Finding sanctuary

Full of young ethnic Muslim volunteers, the centre buzzes with chatter, and ideas echo off concrete floors as the volunteers plan their next community visits in the heart of Xinjiang province in north-western China.

Her eyes flooding with tears, Gulnar (not her real name) remembers discovering four years ago that she and her daughter had contracted HIV from her husband. Suicide, she explains, felt like the only escape.

Full of shame and concealing their status from their community in Yining, a town close to the border with Kazakhstan, the family was further isolated because Gulnar’s husband probably contracted the virus from sharing syringes of heroin.

As she nursed her husband through the final stages of HIV-related hepatitis, Gulnar also cared for her HIV-positive baby and struggled with her own health. From his deathbed, her husband implored her to attend a workshop on HIV run by the Red Cross and, although worn out and depressed, she hauled herself to the activity centre.

There she found sanctuary. She describes it as finding a family, many of whom were also from the ethnic Uighur minority that lives in Xinjiang province.

“My world view got bigger,” she says of volunteering. “I am respected by others. I am in good emotional health and it’s been good to meet different people — HIV-positive people, drug users.”

In 2007 she was employed as a Chinese Red Cross liaison officer, earning money to help her and her daughter eat well, which boosts the effectiveness of anti-retroviral treatment.

“People living with HIV come here to get together, obtain information, share their stories. We don’t have the chance to do that in our own communities,” says Gulnar.

Over the past four years, more than 30 volunteers have conducted workshops on prevention and care, raised awareness and reduced discrimination through community visits and presenting dramas which can draw big crowds — middle-aged women in colourful headscarves on little stools, and men and teenagers flanking the stage. Passers-by are drawn in by onstage shenanigans, laughter and quiet sobs from people in the crowd who recognize the stories as their own or those of people around them.

Across China, efforts are under way to reach an estimated 700,000 people living with HIV (out of a global total of 33 million). These statistics and the human toll behind them have led the Red Cross Society of China, as part of the Red Cross Red Crescent Global Alliance on HIV, to commit to scaling up its HIV work by 2010. It aims to reach 27 million people with messages on prevention and reducing stigma and discrimination, to target 866,000 people with peer education and to provide services for 90,000 people living with HIV and their families.

In Xinjiang, more than three-quarters of the 18,206 people testing positive have injected drugs. Heroin pours into the Xinjiang Uighur Autonomous Region from nearby Afghanistan and along truck routes from the ‘golden triangle’ of South-East Asia, passing through Yunnan province, where the first Chinese case of HIV was diagnosed in 1989. At first, HIV was more or less contained to injecting drug users, but now their families are testing positive.

Mostly, the volunteers use the Uighur language, which is spoken by 8 million people. Around 80 per cent of HIV infections in Xinjiang occur among Uighurs, and the conservative Muslim culture means it is important that health messages are culturally sensitive and, where possible, delivered by fellow Uighurs, with men educating men and women educating women.

It takes time for perceptions to change. Gulnar is still discreet about her own status, confiding only in her mother and choosing carefully who she tells.

Building trust and gaining respect for the programme hasn’t been easy, says Yasin Abdulla, an HIV programme officer with the Red Cross.

“In the beginning it was hard to knock on doors, and talk about HIV and drugs. The volunteers would be thrown out and rejected, dirty water would be thrown at them, people would use bad words. Because of discrimination, they would sometimes quit.

“Now people are starting to accept our volunteers and recognize the Red Cross. When the volunteers visit people in their homes to raise awareness, the community responds with good suggestions,” he says.

Community trust is needed to build these programmes, and this requires enormous effort, according to Australian Red Cross HIV adviser Dymphna Kenny.

“Developing trust relies on being able to feel empathy, keeping people’s confidentiality, particularly about their drug use or HIV status, making real attempts to understand people’s lives, instead of relying on stereotypes or assumptions and being thoughtful in making genuine, strong relationships between people,” she says.

Lives are slowly being transformed by these interactions, says Abdulla.

“The volunteers have changed. They have a voice in the community. They think, ‘I’m a volunteer, not rubbish any more.’ They do something good for their community.”

In the capital, Urumqi, and cities like Kashgar, close to the Kazakh border, the Red Cross is starting to reach marginalized minority groups.

“If you can talk to someone on the same level, it’s easy to communicate,” Abdulla says. “You must pay attention to every word you say, because if you say something wrong it really hurts. These people have problems in their lives — they are jobless, there is poverty, they are HIV positive. They really need our help. We encourage them to do the workshops. Then they often become volunteers.

“Acceptance is important. You must join them, and not only in training but in conversation. Often these vulnerable people find it hard to express themselves because they lack confidence and are concerned about confidentiality. When you can respect them fully, as you would a friend or family member, then you can work to solve the problems,” says Abdulla.

Will disinfectant spray protect against HIV when someone has a heroin overdose? Volunteers entertain and inform.
©WANG MIN BING / AUSTRALIAN RED CROSS