HIV/AIDS: Problems of empowerment

Debbie A. Lubis, Contributor, Jakarta

Perhaps it was breathtaking for people to see the photo exhibition of Odha (Indonesian acronym for people living with HIV/AIDS) by the Bali-based photographer Rio Helmi at the legislature; many have heard about HIV/AIDS but they have not "seen" it up close and personal. The courageous people living with HIV/AIDS have put a face on the statistics and have helped people realize that the epidemic happens to real people.

By coming forward in the exhibit from Feb. 17 to 21, those Odha have tried to wake up the government and policy makers to the reality of HIV/AIDS and coerce them to take up a battle against the epidemic as a national priority. Their act has surely also encouraged others with HIV/AIDS to later share their stories with the public, although perhaps not many would be as brave as they are.

At the launch of the exhibition, representatives of the 15 Odha who were profiled told hundreds of the invitees, including high profile politicians, representatives of donor agencies, AIDS activists and the press that they wanted to be involved in the display in a bid to support public advocacy to fight the stigma and discrimination against them.

This awareness campaign, however, failed to give legal protection to their individual rights. The "informed consent" agreement that they signed before their pictures were taken has placed them as objects of the program, not as subjects as regulated by principles of Greater Involvement of People Living with HIV/AIDS (GIPA) suggested by the World Health Organization (WHO).

The six points of the informed consent signed by the above participants demonstrates that there is not an equal position before the law between them and the photographer or the project authorities, making them vulnerable to exploitation and violation of their rights.

Those points are: 1. The participant agrees that his pictures will be taken by the photographer and that he does it voluntarily without any fees. The photos may be printed in any kind of media and their copyrights belong to the photographers. 2. The photos can be utilized to support non-profit HIV/AIDS public advocacy programs.

3. The photos can be utilized for any activities including photo exhibitions, websites and printed publications as long as the activities do not conflict with the second point.

4. The photographer may reuse any photos without asking for further permission of the participant.

5. The signed agreement cannot be revoked by anyone.

6. The photos can be taken in the form of: (participants choose one by circling A or B) A. Vivid facial photos B. Does not showing the face clearly. This is accompanied with a note stating that the photographer will try his best not to reveal the model's identity but cannot guarantee that this will be accomplished.

Despite its apparent clarity, such informed consent agreements do not provide information about the real purpose of the project, the project organizers, the places that the photos would be displayed, the project costs, the time frame of the photos' usage, in what kinds of media and in how many copies the photos would be printed nor the inclusion of texts on the participant's profile.

As they have signed the "agreement" the participant has no further entitlement in the case of the photographer or the project authority wanting to publish the photographs in a book or display them in the name of public advocacy.

Lack of comprehensiveness in the informed consent deal has meant that the participants have little say in the decision to print their pictures on a canvas of 2.5 by 1.8 meters and in CDs, accompanied with a photo caption and text on their profile, showing the most private scenes of their lives.

The texts, written by a senior journalist from a leading newspaper, go further into details on the Odha's historical background, in some cases drug addicts, sexual workers and their sexual orientation. They also disclose personal data like name, age, birthday, place of origin, the family's condition and details of their sexual life.

Accompanying the photo exhibit with results of in-depth interviews is quite ideal but the revelation of the participants' private lives must be done with the consent of the person himself. In this case, the participants never signed any informed consent for interviews.

The journalist said participants let him record the interview while he took notes, so it was obvious that they agreed to be interviewed. He said that he would have kept anything off the record if they had said so. But one participant said she trusted the journalist so much so that she felt he would have known which parts were "appropriate" to be publicized.

Through the revelation of the participants' past lives, the texts, without shedding light on the complexity of the contagion, make the people view HIV/AIDS as an issue related to the sex industry and drug use almost exclusively. The texts would not likely help elicit responses from officials, policymakers, activists or citizens who wish to know more about the epidemic to combat complacency, challenge stigmatization, overcome the tyranny of silence and promote more caring attitudes.

Apparently, too, this campaign will lead many to assume they are safe from HIV simply because they do not belong to "high-risk groups" since the stories revealed that participants earlier had had sex with multiple partners, used drugs and got involved in prostitution.

The event, which is supposed to show that HIV/AIDS infected people are just like anybody else who simply want to live their lives, so that people must give them spirit and allow them dignity in their battle for health, probably actually strengthens the stigmatization against people with HIV.

However, not many Odha dare to voice their thoughts to promote their rights since they are still worried that such a move would taint the relationship between them and AIDS organizations that have provided technical and financial aid.

Yet they are no different from anybody else. In a discussion on World AIDS day last year, noted lawyer Todung Mulya Lubis said that people with HIV/AIDS, just like any other citizen, are protected by regulations from discriminative treatment. He said that people who intentionally reveal the identity of Odha to damage their reputation could face a nine-month jail term, based the Criminal Code. If the publication is made in the form of a written disclosure or photograph, they may be sentenced to 18 months in prison.

The participants seemed powerless when event organizers distributed some CDs of their photos and profiles to the press. Organizers also said that such photos would also be displayed in public places throughout the country, including train stations.

"I'm really disappointed. I never expected that to happen. I gave my permission because the pictures would be displayed at the legislature (DPR) and the website. My friends would not know about me because they do not have access to the DPR or the internet. But now ... I'm afraid my friends will see my pictures at malls because they like to hang around there," one of the Odha said.

He has not dared to go home since the exhibition started because his family does not know about the photo project.