I finally met Zhuang Joy at the 137th Street subway station after two weeks of tough negotiations. I had submitted my request online, entered my hours of availability, as well as detailed information about my past and present. I followed up with many text messages to Zhuang explaining why I wanted to join her group.
Zhuang is one of the organizers of a group who call themselves the “Weekly Visit To Gao.” The group of 30 young Chinese students had taken upon themselves to provide the care, feeding and protection of Dr. Gao Yaojie. Gao was once one of China’s leading AIDS activists. But in 2007, she was banished. Frail and sick, she ended up in an apartment in Harlem, where she was left to fend for herself.
Until the students began to arrive.
Most of the members of Zhuang’s group are Chinese graduate students. They take turns visiting Gao every week. They act as parents, editors, translators, guardians and grandchildren. The group was founded by Huang Hongxiang, a student at Columbia’s School of International and Public Affairs. Together with several other students, he applied for her medical care, taught Gao how to use e-mail, protected her from visitors who they needed to have malicious intent and most importantly, helped Gao start the memoir which she regards as the most important task in what remains of her life. She is 87.
“You are the reasons why I can endure this life of ‘degradation’, ” Gao says she told Huang.
Huang, who graduated last spring, is now in Africa, working to promote local trade with Chinese oil companies. Zhuang became the group’s leader. The group is tired of people who visit only to be able to brag about having met the famous Dr. Gao. So Zhuang was suspicious of my intentions.
“Some people came, asked questions, fulfilled their curiosity and then left, ” Zhuang told me. Zhuang was the exact opposite what I had thought about her: her sharp, straight words had left an impression of her on me – a serious, capable young lady, so I imagined she was tough and difficult to approach. It took us a few minutes to walk from the subway station to 3333 Broadway, the biggest apartment complex in Harlem. I have passed the building everyday and have visited friends living there, never knowing that this high-rise built for low- and middle –income families had become Gao’s home in exile.
There are nearly 30 units on every floor. Units are close to each other and hallways are long and narrow. I would not have found my way to correct elevator if Zhuang had not guided me.
Zhuang let herself into the apartment, which is cramped, dim and humid. A double-sized bed takes up most of the space of the dining room, but Gao does not sleep there. It is mainly for visitors. Around the bed, are some IKEA style tables and chairs that Gao’s young admirers bought after she arrived. Gao keeps the lights off and the apartment is dark in the daytime. Pale light comes in through the windows.
Standing by the window wearing a dark woolen coat, Gao’s face was etched in the sunlight slanting through the thin curtain. She was patiently watering her three pots of flowers. Then she turned to us and sat down, grabbed toast from a plate, dipped it into water to make it soft, and slowly swallowed it. The view of the sunset in autumn from the window made her very happy. She smiled at us and I could tell that she only had three teeth. “It is the only snack I can eat now. Actually, an old, exiled woman like me should not eat anything to survive, ” Gao said while chewing.
Gao is a small woman with short hair and a lined face. She smiles easily and likes to joke. She walks haltingly but resists attempts to assist her. She naps when left alone, sleeping on one of the narrow beds in the back bedroom.
“I only own this worn coffee table,” Gao said, pointing to the table in front of her. That table looked a little messy. There were bottles of pills, boxes of roach bait and dozens of books. Sketches, envelopes, leaflets were everywhere, covering the tabletop
“Do you have any work for me today?” Zhuang asked. Zhuang works six days a week, so she can only visit Sundays or holidays. Zhuang lives in Flushing, which makes visiting Gao in Harlem more difficult.
Because she has lost almost all her hearing, Gao sometimes communicates with people by writing words on paper. On one discarded envelope, which was buried deep in the pile, a line was beautifully written: “No. 38980 planet.”
In 2007, the International Astronomical Union named asteroid No. 38980 after Gao in honor of her winning the “Global Leadership Award, Women Changing Our World.” That year marked a great change in Gao’s life.
Before that, she was regarded as a heroine who fought against AIDS by distributing medicine and AIDS prevention books at her own expense. She gave all her prize money to poor people with AIDS, earning even more respect. In the 1990s, AIDS began emerging in Henan Province, where Gao worked as a physician who specialized in gynecology. But she also infuriated the local government.
