A Fight for Equal Standing

On an early morning in January, Chen Yan, his wife Hou Jiying, and their six-year-old daughter Chen Xiaojiao arrive at the gates of UNICEF Beijing. From the flush of excitement on the six-year-old's face as she bounds up the stairs, the significance of this occasion is visible. This week, the three of them could be any rural family visiting the capital for the first time, seeing Tiananmen Square and the zoo, and taking snapshots. For Chen Yan and his wife, both HIV-positive, moments like these are hard-won.

In the years since a blood test in Jilin revealed the presence of the virus, Chen has struggled to be seen as an ordinary member of his community. Faced with the loss of his livelihood and friends, he worked to combat the ignorance about HIV/AIDS in his own village. But he did not stop there. Chen has dedicated his life to alleviating the discrimination faced by those infected with the disease across China. In doing so, he and his family have made themselves extraordinary leaders in the fight against AIDS.

“With each breath I must become stronger,” says Chen, who is confident and articulate although he only received a second grade education. “I do this to find balance. When I didn't know I was infected, I spread the virus to my wife. So now I always think of how I can contribute to society, to other people.”

Chen Yan's life has never been easy. At the age of 12, he was sent to live with a great-uncle who had no sons of his own, and no land to give his foster son when he reached adulthood. Chen lived by collecting scrap metal in the summer and making bean curd and popcorn in the winter.

In 1994, at the age of 26, Chen Yan was ready to marry his fiancée Hou Jiying. To earn extra money for the marriage, he went to a recently opened blood station in the county and gave blood. The couple's daughter was born in 1996, but became severely ill at the age of three. The medical bills for her treatment reached RMB 50,000, and Chen went once again to give blood. This time the workers at the Jilin Blood Centre would not accept it. Why was he trying to sell his blood, they asked him, when he was HIV-positive? 

The words meant little to Chen. For him, like others in his village and across much of China, AIDS was no more than a rumor. To inform him about HIV/AIDS, the Jilin Centre for Disease Control (CDC) sent health workers to Chen's home. It wasn't until venereal disease specialist Liu Baogui talked to the family in person that Chen began to understand. Even then, the details of the disease's transmission were unclear to him. He thought of his wife, child, and parents: Were they infected too?

“At the time, I didn't want to live,” remembers Chen. “I bought pills, and I thought that if the three of us took the medicine, it would all be over. We wouldn't spread it to others, and they wouldn't look down on us.”

Hearing her husband's plan, Hou Jiying called Liu to ask for help. The CDC doctor came back to the house. He gave the family words of encouragement, and stayed to educate them on HIV/AIDS. But there was more bad news: Hou's blood test had come back positive. The status of their daughter was uncertain. Today the couple—in particular Hou Jiying—agonize over the child's future. 

Over the next few months, the family had to come to terms not only with this difficult diagnosis, but also with the brutal stigma that accompanied it. In better days, Chen Yan and his foster father were popular guests at local weddings. But when the villagers found out that the young man was infected with HIV, everything changed.

“They looked at me as if I was a devil. When they saw me they ran. When I came to pick up the scrap metal, the whole street would run. Nobody would buy my popcorn. The most difficult time was when I wasn't able to buy anything, and my father had to ride his three-wheeled cart to go buy things.”

In the absence of any real knowledge of HIV/AIDS among villagers, the disease was incorporated into local folklore, as a warning to children who strayed too far from the village. “Don't misbehave,” Chen Yan heard the old people telling young children. “Or you'll get AIDS, and if you get AIDS you'll die.”

Robbed of income and community, there was little solace for Chen and his family. Only the periodic visits of the CDC workers gave them hope. To avoid attracting the notice of the neighbours, health workers parked their cars outside the village and walked to Chen's house. They encouraged him to apply for tax-free status from the Industrial and Commercial Bureau for raising hens. Bureau officials even stopped by personally to buy hens from his stand.

As important as the material help was the simple human contact with people like Liu. “Brother Liu shook my hand when we first met, and ate and drank with us for hours,” says Chen. It was eventually this example of kindness that helped ease the ferocity of discrimination among the villagers. Frustrated by the unfair treatment he received from his neighbours, Chen Yan invited health workers to drive straight to his door. He hoped the villagers would see that the city and county people could visit him, talk with him, and eat with him without being infected.

It worked. Slowly, the attitude of his neighbours began to change. People began to show concern, and even to knock on his door again. Along with this change came another, more subtle transformation in Chen himself. He began to have more confidence in his own life, and to reach out to others.

With the support of the government, the local media, and UNICEF, Chen Yan and Hou Jiying have become activists in AIDS prevention. Lecturing at a summer camp for students, giving talks on the radio, and participating in awareness-raising events, the couple has dedicated endless time and energy to AIDS education and to the fight against discrimination. Their home has become a self-help and care centre for other HIV-positive and AIDS patients in the area; the two of them provide information on the spread of AIDS and lend others the necessary courage for dealing with the disease in their own lives. Villagers often knock on the door to ask questions about HIV/AIDS. So do journalists. The couple's life was made into a five-part series on Jilin Televisio in a program that was particularly well-received among government leaders.

Liu notes that the couple's active role has encouraged others who are HIV-positive to become similarly involved. “There are several HIV-positive people of good standing in their community who have become leaders. There are others who have earned the respect of the community for their work.” He uses a traditional Chinese idiom to describe it: “Do not ask a hero where he is from.”

A hero to many, Chen Yan continues his work fuelled by a belief in the potential for change. “Even in the most difficult times in the village,” he says, “I had confidence that people can change.”