The enormous brick fortress in West Harlem was built in the mid-1970s as a visionary housing project, a new model for an affordable, self-contained urban community. Today, on a balmy September afternoon, it is a low-income housing compound lined with security cameras, guards, and triple-locked doors. A few drunks shouting at nobody in particular linger outside. Pound for pound, though, the most dangerous person living here may just be a diminutive 85-year-old Chinese grandmother dressed in a stylish purple sweater set with black leopard spots sent by her daughter in Canada.
This is not a slum. Neither is it where you would expect to find an internationally known human-rights warrior living out her golden years. In her one-bedroom apartment, Dr. Gao Yaojie — known to many as “the AIDS Granny” — moves with great difficulty through her tidy clutter and stacks of belongings. In the small kitchen, she stirs a pot of rice and bean porridge, one of the few things she can digest. She lost most of her stomach in surgery after a suicide attempt four decades ago and suffered multiple beatings during the Cultural Revolution.
A large bed where Gao’s live-in caretaker sleeps overwhelms the living room. In Gao’s bedroom, two twin beds are piled with stacks of books, photos and quilts. Her desk is heaped with papers, medications, and yet more books. Gao’s computer is always on, often clutched to her chest as she lies working in bed.
“I left China with one thing in each hand,” Gao says to me in Chinese. “A blood-pressure cuff to monitor my high blood pressure and a USB stick with more than a thousand pictures of AIDS victims.”
Before she agreed to meet me at all, she set rules via email: There would be no discussion of China’s politics, the Communist Party’s future, or the myriad issues that concern other dissidents. These are inexorably tied to her own life, but Gao does not want to be known as a multipurpose Chinese dissident. A lifetime of looking over her shoulder for danger has left her wary. She never learned English.
“I seldom see anyone,” she says. “Many people from China are very complicated. I don’t know what kind of intentions they have. I see them as cheating to get food, drinks, and money. They don’t really do any meaningful work.”
Gao believes she is watched here, just as she was in China for so many years. Given China’s well-documented pattern of stifling critical voices abroad, it’s impossible to rule out that someone is monitoring or harassing her, even in Harlem.
Money is tight. She had a fellowship through Columbia University for her first year in the U.S. Now she gets by on private donations that cover roughly $35,000 a year in expenses, the largest of those being her rent at Riverside. She has a few teeth left and can’t afford dental work.
She spends her days in bed, sleeping, writing, researching online, and obsessively analyzing what she witnessed in China in a lifetime that bridged tremendous tumult. For hours, she clicks away on her keyboard, emailing contacts back home for information and putting final touches on her newest book. She learned to use a computer at age 69.
This will be Gao’s 27th book and the ninth to chronicle China’s AIDS epidemic, a public health catastrophe that decimated entire villages and put her on the government’s enemy list. “You wouldn’t understand the earlier books, they were too technical,” she says, flashing a near-toothless grin.
“Although I am by myself, appearing to be lonely, I am actually very busy,” she says. “I am turning 86 soon and will be gone, but I will leave these things to the future generations.”
Her unplanned journey from Henan province to Harlem began 17 years ago, six months after she retired as a gynecologist and professor at the Henan Chinese Medicine University hospital in Zhengzhou. She went from being a retired grandmother to China’s first and most famous AIDS activist, and became such a thorn in the side of the regime that she eventually fled to New York for safety, away from her family and everyone she knows.
She turns to her computer and pulls up a photo of a gravely ill woman with an incision up her abdomen. Gao did not set out to become a dissident.
“I didn’t do this because I wanted to become involved in politics,” she says. “I just saw that the AIDS patients were so miserable. They were so miserable.”
In April 1996, Gao, then 69, was called from retirement to consult on a difficult case. A 42-year-old woman, Ms. Ba, had had ovarian surgery and was not getting better: Her stomach was bloated, she had a high fever and strange lesions on her skin. She grew sicker and her doctors were stumped. After finding no routine infection or illness, Gao demanded an AIDS test for the young mother.
Gao knew from her work that AIDS had entered Henan, the heartland Chinese province. Yet her colleagues scoffed: How could a simple farmer have AIDS? China had only a handful of confirmed cases. The government said AIDS was a disease of foreigners, spread through illicit drugs and promiscuous sex.
