April 22-24, 2004: Field trip to Henan Province
Shangcai county: Houyang village, Wenlou village (Wenlou township)
Shangqiu county: Shuangmiao village (Zhecheng township)
by Fengshi Wu, University of Maryland
April 22. First stop in Henan: Dr. Gao Yaojie’s home.
We luckily caught Dr. Gao, just as she was on her way out to see a relative after waiting for us the whole day.
The next day, this 77 years old lady would again go to Cao County, Shangdong province, to visit the six AIDS orphans that she had helped to be adopted by six local families.
Since the beginning of 2004, the provincial Ministry of Civil Affairs has run a special office in charge of the AIDS orphan. Dr. Gao has visited the office many times to find out the rules of formal and informal adoption. Her main interest with the group is to find ways of helping AIDS orphans through non-governmental channels. One time she was told by the Ministry staff that educational materials were needed. She immediately agreed to give them 10,000 copies of her own books. They refused nevertheless, saying that Dr. Gao’s books are not authoritative. Another time, she was told that people are scared of AIDS orphans, and no one wants them. Lately, rumors began to spread that the six orphans adopted by Cao County families are living in misery. It’s said that people had seen the children laboring in the fields instead of going to school. Dr. Gao was infuriated.
She is definitely a doer and fighter. Accompanied by a group of journalists, Dr Gao was about to take the six kids on a tour of Cao County, and break the rumors that had been spreading.
A few of us stayed with Dr Gao until late that night. Every so often she would ask for a hand lifting a box or moving a bag of donated clothes. But for most of the time, she just kept packing for the trip and organizing the piles and piles of newspaper articles and research materials that she kept throughout these years. And with a steady stream of visitors stopping by throughout the evening, we were all kept very busy. Some of those who came by were patients of Dr. Gao’s. Others were looking for AIDS information and education materials. And one journalist came from Hong Kong for an in-depth interview with Dr. Gao. Dr Gao’s two bedroom apartment has become an open house for anyone who cares about AIDS issues in China.
April 23. Second stop: Shangcai County, Houyang Village.
Thanks to Hu Jia, Mr. CHENG Xiangyang was waiting for us at the county when we arrived. After just a few words, we all became familiar as old buddies, since we “virtually knew” each other through numerous emails already. Our bus driver started to feel a little bit uneasy after hearing parts of our conversations. He asked about our purpose of the trip this morning and particularly about whether we were planning to go to AIDS villages. We lied
Our first stop was Houyang village, where Humphrey could finally see the girl he has been supporting. Her name is ZHOU Jinyong, and is 14 years old. After her father died of AIDS, her family couldn’t afford to send her to middle school, so she got a job teaching at a private pre-school, founded by Mr. Cheng Xiangyang and his younger brother. She finally left at the end of last year, when the school was shut down by the local government.
Jinyong came out to see us (we: a bald young man, two city girls, a stylish man like Hong Kong super star, and some overseas Chinese who can barely speak Chinese). She looked so pretty in her blue jacket, and her neatly made up hair. Of course, in front of such a crowd, she was extremely shy. We got her smile, talk, and even speak in English. And by the end, I believe she felt comfortable to be with us as she walked us out to see the closed school where she used to teach.
Mr. Cheng Xiangyang, a native of the Houyang village, could not be easily spotted out among his neighbors. He has had the same life experience as any normal Chinese farmers would have – after middle school, going to different cities for work, and being part of the “floating population”. If he had stayed in his hometown during early 1990s, he probably would have also sold his blood at local blood stations. His wife did and is now HIV positive.
After Cheng returned home in late 1990s and found out about the “strange disease” that took away many neighbors’ lives, he started going to local medical clinics, and studying about HIV and AIDS from the pamphlets given by local barefoot doctors. From 2002 to 2003, he opened a pre-school in his younger brother’s front yard, where 10-20 AIDS (or one parent) orphans can come and study. When we were there, Cheng’s younger brother and some friends and neighbors were always around. The Cheng brothers are probably well liked in the village. Mr. Cheng also showed us maps of Henan and Shangcai, in which he circled out the 22 national-level focused villages for comprehensive AIDS care, decided by the State Council last month. He has been traveling on his own to most of these villages and trying to document every single AIDS patients in Henan, either sleeping under the ground or still struggling for life – a quietly disappearing history.
April 23. Third Stop: Wenlou Village – The Most Famous AIDS Village in China.
Wenlou was the first AIDS village to be exposed, and therefore, it is the most visited AIDS village in Henan these days. There are people who prefer to show Wenlou, and there are people who prefer to only talk about Wenlou.
Newly paved roads made the ride to Wenlou much easier than to Houyang. Many villagers were working along the side of the new main road to the village. A new – the first in its history actually – cemented parking lot has been finished by the village committee courtyard. We didn’t go straight to the village committee but “sneaked” into some villagers’ houses.
The first patient we wanted to visit happened to be out for medicine. It is a woman, who has lost her husband, and become psychologically disturbed sometimes. Her house was in very bad shape, to the degree that she slept on the ground outside as the weather went warmer. Empty medicine bottles, trash, broken house ware scattered all over the place. We were not able to speak to her in person but our imagination occupied our minds.
