Anne Fadiman’s 1997 bestselling narrative nonfiction, The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures, meticulously outlines the story of Lia Lee. Lia was a young Laotian refugee diagnosed with and unsuccessfully treated for severe epilepsy over the course of her childhood in California in the 1980s. As its subtitle suggests, the text is chiefly organized by the notion of an incompatibility of attitudes about the human body: the “spiritualized” belief systems of the Hmong, and their supposed opposite, the etiological inclination of the western medical establishment. Spirit has been widely received as an exposé into the challenges of modern healthcare when religious, cultural, linguistic, and philosophical orientations fail to align in a treatment regimen that satisfies providers and patients (or in Lia’s case, parents) alike. Because Lia’s story so clearly depicts the “tragic” stakes of “cultural miscommunication” in clinical settings, the text was readily adopted in western medical training programs and other circles concerned with improving clinical care (Yale Publications). Consequently, Fadiman’s book sold nearly 1 million copies.
Spirit has become required reading for many doctors-in-training, its publication coinciding with the ascendance of patient-centered care models cultural competence units. Fadiman’s work also became a kind of urtext for the medical humanities, which gained serious traction in the same decade as her publication. Renowned surgeon and Yale faculty member Sherwin B. Nuland attested to the staying-power of Fadiman’s “profoundly memorable” clinical narrative, stating, “I cannot think of a book by a non-physician that is more understanding… of the conditions under which today’s medicine is practiced” (Nuland). Indeed, Yale Medical School was one of the many programs which assigned the text for incoming cohorts; meanwhile, Anne Fadiman continues to teach in the creative writing track over in Yale’s English department. The enduring image, then, of Spirit at the end of the 1990s as an exemplar for improved, collaborative thinking across the medical and creative spheres of storytelling—and one that ushered in a paradigm of healthcare which embraces a more global, cultural attentiveness—can hardly be overstated.
However, a quick literary history of Spirit reveals that the book has since only minimally escaped its confinement to the realm of medical education. Nearly all of the scholarly reviews and analyses of the text I could locate came from within scientific domains: Health Education Journal, Journal of Cancer Education, British Medical Journal, Medical Anthropology Journal, Pediatric Nursing, Academic Medicine, Journal of Transcultural Nursing, Psychiatric Care, to name a few. Additionally, these engagements with Spirit ranging from 1999 to 2022 all seem to land upon the same key takeaways: reading this book enables one to become a better doctor, to learn that cultural distinctions impact medical outcomes, and to advocate for marginalized patients. Every article thus frames Lia Lee’s story as tragedy with informative and didactic purpose. One particularly vehement review insists all frustrated doctors and pre-med students must grab copies of this “medical classic”—the succinct (and suspect) abstract quips, “Educational warning: This book will teach you something important about non-compliant patients” (Kavalier c3524). Likewise, the surgeon quoted on the book jacket summarizes, “The Spirit Catches You and You Fall Down changed how doctors see themselves” (Klass).
The book even concludes with a kind of emblematic, scientific interpretation of events as its final impression for readers. Fadiman suggests that the Lees were right to warn against the many invasive procedures performed on their daughter, however, she does so not by validating the Hmong apprehension toward surgical intervention and disinterest in “giv[ing] a medicine forever,” but by highlighting instead how sepsis from countless operations initiated the fatal shock to Lia’s system (Spirit 52). Despite its intent to uplift an alternative, cultural perspective regarding Lia’s case, Spirit repeatedly sanctions a medical epistemology: epilepsy rather than “qaug dab peg,” sepsis over affirmation of parents’ fears . Indeed, for a text promising a tale of dramatic impasse between two groups of supposedly comparable significance—dialectical, even, in their patient/provider, culture/science, white/other, western/eastern characterizations—the intended readership for Spirit is clearly a doctorly one and the “clash” an instructive one.
I would never propose that healthcare providers cannot or should not aim to improve their skillsets through the act of reading and learning from narrativized case studies. In fact, I think part of the promise of the health humanities is a multidisciplinary attention to the edifice of modern medicine intended ultimately to improve its functionality for all stakeholders. And yet I want to take seriously Travis Chi Wing Lau’s proposition (in Synapsis, no less) that “medical humanities must do more than educate physicians on how to more empathetically attend to patients or how to interpret patient narratives” (Lau). Can we read Spirit as more than a landmark call for increased cultural awareness within a medical framework? What might the story of a Hmong family negotiating life, care, and death of a child with and against American doctors afford us beyond “lessons” for a medical audience? I’m interested in what Spirit has to offer beyond its aspirational capacity for advocacy and its relentless attention to improving outcomes, as has been its principal occupation thus far.
I suggest that two fields of thought may help us engage Anne Fadiman’s telling of Lia Lee’s story differently. First, a literary analysis of Spirit as a crafted narrative—one which deploys specific techniques such as flashbacks, descriptive language, allegory, voice, irony—helps identify a kind of decision-making on Fadiman’s part that is often obscured in reviews housed in medical education. After all, the book proclaims itself a product of “literary journalism,” replete with the complicated politics of representation of a voiceless lead character. For example, Fadiman lends greater weight to Lia’s case logs and diagnostic materials than interviews with the Lees and other Hmong characters; the structural separation between chapters presenting war-torn Laos and those on the epilepsy case holds US imperialism at a remove from the present conditions of refugee health; and the repeated emphasis on Fadiman’s own immersion into the Hmong community imbues the prose with a sometimes uncomfortable “cultural informant” style. In deliberately teasing out Fadiman’s choices as literary ones instead of purely factual, journalistic ones, I’ve found we ought to be cautionary of this cautionary tale. Though aimed as exposing the “futile good intentions” (Klass) of nice white doctors toward Asian refugee patients, Spirit itself sometimes fails to notice when the good intentions of a nice white writer compound such mishandlings. What I find lacking in the widespread embrace of this book is an acknowledgment of this subjectivity, this flawed literariness, and the not-infrequent harm it occasions. As an entry point into a broader discussion of the health humanities, then, I argue that the text demonstrates how medical and literary (mis)treatment can be performed hand-in-hand, enacted via similar logics.
