Govt urged to empower HIV positive people
Debbie A. Lubis, The Jakarta Post, Jakarta
AIDS activists are urging the government and the public to empower HIV positive people to take control of their lives.
Chris W. Green, the field manager of the Spiritia Foundation, which works with those with HIV/AIDS, said the HIV positive had skills and a capacity that could be explored to help HIV/AIDS prevention programs.
"They can become a subject who can actively campaign instead of being an object whose personal background will always be exposed," he told The Jakarta Post.
Retno Windrati, the community support coordinator at the Pelita Ilmu Foundation, said people living with HIV often refused to share their experiences in public.
"They don't mind talking about the dissemination of the virus, but not about their personal lives," she told the Post.
The involvement of HIV positive people has been difficult to realize because only a few of them are active in the AIDS prevention movement, she said.
She said an unsupportive environment and the vulnerable position of the HIV positive -- such as being afraid to reveal their identities for fear of losing their job or their friends -- prevented them from getting involved in the HIV/AIDS campaign.
To overcome the unsupportive environment and to address the fear of stigmatization, those with HIV, the government and society must collaborate with other parties, Green said.
His foundation attempts to create a confidential atmosphere for people living with HIV/AIDS to meet and to share their experiences living with the virus.
"Such meetings might be in groups, one-on-one, or by telephone, letter or e-mail," he said.
The foundation has also held twice annual meetings for people from around the country who are living with HIV/AIDS.
He said the meetings were also open to limited numbers of family members, partners, friends and caregivers of people with HIV/AIDS.
Green and Retno said that to put a human face on those with HIV, the country should provide access to care and support at the local level, and promote an objective and nondiscriminatory attitude among decision-makers and the public toward HIV/AIDS infected people.
The unfair treatment of people with HIV is not unusual. Forty- two HIV positive people interviewed by the foundation said they had been discriminated against by community members or health workers, Green said.
Sometimes the health workers also ask the families of HIV positive people to discriminate against them, he said.
"They separate their dining utensils, bathroom, bedsheet, bedroom and others. This is because they get misinformation," he said.
Retno said there was one case in which a hospital marked the bedsheets used by HIV positive people. And there are still families who isolate HIV positive family members, she said.
And sometimes media exposure can take its toll. A local newspaper in Sulawesi once published a photo of two HIV positive people who had just gotten married, and the couple was then chased out of their village, she said.
And in the West Java town of Krawang, she said, an HIV positive mother and her baby were almost expelled from the community.
"They only accepted the baby and the mother after our staff hugged the baby to show that it was not dangerous," she said.