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Hongxiang Huang

Chinese AIDS Activist Endures “Degradation” in New York, Determined to Finish What She Started

Gao Yaojie, writing an article from her bed in Manhattan. (Hongxiang Huang/Tea Leaf Nation)

This article also appears in ChinaFile, a Tea Leaf Nation partner site.

Chinese people translate “New Yorker” into “New York Ke” to designate people living in New York City, including Chinese immigrants. But in Chinese, “ke” means “visitor” or “guest.” It has been a sad word in Chinese literature and poems for thousands of years, because what it really stands for are the people who stay in a place where they do not belong.

“Live on in degradation.” Gao Yaojie wrote these words in Chinese (gou huo, or 苟活) with a forceful and fine handwriting that indicates her highly educated background, a rare privilege among Chinese women born in her era. Her bedroom was dim; the ceiling light had been broken for at least a year. Her deeply-lined face revealed sadness and loneliness.

As a graduate student at Columbia University and one of a number of students who admire Gao and sympathize with her situation, I have regularly visited and helped care for her over the past year. When Gao penned those two words—gou huo—it was the saddest moment I had yet experienced in our frequent conversations.

Gao’s path to the United States

This is the 85th year of Gao’s life, and her fifth as an exile in the United States. But Gao feels very much the “New York Ke,” and she wishes she never had to leave her home or her work.

 Gao Yaojie is probably the oldest Chinese exile in this city of immigrants. During the 1990s, after disclosing the rampant spread of the AIDS epidemic in rural Chinese villages—caused by the unregulated selling of blood encouraged by the Henan provincial government—this gynecologist became a world-renowned AIDS activist. Her bravery not only won her the “Ten People Who Touched China” award in 2003, given out every year by China Central Television, but also made her a target of harassment from those whose careers were at risk because of her work. After almost a decade of intimidation and harassment, Henan province politicians placed her under house arrest in 2007.

With the help of Hilary Clinton and many others in the U.S. and China, in September 2008 Gao fled to the U.S. and eventually settled down in the Upper West Side of Manhattan, leaving behind her entire family. She was 81 at the time. In a BBC interview the year after she arrived, she said she left, in part, because another activist, Tan Zuoren, had been arrested and charged with trying to overthrow the government after advocating for the disclosure of the true number of children who died as a result of the the massive earthquake in Wenchuan County, Sichuan province. She feared that, if she stayed, the same would happen to her.

“I do not care whether I can go back to China or not. I want to publish my three books and leave the world with the truth about the AIDS epidemic in China,” Gao told the BBC journalist then.

The sadness of a fighter

While Western media tends to focus on the first joyful moment of a dissident’s arrival, it often doesn’t portray the sadness of leaving China and the fear of beginning life in a new country with a different culture, a new language, and no relatives or friends. Though there are more than 400,000 Chinese immigrants in New York, Gao feels very alone.

It has been a long and difficult journey for Gao, who, with the help of some Chinese students and caring people from around the world, is finalizing the contract for her third and last book.

“After the last book is published, I am ready to die,” said Gao, who lives in a one-bedroom apartment in Hamilton Heights that Andrew Nathan, a professor at the Weatherhead Institute of Columbia University, helped her find. For her living expenses she relies on donations, and she relies on Medicaid to deal with her various medical issues.

The help she receives bothers Gao, a proud woman who never before had to ask anyone for help or worry about the small details of daily life. On the contrary, she used her money to help AIDS patients in China.

“I never received any donations to me personally. All the money I spent on AIDS patients was my own,” she has repeatedly said.

Two years ago, a person from Hong Kong insisted on giving her money, but she refused, asking the person instead to buy her books from the publisher and send them to the rural communities in China who Gao felt needed to understand the AIDS epidemic. Similarly, she recently asked a donor to pay for her monthly rent instead of giving the money directly to her.

Gao, who suffers from several debilitating ailments–heart disease, blood clots, and digestive issues that arise because she has only one fourth of her stomach left–needs help to cook and to get to the hospital when she has appointments. Gao has had several caretakers since she moved here, always younger women, who live with her in shifts. Sometimes the young woman is a Columbia University student. Gao is not happy with some of her companions. After all, they are well-meaning but non-professional, part-time caretakers. Gao also says she is bothered that some of them pursue what she calls Western lifestyles, which can include dating older Western men, sleeping late, or squandering money.

In addition to the young woman who lives with her, Gao relies on a group of over 20 young Chinese students or recent graduates who visit her often; yet, she claims she can take care of herself most of the time.

“I am fine being alone at home,” Gao always insists. But she is not. Last year, she was alone at home one night when she fell down and injured her head. “I had to use my hands to cover my wound and waited for several hours until my care-taker came and took me to the hospital. I am fine with suffering like this because I need to finish what I need to finish.”

Saying “no thanks” to the Chinese dissident community

While a lack of reliable help bothers Gao, unasked-for “warm hearts” bother her as well. Although Gao trusts the young Chinese people who visit her often, she does not like to receive Chinese human rights activists or other dissidents. For this reason, she is reluctant to answer her door or her phone.

“Please help me refuse that woman’s request to visit,” Gao frequently asks of her student visitors, who often help her type emails to Chinese dissidents who approach Gao.

Since Gao moved to Manhattan, she says that many from the “1989 [Tiananmen uprising] dissidents” group and Falun Gong, which claims to be a religious group and is known for opposing the Chinese Comunist Party, have tried to approach her, but she has always declined.

“Let me tell you, yes, some officials of the Chinese Communist Party sometimes lie, but those who are against it can lie as well,” she said. “Politics is not that simple.”

In Gao’s eyes, there are many Chinese activists in the U.S. using politics and the suffering of poor people as tools to bring themselves money and advantage. That is not a community where she feels she belongs. Gao does not side with either the Chinese Communist Party or political dissidents. She prefers to focus on helping those suffering from AIDS in the existing–and ignored–AIDS villages in rural China. But she feels powerless to do anything for them, and feels her life in the U.S. becoming more and more meaningless. In fact, in organizing events about children with AIDS in China, she started to realize this is simply not an “attractive enough” topic even among Chinese students in New York.

For Gao, living in the U.S. is the same as “living in degradation,” and to live in a nursing home–a suggestion made by some of her American friends–is even more degrading.

“I prefer to draw a perfect period for my life,” Gao said.

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Hongxiang Huang

Hongxiang Huang, an MPA-Development-Practice student at Columbia University, is a freelance journalist focusing on development issues and China-related topics in South America and Africa. Mainly writing for Chinese media like Southern Weekly, he also wishes to enhance Western understanding about China.
  • baopuANDu

    I remember having a conversation some four years ago with a coworker in Shanghai on HIV/AIDS awareness day. We were arguing, sadly enough, because she believed that you could get HIV/AIDS from toilet seats, kissing and the like. I was trying to tell her that though these are somewhat frequent misconceptions that they are in fact untrue. There was a women who was a government representative in the lobby handing out literature and balloons along with some young volunteers with their red arm bands. She interjected and informed my coworker that I was correct. She went on to say that, in fact, there are “nearly a million” people living in China with HIV/AIDS. I was so happy that she was there on behalf of the government, at first. Then I realized how badly misinformed she was as well. Nearly a million!?! In a country of 1.3 billion! I can only hope, four years later, sex education and disease awareness have improved since then.