“Do any doctors or nurses need a ride today?” Thus ran a typical text message sent out by a group of volunteers in Wuhan, the epicenter of the coronavirus outbreak. After the city’s bus system shut down in January, exhausted medical staff – some working 24-hour shifts to conserve their limited supplies of protective equipment – were left without rides to work. Han Yue, the head of a local charity, organized an impromptu group of drivers. Hundreds of people volunteered to ferry frontline medical workers and supplies day and night. By late January, there were more than 4,000 volunteer drivers in the group. The group was later shut down by the authorities, in favor of a private company offering ride-sharing services for a fee.
China has never had a strong civil society, but from 2003 to 2012, under leader Hu Jintao, hundreds of groups sprang up in response to HIV, SARS, and other crises. These groups blew the whistle on local corruption and early outbreaks of disease, and mobilized villages to care for the sick and vulnerable. We helped to start and train some of those groups.
We cannot do that now. Since 2013, current leader Xi Jinping has launched a sweeping crackdown on civil society, journalists, and public interest lawyers – a campaign of arrests, detentions, and shutdowns that has terminally weakened China’s community networks. Who now would dare to mobilize their community to demand health services, call for accountability for corruption, or warn about the next emerging outbreak of infectious disease?
It was not always this difficult. The early 2000s saw a brief flowering of civil society organizations in the wake of the HIV and SARS outbreaks. This began in Henan province, where local officials ran a for-profit blood sale industry that accidentally transmitted HIV to thousands of villagers. Grassroots whistleblowers, including the courageous women doctors Gao Yaojie and Wang Shuping, who saw some of the first cases and reported them to the public, were hounded into exile overseas. Chinese and foreign journalists trying to expose the disaster were beaten and detained. Similar censorship efforts undermined the government’s SARS response.
But in the wake of this and other disasters, with support from U.N. agencies and private foundations in China and overseas, a new independent civil society briefly blossomed. Thousands of nongovernmental organizations (NGOs) sprang up across the country, working on issues ranging from food safety to asbestos elimination and HIV prevention. Two of the authors founded NGOs, Yirenping and Asia Catalyst, that worked in partnership with many of these grassroots organizations, training them in strategic planning, financial management, fact-gathering, and policy advocacy.
Many local officials over time developed strong working relationships with local community-based NGOs, which blew the whistle on corruption, drew attention to critical health gaps, and advocated for policy changes and affordable medicines. For example, in 2008, a toxic milk powder scandal revealed that milk and infant formula had been contaminated with melamine, causing kidney stones in infants. The World Health Organization called the crisis one of the largest food safety events in its history. Despite an attempted government cover-up, civil society activists and news media played a crucial role in raising the alarm and supporting victims to litigate, leading to regulatory reforms and the establishment of a national food and drug safety agency.
Similarly, this growing, still young Chinese civil society responded to the 2008 Wenchuan earthquake, which killed tens of thousands of people and left thousands homeless, by playing a crucial role in disaster relief, social services, and charity work. It also spearheaded litigation against the local government, in the pursuit of accountability and stricter building regulations. By 2012, there were hundreds of thousands of civil society groups around the country, many unregistered or registered as private enterprises, working on a range of social issues. Chinese civil society was still quite weak; it was just beginning to develop. But it still made important contributions to strengthening public health responses and holding authorities accountable for their health commitments.
Unfortunately, that movement is now largely history. In the past seven years, under Xi, the government has launched a fierce crackdown on those groups. In 2017, thousands of foreign NGOs came under pressure when a new law targeted them with government control measures. Domestic critics were detained, disappeared, and reportedly tortured. Hundreds of Chinese rights lawyers were detained in 2015-16; leading feminist activists were detained on the eve of International Women’s Day; and dozens of labor activists were detained in southeast China.
