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    ‘I've Lost My Youth’: The Psychiatric Patients Stuck in Hospital

    In 2012, China’s first mental health law promised to improve care for the mentally unwell. But some are still kept institutionalized by their families, battling to get free.

    SHANGHAI — Lili gazes out at eastern China’s wide-open skies through the iron bars of her window in a Shanghai psychiatric hospital ward. She has lived here for most of the last 10 years, but says she never should have come here at all.

    “I miss the boundless sky. I miss feeling the temperature and scenery change with the seasons,” says Lili, a 39-year-old with large eyes, rosy cheeks, and a short ponytail. She was first hospitalized in 2005 after being diagnosed with schizophrenia, and was transferred in 2008 by her mother — coercively, she says — to her current home, a facility in suburban Shanghai that accommodates around 400 people deemed to have severe cases of schizophrenia, manic depression, bipolar disorder, and other mental health issues.

    The hospital has held her against her will for a decade at the behest of her mother, Lili says. She claims that a doctor declared her fit and well prior to her 2008 transfer, and that her condition has remained stable since then. Lili takes antipsychotic drugs to prevent relapses.

    With one stroke of a pen, Lili could be discharged today, according to hospital regulations. But that seems highly unlikely, because only Lili’s mother can sign her out — and she doesn’t intend to do that.

    When China passed its inaugural mental health law in 2012, human rights activists hailed the move as an end to the practice of involuntarily holding and treating people in psychiatric facilities. Nowadays, all patients must voluntarily consent to inpatient treatment unless they are deemed dangerous to themselves or other people. When the latter occurs, family members or the police may still bring patients to psychiatric facilities without their express consent, where a doctor may decide to admit them. But in theory, the law makes involuntary admission more difficult than before.

    In addition, if a doctor judges the patient incapable of making their own decisions, a court may nominate a formal legal guardian to help manage the patient’s legal and financial concerns. Guardians are usually spouses, family members, or close friends, and are legally obligated to act in the patient’s best interests.

    But the 2012 law has, crucially, done little to change one established practice. In most cases, it is not enough for doctors to formally declare a patient well and discharge them from their hospitals. In China, the power to discharge patients often rests solely with their legal guardians.

    Patients, doctors, and experts claim that because the mental health law remains inconsistently enforced and grants so much power to guardians, involuntary incarceration in psychiatric institutions remains widespread across China. A substantial minority of patients — the exact number is unknown — are left legally dependent on family members who neglect them, abuse them, keep them confined in hospitals long after they have recovered, or simply lack the social support structures to care for them outside, they say.

    “Guardianship is a double-edged sword: It can protect mentally disabled people, but it also allows room for guardians to abuse their power and deprive patients of their rights,” says Li Xia, a professor at the East China University of Political Science and Law in Shanghai. “In terms of civil rights, patients with mental disorders in China are no different from dead people. They can’t get married. They can’t manage their money. They can’t decide where to live.”

    Many hospitals, including Lili’s, engage with the formal guardianship system only fitfully, choosing to delegate decisions about the patient’s future to the person who admitted them. Sometimes, the patient’s only path to freedom is through the courts — but even there, deep-seated prejudices against people with mental health issues mean that their voices often go unheard.

    Citing privacy concerns and fear of repercussions from hospital staff, Lili asked Sixth Tone not to publish her real name, her family’s names, and certain details of her psychiatric institution. In order to gain entry to the ward for the initial interview, Sixth Tone posed as a potential buyer of the artwork that Lili creates in the hospital. Follow-up interviews were conducted via the social messaging app WeChat.

    Lili’s schizophrenia was diagnosed in 2005, after which her mother signed her into a public hospital in another part of Shanghai. Although Lili did not want to be admitted, she did not raise any objections, nor did her mother coerce her, she says. Her mother also did not obtain legal permission to become Lili’s guardian.

    Three years later, the hospital declared Lili well enough to leave. On the day she was discharged, Lili and her mother walked out of the hospital and hailed a taxi. Instead of taking her home, her mother took her to a new psychiatric facility. The hospital had Lili’s mother sign a so-called inpatient agreement, which gave her — and only her — the right to discharge Lili from the hospital.