Gao insisted on a test. The results came back; Ms. Ba had AIDS. Her husband and children tested negative, which puzzled the doctors further. The patient was not a drug addict nor a prostitute, so Gao began to investigate. She determined the source was a government blood bank — Ms. Ba’s post-surgical blood transfusion infected her with HIV. “I realized the seriousness of the problem,” Gao later wrote. “If the blood in the blood bank carried the AIDS virus, then these victims would not be a small number.”
With no treatment available, Ms. Ba died within two weeks. Her husband, Gao remembers, spread a cot on the ground in front of her tomb and slept there for weeks in mourning.
Witnessing his grief launched Gao on a relentless campaign. She began investigating AIDS in Zhengzhou and nearby villages, conducting blood tests, compiling data, and trying to educate farmers about the risks carried by blood donations and transfusions.
Over months and years, her research into the epidemic took her across much of rural China. What she found astounded her: villages with infection rates of 20, 30, 40% or more; whole communities of AIDS orphans, zero treatment options, and little awareness of what was sickening and killing a generation of farmers. Worse, the population did not know how the disease spread. The numbers of how many were infected and died remain secret, the officially released data almost universally believed to be far too low.
Gao had finally found the cause. “Even now, the government is lying, saying AIDS was transmitted because of drug use,” she says. “The government officials were very good at lying.”
Among the cruelest of these schemes was the “plasma economy,” a government-backed campaign from 1991–1995 that encouraged farmers to sell their blood. Fearing the international AIDS epidemic and viewing its own citizens as disease-free, China banned imports of foreign blood products in 1985, just as disease experts began to understand HIV and AIDS were transmitted through blood.
Modern medicine requires blood, and importantly, blood plasma, which makes albumin, an injection vital after surgery and for trauma victims. It is also used in medications for hemophilia and immune system disorders. And plasma is a big-money business — and a deeply controversial one — worldwide. Giving plasma is more time-consuming and painful than donating blood, so fewer people contribute for free, and it attracts people who need quick money: In the 1990s, inmates in United States prisons were pulled into a plasma donation schemes; today, Mexican citizens cross into the United States to border town plasma collection stations.
Though the donors of Henan got a pittance for their blood, middlemen grew relatively wealthy on what was believed to be a pure, untainted plasma supply. Plasma traders worked to convince Chinese people traditionally opposed to giving blood — thought to be the essence of life — to sell it. Villages were festooned with red sloganeering banners: “Stick out an arm, show a vein, open your hand and make a fist, 50 kuai” (at the time, about $6), “If you want a comfortable standard of living, go sell your plasma,” and “To give plasma is an honor.”
Local officials in some places went on television, telling farmers that selling plasma would maintain healthy blood pressure. (It doesn’t.) Traders pressured families, especially women. Since females bleed every month, the cracked reasoning went, they could spare a few pints for extra income.
Though some villages were spared, often thanks to foresight of skeptical local leaders, Henan’s poorest places, especially those with bad farmland, jumped into the blood trade with gusto. Henan officially had around 200 licensed blood and plasma collection stations; it had thousands of illegal ones. Collection stations were overwhelmed. Needles were reused time and again, as were medical tubes and bags. Sometimes, stations sped up the process by pooling blood, unknowingly re-injecting people with HIV-tainted red blood cells.
The system became a perfect delivery vehicle for HIV. Thousands upon thousands of the farmers who sold plasma to supplement meager earnings left with a viral bomb that developed into AIDS. In the years before education and life-extending antiretroviral drugs, it was a death sentence.
As Gao made her discoveries, another doctor, Wang Shuping, was finding the epidemic further south in Henan. Both tried to get provincial health officials to act, to warn people about the risk of AIDS via blood donations and transfusions, and to shut down the system. Both say their bosses and government officials told them to keep quiet.
For several years, Gao, Wang, and other doctors spoke out, but the scandal was hushed up. When people started getting sick and dying en masse, the epidemic became harder to hide.
