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'Home of Loving Care' for AIDS Patients

AIDS patients in a Beijing hospital find a caring staff and new channels for expression

Xu Lianzhi may seem like an ordinary, hardworking doctor, but for people living with HIV/AIDS (PLWA) receiving treatment at Beijing's You'an Hospital, Doctor Xu means much more. Patients of all ages call her "Aunt Xu" and even "Mom Xu" or "Granny Xu," a common title of endearment for older Chinese women. For Doctor Xu, it is her way of knowing her patients' care about her. "Every time I hear them call me 'Aunt Xu' or 'Mom Xu,' I am gratified and know they appreciate our work."

Xu has been a doctor for 46 years. She first treated AIDS patients in 1990, when You’an received and treated its first PLWA. She told this reporter that though, at that time, many people were afraid to be in contact with PLWAs or even afraid to talk about AIDS, she was not intimidated. "I believed that scientific methods of treating and touching PLWAs won't get you infected," Xu said firmly.

According to Xu, AIDS patients are quite different from those with other kinds of infectious diseases. She speculates that it is because society, and even their own families, discriminates against them. Some of them are not even wanted at home. They are faced with all kinds of social pressure. One patient described to Doctor Xu her experience. "I'm not afraid of death. Everyone will die eventually. But what I fear most is my relatives and friends all drifting apart from me. They don't even call me.”

While treating PLWAs, Xu has amended treatment methods. "Besides medical treatment, they need more emotional connection from family and friends," Xu said. She has concluded that as a doctor she should utilize every method to ease her patients' pain. She believes recovery and survival are closely related to one's mental state.

To relieve such stress, Xu and other doctors and nurses express affection for their AIDS patients. A non-governmental organization for AIDS patients and infected persons, named "Home of Loving Care," also operates in You'an Hospital.

Doctor Xu relayed a story about the establishment of the organization. Once, while making a routine check of the rooms, a nurse told her that a patient considered the hospital his home. "You know, this is the highest positive assessment of our work. This is what motivates us," Xu said, adding, "The word 'home' also inspired me.”

Indeed, Xu came up with an idea: Establish an organization in which PLWAs can live and communicate with others as if they are at home.

The hospital authorities soon approved the idea. So, in 1998, the Home of Loving Care, also the branch of the Chinese Association of Venereal Disease and AIDS Prevention, was formally established. All the AIDS patients in You'an Hospital are members of the "home".

"The Home of Loving Care sets up a bridge of understanding and affection between society and the people who are affected by HIV/AIDS," Xu said. It has over 2,000 volunteers now. Every three months, the hospital offers volunteer training courses, which mainly draws college students. The young helpers take basic courses on the nature of HIV/AIDS as well as what volunteers in other countries do for AIDS. Some have volunteered for over five years. In the special section of the hospital, there are even performances held. But much of the time, patients can just talk to each other in an environment that is set up to be comfortable for them.

"When the AIDS patients first come to us, they are nervous and vulnerable. But now they have more confidence to face life," Xu said with satisfaction. She also believed that in the Home, it is not only the patients who get help and psychological support, but also the volunteers themselves learn much about HIV/AIDS. They will be able to spread this understanding to society, which could be an important step in breaking taboo and prejudice concerning the disease.

Many of the AIDS patients leave messages in the hospital when they leave for home. Some come illiterate, so they just draw out their ideas and feelings. "You know, everyone can draw, regardless if the drawing is good or not. And I found that drawing is a really good way to freely express feelings," Xu said. Once again, this astute doctor thought of the possibility of using art to make her patients' lives better.

In December 2002, a friend introduced Xu to a Spanish doctor who goes by the name of Jose. Jose was one of the founders of La Casa Art Project, which used drawing to teach mentally handicapped Chinese children. Having met Doctor Xu, Jose wanted to do something for PLWAs. They talked of founding a similar art workshop in Beijing to help PLWAs express themselves and regain confidence.

After half a year of preparation, the Positive Art Workshop was founded in You'an Hospital. It received financial support from the hospital and the U.S.-based Ford Foundation. Jose and his friend Diana, from Ecuador, were the first volunteer teachers for the workshop. Xu said that they have returned to their home countries but applauded them as excellent teachers.

The workshop has small classrooms that can accommodate 15 students at a time. Over 100 students of varying ages are currently enrolled.

After Diana and Jose left China, Song Pengfei took charge of the workshop. Song is the first openly AIDS-infected person in China to use his real name. He became a media figure in November 2003 when former U.S. President Bill Clinton shook his hand at a symposium at Tsinghua University in Beijing.

Initially, there were not many people coming to the workshop. Few people accepted this kind of method, according to Song. But among those that do, some come just to talk or cry. "Anytime they need, I’ll be with them and listen to them," Song said.

Students, volunteers and teachers remain anonymous. And judgments are suspended. No one is asked to give a name or how he or she contracted the disease. In fact, personal questions are not allowed, as Song stipulates.

PLWAs in the workshop can freely draw, paint or just talk to each other. Sometimes they also play role-playing games. One may act as a reporter or a photographer, while another acts as a storyteller. All these help to "open the lock on their mind," said Doctor Xu, who joins in when she has time.

A volunteer student once painted, "I hope that I can be a spokesperson for AIDS to make more people aware. For me, this is a fresh start. I am like the sun slowly rising on the horizon, emitting faint sunlight. But I do hope that in the near future, the sunlight of love will shine on everybody with AIDS."

A few of the works by PLWAs from the Positive Art Workshop were displayed this June at Dashanzi, an art district in northeast Beijing, in an exhibition entitled "Take Part." There were quite a number of visitors, including foreign ambassadors to China. In July, Song went to the 15th International AIDS Conference to present 20 pieces of these works. "We want the voices of China's HIV-positive people heard," he said.

DR. CARE: Xu Lianzhi, an AIDS doctor, shows small gifts from volunteers in the Home of Loving Care

               ROOM TO EXPRESS: The Positive Art Workshop

                      OPEN YOUR MIND: Patients' works of art

'LIFE IS BEAUTIFUL': Patients, which range from children to adults, express their hope for a better life through their drawings

(Beijing Review August 26, 2004)              

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