Cultural Collisions And Communal Costs

Reflecting on The Spirit Catches You And You Fall Down by Anne Fadiman

Since I had to do a book reflection on the book The Spirit Catches You And You Fall Down by Anne Fadiman for my PH 6060 class, and since I am actually quite proud, both in my assignment for the class, as well as the fact it expanded my thinking (which is a rare thing I find these days), I figured I would share that review with you all. I hope you all enjoy it, and for those of you who haven’t read the book before, that it motivates you to pick it up and read it.

Introduction

Anne Fadiman’s The Spirit Catches You and You Fall Down is a landmark in narrative medical non-fiction that explores the tragic interface between culture and care. Through the story of Lia Lee, a Hmong child with severe epilepsy, the book exposes the often invisible barriers created by cultural beliefs, institutional rigidity, and professional norms in modern American healthcare. Fadiman’s deeply reported and empathetic account highlights both the strengths and blind spots of the Western biomedical model, while offering a textured understanding of the Hmong refugee community in California.

Outline of the Book

Lia Lee was born in Merced, California, to Hmong refugee parents on 19 July 1982. At three months old, she began having seizures. Her parents, Foua and Nao Kao, interpreted these seizures as a spiritual affliction – known in Hmong as “quag dab peg” or “the spirit catches you and you fall down” – whilst her American doctors, particularly Drs Neil Ernst and Peggy Philp, diagnosed epilepsy and prescribed an increasingly complex medical regimen, the Hmong view of epilepsy as a spiritual affliction clashed almost immediately with the American biomedical understanding of epilepsy, setting the stage for years of miscommunication between Lia’s family and her physicians. The cultural rift widened as neither party could fully understand the other: the doctors believed the Lees were negligent, while the Lees felt the doctors were disrespectful and unsafe.

The book explores Lia’s life in both clinical and domestic contexts, illustrating how Foua and Nao Kao Lee, her parents, had deep love for their daughter but rejected much of the prescribed treatment, especially medications whose side effects seemed worse than the disease. Eventually, Lia was removed from her family by Child Protective Services and placed in foster care. After her return, a severe seizure left her in a persistent vegetative state. Fadiman expands the narrative beyond this tragedy, describing the broader history of the Hmong, their experiences as refugees, and their worldview shaped by trauma, communal strength, and spiritual cosmology. By juxtaposing Lia’s story with medical anthropology and historical context, Fadiman challenges readers to rethink assumptions about medicine, culture, and responsibility. Lia’s story is one of loss – but also of enduring love, resistance, and the possibility of better care through understanding.

Reflection and Analysis

Health Behaviour Problems

The key health behaviour problem identified by Fadiman is medication adherence – specifically, how conflicting beliefs about illness and healing obstructed adherence to Lia’s epilepsy treatment. The biomedical model focused on controlling seizures pharmacologically, while the Hmong spiritual worldview saw seizures as a sacred calling and sought harmony through shamanistic healing. This conflict wasn’t merely linguistic or informational – it reflected a clash of health belief systems.

This discord can be framed through the Health Belief Model: Foua and Nao Kao’s perception of epilepsy’s severity and susceptibility was filtered through a cultural lens that prioritised spiritual over clinical causality. The “barriers” were not logistical but conceptual. Meanwhile, providers lacked both the tools and institutional support to adapt treatment plans in culturally appropriate ways.

Additionally, Social Cognitive Theory (SCT) offers insight into how neither side had effective models or reinforcement mechanisms to facilitate mutual learning. Lia’s doctors were frustrated by perceived “noncompliance,” while her parents felt alienated and fearful of state intervention. The absence of bidirectional modelling – where each party could observe and learn from the other – undermined the therapeutic alliance. Structural Bias and Health Inequities

Structural Bias, Social Inequities, and Racism

Fadiman illustrates how structural bias operates at multiple levels. At the organisational level, doctors insisted on a uniform standard of care without flexibility, viewing cultural adaptation as a compromise of professional ethics. Dr Ernst’s refusal to modify his approach for Hmong patients (p. 79) exemplifies this. At the community level, Merced’s institutions lacked interpreters, cultural liaisons, or support systems. On the systemic level, the Lees’ Medi-Cal coverage created limitations that reflected a stratified healthcare system unable to meet complex needs equitably (p. 212).

Gee and Ford’s framework of structural racism is especially relevant here. While Lia’s doctors did not hold overtly racist views, their actions were shaped by an institution that privileged Western epistemologies and treated cultural divergence as “noncompliance.” Dr Ernst’s resistance to altering his care protocols – even when they were ineffective – reflected a culture of biomedicine just as strong and ingrained as Hmong traditions. On page 261, Arthur Kleinman points out that biomedicine itself is a culture, with its own values, rituals, and forms of authority – a position I strongly share, given my experiences in the military and as an engineer.

