We would like to highlight the release of two special issues this month. First, Critical Public Health’s second issue of the year is dedicated to “Public health activism in changing times: re-locating collective agency,” edited by Catherine Campbell and Flora Cornish. The papers “call for a radical expansion of the gaze of public health to take account of new, and also pre-existing but previously unrecognised, forms of health activism.”
Second, a special section of this month’s issue of Medicine Anthropology Theory, under the stewardship of Adriana Petryna and Sara Randell, focuses on the theme of the “COVID horizon.” Authored by physician-anthropologists engaging with what Petryna calls “horizoning work,” “the Position Pieces describe vital searches for liveability in domains of emergency response.”
Public health activism in changing times: re-locating collective agency (open access)
Catherine Campbell & Flora Cornish
How is public health activism adapting to changing times, which often seem increasingly hostile to human rights and social justice claims? The study of collective agency by vulnerable groups and their allies, to advance the health-enabling redistribution of material resources and social recognition, has often regarded the social movement as gold standard. This special issue challenges this ‘one size fits all’ template for activism with 15 case studies of contemporary state-of-the-art public health practice in seven countries (Australia, Britain, China, Puerto Rico, South Korea, Spain, and Zimbabwe, nested within wider global contexts). Exploring assumptions about power and social change, the papers call for a radical expansion of the gaze of public health to take account of new, and also pre-existing but previously unrecognised, forms of health activism.
Campaigns against the privatisation of healthcare in the UK have often focused on saving, or preserving, the post-war National Health Service (NHS) of the 1950s. They talk of it as a ‘national treasure’, which has long given the UK some moral high ground over countries such as the United States. I argue that seductively simplified campaign slogans can also be blunt – they can carry with them more opaque messages such as those that encourage the maintenance of a patriarchal healthcare system. As a result, campaigns to save the NHS of the 1950s also preserve the nationalism, as well as the class and gendered staffing hierarchies, which (as I illustrate) come to reproduce inequalities in the care that is delivered. Through a multi-cited ethnography focused on the delivery of hip replacements in the NHS, I argue that a more complex form of political activism is needed to bring about the equality in healthcare that the NHS promises. In this paper, I flatten assumed hierarchies of power, to highlight some ethnographic examples of how everyday actions can come to reshape antiquated power structures. I conclude by suggesting we look to how power is pieced together across networks – and how we can re-locate collective agency to within and amongst ourselves to bring about a more equal, and less nationalistic, healthcare service.
Britain was the first country in the world to prescribe diamorphine (pharmaceutical-grade heroin) to heroin users as a treatment for opioid dependency. Known and admired internationally as the British System, Britain has a somewhat more ambivalent relationship to its own invention. Where patients were once prescribed diamorphine and other injectable opioids on an unsupervised basis, new patients are no longer initiated in this way and those existing ‘old system’ patients are under threat. Carrying out ethnographic research at an advocacy service for people who use drugs, I explore this threat as an onto-epistemological concern and the advocates’ work to sustain these ‘old’ ways of knowing and being with diamorphine as a collective matter of care and action. Accounting for advocacy as a non-objective ‘emboldening’ of the individual to speak, the advocates draw our attention to the inequity of knowledge production and the collective act of speaking in an environment that is increasingly hostile towards these patients. As neoliberal political economies interact with stigmatising forces against people who use drugs, the article highlights the advocate’s work as essential in allowing these patients’ concerns to be heard where a threat to their prescription becomes a threat to their very way of living.
The corporate killing movement in South Korea: a critical realist analysis of social structure and collective agency
Juyeon Lee, Myoung-Hee Kim & Erica Di Ruggiero
South Korea has one of the highest occupational injury fatalities among the OECD countries over the past decades. It was in this context that the ‘Corporate Killing’ Movement was initiated in the early 2000s with the aim of radically reframing recurring fatal workplace injuries as a social problem by claiming that ‘a worker’s death is a corporate killing’. By drawing on Roy Bhaskar’s dialectical critical realism in combination with framing literature, this paper aims to trace the emergence and development of collective agency in the Corporate Killing Movement in Korea, paying particular attention to the implications of the formation of a united front of labour and a labour-civic alliance. We conducted in-depth interviews with 10 key informants from multiple sites of action, including civil society, organized labour, political party, and governments, all of whom have engaged in the Corporate Killing Movement over the past years. Drawing on Roy Bhaskar’s dialectical critical realism, this study identifies structural constraints affecting the collective agency of workers against fatal workplace injuries, and specifies the emancipatory, liberating power of collective agency to transform the very structures in which they were embedded. The research findings are also expected to inform future public health activism of how collective agency in a relatively narrow area of activism can gain momentum through the formation of an alliance with heterogeneous groups of agents. This is achieved by establishing a shared understanding of a common causal mechanism at the structural level that cuts across different issues.
