HIV/AIDS: Problems of empowerment

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.