Introduction

The ways in which epidemic diseases like HIV/AIDS, tuberculosis, Ebola and, more recently, COVID-19, have catastrophically swept through nations directly relates to histories of inequality. This is well documented by Davidson and Kos (2017), Richardson (2021), and Farmer (2020), whose works are comparatively assessed in this Review essay. With the recent and unexpected passing of Paul Farmer, it is more important than ever to understand the complex legacy of his work and the ways that he will live on in the work of his collaborators and those he has inspired.

In Epidemic Illusions: On the Coloniality of Global Public Health, Richardson (2021) reflects on his clinical experience in the context of multiple epidemics by sharing how public health at large, as well as the healthcare inequities he observed, have been shaped by colonialism and racism. He explores the systematic way that health systems in low- and middle-income countries were undermined by conditional loans from the World Bank and the International Monetary Fund that required the limiting of public spending, which has led to a dependence on developmental aid funding from wealthier countries such as the United States (see also Hahnel 2002; Pfeiffer and Chapman 2010; Rodney 1972). Richardson attributes this situation more broadly to the contemporary colonial matrix of power, arguing that the largest pandemics that face the world are not due to disease, but rather to the ‘illusions’ that are embedded within and represented by the ‘coloniality of knowledge production’ (5–7).

In Fevers, Feuds, and Diamonds: Ebola and the Ravages of History, Paul Farmer (2020) shares stories of Ebola Virus Disease (EVD) patients in South Africa. He emphasises that while attending to EVD patients during the 2014–2016 outbreak in West Africa, he witnessed the disease being more controlled than it was treated. For instance, Farmer describes how he saw the placing of patients in strict isolation as a kind of abandonment, which led to the deaths of many African people—deaths that could have been avoided by strengthening health systems. While sharing his journey during the Ebola epidemic, Farmer delves into centuries of exploitation and injustice to highlight their impact on the failings of the healthcare system. Farmer also explores the impacts of civil unrest, civil war, refugee crises, and persistent colonial systems of oppression on contemporary health systems.

Based on the experiences of Paul Farmer and the organisation Partners in Health (PIH) which he co-founded, the documentary film Bending the Arc (Davidson and Kos 2017) demonstrates the increasing need to improve care delivery and strategies in global health systems, particularly in low- and middle-income countries. It highlights the narratives of healthcare providers and PIH staff as they attempt to treat tuberculosis and HIV/AIDS in Rwanda, Peru, and Haiti. Their initial attempts to treat patients in these countries were perceived as futile by those in control of health resources, so to find a better solution, PIH implemented whole systems of healthcare access and distribution. This model, called the accompagnateurs (accompaniers) model, involved volunteers and humanitarian organisations in the support of patients’ health through the provision of medicine, food, and health visits (Farmer 2011).

Together, these three works draw awareness to the difficulty of producing equitable health systems and the challenges of accessing healthcare in low- and middle-income countries—which include cost, fear, cultural beliefs, and distance to healthcare facilities—in each case using an anthropological lens to demonstrate the ways that social conditions and relationships shape disease processes over time.

This Review essay aims, through an examination of these three works, to demonstrate the significance of transnational colonialism and structural violence as a contributor to global health inequity, and the increasing presence of co-occurring epidemics in Haiti and other areas of the Global South. The authors are extraordinarily successful in their demonstration of these concepts through narrative, historical events, and ethnographic reflection. These concepts are important in the understanding of the history of major disease outbreaks, particularly the 2014–2016 West African Ebola virus epidemic.

