A brush with sadness and hope
By Robert Few (Originally written for the Bangkok Post) Sattahip, Chonburi, April 2007 – The games stop at 10 minutes to 6 p.m. exactly. A whistle blows, and 50 children, ranging in age from 7 to 17, run out of the sea, laughing with their friends as they pick up their towels and shoes and head to their rooms. It will be dinner time soon, but there is a far more urgent reason to stop playing get back to dry land. All of these children are HIV-positive, and it is time for them to take their second daily dose of antiretroviral medicine – the pills that keep their immune systems functioning and allow them to live normal lives. Among the children is Pen*, 16, a naturally shy girl who nonetheless likes a chat and a giggle once she gets used to you. Like almost everyone on this art therapy camp for children living with HIV, which is being held on a navy base near the resort town of Pattaya, she was infected with HIV by her mother. Pen was born when the HIV epidemic was raging through Thailand in the early 1990s, spreading outward from brothels and drug dens into the wider community. It was a time when few people understood or used condoms, and when few medical services were available to people infected with the virus. Today, if an HIV-positive woman knows she has HIV and seeks medical help, the chance of her passing on the virus to her child can be reduced to as little as 2 per cent. Without any medical intervention, however, every third child is infected. Pen was among the unlucky ones, and she was born with the HIV virus in her blood. Her parents died soon after her birth, and Pen was passed into the care of her extended family. From there, her life followed a pattern familiar to many children living with HIV. "At first my family hated me," says Pen. "And at school, other kids used to say all sorts of things to me. They would say that I was too small and that I should not get close to them. They would not let me share food or sit at their table at lunch time. Sometimes I would have nothing to eat." Despised and feared at home and at school – the two places where children most need love and encouragement – Pen lived a sad, withdrawn life until the virus flared up. Her arms and legs became coated with painful lesions, and she developed tuberculosis, which resulted in her being hospitalized. Diagnosed as HIV-positive by doctors leading a UNICEF-supported project at her local hospital, Pen was prescribed anti-retroviral medicines and began to get better. The virus receded, kept in check by the twice daily regimen of pills. But there was no medicine to change people's attitudes, and while Pen's immune system recovered, the attitude of her family, classmates and teachers became worse. As news spread that Pen really did have HIV – just as everyone had suspected – she was completely ostracized.
"I didn't dare go to school," recalls Pen. "I used to feel so lonely and so useless. As if I had no value. I didn't dare to show my feelings or do anything." Fortunately, Pen's doctors knew of another UNICEF-supported project in the area, the We Understand Group. The organization operates under the umbrella of the AIDS ACCESS Foundation, helping children access HIV treatment and providing emotional support through art and drama classes that help counter the psychological effects of HIV – the pain of rejection, the fear of dying, the loneliness of being shunned by family and friends. Desperate for friends and understanding, Pen signed up for the next course. The We Understand Group runs activities throughout the year, bringing HIV-positive children together to learn from and support each other. Through art therapy camps like the one held in Sattahip and other activities, they seek to build the children's self-esteem, give them back their confidence and teach them that they have as much worth as any other child. "Kids need love. It's as simple as that," says Scott Bamber, Chief of HIV/AIDS programming for UNICEF in Thailand. "But it is amazing how few people seem to understand this, and how much ignorance about the HIV virus still remains." A recently completed UNICEF-supported Multiple Indicator Cluster survey, which covered 43,000 households across the country, showed that only 49 per cent of women knew all three ways of preventing transmission of HIV – condom use, staying faithful to one uninfected partner and abstinence. Nearly 80 per cent of women agreed with at least one of four statements showing a negative attitude towards people living with HIV/AIDS, with 63 per cent saying they would not buy food from someone with HIV/AIDS. The survey also showed that misconceptions about HIV transmission are relatively common, with 22 per cent believing that a healthy looking person cannot transmit the virus, and 28 per cent believing it can be transmitted by mosquito bites. "People are afraid that they will get HIV from eating with an infected person or from letting their children play with children who are HIV-positive," explains Bamber. "But this is just not possible." There are an estimated 20,000 children under the age of 18 living with HIV in Thailand. The We Understand Group, together with other partner NGOs in their network, currently has funding to support activities for only around 1,000 of these children. That means thousands of children with HIV are left on their own to cope with a debilitating and potentially fatal disease in a world that often refuses to understand or care. All of the children attending the art camp have experienced discrimination. They come from all over the country, but they all have similar stories to tell. Noi, 11, was abandoned by his family in a rice field. He was found many days later living on roots and leaves. Niw, 15, used to teach art to other children in her village on weekends, but the children's parents were afraid they would somehow become infected and the art classes were cancelled. Other children describe how teachers bully them, or how hospital staff put on plastic gloves before they will touch them. It is no surprise that children are often suffering from depression when they first come to the art therapy camps. They have been grappling with such problems as social isolation, the loss of their parents to HIV and the fear of their own deaths. As Chutima Saisaengchan, a co-founder of the We Understand Group, explains: "The children here say to us: 'We have already reached the stage where we have to take medicines everyday for our health, and we are so young." But these children are also very brave, and they respond quickly to the kind of emotional support offered at the camp. "When the camps first started some four years ago, the children's paintings would be about sadness and death and problems with their families, all done in dark colours," recalls Nonglak Boonyabuddhi, a UNICEF HIV/AIDS Project Officer. "Now their pictures are full of brightness and happiness. It is proof that children's lives can be turned around if they just receive the love and attention they deserve." Pen agrees. "I have learned that when we feel sad or uneasy, we should put our feelings into our paintings," she says. "I used to keep all my emotions bottled up inside, but now I can paint to let them out. Her latest pictures often feature cheerful blue skies. "When I feel that I don't know how long my life will last," Pen explains, "I think that at least tomorrow I will be able to see the sun shine." Fortunately, there are reasons for happiness above and beyond the emotional support provided by projects like this. Ten years ago, most children infected with HIV in Thailand would die before their fifth birthday. That is no longer the case. The average age of children at the camp is 13, and none of them look ill, although they are all small and appear several years younger than their actual age. Due to the effects of the HIV virus on the body and regular bouts of sickness, children with HIV do not grow up as fast as other children. But without access to medicine and the kind of care they receive at this camp and through other activities, they would not grow up at all.The government included anti-retroviral treatment last year under a scheme which provides outpatients at government hospitals and health centres with free treatment and medicine. In addition, free HIV testing is now offered to all pregnant women, so there should be fewer children born with HIV in the future. Due to much progress in preventing mother-to-child transmission of HIV, the number of infants born with virus in Thailand has fallen to between 600 -800 per year. But with little chance of ending the discrimination faced by so many children with HIV, and with hundreds more children each year added to the 20,000 already living with the virus, there will be an expanding need for art therapy camps and other emotional support activities for affected children for many years to come. That’s the bad news. The good news is that as the children here on this camp finish taking their medicine and walk towards the canteen for dinner, it is clear how much of a difference this emotional support makes. Just as none of the children looks ill, none of them looks unhappy, either. The only signs of physical distress are on the tired faces of the camp staff as they shout through megaphones to try to keep these boisterous kids in line and march their disordered, giggling mass towards the dinner hall. It seems – as it should – like a scene from any camp organized for any group of school-aged children. But of course, there is tragedy behind the smiles. And there are thousands more tragedies out there beyond the walls of the navy base where the camp is being held – out in the darkness of the newly fallen night, beyond the sound of these children’s noisy laughter. Across the country, frightened children are suffering alone, out of reach of the limited resources of organizations like UNICEF, AIDS Access and We Understand. While that is the case, perhaps none of us should be laughing.
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