Science, Medicine, and Anthropology This article is part of the following series: Disability from the South: Toward a Lexicon
If you spend any time in a psychiatric hospital in China, you will likely be struck by the fact that most of the inpatients there have been hospitalized against or regardless of their will, usually by their family members. In China, although families have long been involved in the lives of mentally ill patients, the ways in which they are involved are historically variable. For example, during the socialist era before the early 1980s, not only family members, but work units, neighborhood committees, the police, local governments, and other agents also took responsibility for patients. The arrangements they made were often community-based and eclectic, ranging from psychopharmaceuticals to Chinese medicine, thought education, and sheltered workshops. Yet since the market reforms of the 1980s, as biomedical and institutional treatment has become dominant, families have become the central agents in paying for and working with such treatment. In the past decade, human rights activists in China have launched a vehement attack on the prevalence of involuntary hospitalization and on families’ involvement in it. Despite such contingencies and challenges, the first-ever national Mental Health Law in China, effective since May 2013, has reinforced the rights and responsibilities of families—now formally defined as spouses, parents, and adult children—in patient care and management. Why do Chinese families occupy such a critical role in psychiatry and patient’s lives today?
My fieldwork shows that Chinese psychiatry and the rising security state have come to see mentally ill patients as both vulnerable and potentially violent, and so in need of constant management. In response to human rights critiques, psychiatrists who drafted the Mental Health Law justified involuntary hospitalization and other management measures as manifestations of “state paternalism.” Invoking the Confucian and socialist legacies of the parent state, they argued that this state paternalism had prevented China from experiencing the disastrous consequences that deinstitutionalization had produced for both patients and the public order in Euro-American countries. However, with the devolution of the welfare state, the law ended up concentrating the responsibilities—and rights—of paternalism on and in families. One psychiatrist told me: “Fortunately, while American families can simply walk away, Chinese families will always care for their patients.”
In Chinese as in English, paternalism literally means the power of the father[1], and it implies an omniscient, omnipotent authority. Yet in practice, responsibilities for patients typically fall onto aging parents and female relatives, who are themselves vulnerable and do not wield much power. Everyday tasks such as medication oversight require them to engage in trivial but painful negotiations with patients, and these interactions may incur emotional or physical injuries on both sides. Family members may also resort to practices that are deemed problematic by psychiatrists, from entertaining patients’ hallucinations to putting drugs into patients’ meals—the latter as an attempt to avoid troubling patients with the stigmatizing diagnosis. These practices should not be understood (only) as patient management, but they are (also) ways to sustain intimate ties, to engage with alternative realities and desires. As such, they exceed the medico-legal discourse of rationality and security, as well as the human rights imagination of individual independence.
The Chinese case shows why the family is part and parcel to understanding disability in the global south, and the ways in which we should interrogate, rather than take for granted, the notion of the family. First, colonial, imperial, and nation-building processes that make the global south are often justified by culturally essentialist discourses of how local families treat disabled bodies, and how the state as a family writ large treats its vulnerable members. These discourses mark an other different from the Euro-American world, which putatively values individual autonomy and the liberal social contract. This difference is usually presented as a lack/lag. For instance, in China during the turn of the twentieth century, both the evangelizing project of American missionaries and the modernization project of Chinese intellectuals invoked the image of mad people being confined and oppressed at home to point out the ills of the patriarchal Chinese culture, and to legitimize their interventions into it (Ma 2014). Yet the difference may also be presented as an advantage, as we have seen in the idea of state paternalism.
Second, in the face of colonial dispossession and/or state disinvestment, actual families in the south often become primary units of economic, physical, and emotional survival, especially for disabled people who are deemed incapable to participate in the market economy. Yet families are not simply left alone. Rather, when disability is seen as jeopardizing the body politic, families—as the most intimate environments and relations for many people—likely become both targets and agents of intervention. That way, the state enters family life via its law, knowledge, and personnel, while families in turn are expected to act like mini-states, disciplining and providing for their subjects.
These processes produce complicated power dynamics. As Veena Das and Renu Addlakha (2001) remind us, disability in the south is often situated “off the body of the patient and within networks of connected kin”—especially as women carry out care work and the associated stigma of disability. Meanwhile, “interested social actors may [also] seek to localize and isolate disability within the body of one person” (ibid., 527). (In the Chinese case, one way in which isolation happens is through prolonged hospitalization.) Das and Addlakha use the term “domestic citizenship” to highlight the gendered practices through which voice is given or suppressed and different notions of citizenship are enacted. In Euro-American assumptions, the family is either a private sphere of loving care, or an oppressive social impinging on the freedom of the individual. Yet as the concept of domestic citizenship suggests, the disabled body and the family are not a priori categories, but co-produced in processes that are public and political through and through. And as my case shows, these processes and their effects may be intimated through the intimate affects of hope, fear, and anger.
Third, although it is mobilized and shaped by sociopolitical processes, family life amidst disability often disrupts its moldings. As I mentioned, while the Chinese medico-legal regime expects caregivers to be powerful authorities who follow scientific principles to produce manageable, if not normal, subjects, many caregivers are in fact vulnerable agents open to ambiguous and alternative forms of being. Scholars of the north have recently noticed that families living with disability often crip dominant notions of domesticity (Rembis 2017), critiquing, disrupting, and imagining alternatives to constructions that assume able-bodiedness. This may be even truer in the south, when people have to live with impossible demands and make do with less. Moreover, in the Chinese case at least, this cripping has gone beyond the house. Hurt by the hypocrisy of the state’s paternalistic promises, some caregivers have begun to organize. They demand the state to be a proper parent, to see and to share their vulnerability, to care less about security and more about the wellbeing of its children.
The case of China calls our attention to non-individualistic, family focused, and gendered configurations of disability, which seem to be the rule rather than the exception for much of the world. It also urges us to analyze the family on multiple dimensions: as a cultural-ideological construct, a unit of survival, a product of intimate politics, and a source of generative disruption to the hegemonic normativity. Of course, China’s case is somewhat distinct, for it draws on the country’s particular ideological legacy and institutional infrastructure to envisage a world order and bodily future different from the Western-centered teleology of deinstitutionalization. Yet it is exactly by paying attention to the family that we can gain a situated, diversified, comparative, and deconstructive understanding of disability in the global south.
Works cited
Das, Veena, and Renu Addlakha. 2001. “Disability and domestic citizenship: Voice, gender, and the making of the subject.” Public Culture 13(3): 511-31.
Ma, Zhiying. 2014. “An ‘iron cage’ of civilization? Missionary psychiatry, Chinese family, and a colonial dialectic of Enlightenment.” In History of Psychiatry in Chinese East Asia, edited by H. Chiang, 91-110. London: Pickering and Chatto.
Rembis, Michael. 2017. “Introduction.” In Disabiling Domesticity, edited by M. Rembis, 1-23. New York: Palgrave MacMillan.
Note
1. It is beyond the scope of this short essay to trace the transformation and translation of the concept of paternalism.
Zhiying Ma is an Assistant Professor at the School of Social Service Administration, University of Chicago. Her book manuscript examines families’ involvement in the lives of people with psychosocial disabilities in China, focusing on how that involvement is shaped by psychiatric institutions and the country’s recent mental health legal reform. She is also working on two new projects, one on the development of community mental health and the other on the emergence of a disability rights movement in China.
“Disability from the South: Toward a Lexicon” is a series edited by Michele Friedner and Tyler Zoanni. Contributors in this series consider what changes in theorizations of disability when research is located in places marked “Southern” and offer reconfigurations of keywords and concepts typically utilized in the study of disability.