By 1999, some brave Chinese investigative reporters started writing about the plasma economy and AIDS epidemic. In 2000, international media seized on the story, and Gao became a favorite media subject, seemingly unafraid, always willing to provide detailed statics and talk about what she had found in the hidden epidemic.
Gao and the other doctors finally convinced China to ban plasma-for-cash programs and shut down unlicensed blood collection centers, but the damage was already done to thousands infected with HIV and hepatitis. (And despite the reforms, smaller illegal plasma operations still continued to pop up in rural villages.) This was not without pushback: Gao was threatened, blocked from speaking, had her own photos of AIDS victims confiscated, and believes her phone was tapped for years. Then there were the young men who followed her everywhere, forcing her to sneak out to do her work in rural areas under cover of night.
Gao continued to work to educate rural people about the disease and push for legal rights for victims. She inspired dozens of young volunteers, like the activist Hu Jia, to travel to Henan to donate money, food, and clothing over the years. But as the government tightened its controls and increased threats, volunteers stopped going. Gao, targeted more than most, kept sneaking in. She traveled undercover, visiting families and orphans and passing out her pamphlets.
Her charity embarrassed local officials who weren’t doing the job, and several became enraged. In one particular AIDS village, Gao learned the mayor had put a 500 yuan ($82) bounty on her head. Any villager who caught her in town and told police would get the huge sum. In all the years she visited, donated, and brought journalists in to investigate, Gao says, “they didn’t even try to catch me, they didn’t want to turn me in.”
Gao focused her attention, and her own family’s bank account, on the AIDS orphans, chastising the government to admit what had happened and make reparations. For that she became a target, as did those who accepted her gifts. Local officials wanted credit for helping AIDS victims, though according to her, most did very little.
“I gave them money,” she says, nodding toward a photo of a young woman. “She sold blood at age 16 and died at 22. I gave her 100 kuai ($16). If you gave them money and other things, they had to say it came from the government; they would have to thank the Communist Party.”
China has never provided a full accounting of the infection rate and death toll from the plasma disaster in Henan and surrounding provinces. Low estimates say 50,000 people contracted the virus through selling blood; many more sources put the number at at least 1 million. Another million may have contracted HIV through transfusions of the contaminated blood. Gao believes as many as 10 million people might have been infected, but she is alone in that high estimate.
China recently acknowledged AIDS is its leading cause of death among infectious diseases. In 2011, a joint U.N.–Chinese government report estimated 780,000 people in China are living with HIV, just 6.6% of them infected via the plasma trade, in Henan and three surrounding provinces. The real numbers are subject to debate and almost certainly higher, say global health experts. That figure also includes China’s original, larger AIDS epidemic that entered from Burma into Yunnan province along the drug trade route in 1989, about which the government has been much more open. There is no way to trace how many of China’s acknowledged AIDS cases are linked to the Henan plasma disaster. This is not an accident.
“You understand the situation?” Gao asks. “One thing is lying and the other is cheating. Fraud. From top to bottom, you cannot believe in government officials at any level. Cheating, lying, and fraud are what they do.”
When Gao was 5, her parents decided she was too much of a tomboy and had her feet bound, even though the cruel tradition was dying out. Gao’s feet were bound (“loosely,” she says) until she was 11, when her family moved near relatives who had more modern opinions about girls. In those years, her mobility curtailed, and she became a voracious reader. More than seven decades after removing the bindings, Gao still walks with a hobble.
In one of the volumes of her autobiography — she has written several, but only one has been translated into English — she describes arguing her way into medical school at a time when women were not widely accepted. Gynecology was the only field open to female doctors, so that’s what she studied. At the same time, she married and had three children of her own. Her husband, Guo Mingjiu, was gentle and quiet, a hardworking doctor who didn’t mind looking after the household while his wife immersed herself in the maternity ward.
Their neighbors gossiped about the strange female doctor living at the hospital during the week while her husband took care of the kids and the home. The arrangement made practical sense, though, she says, because her husband had a “cushy” government job. Gao was at the mercy of labor and delivery — medical events that couldn’t be scheduled.
Gao laughs at those old neighbors and shows off a treasured family photo from that era, the mid-1960s. She and her husband bedecked in Mao suits with their three young children posed in front of their home, all smiling, Gao cradling her favorite cat. “This cat lived to be 9 years old,” she says proudly, her voice trailing off.