The Direct Effect Model of social support is also pertinent. The absence of culturally concordant social support structures – like community liaisons or bilingual care navigators – directly contributed to Lia’s deteriorating health. In this light, the tragedy becomes not a failure of parental love or physician dedication, but of system-level neglect.

New Ideas and Familiar Concepts

While the specifics of Hmong beliefs were new, the general themes were familiar. As someone with a multicultural background and a veteran who has seen various worldviews, the concepts did not shock me. They reminded me of my mother’s Mediterranean superstitions and my maternal grandmother’s insular, island-based worldview. These resonances underscored the importance of understanding belief as lived experience, not as pathology.

Non-fiction Format and Thematic Resonance

The non-fiction narrative format made the themes of the course come alive. Unlike academic articles, which tend to abstract and generalise, Fadiman’s account anchors systemic failures in the lived experience of one family. This makes the reader care in a different way – it is no longer just about “social determinants”, it is about what it feels like to have your child taken away because of a misunderstanding.

Universality of Lia’s Story

Lia Lee’s case is extreme, but her story is universal. Every day, providers and patients collide across gaps in language, belief, and expectation. Veterans with PTSD, children with autism, immigrants with limited English, etc. – all face systems that often prioritise protocols over people. The systematic disconnect Lia experienced is not an exception – it is a pattern.

The Family Systems Model is also implicitly at play. Lia’s condition shaped every interaction in the Lee household and produced cascading effects on her siblings. As we saw in our coursework on ACEs, chronic stress and disrupted caregiving environments have multigenerational implications – something Fadiman hints at but which deserves even more attention.

Assumptions and Alternatives

While Fadiman suggests that cultural humility might have changed Lia’s outcome, I find Arthur Kleinman’s perspective more compelling (p. 261). He proposes three changes: 1) eliminate the coercive term “compliance” in favour of “colloquy”, 2) a shift from coercion to mediation, and 3) recognise that the culture of biomedicine is as entrenched and potent as any other. That last point deeply resonates with me – professional cultures often impose moral and epistemological frameworks under the guise of neutrality.

Selected Passages

Two passages stood out:

• On pp. 205–206, Fadiman recounts psychologist Evelyn Lee’s research on how Hmong family hierarchies collapsed upon immigration. The authority of clan leaders eroded in the face of bureaucratic systems that recognised only formal credentials, not communal wisdom. This passage sharpened my understanding of how immigration is not just a geographic transition – it is an existential dislocation.

• On p. 274, Fadiman quotes Dr William Zinn’s JAMA article: “Doctors have feelings too.” This reminder is essential. Medical professionals are not villains in this story; they are humans navigating a system that punishes deviation and overvalues certainty. Their rage, sadness, and eventual reflection reveal that better care requires not just systems change – but emotional maturity.

Conclusion

The Spirit Catches You and You Fall Down is not merely a story about epilepsy, the Hmong, or refugee medicine. It is about the consequences of ignoring complexity in favour of control. It challenges clinicians, policymakers, and public health professionals alike to rethink what culturally responsive care looks like. If we are to avoid repeating Lia Lee’s story, we must build systems that honour difference without sacrificing efficacy.

References

1. Fadiman A. The Spirit Catches You and You Fall Down. New York: Farrar, Straus and Giroux; 1997.

2. Felitti VJ, Anda RF, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. Am J Prev Med. 1998;14(4):245–258.

3. Fox M. Lia Lee, whose illness and care led to ‘cultural competence,’ dies at 30. New York Times. 14 September 2012. https://www.nytimes.com/2012/09/15/us/lia-lee-dies-at-30.html.

4. Gee GC, Ford CL. Structural racism and health inequities: Old issues, new directions. Du Bois Rev. 2011;8(1):115–132.

5. Glanz K, Rimer BK, Viswanath K. Health Behavior: Theory, Research, and Practice. 5th ed. San Francisco, CA: Jossey-Bass; 2015:187.

6. Kleinman A, Eisenberg L, Good B. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Focus (Am Psychiatr Publ). 2006;4(1):140–149.

7. Lee HY, Giuliano A, Sato S. The relationships between loneliness, social support, and resilience among Latinx immigrants in the United States. Clin Soc Work J. 2020;48:99–109.

8. Zinn W. Doctors have feelings too. JAMA. 1988;259(14):2139.

That’s a full lid, everyone!