Decolonising the ‘safe space’ as an African innovation: the Nhanga as quiet activism to improve women’s health and wellbeing
Nyaradzayi Gumbonzvanda, Farirai Gumbonzvanda & RochelleAnn Burgess
Contemporary power and decolonisation discourses reflect how Eurocentric and Western analysis has shaped our understandings of the world. Decolonisation efforts within Global Health and feminist studies (including what counts as valid forms of women’s organising) also require a reclaiming of praxis developed within historically oppressed countries lost through erasures of knowledge-production. Our work contributes to these efforts through an analysis of a form of collective activism for women’s health and development in Zimbabwe: the Nhanga. This traditional cultural practice is anchored to intergenerational women only ‘safe spaces’, a praxis pre-dating second-wave feminist theorising on such ideas. Currently, Nhangas are used by the Rozaria Memorial Trust across community, national and global advocacy spaces to promote women’s health. Using collaborative autoethnography, each author’s personal accounts of engagement in the Nhanga interrogate the processes that promote change in women’s lives. Our analysis suggests that the Nhanga fractures systemic, institutional and relational power through leveraging culture, emotions and narrative, in spaces where such dynamics are often overlooked. We conclude that the method offers a valuable form of collective organising: fully engaging with the complex relational, political, social, and cultural environments that impact on health, through a quiet activism anchored to emotion, connection, and re-imagining of culture to promote change at individual, community, and global levels.
Health movements in the age of austerity: rescaling resistance in Spain and the United Kingdom
Olatz Ribera-Almandoz & Monica Clua-Losada
Since the outbreak of the global financial crisis that started in 2007/8, austerity measures have been promoted in many European countries. Frequently justified as a form of crisis-management, these measures have been used to further privatise and deregulate welfare systems, as well as to reinforce the isolation of certain decision-making arenas from democratic processes. At the same time, they have also generated new strategic opportunities for resistance to different forms of anti-austerity disruptive agency. The paper analyses the rescaling strategies implemented in public health services in Spain and the UK during the current economic crisis, and contributes to the understanding of the scalar dynamics and strategies of two social struggles against the privatisation of hospitals and health centres in these two contexts: Marea Blanca (White Tide) in Madrid and Keep Our NHS Public in Greater Manchester. It argues that social movements are more successful when they exploit scale shifts to transform institutions into centres of resistance.
Patient advocacy and media coverage are important strategies for changing health policies. China is no exception. Through 31 interviews and content analysis of 1,136 news stories related to hepatitis B, this study revealed how members of Chinese health advocacy groups strategically built a coalition with the news media, actively played the role of ‘policy entrepreneurs’, and successfully affected the framing of hepatitis B. As a result, China’s grassroots civil societies not only successfully attracted public attention to the previously ignored problem of discrimination against people affected by hepatitis B but also impacted on the state’s rewriting of public policies on this disease.
‘I’m not an activist!’: digital self-advocacy in online patient communities (open access)
Allegra Clare Schermuly, Alan Petersen & Alison Anderson
For patient communities, digital media have dramatically transformed the options for action. This includes working collectively to change policies in ways that would have been difficult, if at all possible, before the internet. Yet, to date, the impacts of patients’ growing use of digital media on their sense of collective agency have been little explored. Drawing on the findings from an Australian study on patients’ use of digital media to access treatments (involving 50 interviews with participants from HIV/AIDS, breast cancer and neurodegenerative communities) and using a governmentality lens, this article sheds light on the changing character of patients’ sense of agency in an age of digital media. We identify a shift in patients’ conceptions of their agentic selves associated with the growing use of these media – from ‘activists’ to ‘advocates’ – and consider the implications for critical public health. As we argue, this ‘digital self-advocacy’ is manifest in patients’ accounts of how they use digital media to achieve their goals and reflects the responsibilisation that is a hallmark of neoliberal governance. We suggest that digital self-advocacy offers a restricted vision of patient agency that limits rather than facilitates actions needed to respond to crises and to advance health justice. In our conclusion we consider whether the context and the nature of a condition or disease may also have a bearing on patients’ sense of agency in an age of digital media, making reference to patient responses to a new illness phenomenon dubbed ‘long COVID-19ʹ.