Everything changed when the Cultural Revolution, Party Chairman Mao Zedong’s disastrous campaign of officially sanctioned class warfare, seized China. As an educated doctor, Gao was among the unlucky, branded the elite class and a counterrevolutionary. After months of being beaten and denounced by Red Guards, on Aug. 26, 1966, Gao tried to kill herself by taking 40 tablets of the sedative thorazine. The date is burned into her memory.
“To kill myself in protest against the bitter humiliation that I was suffering, and to rid myself of the unbearable pain…seemed to be the only way out,” she wrote in her autobiography. She awoke from a coma two days later to the sound of her children crying. “Finally, I found the greatest inner strength of a woman — motherhood — to withstand attack and hold firm.”
She would need it. The following year, her 13-year-old son was accused of drawing an anti-revolutionary cartoon on the wall of a public bathroom. Authorities falsified his birth date to indicate he was 16, then sent him to prison for three years. Gao herself ended up doing more than a year in a forced labor camp — an often brutal system of quasi-imprisonment that was common punishment for political prisoners.
In 1973, Gao and her family were reunited and began to piece their lives back together. Her children, including the son who was imprisoned, excelled in school and prepared for college. Gao resumed her hospital duties, walking into another strange chapter that placed her in the crosshairs of one of China’s most gruesome interludes: enforcing the one-child policy.
“The obstetrics ward was hell on earth,” Gao wrote. “Most of the cases were late-term abortions and labor inductions. Since we had specific instructions to make sure that no living babies left the hospital, we sometimes had to induce abortion on a woman who was at the end of her full-term pregnancy, which made my stomach churn.”
Dozens of times, hospital staff managed to sneak babies out to adoptive parents, or even back to waiting relatives. Gao remembers one particular baby boy smuggled out of the hospital. Years later she met him; he was unaware of his past. Like his adoptive father, he’d become a public security official, part of the machine responsible for enforcing rules like the one-child policy. As she has done for decades at many important moments in her life, Gao wrote a poem about it:
Greed breeds riches, rich bring along power,
Day and night, night and day,
You wine and dine, dine and wine your own self,
Talking money, talking power,
Like a vampire, you have the people’s blood on your hands.
Blind to their suffering, deaf to their sharp words,
The gully of greed can never been filled.
For more than a decade after she met Ms. Ba, that first AIDS patient, Gao’s life in China was full of friends, young volunteers, activity, and people working toward a common purpose. Her home in Zhengzhou was a gathering place for conscience-driven activists, despite the perpetual presence outside of a team of men assigned to monitor Gao’s every move. The feeling of a dragnet closing in had an undeniable effect on her psyche.
Gao was chastised for speaking out, and put on a leash that grew shorter each year. It wasn’t just authorities who tried to restrict her. Gao’s husband, ever tolerant of his wife’s rebellious streak, finally took over household spending and gave her a strict allowance after she spent all her award money and most of the family savings on AIDS orphans. Her increasing profile earned her the nickname “AIDS Granny” across China but alienated her own family.
When she planned to travel to the U.S. to receive an award in 2007 from the Vital Voices Global Partnership, a group co-chaired by then-Sen. Hillary Clinton, local government officials flew into a fury. They pressured her son, Guo Chufei, the one sent to a prison camp at 13 and now a teacher, to stop her. Gao says he fell to his knees begging, but she went anyway. Both mother and son say the same thing today: Gao is a good doctor, but “maybe not the best mother.”
When I reached him by phone recently in Zhengzhou, Guo declined to speak about his mom. “I need to live a peaceful life,” he said simply.
That moment was a turning point for Gao. Her loyal husband, who had supported her dangerous work for so many years, was nearing the end of his life, and her own son was humiliated. The dragnet was closing in.
“They put me under house arrest; the real house arrest. Do you understand?” she asks urgently. She speaks of the quasi-legal detention that has trapped many well-known Chinese who run afoul of the regime; their movements and contacts severely limited even though they are not charged with any crime. Gao’s close friend Hu Jia is now in that limbo.
