Invitation from Disability
From the Series: Disability as Rupture
Although disability had deeply impacted my personal and family life, I did not expect my experiences with the vulnerability, care, and control that come with disability to be so central to my fieldwork when I first started as a graduate student. In the late 2000s, I went to a psychiatric hospital in South China with a classic medical anthropology question of how patients, family members, and doctors experienced and explained schizophrenia. While there, I noticed that most inpatients on the ward had been forcibly or deceptively hospitalized by their family members in the name of care.
Their tears and sighs reminded me of my childhood frustrations when my parents tried to “correct” and hide my severe scoliosis with painful devices and procedures, and when they prevented me from participating in physical activities for fear of “danger.” Although my small frustrations could not be compared to the profound stigma and constraint that people on the schizophrenia ward experienced, the resonances made me realize the entanglements of care and control common in Chinese family relations around disability. I thus refocused my study on how such entanglements were enacted and resisted amidst psychiatric disabilities.
I knew my parents had tried to protect me from a hostile society. In the small town where we lived, my “deformity” was widely regarded as a catastrophe, and it led local officials to refuse me entry to a key school. This awareness prompted me not to make cultural assumption about Chinese families, but instead to look at what social forces shaped families’ attempts to care through control.
During fieldwork, I initially kept quiet about my own disability because I had been raised to do so, and because I did not want to diminish the uniqueness of my interlocutors’ struggles. Yet over time, disability ruptured fieldwork and brought surprising revelations about vulnerability and expertise (Hartblay 2020). Navigating the hot weather in South China, the inaccessible environment, and a stressful schedule, I became more prone to pain and fatigue, to the point that I fainted on an excursion with social workers and people with psychiatric disabilities organized by a community mental health agency.
While the social workers expressed surprise at my fragility, the people with psychiatric disabilities rushed to find me water, food, and shade; they even designated one person to accompany me home. Later, I thanked them for their help and explained my condition. Most of them did not seem to know what scoliosis was, but they continued to make sure that I did not strain myself.
Because of their experiences living with largely invisible disabilities, institutional oppressions, and bodily vulnerability brought on by medications, they intuitively empathized with my vulnerability without showing surprise or pity. From then on, I saw persons with psychiatric disabilities not just as subjects of institutional and familial control, but also as experts of access intimacy (Mingus 2011) skilled at providing experience-near, vulnerability-centered, and non-oppressive care. Drawing on their expertise, I have begun a new project to help develop peer support services for this population, to promote the alternative care that they provide in China’s mental health system.
In late 2010, my mother was diagnosed with Parkinson’s. In 2015, my father started to show signs of bulbar palsy. Because they had migrated to one of the cities where I did fieldwork, I was at times able to use my field connections to help them get care, such as having doctors prescribe medications for my mother and secure a hospital bed for my father. I was profoundly thankful for their help, but I was also distraught when some providers offered me moral lessons about how “unfilial” I was by leaving my parents to go abroad. “Are you really your parents’ daughter?” one asked when I called begging him to go see my father, who became so depressed as to refuse eating. Those words drove me to tears, and they still bring me remorse occasionally. Yet looking back, I recognize how much they reflected the institutional discourses that put responsibilities for care solely on families and excused structural irresponsibility, regardless of the professionals’ intentions.
In contrast, when I asked some family caregivers whom I interviewed about community resources that my parents could use, they gladly shared information without passing judgment. It could be because of my relative status as an elite researcher, or because they refused to see care only as a family matter and were used to scraping together any help they could find (Ma 2021), just as I tried to do. Unfortunately, not only were the resources few and far between, but the ones caregivers suggested—day programs, community kitchens, nursing facilities—were not useful for us because they were tied to the hukou, or city residency status, which my parents did not have. Such exclusions made me realize that, while some disabled people are oppressed by institutional arrangements that assert control in the name of care, others suffer from a lack of institutional attention to their care at all (Ma 2020). Researchers should thus be aware of the varying vulnerabilities created by intersections of disability, citizenship, and other sociopolitical processes (Mollow 2006). Advocating for emancipation from control and ensuring equity of resource access should be the dual goals of social justice-oriented research.
In all these ways, my personal and family experience with disability has ruptured and reshaped my fieldwork. The frustrations I felt in relation to my family’s response to my bodily conditions and their own aging drew me closer to the entanglements of care and control faced by many disabled people, to the unavailability of care to others, and to the structural conditions that made them so. Moreover, the support given to me by my interlocutors, especially those who were the most marginalized, shed light on the survival strategies they built and the practical wisdom of care they developed in response to vulnerability. The rupture of disability is thus an invitation for ethnographers, if willing to embrace and reflect on our own vulnerability, to use it as an entry point in relating to our research participants. It should not be the endpoint, however, or we risk ignoring differences in experience and intersections of oppression, silencing our interlocutors, and reducing ourselves to tokens.
Hartblay, Cassandra. 2020. “Disability Expertise: Claiming Disability Anthropology.” Current Anthropology 61, S21: S26–36.
Ma, Zhiying. 2020. “Numbers and the Assembling of a Community Mental Health Infrastructure in Post-socialist China.” In Can Science and Technology Save China? edited by Susan Greenhalgh and Li Zhang, 25–49. Ithaca, N.Y.: Cornell University Press.
Ma, Zhiying. 2021. “Affect, Sociality, and the Construction of Paternalistic Citizenship among Family Caregivers in China.” HAU: Journal of Ethnographic Theory 11, no. 3: 958–71.
Mingus, Mia. 2011. “Access Intimacy: The Missing Link.” Leaving Evidence. Accessed April 24, 2022.
Mollow, Anna. 2006. “‘When Black Women Start Going on Prozac’: Race, Gender, and Mental Illness in Meri Nana-Ama Danquah’s Willow Weep for Me.” Melus 31, no. 3: 67–99.