In her autobiography The Soul Of Gao Yaojie, she wrote that due to the incomplete sterilization of instruments and the method of extracting the plasma and returning red blood cells to the donors, many people were infected with the HIV virus – which became known as the Bloodhead Scandal. She strongly questioned the government’s claim that the majority of patients were infected through sexual intercourse, arguing that only 10% of the cases were caused by drug use or sexual intercourse. Gao called upon the government not to mask the real number of people with AIDS, and to take measures to regulate the blood market. The government’s response was tepid and, in Gao’s view hindered her work as an AIDS advocate.
She was put under house arrest, and vanished public view. In 2009, she fled to the United States, where for her first year she was a visiting scholar Columbia. That’s when Huang Hongxiang knocked on her door. “More and more students came since them. Sometimes, I felt sorry that some had to stand for hours because there were not enough chairs,” Gao told Huang not to bring more than ten students per visit.
He called her “Grandma Gao.” Through Huang she got to meet Chinese students in the United States. And it was also the first time that she saw a way to fulfill her dream of publishing two more books – one a memoir and one on AIDS prevention.
The “Weekly Visit To Gao” group created a discussion board with two parts: one about Gao’s health, needs, and schedule of care; the other for newcomers who had never visited Gao before. The group was strict about granting access to journalists.
“If you visit Gao just for a good story, please never come here to disturb her,” Zhuang told me.
Gao is seldom alone. She never opens the door for strangers or visitors who haven’t made appointments. A member of the group is always with her during her two-hour physical therapy appointment with the home health aide. The members of the group clean the apartment, help her with her speaking schedule, accompany her to the doctor, and drive her when she travels out of town. Gao does her own shopping and, with a diet limited by so few teeth, does her own cooking. But it is with her books that Gao relies on the members of the group. In addition, they are talking more about how to help Dr. Gao edit her books.
“Help me edit this article,” Gao said to Zhuang with the sort of smile that might come from a grandmother.
Zhuang smiled back at Gao, sat down at the computer and began editing a chapter in Gao’s memoir. Gao is unable to type. She first writes down her words in a notebook, asks one team of students to type it into her computer, and then asks another to edit. Gao divides her writing assignments equally to assure both teams have “work” to do when visiting her.
As Zhuang worked, Gao asked me if I knew anything about Huang. She asks the same question of all who know Huang – how is he doing now?
“He should not have gone to Africa,” she said, a worried look on her face. “Huang is a talented young man. He is thin and short, I mean, when compared with the average height. Africa is too dangerous for him.” In Gao’s eyes, Huang is still a teenager who is unable to live on his own. Huang usually wore a purple sweater in winter when visiting. One day, Gao discovered a small hole in Huang’s sweater. Huang was not paying much attention to it. Gao insisted on fixing the hole. She grabbed her needle and thread, and carefully darned the sweater.
“You cannot image how sad Huang’s parents would be if they knew that their son had to wear an old sweater with a hole and no one helped fix it, ” she said. “I miss him so much.” In appreciation for her had done for her Gao added one of his articles to the addendum of her memoir, which is going to be published next year.
Zhuang spent three hours editing. Despite Gao’s age and fraility, Zhuang is sanguine about her health. She was working to get her additional nursing care. She also arranged medical appointments and a schedule for group members to accompany her because Gao cannot speak English.
Zhuang wrote on a piece of paper, “Are you feeling good today?” and showed it to Dr. Gao.
Dr. Gao nodded and smiled.
The group has a dilemma. They want to draw attention to Gao’s story while not drawing attention to themselves. Last month, a reporter from Southern Week, a Chinese weekly which has a reputation for challenging the government, came to interview Gao. The group talked a lot to the reporter but were reluctant to be quoted. Gao remains a controversial figure in China and the members’ work is improper to people who hold different views on her.
Still, the group members hold out hope that Gao will one day go back to her family and friends in China.
But Gao is not interested in returning. She has made a new home, with new, younger friends, in Harlem.
“Do you want to go back to China?” she asks. “No, after my first day here, I never thought of returning. I will only go back as ashes.”