Perhaps more importantly, existing scholarship on The Spirit Catches You and You Fall Down reflects a gap by not evaluating Lia Lee’s experience through disability studies, an intersectional area of thinking and activism which solidified around the same time as the book’s publication. The word “disability” is entirely absent in Spirit’s otherwise extensive index, an omission which points toward a refusal to read Lia’s story beyond the invocation of a tragic scene understood within the context of a medical model.[1] To indicate the bewilderment of providers in experiencing pushback from the Lees, Fadiman quotes one clinician: “It was very foreign to me that [Lia’s parents] had the ability to stand firm in the face of expert opinion… they seemed to accept things that to me were major catastrophes as part of the normal flow of life. For them, the crisis was the treatment, not the epilepsy” (Spirit 53). After this dialogue, the book abruptly returns to transcribing notes during a grand mal seizure, but I wonder what it would have looked like for Fadiman (and Lia’s doctors) to have considered the Lees’ position critically. What kind of implications underscore the medical viewpoint of a “normal” life? What might it mean to accept that curative actions are often catastrophically damaging to the body and therefore unwanted? Why are we so reluctant to allow that patient perspectives can be as substantive a form of “expert opinion” as that of a health worker?
There are many such instances in Spirit worth examining via disability theory, including the caricaturing of the Lees as childlike in their illiteracy, the ablenationalist comparisons of “developed” American and “undeveloped” Laotian medical landscapes, the fixture of cultural competency as a kind of “narrative prosthesis” or easy remedy to the structural issues of healthcare, the marking of animist beliefs as unintelligible, essentialist descriptions of “that stubborn strain in the Hmong character” (Spirit 49), and so on.[2] The adoption of a disability studies lens toward Spirit would regard such representations of difference not as mere feature of the melodrama of a patient/provider dispute, but as complex depictions of how exclusion is embedded in our systems, whether medicine, immigration, or literary journalism.
There are legitimate reasons that the health humanities and disability studies are often at odds with each other, given their origins in institutional versus activist settings and their differential investments in reigning health paradigms (Lau). Partially, I wonder if disability studies would even want a text like The Spirit Catches You and You Fall Down to be enveloped within its canon. Still, I am hopeful that renewed attention to these fields’ varied methods for handling a narrative such as Fadiman’s might provide a space for future scholarship to converge, to speak across these provider and patient divides. Lia’s story has and should be scrutinized as part of a larger effort to improve clinical care and patient outcomes, but a critical, disability-oriented analysis of Spirit and its literary qualities greatly invigorates our reading of the book. Because “disability is not fundamentally a question of medicine, nor is it just an issue of sensitivity and compassion; rather, it is a question of politics and power(lessness), power over, and power to” (Pothier and Devlin 2), this approach invites us to better address the co-constitutive nature of ableism and racism, uphold patient attitudes as meaningfully authoritative, and demonstrate how medical narratives of the body are as constructed as cultural ones.
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[1] The medical model conceptualizes disability as an individual impairment in need of alleviation or cure. When intervention doesn’t produce change, disability is often treated as a pitiable “personal tragedy.” In the case of Spirit, not only are Lia’s epilepsy and non-verbal life painted as tragic, but the core failure of medical action also positions the doctors as tragically fallen heroes in the narrative.
[2] For a discussion of how racial citizenship and ableism are connected, read about “ablenationalism” in Mitchell, David T., and Sharon L. Snyder. The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. University of Michigan Press, 2015. For a discussion of narrative prosthesis in disability writing, see also Mitchell, David T., and Sharon L. Snyder. Narrative Prosthesis: Disability and the Dependencies of Discourse. The University of Michigan Press, 2011.
Works Cited:
‘The Spirit Catches You and You Fall Down.’ Yale English Department Publications, 18 Sept. 2012, https://english.yale.edu/news/department-news/spirit-catches-you-and-you-fall-down.
Fadiman, Anne. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures. Farrar Straus and Giroux Inc, 1997.
Kavalier, Fred. “The Spirit Catches You and You Fall Down.” BMJ, vol. 341, 2010, pp. c3524–c3524., https://doi.org/10.1136/bmj.c3524.
Klass, Perri. Cover endorsement. The Spirit Catches You and You Fall Down, by Anne Fadiman, Farrar, Strauss, and Giroux, 1997.
Lau, Travis Chi Wing. “Taking Stock: Disability Studies and the Medical Humanities,” Synapsis, March 2018, https://medicalhealthhumanities.com/2018/03/14/taking-stock-disability-studies-and-the-medical-humanities/.
Nuland, Sherwin B. “Doctors and Deities.” The New Republic, 13 Oct. 1997, https://newrepublic.com/article/116866/sherwin-nuland-reviews-spirit-catches-you-and-you-fall-down.
Pothier, Dianne, and Richard Devlin, editors. Critical Disability Theory: Essays in Philosophy, Politics, Policies and Law. UBC Press, 2006.
Image Credits:
(Overlapped images– recording of brain waves layered over art piece by a Hmong artist)
Wikimedia Commons. CC BY-SA 4.0. Generalized 3Hz spike and wave discharges in a child with childhood absence epilepsy, 2006.
My Via Yang. Appliqued Wall Hanging, 1989-1992. Embroidery. National Museum of American History. Smithsonian Collections.