Historical dimensions of colonialism

In an interview with Dr Agnes Binagwaho in Bending the Arc about the way that global health organisations perceive the African populations who are proposed beneficiaries of their projects, the Rwandan physician and Vice Chancellor at the University of Global Health Equity[1] claims that ‘in their scripts, we are black. Uneducated. Of course, stupid. If we give them the drugs, they will not take them on time. You know those Black people; they don’t have a watch’ (Davidson and Kos 2017, 56:38:19). In the following scene, the documentary pivots to a speech by Andrew Natsios, of the United States Agency of International Development (USAID) who, in response to a congressional debate on the question of funding HIV/AIDS treatment in places including Haiti and Rwanda, claimed that ‘[Black] people do not know what watches and clocks are. They do not use Western means for telling time. They use the sun’ (idem, 56:53:07). As Bending the Arc demonstrates, the assumption that people of colour in regions like Haiti and Rwanda were incapable of following Western medical advice was not the only argument made by decision makers to avoid responsibility for human suffering. Other congressional representatives in the United States maintained that the healthcare infrastructure and disbursement of appropriate medicines were ‘primitive’ in places like Haiti. In response, the American economist Dr Jeffery Sachs referred to these claims, as ‘mindset … and institutional obstacles’ that were ‘just enormous’ (idem, 57:18:08). Farmer demonstrates time and again throughout the film that these assumptions and stereotypes, like the institutions and schools of thought from which they stem, are rooted in and informed by ongoing impacts of transnational colonialism.

Among the many strengths of Bending the Arc is its portrayal of unequal relationships in the context of public health and medicine. The documentary highlights the consequences of neoliberal capitalism, and how the West monopolises systems of power. Relationships between nations have long been determined by racialised assumptions, economic inequity, and unequal access to life-saving resources. These same factors perpetuate suffering worldwide.

Just as global capitalism exists as more than an economic order, embedded in the development of public health and its institutions is a longer history of colonial power relations. In Epidemic Illusions, physician-anthropologist Eugene Richardson observes the ways in which public health functions as an apparatus of coloniality. The systems and doctrines that make, manage, and maintain global health inequality makes up what Richardson calls the ‘colonial matrix of power’ (Richardson 2021, 16) that designates the realities of inequality as commonsensical.

Epidemic Illusions also combines lessons from Richardson’s experience fighting Ebola in countries including Haiti and Sudan, to intentionally challenge and disrupt Western epistemological hegemony. This radical deviation from the status quo is embedded in the very structure of the book, which functions in part as a response to Boaventura de Sousa Santos’ (2014) analysis of systemic violence. Richardson not only identifies the problem of preventable disease in what he terms the ‘Majority World’, but also asserts that historically produced ‘universal truths’ are at the heart of coloniality and knowledge production (Richardson 2021, 86). To demonstrate these connections, Richardson references the examples of the large-scale atrocities committed by Leopold II of Belgium in the Congo in the late 19th and early 20th centuries; Cold War clientelism; and regional genocidal wars that emerged from the colonial production of ethnic identity that drew firm boundaries between the ‘haves’ and the ‘have-nots’.

The film Bending the Arc and the monograph Fevers, Feuds, and Diamonds provide a thorough examination of the ideological context surrounding how disease is represented and talked about. This perspective of history-as-pathology is centred on unequal power dynamics between the Global North and the Majority World, and people in Haiti, who have been negatively impacted by this colonial legacy.

By focusing greater attention on the historical patterns of violence and dispossession, both Farmer and Richardson found ways to speak to social, political, economic, and historical determinants of health and wellbeing that lay at the heart of their advocacy work and approach to health.

The role of structural violence

A topic frequently alluded to throughout Bending the Arc is structural violence in its role as a significant contributor to global health inequity. Structural violence is defined as the ‘social structures—economic, political, legal, religious, and cultural—that stop individuals, groups, and societies from reaching their full potential’ (Farmer et al. 2006, 1686). Paul Farmer has made significant contributions to the field of anthropology through his discussion of structural violence (Farmer et al. 2006; Farmer 1996, 2004b), and by extending the use of the term into discussions about health and healthcare access (Farmer 2004a). Poverty, and the structures in place designed to maintain it, are evident throughout the film too and were addressed by Farmer most recently in Fevers, Feuds, and Diamonds. He describes a scenario early in the book that exemplifies structural violence:

All documented Ebola outbreaks—the World Health Organization (WHO) pronounced this one the world’s twenty-fifth—have been registered in settings of profound poverty. By most criteria, that’s an apt description of what one finds in Guinea, Liberia, and Sierra Leone. But in terms of gross domestic product per capita, these three countries were growing faster than the United States or Europe throughout the decade prior to the outbreak. Measured only by this tired calculus, Sierra Leone boasted the world’s highest rate of economic growth in 2013. The engines of this specious boom remain the extractive industries—logging, along with the quest for oil, minerals, precious metals, diamonds, and rubber latex. But profits from these industries rarely remained in the vicinity, and they were almost never invested in public goods, such as robust health systems able to contain epidemics—or to flatten their curves and surges—while caring for the afflicted. Maybe in Norway, but not in West Africa (Farmer 2020, 4).

It is here that we begin to see how global structures, particularly international corporations, and the exploitation of labour, are designed to create deep and permanent poverty, most often affecting those in minority and racialised communities. This results in poor health equity such as the mortality seen during the West African Ebola virus epidemic. If we are to adhere to the four pillars of ethics (beneficence, non-maleficence, autonomy, and justice), then shining light upon the inherent violence that is a part of the structures of our world is a necessary and ethical act (Gillon 1994). It is here that Paul Farmer and Partners in Health are paragons of ethical practice in their efforts to rewrite, shed light on, and correct the harms of structural violence.

However, we cannot shy away from terms that make others uncomfortable, as this softens the message and begins to steer us away from these guiding principles. Candid discussion of structural violence, and the labelling of acts as structurally violent, furthers health equity globally. For instance, it would have been beneficial to the discussion if the creators of Bending the Arc had explicitly used the term ‘structural violence’ in the documentary, an absence that is surprising considering Paul Farmer pioneered the concept (Farmer et al. 2006; Farmer 2004a). According to Farmer, indeed, ‘the concept of structural violence is intended to inform the study of the social machinery of oppression. Oppression is a result of many conditions, not the least of which reside in consciousness’ (Farmer 2004b, 307). Language, in the context of the social sciences, acts as a form of symbolism and the presence or absence of terms or words is an act of symbolic interactionism. Aydin et al. state that:

Language is a symbolic tool that we use to generate thoughts and describe the thoughts which we generate. Language emerges both as a requirement and a product of human activity. The relationship between language and violence and to dominate and establish authority over others through language is related to the social and psychological aspect of language. As it generates and harbours many emotions it also generates and transfers violence (Aydin et al. 2016, 403).

Bending the Arc, then, presented an opportunity to merge the documentary work with public conversation, but failed to take it. Nevertheless, although it omits to explicitly name the term, the film is exemplary in its straightforward demonstration of the impact of structural violence across the globe.

A syndemic perspective

The syndemics theory is rooted in anthropology and was first proposed by Singer (Singer and Clair 2003; Singer 2006; Singer 1996) to describe how co-occurring epidemics interact with each other biologically, and in the sociocultural, economic, and physical environments in which they take place. The syndemics and structural violence of epidemic diseases like HIV/AIDS, tuberculosis, Ebola, and COVID-19 need to be understood as multilevel phenomena shaped by history, political economy, and social context. Syndemics can also be best characterised as ‘useful lenses to bring issues in need of investigation into better focus’ (Nichter 2008, 157). Farmer’s work, as depicted in the film and as detailed in Fevers, Feuds, and Diamonds, provides a signal manifestation of and contribution to the documentation of underlying syndemic factors; the role of power, control, oppression, and social inequality in the making of health and disease are abundantly clear in these works.

