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    Suzana's soft voice, and shy personality belie the inner strength and perseverance she brings to her fight for the rights of people suffering from HIV/AIDS in her native Indonesia (click for map). Suzana found out in 1995 that she was HIV positive, after she went to hospital and doctors tested her without her consent. She was sent home with out any information about her deadly virus or counselling to help her deal with the emotional upheaval, which followed."At first I was very angry and depressed, and then I lost all hope. I was afraid of the discrimination and the stigma I was going to face, being a person with HIV," recalls Suzana. Although she has been infected for 6 years, Suzana has never received any medication which its too expensive for 95% of HIV/AIDS patients in Indonesia. "I don't want to do tragic things, like sell my car or my house for maybe 6 months of medication. Because, what happens next? I will have no more medicine, as well as no car or house. Maybe when I get really sick, and really scared of death, maybe then I will do that too." Suzana began channeling the anger and hopelessness she felt inside into helping others with the virus. "I decided that I didn't want to live the few years I had left, being so sad. I wanted to be happy and I still want to be happy," says Suzana. She then started contacting HIV/AIDS organizations around the world. "I felt very lucky because I spoke English, and could translate all the information I received about HIV and AIDS," says Suzana. "I also began thinking about the other AIDS patients in my community. Were they feeling as scared as I felt?" Suzana feels strongly about the rights of other AIDS victims in Indonesia. "We should know about our illness and be given information on nutrition, so that we can live with our sickness for as long as possible. Patients should also be free to talk about how they feel." Suzana began writing brochures about how to live with HIV and AIDS and distributed them along with her telephone number to local doctors and hospitals. She told them, "If you have HIV positive people, I want to meet them." This was the start of the Spiritia Foundation, which is now active in every province of Indonesia. It trains counsellors to help HIV/AIDS patients deal with the sadness and confusion surrounding this disease. "To solve this problem we have to talk, not just to each other, but also to the government and to lawmakers, and to non-governmental agencies," says Suzana. Currently, her organization is funded by AusAID, the Australian Agency for International Development which gave the Spiritia Foundation $150,000 for 2 years. Suzana hopes to find additional funds so that she can reach more HIV/AIDS victims. The Spiritia Foundation, a support group for HIV positive people, also focuses on advocacy and human rights. It is the only one of its kind in all of Indonesia. Being at the United Nations in New York has given Suzana hope. "Sometimes, you start to feel hopeless. There are so many victims, and not enough money or medicine to help them all. But being here, and meeting so many other people who are fighting for the same cause as I am, gives me energy and inspires me." Suzana believes there is too much silence about the problem in Indonesia. "This Special Session is so important because it is going to hold my government, as well as all the governments represented here, accountable for what they say at the UN in the battle against AIDS and HIV." Sometimes Suzana thinks about retiring from her work in the AIDS battle but says, "When I want to give up, I think I can't. I am healthy now, so I must work for progress before I get too sick." Suzana treats herself by keeping a positive attitude and says that it is also important for her to know her limits. Although all she has done makes her seem completely limitless. Her husband and adopted 1 year-old baby boy inspire her. Both are HIV negative. FIND OUT MORE about how the UN and its partners are fighting to stop the spread of HIV/AIDS. Click on the links next to Suzana'a photo. Photo credit: Robin Bowman/Matrix |
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