The teenage members of the group were aware they were living with HIV/AIDS, though they had yet to make their condition public. The state has no strategy in dealing with children with HIV/AIDS.
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Kompas/Stefanus Osa Triyatna
A girl uses a workbook provided by Komunitas Syair. The community’s volunteers support children by providing guidance, so that they can live without feeling ashamed or embarrassed about their physical condition.
Two large photos are seen in a room, each with different slogans: “AIDS Targets Us, It’s Time for Us to Pay Attention” and “AIDS Targets Everyone, Including You”. The room was packed with children, from under 5 years old to 7 years old. They were busy playing with toys, drawing and reading books, while some were listening to stories read out by volunteers.
In another room, a group of youngsters between 8 to 15 years old attended an English lesson led by Pritha Wibisono, a volunteer from Komunitas Syair, a poetry community. The children joining the activities that mid-February Sunday all lived with HIV/AIDS.
The volunteers were from Komunitas Syair, which focuses on children with HIV/AIDS, who aimed to bring “life” to the children, so they could experience and enjoy various activities without feeling ashamed of their own bodies.
In addition to storytelling and providing English lessons, the volunteers also aim to teach the children various skills; provide them with food, milk, vitamins and medicine; medical check-ups every four months and viral load tests once a year; health counseling; as well as books, school uniforms and shoes.
“Periodically, those children have their health checked at hospitals to measure their immunity. The virus in their body could grow if their immunity weakens,” Komunitas Syair founder Yudie Oktav said at his office in South Jakarta.
“There is a CD4 test to measure the level of immunity or longevity against the virus,” he said.
The community bears the full cost of the health checks.
So far, Yudie said, many organizations had been supportive. Sometimes, to help maintain the health of these children by distributing milk or other healthy foods, the community faces challenge.
Most of the 50 children who are a part of community must be accompanied by family members to attend a meeting twice a month. They not only come from Jakarta, but also from Bekasi and Bogor in West Java and Tangerang, Banten.
Not easy
It has not been easy to maintain volunteers who are willing to consistently teach and accompany the children as they have their own families to tend to. However, there are a select few who keep coming back, Yudie said.
The community currently has 15 volunteers.
Speaking after her English lesson, Pritha said she was excited to teach. It was tiring but being close to the children brought her a sense of pride. “At least, I want to help them with my ability. Fortunately, I also like children,” Pritha said.
The large number of children taking part in the lesson meant to classroom can become crowded and warm despite the air-conditioner. Still, the children were excited to be part of the lesson, which last two to three hours. Yudie said initially, Komunitas Syiar conducted the learning activities at Suropati Park in Menteng, Central Jakarta.
Several children attending the lessons have been part of the community since they were babies. There was one child whose parents had died and was accompanied by his uncle. After the activities, the children are given milk and snacks.
Yadie said that the teenage members of the group were aware they were living with HIV/AIDS, though they had yet to make their condition public. The state has no strategy in dealing with children with HIV/AIDS.
Komunitas Syair must also deal with the children’s parents. As one big family, its members share the duties and responsibilities of coordinating with parents.
Yudie said the community also bore the costs of the children’s blood tests, which can reach Rp 120,000 (US$8.40) per child. The tests are conducted every three months. Around 50-60 children have their blood checked to ensure their health. “Actually, family members have a big role in the health checks […] but most of the children have no family,” Yudie said.
To ensure that the children regularly take their medicine can also be challenging. It shares tips with family members on how to deal with children who refuse their medicine because of its bitter taste.
The medicine does not come in syrup form. If the children refuse to take their doses, their immunity would weaken and be unable to counter the virus.
Given the many necessities, Yudie said the community could not rely on donations. Therefore, Komunitas Syair often finds creative ways to survive, such as by organizing events or selling merchandise.
“We need to finance them. Many groups rely on funding from organizations to deal with HIV/AIDS. But when the funding stops, the program will also stop. Then, what will be the fate of the children?” Yudie asked.
He conceded that the community started out as a campaign to raise awareness about the dangers of narcotics, which in the 2000s was known as putau. From the experience, Yudie wrote a book titled Syair Untuk Sahabat (Poetry for Friends), telling the life of people with HIV/AIDS. From the book, the community was founded in 2008 and named Komunitas Syair.
Several celebrities have stepped in to help the community, including musicians Ian Antono and Ridho from the rock band Slank, as well as actors Darius Sinathrya and Donna Agnesia.
The proceeds from the sale of soccer player Bambang Pamungkas’ book also helped give life to the community for two years.
It is true that Komunitas Syair lives on with the helping hands of its friends.