Syndemics are known to create a more complicated health experience than any disease or social problem would create alone, and little attention is paid to this in Bending the Arc or in Fevers, Feuds, and Diamonds, nor to how to address these complex concerns. Given Farmer’s experiences and management of communicable diseases in Haiti, and parts of South America and West Africa, and, before his recent passing, his status as one of the most influential contemporary global advocates for health equity, it was surprising that he did not point out the complex illness narratives of patients living in developing economies. The presentation of diseases like HIV/AIDS, tuberculosis, and Ebola in Bending the Arc and Fevers, Feuds, and Diamonds paints an overly simplistic picture of infections and infectious disease and an optimistic viewpoint that the accompagnateurs model is a one-size-fits-all solution to global health delivery. In the latter work, the chapter ‘Ibrahim’s Second Chance’ discusses the presence of other opportunistic infections during the Ebola virus disease outbreak that posed a challenge to caring for patients not only with Ebola but also those with advanced HIV/AIDS, or tuberculosis. In one instance, Farmer clearly describes syndemics but does not pursue its significance within local ecologies and culture:

And some with Ebola were surely afflicted with other infections: blood-sapping parasites beyond malaria, such as hookworm; pneumonia and other bacterial infections; perhaps other viral infections, including HIV disease but also Lassa fever, which may have killed more Sierra Leoneans than Ebola did in 2014; tuberculosis; and a host of other diseases, from leptospirosis (like Lassa, spread by rats) to tick-transmitted pathogens endemic to the region (Farmer 2020, 128).

This would have been the moment to tell the story of a complex pandemic like Ebola through a patient’s voice rather than Paul Farmer’s (or, indeed, that of fellow PIH’s co-founders Jim Yong Kim or Ophelia Dahl). Specifically, such a focus could have addressed how adverse interactions of hunger, stigma, and suffering influence experiences of disease and co-infection, further complicating patients’ ability to navigate care.

Diversifying and including additional narratives in the film and in Fevers, Feuds and Diamonds would have helped to showcase the lived experience of patients with HIV/AIDS, tuberculosis, and Ebola, and their co-infections, more clearly to a wide audience. This would have been an ideal way, from patients’ own perspectives, of raising awareness for people elsewhere, who otherwise have little knowledge of these infectious diseases and their ties to persistent social and economic inequalities, and particularly of the difficulty in implementing global health programmes in poverty-stricken communities. The patient perspective needs to be brought to the forefront of global health. We see a good example of this in Farmer’s earlier book AIDS and Accusation (1992).

Conclusion

Paul Farmer’s work has had a tremendous effect on policy and the ways in which social scientists and health researchers approach the subject of global health from a holistic, more comprehensive model of care. His enduring commitments to create positive social change and to improve the lives of the poor are evident in the film and the books we review here. The authors demonstrate the importance of language and being explicit about the interconnectedness of the history of transnational colonialism, structural violence, and syndemics when discussing global diseases. Our fundamental critique is that in the public-facing film Bending the Arc, Farmer and his colleagues should not have shied away from the messiness of everyday encounters in global health settings—thus projecting to a wider public the essential political stakes in global health.

Acknowledgements

The author would like to thank Reviews section editor Marlee Tichenor and the wider MAT team for their help in finalizing this Review.

About the authors

Priscilla Medeiros has been a Knowledge Specialist at the Edwin S.H. Leong Centre for Healthy Children since April 2022. She is passionate about community-engaged research and the implementation of research findings in practice. Priscilla holds a PhD in Anthropology from McMaster University, Canada and a Postdoctoral Fellowship from Women’s College Hospital. 

Allyson Oliphant is a clinical ethics fellow and doctoral candidate in health and rehabilitation sciences at Western University. Allyson’s work focuses on medical assistance in dying through a lens of critically applied medical anthropology.

Steven Barrow is a community-based researcher and social service worker with a passion for restorative practices and community-building. Steven holds a PhD in Canadian History from Queen’s University in Kingston, Ontario. 

Priyanka Gill is a clinical research assistant who is passionate about achieving equal healthcare access opportunities for all. Priyanka holds a BSc in Biology from Western University. Priyanka aspires to further her education to bring together her determination to improve healthcare equity with her desire to innovate and create new disease treatment and diagnosis solutions.