According to cables released by WikiLeaks from the then-U.S. ambassador to China, Vice Premier Wu Yi — the highest-ranking woman to ever serve in China’s communist party government — intervened personally to force Henan officials to allow Gao to travel to the U.S. to accept the award. The U.S. ambassador writes that Henan officials feared Gao would embarrass them and ruin their chances of promotion. A personal appeal from Sen. Clinton to Wu Yi pushed the trip through in the end.
When she made that trip to the U.S. in 2007, Gao says she began laying the groundwork for her permanent escape from China. “I needed to leave to protect my children and my family,” she says.
Gao still speaks fondly of both Wu Yi and Clinton. And she still changes the subject when asked how she managed to flee China permanently in 2009, flying to New York from the southern city of Guangzhou, shortly after her husband died. She smiles coyly, making it clear she will protect those who helped her get out.
Only after she left did China’s own media report on how the beloved “AIDS Granny” had been harassed and threatened for years.
No government official was ever held to task for the AIDS crisis in Henan. Instead, the men in charge of the province during the plasma scandal and its aftermath have risen to the highest echelons of China’s national government. The topic remains taboo — as recently as June, provincial officials banned state-run media from reporting on AIDS-afflicted villages. Li Keqiang, provincial governor of Henan from 1998–2004, was accused of helping to lead the cover-up of the AIDS scandal. Earlier this year, he was promoted through the ranks to become the Chinese premier, the country’s second-most powerful politician.
Henan AIDS patients are threatened to keep quiet, and thugs have beaten and chased journalists who visit the epidemic zone. By forcing out the most vocal experts and intimidating victims and journalists, the government has effectively managed to silence the issue.
Gao is not the only high-profile casualty of China’s crackdown on AIDS activists. Dr. Wang Shuping, perhaps the first to expose the problem in Henan, fled China for the U.S. more than a decade ago. Outspoken Hu Jia served three and a half years in prison for his involvement in creating a human rights petition and now lives in a virtual prison at home. Doctor and educator Wan Yanhai lives in exile in Connecticut after threats of arrest for leaking government documents about the Henan epidemic.
Today, China has programs offering free health care and antiretroviral drugs to AIDS sufferers and is more open about preventing transmission through drugs and sex. Henan AIDS victims now receive monthly payments under law, but many still travel to Beijing every year on World AIDS day Dec. 1 to beg for more compensation, aid, and acknowledgment. They routinely are harassed or detained before they even board trains for the capital.
Months before becoming premier, Li held a groundbreaking meeting with AIDS patients from Henan and promised compensation. He reportedly also mentioned Gao. She was not impressed.
“Li Keqiang. I’ve met him,” Gao says dryly. “He is very good at being a government official.”
At the same time Li was rising to national prominence, along with another former Henan official, the pressure on Gao ramped up to unbearable heights.
Two decades after the plasma catastrophe, Shangcai County, a particularly poor district in Henan, retains the eerie atmosphere of a place bombed. After news broke about Henan’s AIDS crisis in 2000, China’s central government tried to quantify and contain the epidemic by designating 38 villages as the worst hit and most in need of money and medical aid. (Critics maintain the list is inaccurate and incomplete.) More than half of those villages were in Shangcai, a district of just over 1 million people to the south of the province.
Development is sparse and buildings are run-down. Concrete barriers block the one-lane road through the county seat from connecting with a highway to larger, wealthier places. The biggest, newest building is an AIDS hospital. China’s central government has made a point of funding health care centers in the epidemic zone, but economic development that has swept the rest of the country is largely absent here.
Locals say many twenty- and thirtysomethings in Shangcai stay close to home rather than going to work in far-off factories and send money home, like millions of others their age. Because they were born during and lived through the AIDS catastrophe, even those who are HIV-negative fear discrimination by virtue of their birthplace. If they have the virus, free lifesaving drugs are tied to household registrations, only available once a month in government dispensaries in their hometowns.”Many people stay here rather than taking any risk,” says a 35-year-old resident who didn’t want to be identified. He explains it’s simply too expensive to go work in a factory hundreds of miles away then return every month to refill a prescription.
