Breaking Down the Stigma of HIV/AIDS Through Football in Indonesia
What do an Indonesian soap opera and a drug rehabilitation center for HIV positive individuals have in common? First, there’s the name: Rumah Cemara, or “House of Pine Trees” in English. Second, and most importantly, they both provide important lessons on how people from different backgrounds can come together and overcome differences and obstacles.
“Rumah Cemara,” a very popular Indonesian soap opera in the 1990s, profiled the lives of several families from different races, religions, and backgrounds who lived together in a boarding house. Each episode highlighted a problem that, in the end, would be resolved in a way that the family members could live with their differences.
With five other recovering drug addicts, Ginan Koesmayadi founded Rumah Cemara in 2003, initially as a drug rehabilitation center. Shortly after opening the center, Koesmayadi learned that he and some of the other center members were HIV positive. It was then that they decided to transform the center into a safe place for the HIV positive community, providing them with a range of needed support, and educating the general public about the facts of living with HIV.
The incidence of HIV/AIDS in Indonesia is largely driven by its 3.6 million injection drug users. Rumah Cemara’s services work to address addiction and HIV/AIDS, with the belief that by controlling HIV within the most at-risk communities of drug users, sex workers, and prisoners, they can prevent HIV from becoming a more widespread epidemic. Currently, 320,000 Indonesians are living with HIV/AIDS, although that number is likely much higher, as many Indonesians are afraid to get tested. In West Java alone, where Rumah Cemara is based, there are 5,191 reported cases of HIV/AIDS, with more realistic estimates at 130,000.
Koesmayadi became one of the first people to come forward publicly to declare his HIV status on Indonesian television and throughout the national media. In 2003, this was an act of tremendous courage because knowledge of HIV was limited in Indonesia, and stigma and discrimination against people living with HIV very high. “There still is a tremendous lack of knowledge about HIV in Indonesia,” said Aditia Taslim, the international grant writer for Rumah Cemara. “In 2003, a lot of people not only didn’t know what HIV was, but believed that is was a curse from God on someone who didn’t obey their religion.”
Football, or soccer as it is known in the United States, gradually became a way for Rumah Cemara’s members to get exercise, and teach non-HIV positive football players facts about people living with HIV.
“We love football,” said Taslim. “Even when we were still using drugs, we played football. At the Rumah Cemara, it started as a hobby and we didn’t think about making it a serious part of the program. We started with a few people, trying to play regularly every week.
“Then we invited people from other places, such as the university, to play. The more we played the more we got to know each other, and the more others learned about how harmful drugs can be. But when we started, we didn’t realize that we could use football as an intervention.”
In 2005, Rumah Cemara was invited to a football tournament among players from Indonesian drug rehabilitation centers. During the first several years, their team didn’t do very well. Soon, they started training more seriously to the extent that in 2009, they won the tournament.
This became a defining moment for Rumah Cemara, and they realized that a team of HIV-positive men could do more than just play football, but use it as a way to educate others about HIV. Through the competitions, Rumah Cemara found that after each match, when the other players learned that they had played against an HIV positive team, the other players’ reaction was sheer disbelief, not comprehending that men with HIV could play a competitive game of football for 90 minutes.
"One of the common stereotypes is that if you have HIV you are in bed sick, and can’t do any activity,” said Taslim. “Others are always surprised that people with HIV are actually like other active people. They can work, socialize, play football, and have fun. Football also builds the confidence of our members, even though we are not professionals,” said Taslim.
Taslim has also found that when other players find out about Rumah Cemara’s HIV positive players, them become interested in learning more about HIV. Taslim believes that when universities and other places offer formal seminars about HIV/AIDS, those seminars are most attended by people in the psychology or medical professions, with the average Indonesian not feeling that it is relevant for them.
“We start the dialogue about HIV through football,” said Taslim. “We generally don’t talk about our HIV positive status in advance of the games, but football is such a universal language that it gives people an open forum to discuss a wide range of topics easily.”
Rumah Cemara has built strong relationships with hospitals to encourage its members to seek health services and antiretroviral treatment. Their staff and members go to clinics and talk to people what kind of support they need, telling them about Rumah Cemara’s programs and how they can join. They encourage doctors to promote their football program, and encourage people to get involved.
Moderate, regular physical exercise appears to have definite therapeutic benefits for HIV positive individuals, and can provide an alternative, effective means of intervention in the ongoing management of this disease. “The main problem with having HIV is not the health aspect but the psychological and social aspects,” said Talsim. “Hospitals can provide the health services, but we provide psychological and social support, and having a normal life with activities and friends.
One of Rumah Cemara’s members, Isye, said, “As a housewife I learned that my ex-husband had infected me with HIV only after being hospitalized with serious illnesses. I was shocked, hurt, and confused. But once I started working with Rumah Cemara, I gained a new confidence and now aspire to help all of my contacts, especially women, become aware of and manage this disease. “
Another member, Fian, said, ”My life in addiction was a complicated rollercoaster ride where I spent time hurting myself and others. After learning I had HIV I went to Rumah Cemara, where I was accepted for who I am even when still in active addiction. Now as an outreach worker, I help decrease drug use in my community and keep my peers safe from HIV infection.”
“We wish the same wish that everyone has -- that there would be a cure for HIV/AIDS,” said Taslim. “And we wish there would no longer be any stigma or discrimination. But if we had more sustained funding, we could expand our work.”
Currently, 80 percent of Rumah Cemara’s funding comes from international donors, and 20 percent from Indonesian sources. They get no funding from the Indonesian government.
Rumah Cemera was the Grand Prize Global Winner in the Ashoka Changemakers and Nike’s Changing Lives Through Football competition. The US $30,000 prize will enable Rumah Cemara to incorporate more players into their football program, and expand its three sister football teams in the prisons of Bandung, and publicize its work more broadly. The prize money will also be used for a referral program for people who learn of their HIV status to get access to health centers and hospitals, nutritional counselors, support groups, and, if they are interested, the Rumah Cemara Football Program.
"We play football because we love football,” said Taslim. “We live with HIV and it doesn't mean we can't do what we love to do. We play football and we educate people about HIV. Football has changed many lives of people living with HIV/AIDS and we are grateful for this. This universal, non-controversial language shall transform this world to one with no stigma and discrimination against HIV/AIDS.”
By Changemakers contributing writer, Carol Erickson