Footnotes

1. Agnes Binagwaho and Paul Farmer founded the University of Global Health Equity. It is an initiative of Partners in Health.↩︎

References

Aydin, Selçuk, Atil Çiçek, Melih Artunay, and Aliye Certel. 2016. ‘An Essay on the Phenomenon of Violence and Alienation Originate in the Context of the Symbolism and Signification Process’. International Journal of Social Science and Humanity 6 (5): 402–7. https://doi.org/10.7763/ijssh.2016.v6.680.

Davidson, Kief, and Pedros Kos, dir. 2017. Bending the Arc. New York, NY: Impact Partners, Netflix.

de Sousa Santos, Boaventura. 2014. Epistemologies of the South: Justice Against Epistemicide. Abingdon: Routledge.

Farmer, Paul. 1992. AIDS and Accusation: Haiti and the Geography of Blame. Berkeley, CA: University of California Press.

Farmer, Paul. 1996. ‘On Suffering and Structural Violence: A View from Below’. Daedalus 125 (1): 261–83. http://www.jstor.org/stable/20027362.

Farmer, Paul. 2004a. ‘Political Violence and Public Health in Haiti’. New England Journal of Medicine 350 (15): 1483–86. https://doi.org/10.1056/nejmp048081.

Farmer, Paul. 2004b. ‘An Anthropology of Structural Violence’. Current Anthropology 45 (3): 305–25. https://doi.org/10.1086/382250.

Farmer, Paul. 2011. ‘Accompaniment as Policy’. Commencement address, John F. Kennedy School of Government, Harvard University, May 25 2011. Office of the Secretary-General’s Special Adviser on Community-based Medicine & Lessons from Haiti. https://www.lessonsfromhaiti.org/press-and-media/transcripts/accompaniment-as-policy/.

Farmer, Paul. 2020. Fevers, Feuds, and Diamonds: Ebola and the Ravages of History. New York, NY: Farrar, Straus and Giroux.

Farmer, Paul, Bruce Nizeye, Sara Stulac, and Salmaan Keshvajee. 2006. ‘Structural Violence and Clinical Medicine’. PLoS Medicine 3 (10): 1686–91. https://doi.org/10.1371/journal.pmed.0030449.

Hahnel, Robin. 2002. The ABCs of Political Economy: A Modern Approach. London: Pluto Press.

Gillon, Raanan. ‘Medicine Ethics: Four Principles Plus Attention to Scope’. British Medical Journal 309 (6948): 184–88. https://doi.org/10.1136/bmj.309.6948.184.

Nichter, Mark. 2008. Global Health: Why Cultural Perceptions, Social Representations, and Biopolitics Matter. Tucson, AZ: University of Arizona Press.

Pfeiffer, James, and Rachel Chapman. 2010. ‘Anthropological Perspectives on Structural Adjustment and Public Health’. Annual Review of Anthropology 39 (1): 149–65. https://doi.org/10.1146/annurev.anthro.012809.105101.

Richardson, Eugene. 2021. Epidemic Illusions: On the Coloniality of Global Public Health. Cambridge, MA: MIT Press.

Rodney, Walter. 1972. How Europe Underdeveloped Africa. London: Bogle-L’Ouverture Publications.

Singer, Merrill. 1996. ‘A Dose of Drugs, a Touch of Violence, a Case of AIDS: Conceptualizing the SAVA Syndemic’. Free Inquiry in Creative Sociology 25 (2): 99–110.

Singer, Merrill. 2006. ‘A Dose of Drugs, a Touch of Violence, a Case of AIDS, Part 2: Further Conceptualizing the SAVA Syndemic’. Free Inquiry in Creative Sociology 34 (1): 39–53.

Singer, Merrill, and Scott Clair. 2003. ‘Syndemics and Public Health: Reconceptualizing Disease in Bio-Social Context’. Medical Anthropology Quarterly 17 (4): 423–41. https://doi.org/10.1525/maq.2003.17.4.423.