    “I dared not object, because at that point, I felt that I had caused my family too much trouble already,” Lili says.

    Lili recalls not wanting to go to another hospital. But her mother, with whom she had always had a fraught relationship, rebuffed Lili’s requests to come home. Once, Lili remembers, she said she hoped to get married and have children someday. “My mother said, ‘You shouldn’t get married, or else your kids will be mentally ill, too,’” she claims.

    Lili did enjoy a fleeting taste of freedom in 2012, when she wrote a letter to a sympathetic official in the district government, who then mediated between Lili and her mother and convinced the latter to take her daughter home. But after seven months out of the hospital, the mother and daughter argued heatedly over Lili’s desire to take up an art apprenticeship. As Lili tells it, her mother refused, saying that Lili was not mentally stable enough to join the workforce.

    The next morning, Lili says she awoke to find several police officers standing outside her bedroom door. She was then forcibly removed from her mother’s home and brought back to the hospital. (Lili suspects that her mother reported her as a danger to society, which would have allowed police to use an appropriate amount of force to detain her.)

    “I didn’t struggle, because I knew I couldn’t fight back,” Lili recalls. “As long as I obeyed their orders, at least I wouldn’t be treated violently, and the doctors wouldn’t force me to take extra drugs.” Upon her arrival at the hospital, she maintains that she did not see a psychiatrist and was not asked to sign a voluntary admittance form.

    At Lili’s request, Sixth Tone contacted neither her mother nor her hospital for comment. Lili worried that doing so could anger her mother and sister — who still hold the key to her release — or else result in the withdrawal of certain privileges that hospital staff have granted her in recognition of her robust mental health.

    These days, Lili spends most of her time painting. Hospital staff allow her to use a spare room as an art studio, where Lili creates images of flowers, birds, and fish in traditional Chinese styles. She sometimes sells her works for thousands of yuan, and has even been commissioned as an illustrator for four children’s books, due to be published later this year. But because she doesn’t have a bank account, Lili relies on friends to sell her wares and buy her things from the outside world.

    For Lili, painting is not just a means of relieving the boredom of life in the ward — it’s a way of continually proving her sanity. However, she says that her family still sees her as “abnormal” and “incapable.” “They have been bad to me for years, and I have gradually gotten used to it,” she says. “Even though I know I’m well, I still feel somehow inferior, as if I don’t deserve to be treated like a normal person.”

    Lili’s treatment did not change after the 2012 law came into force. Until recently, she was reluctant to take the matter of her confinement to court, hoping to maintain her special privileges at the hospital and repair her relationship with her family. But now, with hope of an amicable discharge draining away, she is considering suing both her mother and the hospital. “I’ve lost my youth. I don’t want to spend my entire life here. I still hope to have a normal life, to have a career, to get married and have a family of my own,” she says, adding that she would not return to live in the family home after being discharged. “All I want is the freedom to make my own decisions and enjoy the rights to which I am entitled.”

    Yang Weihua, a Shanghai-based lawyer at the Yingke Law Firm, has worked on many cases like Lili’s. “Generally, it takes a lot longer for the court to accept these cases compared to other types of lawsuits,” says Yang, who worked on the first-ever case brought against a Chinese hospital after the mental health law officially came into effect in 2013. He and his client spent seven months convincing the court to accept the case, and a total of four years proving that he was well enough to leave the hospital.

    Prior to 2013, several news reports revealed cases of Chinese government officials using spurious claims of poor mental health to lock up petitioners and whistleblowers. In addition, some families have reportedly had relatives sent away to gain the upper hand in property disputes.

    Huang Xuetao, a lawyer and longtime advocate of legal rights for the mentally disabled, says that most Chinese psychiatric facilities still hold certain healthy patients against their wills and defer to signees of involuntary admittance agreements. Part of the issue is that the very fact that patients live in mental health institutions often makes the courts doubt their ability to live on the outside. “Often, the courts automatically assume that [patients] need a guardian to represent them,” she says.