In 2020, Chinese volunteers and others who wanted to mobilize funding and supplies, or provide support to disadvantaged groups in need under quarantine – including disability rights groups helping persons with disabilities get medicines and food, and LGBT groups trying to help people living with HIV to get treatment – have had to operate without a strong network of existing NGOs, because of these sweeping crackdowns.
While China lifted policy obstacles for NGO registration, and the number of registered social organizations has steadily increased over the past few years, most of these are close to the government and are carefully monitored. It remains very difficult for NGOs working with marginalized and sensitive populations – such as organizations working with sex workers, LGBTQ, people who use drugs, or petitioners – to register officially, and independent human rights groups are virtually nonexistent. The lack of legal status means that these NGOs cannot do public fundraising, open bank accounts, rent offices, and pay staff.
Platforms for engagement with the government have also been dismantled. The China Red Ribbon Beijing Forum, a platform launched in 2010 by the Chinese Association on STD and AIDS Prevention and Control with support from U.N. partners, was intended to enable frank discussion of human rights issues in China’s HIV response. Over the years, the Forum took on a number of sensitive topics, such as compensation for victims of China’s blood disaster, drug detention centers, and the compulsory detention of female sex workers.
This innovative and bold approach was an excellent model for problem-solving that could have been adopted in other sectors as well. Instead, the space for its functioning was squeezed shut, and the Forum has been silent and inactive for many years. This has closed down one of the few channels through which AIDS NGOs could engage with policymakers.
Today, as a result of this closing space for civil society in China, there are few people left who are able to work with marginalized groups. Fewer still have the independence to document rights abuses, advocate on policy issues, and promote transparency and accountability on such issues as health sector corruption, stockouts of medicines, or discrimination by health care workers. There are also fewer platforms for civil society to share its information with the government. While volunteers mobilized donations in the COVID-19 crisis, the government has strictly limited fundraising to five organizations, one of which – the China Red Cross – has come under fire for mismanagement and corruption.
The censorship of whistleblowers appears to have slowed Wuhan’s early response to the coronavirus by weeks, or possibly longer. One study concluded that had China begun the measures it ultimately used to control COVID-19 two weeks earlier, 86 percent of the nation’s cases could have been avoided. Censorship and the targeting of rights defenders has cast a chill over advocacy in China. Citizen journalists like Chen Qiushi, and two others who have gone missing, might have been grounded in NGOs in the past, but now operate as lone wolves – and are easily targeted and “disappeared” if their muckraking draws too much attention to the problems they expose. Chinese groups that used open government information requests to boost the transparency and accountability of the government in the past now have difficulty finding lawyers willing to help them.
Nonetheless, the crackdowns have been costly – not just for China, but for the world. With HIV, tuberculosis, and Ebola, the world has seen over and over that community mobilization is one key to reversing outbreaks and bringing them under control. We’ve seen in the Ebola response how critical it is, in turning the tide of an epidemic, to have the trust of community leaders and community groups engaging in health education, outreach, and advocacy on individual cases – in getting people the health care they need. Likewise, the global HIV response has been built on the backs of community-led NGOs that do crucial outreach, prevention, and testing and treatment advocacy, reaching those most marginalized, persuading them to come in for a test, and ensure they adhere to treatment.
These community systems supplement the formal health system, because they enjoy the trust of those who are most vulnerable. An authoritarian approach is short-sighted; it weakens a country’s immune system, leaving the whole world vulnerable to the next outbreak. By clamping down on civil society and community groups, the state has weakened public health and repeated the errors committed during the SARS and HIV epidemic. In so doing, the state may have undermined its long-term ability to respond to future infectious disease outbreaks. COVID-19 is under control in China, for now – but how will the world know about the next pandemic without these independent voices?
Sara L.M. Davis is a human rights expert and activist at Graduate Institute.
Lu Jun is the founder of Yi Renping.
Shen Tingting is an HIV/AIDS and human rights advocate in Beijing. From October 2012 to February 2020, she was the Director of Advocacy, Research and Policy at Asia Catalyst.