Thinking beyond US disability studies: cure as case study

Kathryn Cai //

Alongside Travis Lau and Roanne Kantor’s engagements with disability studies on this forum, I would like to continue building on their lines of thought to consider how the “medical humanities” can become more open and attuned to the questions of disability studies and a broader critical health humanities that encompasses a greater range of experiences and bodies. Stemming from my own research on how narratives portray diverse modes of living through the large-scale changes of China’s economic reform after Maoism, and in dialogue with the suggestions in Roanne’s post, I also wonder how the questions and concerns of disability studies and a critical health humanities might begin to engage more deeply with the transnational networks that are already shaping conceptions of bodies and disability in the US. A number of scholars who are working the “critical health humanities” have thus far begun to grapple with the relative lack of attention to structural issues related to, for instance, race, gender, sexuality, and disability in the medical humanities thus far.[1] In conjunction with these concerns, I wonder how a critical health humanities and the concerns of disability studies might consider these structures beyond the US-centric standpoints that currently dominate these fields.

To begin considering these possibilities, I turn to medical anthropologist Priscilla Song’s ethnography Biomedical Odysseys: Fetal Cell Experiments from Cyberspace to China (2017). While not explicitly a medical humanist or disability studies text, Song’s ethnography elaborates on the pursuit of cure, a concept that has historically been associated in disability studies with the biomedicalized imperative towards normative able-bodiedness. The social model, which locates disability in dominant societal frameworks and infrastructures rather than as an inherent quality of an individual body, takes particular issue with the concept of cure, though scholars such as Susan Wendell also call for broadened considerations of disability and experience, which might also include illness and a desire for cure.[2] Song’s ethnography follows individuals with spinal cord injuries and other neurodegenerative conditions who pursue treatments in China that are not available in the US and considers how the pursuit of cure is negotiated in patients’ own lives through transnational channels in which its moral valences are far from pre-determined, throughout an ongoing process that begins in online forums and takes many patients and caregivers to hospitals in China, often for the first time. Cure, then, becomes a concept that takes many shapes and meanings as it traverses these diverse virtual, embodied, and global networks.

Cure is central not only to individual conceptions of personhood for Western patients who seek and must negotiate the moral implications of fetal stem cell treatments but also Chinese national ambitions of economic prosperity and geopolitical prominence, which have long been linked to scientific and technological development as means for overcoming Western imperialism and dominance.[3] Song’s analysis thus considers these biomedical treatments and the multi-valenced meanings of cure in direct relation with China’s ongoing shifts that attend its “reform and opening up” (改革开放; gai ge kai fang), which began with economic reforms in 1978. Circulating conceptions of cure that shape individual perceptions and desires are therefore intertwined with national and geopolitical desires and contests. Song illustrates, for instance, how Western medical doctors and researchers portray Chinese doctors as charlatans who are willing to use experimental therapies on patients without conclusive results from randomized control trials, while the Chinese doctor Song primarily follows portrays over-reliance on randomized control trials to be inhumane and treats patients as experimental material rather than individual human persons deserving of treatment.[4] These multiple intersecting considerations of cure within specific transnational contexts that continue to shift in indeterminate ways as China’s post-reform, postsocialist trajectory continues to develop suggest how the concerns of disability studies, which has thus far primarily considered US-based perspectives, confront new questions and sociocultural and political histories and lived realities when we recognize how these US contexts and experiences are already being shaped by histories, desires, and structures elsewhere.

I conclude here with Jasbir Puar’s call to stretch disability beyond stable identitarian categories and instead make room for how the meanings of disability, among other embodied identities with which people identify such as race, gender, and sexuality, shift in relation to the always-shifting contexts through which they take shape. Puar asks how we might “destabilize[] the seamless production of abled-bodies in relation to disability” by considering bodily states as such, rather than strictly delineating disability and able-bodiedness.[5] Such a fundamental destabilization shifts the focus from “‘reclaiming’ the singular as well as ordinary capacities of disabled bodies and questioning the enforced normativity produced by abled-bodies” that has so far importantly occupied the field of disability studies.[6] Instead, Puar suggests that how bodies encounter one another and the transformations of identity that take place might “stretch the perceived contours of the material body,” such that “encounters are rarely comfortable mergers but rather entail forms of eventness that could potentially unravel oneself but just as quickly be recuperated through a restabilized self.”[7] These encounters and the bodily identities they engender are open to their “own dissolution and self-annihilation and less interested in a mandate to reproduce [their] terms of creation or sustenance” in relation to political needs,[8] an imagination of contingent encounter, unraveling, and re-formation that suggests an open, provocative, and generative place to begin allowing for the challenging potentials contained within and the dissolution of our embodied relations to political categories.

 

[1] Alan Bleakley, “Towards a ‘critical medical humanities,’” in Medicine, Health and the Arts, edited by Victoria Bates, Alan Bleakley, and Sam Goodman, 17-26. New York: Routledge, 2014; Megan Boler, “The risks of empathy: Interrogating multiculturalism’s gaze,” Cultural Studies 11.2 (1997): 253-73; Delese Wear and Julie M. Aultman, “The limits of narrative: medical student resistance to confronting inequality and oppression in literature and beyond,” Medical Education 39.10 (2005): 1056-1065; Rebecca Garden, “The Problem of Empathy: Medicine and the Humanities.” New Literary History 38.3 (2007): 551-67; Jonathan Metzl and Helena Hansen, “Structural competency: Theorizing a new medical engagement with stigma and inequality,” Social Science and Medicine 103 (2014): 103-126.

[2] Susan Wendell, “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” Hypatia: A Journal of Feminist Philosophy. 16.4 (2001): 17-33.

[3] Priscilla Song, Biomedical Odysseys: Fetal Cell Experiments from Cyberspace to China. Princeton UP, 2017: 114-5; See also Susan Greenhalgh, Just One Child: Science and Policy in Deng’s China. UC Press, 2008; Susan Greenhalgh and Edwin A. Winkler, Governing China’s Population: From Leninist to Neoliberal Biopolitics. Stanford UP, 2005; Ruth Rogaski, Hygienic Modernity: Meanings of Health and Disease in Treaty-Port China. UC Press, 2014; Sigrid Schmalzer, The People’s Peking Man: Popular Science and Human Identity in Twentieth-Century China. University of Chicago Press, 2008; Mei Zhan, Other-Worldly: Making Chinese Medicine Through Transnational Frames. Duke UP, 2009.

[4] Song, 166.

[5] Jasbir Puar, “Prognosis time: Towards a geopolitics of affect, debility and capacity,” Women and Performance: A Journal of Feminist Theory 192. 2 (2009): 166.

[6] Ibid.

[7] Ibid., 169.

[8] Ibid.

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