Tea Leaf Nation
China Begins to Bring Mentally Ill ‘Back to Society’
Mental illness has long been stigmatized there. Now a new law is helping patients and families seek treatment.
HARBIN and BEIJING — On midwinter days in the far northern Chinese city of Harbin, breath hangs in the air and tears crystallize on eyelashes. On Jan. 3, 2008, as Zhu Ancheng recalled, his angry shouts turned into white vapor as two police officers helped his sobbing parents force him into a car. He was driven from their home to one of the city’s psychiatric hospitals, where the then-25-year-old was diagnosed with schizophrenia, a condition that runs in his family. For reasons still unclear to him, he stayed in the hospital for five years, until January 2013.
One of schizophrenia’s acute cruelties is that it often transforms those in the brightest time of their life, hitting in late adolescence or early adulthood. Zhu was the first to attend college in his family of street vendors. After graduating from Harbin Commercial University in 2006, he took a job in the marketing department of a four-star hotel, traveling around the city meeting potential clients and reviewing contracts. But within two years, his rags-to-riches story began to evaporate: Zhu grew sluggish and quarrelsome, found it difficult to communicate, lashed out at his family, quit several jobs, and, in late 2007, began “to hear constant voices,” as he put it.
Worldwide, acute mental disorders, such as schizophrenia and bipolar disorder, afflict between 1.5 and 3 percent of the population. The progressive toll of mental illness is painful anywhere, but often especially wrenching in developing countries, including China, where rural poverty, lack of access to medical resources, and fear or ignorance about neurological disorders frequently place all the burden for care and comfort on ill-equipped relatives. Yet Zhu’s story has a happier ending than many — thanks in part to recent, if long overdue, efforts to make mental health care in China more accessible and more humane.
For a long time, mental illness in China was invisible. Late Communist ruler Mao Zedong’s ideology-driven vision of a rational society officially made no concession for it. After 1949, his new government set about closing most of the psychiatric hospitals opened since the 19th century by Western missionaries. (Some asylums have been used to involuntarily lock up political dissidents, as happened in the Soviet Union — a practice that has not entirely ended in China.) Even earlier, as Arthur Kleinman, a Harvard University psychiatrist who has researched mental illness in China since 1978, explained to Foreign Policy, psychosis meant social death in China. “In traditional village society, seriously mentally ill people were defined as not fully human and removed from their network of connections,” said Kleinman. “They were not allowed to give or receive gifts at weddings, funerals, and other social occasions. The level of stigma was both deeper and qualitatively different than in other [countries].”
But beginning in the late 1980s, Chinese disability advocates began to petition for passage of the country’s first mental health law, hoping to clarify both the rights of people with mental illness and the state’s obligations to them. But it took more than a quarter-century until the law was finally enacted, in May 2013, with the broad goals of expanding access to quality care and sharply limiting involuntary confinement. “It’s a very important step forward — a serious attempt to engage an enormous problem,” said Kleinman, who added that he is cautiously optimistic. “The real issue is implementation; that’s true of any law, and especially in China.”
China’s opaque legislative process makes it difficult to trace the law’s progress. But Chinese society is starting to realize, and discuss, the profound toll of mental illness. China is home to an estimated 173 million people with mental illness, and 158 million of those never get professional diagnosis or treatment, according to research published in the Lancet, a British medical journal. In China, major depressive disorder is now the second-leading cause of “years lived with disability,” according to the latest Global Burden of Disease survey by the World Health Organization. As the country ages and urbanizes, rates of mental illness, particularly depression and dementia, are also rising.
The most heart-breaking cases are often in the poorest and remotest areas. As young Chinese photographer Yuyang Liu has recorded in an ongoing documentary project, “At Home With Mental Illness,” some rural families resort to restraining mentally ill family members within their own homes. In a small village in southern Guangdong province, Liu met 24-year-old Pang Jianwen, who worked in a local restaurant, before Pang was diagnosed with schizophrenia six years ago. Pang once set a fire inside the home, alarming his family. “When he gets sick” and experiences hallucinations, “sometimes his father locks him with a chain,” explained Liu. “It’s not that family members want to live in that situation — they don’t want to mistreat him.” Liu interprets what he saw not as cruelty, but desperation. “I can’t imagine how [the father] suffers. He only wants to help his son.”