A young man later came and joined us. His name is CHENG Dongshan, one of the first HIV patients diagnosed by Prof. Gui Xi’en in 1996. (Max became friendly with him, and enjoyed smoking breaks with him.) At that time, he encountered strong reaction from the community. One dramatic story was of a neighbor who burned the chairs where he had just sat in. Luckily, he still does not have AIDS. Many patients who were tested HIV positive years after him have already died. He has not yet been on any HIV medication.
Surprising to us, Dongshan has an optimistic attitude, maybe because he sees himself a lucky one. He told me that he doesn’t want to start medication since he heard that many of his neighbors who had been taking such medicines got severe pains and side effects. He believes that he is healthier than them. He now rents a vehicle and runs a taxi business at the county center. With 10 yuan a day, he lives contentedly. In those darkest days, when few people in the village knew about this disease, and he was almost isolated, he bought a TV and stayed at home day and night.
I remembered to ask him about his wife. He was honest to tell me that she didn’t get HIV from selling blood but from him! She was diagnosed positive in 2001. Their two children are healthy. (I wanted to remind him about some basics of HIV/AIDS, but didn’t really know how to start without hurting his feelings or expressing my thoughts on his wife’s case.)
We also visited two other patients, and both were in their late stage of life. The first is a man, in his 40s. Very thin, almost not conscious. His 15 years old daughter was standing beside him and feeding him water and food. She has stopped going to school for three years. Obviously she was unhappy, or probably even resentful. We were not allowed to take any pictures. (During the long ride back to Zhengzhou city, she was the main focus of our conversation. How are we going to help those care-takers? They are ones who are devoting their own life to the patients. They are the second generation victimized by AIDS.)
The last house we visited in Wenlou is where an old woman and her grand children live. She is in her late 60s (younger the current Minister of Health), and has lost her husband, son and daughter in law. Mdm. WU Yi held her hands when she visited Wenlou in Dec. 2003. Now, she is so sick that she can hardly get out of her bed. “Not a single village official has visited me.” She murmured to us.
By then, I had to agree with Mr. Cheng Xiangyang that new roads, new buildings, new parking lots, and newly nominated officials are NOT the keys to solving the problem. Nor do the promises of free medicine, free education and 50 yuan/month compensation. Patients are still left alone in beds. (The brief meeting afterwards with village committee members and village AIDS prevention association reconfirmed my impression. One of them said in a firm tongue: “None of our patients cannot get out of their bed, and walk to the village clinic to get free medicine. If not, their relatives can help them to walk there.” Five minutes after we visited the old lady lying in bed…)
April, 24. Fourth Stop: Shuangmiao Village – Where is the Home for Orphans?
Mr. ZHU Jingzhong, a friend of Hu Jia, a HIV patient, used to be a dad of 55 AIDS orphans. Sadly, his “Home of Care and Love” (guan ai zhi jia) was shut down on Jan. 31, 2004. Since then all the kids were sent to a government-run orphanage. Latest news says that Mr. Zhu is building new houses and preparing to re-open his “Home” for more AIDS (or one-parent) orphans. Therefore, we decided to visit him.
Many of us have seen the picture of Zhu Jingzhong’s home from different reports. But this new two floored school building was indeed a shock for us. It is said to be donated by a private company in Beijing.
Zhu himself was not at home, but in Xi’an for a conference. His brother and many helpers (relatives and friends) greeted us. They were happy to tell us that 48 new orphans (or one-parent orphan) would arrive soon. When I asked why the kids cannot go to local schools (we passed by one on the way), their answer was that the kids will be living and studying at the same place, and this will make their life much easier. I was also curious about how the local government’s reaction to this big move. They told me that governmental official are now in quandary. They opened the “Sunny Home” orphanage after shutting down Zhu’s Home of Care and Love, but they couldn’t raise enough money to sustain it in a long-run. For Zhu, he wants to help more orphans in any case. Even if the government would shut down this new school one day, and take over all the children, Zhu and his helpers believe that this is still better than doing nothing. Local governmental officials came and showed “moral support” for the opening ceremony of the new school building. (very puzzling situation.)
Kids were called back, because of us, the visitors. It was a Saturday, so most of them came back from the Sunny Home for weekend. They told us about their life inside the Sunny Home. A lot of unhappy stories. They clearly like Zhu’s home better. (Since they have met Hu Jia before, they were not too shy.)
I asked a girl: “Do you write letters?” “Yes, I do.” “Whom do you write to?” “…” No answer for a long while.
They were lively, huddling together at one moment; and sad, quite, suspicious another moment. Their clothes were so different from each other, because most of them were donated from somewhere. Looking at their crowded bedrooms with simple (or broken) furniture – bunk beds after bunk beds – I was speechless. Where is a real home for these boys and girls?
A few more words:
Honestly, this is an easy way to end this field report. I am not at all helpful in thinking of solutions. Rural China and farmers are always the recipients of certain social movements led by city people in modern Chinese history. AIDS prevention might just be another case. Whether this will be the best choice, or even a choice at all for these farmer patients, I do not know. Most warm-hearted activists are community-less cosmopolitanians. But these patients are deeply rooted in their lands, their homes, and their communities. AIDS or public health is not a separated problem for rural China. Unless real grassroots, bottom-up efforts and new education can happen, will we, outsiders, be able to expect a long-term social change.