    For the last six months, Yang — the lawyer at Yingke — has represented a 63-year-old man surnamed Dong. In January, after he was diagnosed with schizophrenia, Dong’s wife, surnamed Zhou, brought him to a public mental hospital in Shanghai. At the time, Dong was experiencing delusions, and doctors had Zhou sign an inpatient agreement on his behalf. In March, Dong’s condition was adjudged stable enough to leave the hospital.

    Dong — who requested that Sixth Tone only use his surname because his case is ongoing — recounts an episode in which he claims to be forcibly taken to Qianyu Mental Hospital on the outskirts of Shanghai, at the behest of a family member. On the day he was discharged, Dong claims, “two men and my wife pushed me into a car like I was a prisoner and brought me here.” Dong says that one of the men works at Qianyu, but does not know the identity of the other. He also claims that Zhou is knowingly refusing to sign him out.

    “I cannot bear the boredom and loneliness in here,” says Dong in a bedside interview with Sixth Tone. He has cataracts in both eyes that severely impede his vision, and spends his days at the hospital doing very little. His brother, Dong Xinlin, visits regularly and initially helped Dong seek legal aid. Dong Xinlin says that both Zhou and the hospital have refused to grant Dong short-term leave to get essential eye surgery and visit his 95-year-old mother.

    On receiving details of the case, Yang — Dong’s lawyer — initially attempted to file a lawsuit against both Zhou and Qianyu Mental Hospital. “But the court insisted that his wife is his guardian — even though no legal document proves it,” Yang says, adding that the court demanded that Dong complete a mental health assessement before considering his case. Dong, for his part, worries that if the hospital performs an assessment, they will declare him mentally incapacitated — a development that could allow Zhou to be declared his legal guardian.

    Zhou hung up when Sixth Tone telephoned her for an interview, and further calls to her phone went unanswered. In February, Dong Xinlin held an on-camera interview with Shanghai-based media outlet Kankan News, in which he claimed that Zhou was spending money from Dong’s bank account without his consent. Zhou, who spoke to Kankan over the phone in the video, denied those accusations, saying that Dong’s brother also sought to benefit financially from her husband’s personal savings and stock holdings. “His illness will only get worse,” Zhou said of her husband. “He is mentally disabled and understands nothing. His brother only wants him out for his money.” In the same video, the hospital president said that staff could not discharge Dong without Zhou’s consent.

    Although antagonism between patients and guardians makes the news fairly regularly in China, some guardians keep their charges cooped up because of a lack of social support. A paper published last year found that many guardians are unable to provide the necessary care to loved ones diagnosed with severe psychological disorders or mental disabilities, and argued that China’s current guardianship system emphasizes the need to prevent mentally unstable people from harming others, but ignores the patient’s quality of life as well as that of their families. The country has a well-documented dearth of psychiatric doctors and social care staff.

    Regardless of why they’re there, large numbers of long-term, healthy inpatients clog up China’s overburdened public health system. A department director at a public mental hospital in Shanghai, who declined to be named due to the sensitivity of the issue, told Sixth Tone: “We don’t have enough beds left. Sometimes, we can’t accept people who need to be hospitalized. But at the same time, we have people who are perfectly well, but can’t leave the hospital because their families refuse to take them home.”

    In 2008, China joined the United Nations Convention on the Rights of Persons with Disabilities, which states that the dignity and autonomy of mentally disabled people should be preserved as far as possible. But such a system is far from being realized in China, according to Li, the Shanghai-based law professor — a fact that she attributes to negative public perceptions of mental illness. “In many Chinese people’s minds, mental disorders are equated with killing or injuring others, babbling incoherently, or looking messy and living in filth,” says Li. “All these misleading impressions make people feel that mental health patients do not deserve the same human rights as the rest of us. As the majority, we trample upon their rights, but feel nothing.”

    Correction: China’s inaugural mental health law was passed in 2012 and came into effect in 2013.

    Editor: Matthew Walsh.

    (Header image: A patient’s feet are strapped to a sickbed at a psychiatric hospital ward in Zouping, Shandong province, June 27, 2012. Dong Naide/VCG)