The notion of ill people in iron shackles may seem medieval or barbaric, but medical research bears out Liu’s instinct that many needy families are simply struggling to cope with something they don’t understand or lack resources to manage better. After Chinese health-care workers found more than 250 people with severe mental illness locked inside their homes between 2005 and 2009, researchers from Peking University in Beijing and Harvard Medical School interviewed their immediate family members, publishing findings in April 2015 in the U.S. scientific journal PLOS One. The overwhelming reasons that relatives gave for restraining the sick were “financial difficulties” (96 percent) and “no capable caregiver” (87 percent). For periods of time ranging between two weeks and 28 years, those with severe mental illness, most often schizophrenia, had been shackled with iron chains or ropes or had been isolated in a room or in a separate shed outside a home. Only one regularly took medication.
In most regions of China, few good options exist even for those families that do try to find professional help. China’s mental health hospitals are too few and grossly understaffed, as Yao Guizhong, deputy director of the Peking University Sixth Hospital, a leading psychiatric hospital, told me. China has about 20,000 psychiatrists nationwide, or one for every 70,000 people. In developed countries, the average is 15.4 for every 100,000 people; China has less than 10 percent of that ratio. Moreover, “about half of those psychiatrists [in China] are not really qualified,” having received minimal training, Yao said. Too often, patients have never been diagnosed at all or are simply committed to psychiatric hospitals, by family or by police, without a rehabilitation plan — twin poles of despair.
The new mental health law calls for bolstering psychiatric resources. This summer, the Chinese government announced more specific reform targets: By 2020, the goal is for 80 percent of people with severe mental illness to have access to continuing medical treatment. The Health Ministry aims to double the number of trained psychiatrists and increase their salaries. Involuntary confinement is now officially legal under only extreme circumstances, though this provision has attracted significant controversy. Some who generally support the government’s reform direction, such as Yao, believe the new provision makes it too hard to treat patients until they demonstrably pose a physical danger to themselves or others; meanwhile, the New York-based watchdog group Human Rights Watch points out that exceptions are still made in cases of loosely defined “state security,” such as the practice of restraining certain petitioners seeking to air grievances in Beijing.
One institution admirably trying to live up to the new vision is the First Specialized Hospital of Harbin, a hospital dedicated to mental health. “We want to bring patients back to society,” said Liu Ming, the deputy director. Over the past two years, the hospital has taken meaningful steps to involve both patients and families in treatment decisions, with guidance from a E.U.-backed Italian NGO, the Associazione Italiana Amici di Raoul Follereau. “I believe they really want to improve the living standards of people with mental illnesses,” said Alessandro Lorato, the NGO’s China director.
The First Specialized Hospital has established a “self-help group” for patients’ relatives to share ideas and experiences, has provided patients more information about their conditions and medications, and has increased efforts to teach the local community about mental illness. These steps align with recent research, including a landmark study funded by the U.S. National Institute of Mental Health and published in October, that shows that alongside medication, both the education of family members and assistance for schizophrenic patients in solidifying community ties can significantly improve their condition.
Zhu Ancheng said that he still hears voices, years after his first collapse, but today he and his family are better equipped to live with and manage his schizophrenia, a lifelong condition. The former hotel worker, who was previously treated at another hospital in Harbin, more recently has sought out ways to help himself, including attending voluntary informational sessions at the First Specialized Hospital to learn more about the biology of schizophrenia. “Because I personally have the disease, and my mother has the disease, I’m very interested,” he said. When we met at the hospital, he was wearing a bright yellow shirt and wire-frame glasses, and he held my gaze steadily as he spoke.
Zhu’s experience is a testament to the positive impact that humane and consistent outpatient treatment can make. For the past two years, he has lived at home, taking two antipsychotic medications to stabilize his condition. Now 33, he hasn’t held another job, but he is beginning to dream again. Zhu hopes to launch a small marketing business from home, and he wants to learn English. “Mental disease is still a taboo in China,” he told FP, “but at least more people now understand.”
Photo credit: Getty Images
Correction, Jan. 11: The Associazione Italiana Amici di Raoul Follereau is E.U.-backed, not U.N.-backed as originally stated.