“When they knew I had AIDS” – Stigma and shame forces community to find home in a cemetery
White smoke wafts up into the air on the cremation grounds that Mon calls home. In front of a makeshift shack, the skinny 41-year-old man lifts the lid of a steaming basket of sticky rice as he tells a story of social rejection that is shared by many of the residents in a community of people living with HIV at a Buddhist monastery in Roi Et Province.
“It really hurts that my family doesn’t let me stay with them. I used to live with my parents and we worked our rice fields together. But when they knew that I had AIDS, they didn’t want me as their son no more,” says Mon, his voice trembling. “They chased me away like a dog.” He says the pain was so great that he thought about taking his life.
Thailand has been widely applauded for its successful efforts in tackling the HIV epidemic. The number of people newly infected with HIV plunged from about 100,000 in 1990 to 6,900 in 2015, according to the Ministry of Public Health. At the same time, more effective and accessible treatment options have significantly increased the life expectancy of HIV-positive patients in the past decade. Currently there are about 440,000 people living with HIV in the country.
But people diagnosed with HIV/AIDS in Thailand are not only faced with the difficult task of navigating an already strained healthcare system but also with widespread stigmatization. A 2015 study by the Ministry of Public Health’s Department of Disease Control found that 20% of the respondents expressed feelings of disgust related to people living with HIV, a 9% increase from the previous year.
Stigmatization and discrimination often forces people living with HIV out of their social circles.
“My family didn’t let me eat at the same table and once the villager knew I was sick, no one wanted to talk to me anymore,” says Mon who was infected with HIV through unprotected sex.
Mon’s experience rings familiar for most of the 38 residents at Ban Ruam Namjai, a community of people living with HIV located in the Buddhist cemetery of Sri Mongkhontham forest monastery in Roi Et Province’s Sri Somdet District.
Aum, a 36-year-old woman, received the virus from her partner who she believed was infected through an unclean syringe while using drugs. Too ashamed to ask for help from her family she took refuge at Ban Ruam Namjai as her body was becoming too weak to continue working at one of the factories on Thailand’s eastern seaboard.
At Ban Ruam Jai, Aum found a new home in a close-knit community of people who share the same fate. People from all across the country live together according to a set of rules that are written down on a sign at the entrance of the community.
“I like living here because it’s like one big family, we’re always helping each other,” Aum says. ”If this center won’t be shut down, I want to die here.“
Ban Ruam Jai depends on donations that are managed collectively and distributed among all community members. Residents also receive a government benefit allowance of 500 baht (about $14.50) per month, but it is not enough to cover cost food, utilities, and trips to the hospital.
“I’ve to worry about where to find money all the time,” says Mon who is among physically strong enough to work odd jobs on the fields of neighboring farmers and on construction sites.
Ten minutes to free health care
The residents of Ban Ruam Namjai are registered with a local hospital which entitles them to free healthcare and life-saving antiretroviral drugs. This is part of a nation-wide policy that the Ministry of Public Health introduced in 2014 to monitor all HIV patients.
Yet, even though Thailand’s healthcare system is responding to the needs of people living with HIV, the lack of affordable public transportation in many places in the Northeast poses a barrier to health care access.
When Mon moved to this HIV/AIDS community three years ago, he used to travel to the local hospital once a month for a medical check-up. It is a ten-minute drive from Ban Ruam Jai to the Sri Somdet District hospital. Many members of the community are too sick to walk. As a result, Mon and other community members are only able to afford one hospital visit every two months.
“Transportation to the hospital is a big issue for all of us because we don’t have a car we got to pool money,” says Mon. “We have to pay someone to drive us.”
Engaged Buddhism against HIV
Ban Ruam Jai was set up by the abbot of Sri Mongkhontham forest monastery, Phra Bu-utai Kittiko, to accommodate a growing number of people living with the disease at the height of Thailand’s HIV epidemic in 1996. At times, up to several hundred people were living at the monastery, according to an older resident.
Buddhist monks and nuns have been at the frontlines of Thailand’s struggle against HIV since the 1990s. In Unicef-sponsored programs, monks and nuns across the country were trained in HIV prevention and AIDS care.
In the Northeast, HIV/AIDS care centers became a common sight, often attached to forest monasteries and run by Buddhist monks who manage donations, and provide spiritual and psychological guidance to those who come to the temple seeking assistance.
But the fortunes of care centers located in Buddhist monasteries often rise and fall with the abbot in charge. When Phra Bu-utai passed in 2015, the community at Ban Ruam Namjai did not only lose its main care-giver but also an important advocate in conflicts with residents of nearby villages.
Fear of infection
“What did Phra Bu-utai bring them here for? I don’t want them living so close to us,” says 62-year-old Khai, a female vendor from a village not far from the HIV/AIDS care center. “They are staying close to the village pond and I am scared to get infected.”
Residents in the nearby villages say they are concerned that people living with HIV, who often have open wounds, enter the public water reservoir. Although it is impossible for the virus to spread this way, residents have tried to ban the community at the monastery from using the public water source or gathering food in the area.
“We know you can’t get infected easily but deep down our community still hates them,” says Khai, adding that rumors have it that alcohol and drug abuse is common at Ban Ruam Jai.
Mon has grown used to villagers’ hostile attitudes. Vendors at the market often do not let him touch their goods and refuse to take money out of his hands but instead they tell him to put it on the table.
“The villagers know from the spots on my body that I have AIDS, and they show their disgust,” he says.“That’s why I often wear long-sleeve shirts and a hat when I leave the monastery.”
HIV battle shifts to stigmatization
The Ministry of Public Health and non-governmental organizations have recently realized that stigma remains a major challenge in Thailand, more than 30 years after HIV was first detected in the country.
As part of a HIV-related stigma reduction program, about 1000 hospitals in Thailand joined an international campaign for zero discrimination against people living with HIV last month.
Yet discrimination in everyday life continues to be a persistent issue says Arunee Suttibak, a professional nurse at the health promoting hospital in Sri Somdet District. Ms. Arunee has been running HIV information and prevention campaigns in the villages near the HIV community at Ban Ruam Jai.
“From what I’ve seen, villagers understand the message of our campaigns,” says Ms. Arunee, “but individual behaviors and attitudes [towards people living with HIV] are different issues.”
Misinformation and people’s lack of knowledge about treatment options for people living with HIV are part of the problem, says Prayongyut Sising, a volunteer HIV/AIDS caregiver at Khon Kaen University’s Srinakarin Hospital.
“Many people still believe that a HIV infection immediately leads to death and that it’s untreatable. That’s why people have prejudices and show their disgust,” Mr. Prayongyut says. “There’s also a stigmatising of HIV patients, that they are bad people, drug addicts and promiscuous.”
Mr. Prayongyut believes that the efforts to educate people about the disease must be stepped up. HIV prevention campaigns are important but they fail to tackle the root cause of discrimination and stigma.
“Thirty years later and people still have these attitudes,” Mr Prayongyut says. He argues that there should be more campaigns showing that people living with HIV can be productive members of society.
Tucked away on the vast grounds of the monastery, between piles of car tires that were once used to cremate the dead, the people at Ban Ruam Jai have come to accept the fact that many locals regard them with disdain. But they wish people would show more empathy for their lives with the virus.
“We’re not asking for much. Soon all of us we be dead anyway,” Mon says gloomily. “But we don’t want to be seen as a problem or be hated. We’re only asking for understanding because we’re just humans.”