about small things but strives all the time to lead a fulfilling life." |
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