In the years since it helped create then failed to contain the epidemic, the government has at times gone to absurd lengths to conceal it. In May 2012, ostensibly to clear farm fields for production and urban development, the government ordered families to demolish and clear millions of tombs across four counties. Families in this part of Henan cluster graves, piled-high earthen mounds, on the edges of their land, rather than inside generic public cemeteries. In the Chinese heartland, paying tribute to one’s ancestors is fundamental; failure to do so, tradition holds, can bring generations of bad fortune. In all, 3 million tombs were to be cleared, their contents shifted to orderly rows in modern public cemeteries. Some bodies were moved, others not.
The campaign sparked fierce opposition, mostly among older farmers. In the uproar, though, one obvious fact went unspoken: The region marked for tomb demolition encompassed some of Henan’s worst-hit AIDS regions. Gao and others believe the tomb-clearing was intended to destroy evidence of the epidemic. There is no definitive proof, only the coincidence of location.
“When so many people died so close together, there were all these tombs,” Gao says, bringing up a photo of the tombs on her computer screen. “You see how many there were? They surrounded the villages. So many people.” The earthen mounds, she believes, were evidence the government couldn’t have lying around.
Many of the region’s residents are seasonal laborers. When millions returned home for Chinese New Year in February, they rebuilt the tombs in protest, in many cases piling mounds even higher, almost a million altogether, almost overnight. The fertile fields are now dotted with new graves, leaving the unsettling impression that generations died just this year. Rather than making graves disappear, the policy inadvertently made them more pronounced.
Henan finally stopped the tomb demolitions, proving that mass protest sometimes works, even in rural China.
When I visit Gao in Harlem a second time, just a few weeks after our first meeting, she seems far more fragile and confused. Her speech is scattered, sometimes rambling of long-dead relatives and weeping over what has become of her life. Or maybe she just feels comfortable enough now to be herself. “You came back a second time,” she tells me, “so I can tell you’re sincere.”
She speaks of being monitored by Chinese agents and even other Chinese dissidents in New York. The night before we were to meet, she emailed to say that blind Chinese dissident Chen Guangcheng wanted to join our interview and I should tell him it was an exclusive, with her only. There is no evidence Chen contacted her; it’s impossible to rule out that someone else did.
Fleeing China changed her life but clearly did not end her anxiety. “They will scold me again when your article is published,” she says, stone-faced.
Gao tears up talking about her family. To get through the difficulty of being alone, she says, despite her health, her age, all that she’s endured, Gao keeps writing. She believes that without her books, the AIDS victims of Henan will be forgotten. “I came here to write in peace,” she says. “I wanted to write. I could not write in China.” Her tough shell, which she clearly put on for our first meeting, seems worn away by years of fighting.
“I want to stop, but I cannot,” she says. “I am too old. I feel powerless to all things. The purpose of writing these books is to ask for justice for the victims and leave it for the later generations to judge. It is also a mental comfort for me.”
She suddenly points to her computer screen and a photo of a skeletal man in his thirties, sprawled atop a thin cot in a barren farmhouse. “Look. This is Cheng Tiecheng. He sold his blood when he was in his thirties. His entire family died.”
Gao moves purposefully to the next case, reciting details of sickness and death with the clinical language of her profession. AIDS orphans, young mothers who died after selling their blood, patients who had tainted blood transfusions and never understood what was killing them. Chronicling the epidemic brought her here to this solitary place, and she fights any distraction, even her own sadness.
She is understandably suspicious of the people who make her life easier, including dozens of Chinese students at Columbia who volunteer to visit her. Many say they never heard of her in China, which is entirely possible. Yet she worries they will report on her and cause more trouble.
For now, Gao has chosen solitude, perhaps the closest thing she can find to peace. Her daughter wanted to visit recently from Canada. Gao said no. “I told her to come when I am really sick. After I die, take my ashes home. Do not build a tomb for me. Today’s society in China is very chaotic, always moving and changing, so I will not be kept in a tomb.”
The remains of her husband, who stood by her as she devoted their golden years to sick strangers and AIDS orphans, are waiting back in Henan.
“I want my ashes and my husband’s ashes spread together in the Yellow River,” Gao says, clasping her hands firmly and nodding decisively. “There will be nothing left.”