Forging compromiso after the storm: activism as ethics of care among health care workers in Puerto Rico
Jessica M. Mulligan & Adriana Garriga-López
Puerto Rico was hit by a category 4 hurricane that severely damaged power, water, and communications systems on the 20th of September 2017. Based on 56 qualitative interviews, this article documents how health care workers created a new ethics of care after Hurricane Maria and engaged in novel forms of health activism to both repair past damage and imagine a different future. Many doctors, nurses, and other health care professionals went to work after the storm treating patients, fixing their workplaces, and resolving logistical problems. Health care workers responded emotionally to the event by finding meaning and purpose in their work, forging a sense of solidarity, and valuing their ability to help others. Our respondents used the term compromiso to describe their determination and sense of purpose, and we borrow this term to label the specific ethics of care generated from their experiences after Maria.
Drawing on testimonies from oral history interviews with HIV/AIDS community activists and PrEP users, this paper analyses new forms of collective action in relation to the efforts to implement PrEP in England. The analysis of this PrEP response, delivered by an assemblage of independent actors and public health-related agents exposes three important aspects in relation to the lived experiences of first-wave PrEP users and HIV activists: (i) the negotiation of PrEP as a medical commodity, (ii) the use of gay dating apps as enabling technologies in regard to peer support, and (iii) the fact that access to PrEP was not equally distributed and differed between gay communities. This paper concludes that although this response was effective in decreasing HIV infection, it was only partially transformative in terms of social/health justice. However, the response featured forms of collective action that contrasted with the individualistic paradigm of the biomedicalisation of HIV prevention, pointing to a shift in future HIV prevention interventions.
Clinician-led evidence-based activism: a critical analysis (open access)
Piyush Pushkar & Louise Tomkow
We introduce and critique a previously unexamined form of evidence-based activism (EBA): clinician-led evidence-based activism (CLEBA). In recent years funding of, and access to, the UK’s National Health Service (NHS) have been depleted through cuts, privatisation, and the reduction of universal healthcare. In these austere and hostile times, the legitimacy of those drawing attention to resultant health inequalities is eroded. One tactic that doctors have adopted while advocating for the delegitimized has been CLEBA: strategic use of clinical authority in the production and mobilization of knowledge for the governance of health issues. To illustrate the concept, we analyse two cases of CLEBA in the NHS in which we have participated. The first resisting cuts and privatisation of the NHS, the second resisting the charging of forced migrants for healthcare. By analysing CLEBA as a tactic, we show how doctors work to effect progressive goals by lending legitimacy to their allies, who are delegitimised by opponents as ‘loony-left’, ‘shroud-waving’ ‘health tourists’. This approach to the problem of legitimacy separates CLEBA from EBA. Whereas EBA seeks to rebalance unequal social relations within a doctor-patient collective, CLEBA capitalizes on the symbolic power of doctors to contest unequal social relations out with the collective. By lending clinical authority to activist discourses, CLEBA consolidates forms of collective agency in which certain actors remain illegitimate. In contrast with EBA, where the rebalancing of legitimacy itself is prioritized, CLEBA reinforces a hierarchy of legitimacy that places clinicians on top.
Medicine Anthropology Theory (Open Access)
The COVID Horizon: Introduction to the Special Section
Adriana Petryna & Sara Rendell
Prompted by long-standing realities that have recently erupted during the pandemic and ongoing protests against racial injustice in the US, this Special Section’s essays evolved out of conversations around the theme of the ‘COVID Horizon’. Authored by physician-anthropologists at various stages of their training, the Position Pieces describe vital searches for liveability in domains of emergency response. Moving beyond the walls of the clinical, they track medicine as an institution embedded in and shoring up other institutions linked to human rights, carceral detention, reproductive unfreedoms, and/or pandemic biocontainment—all of which define the scope of democratic freedoms and determine who exactly is afforded said freedoms. Within institutions of deferred or dislocated responsibility, the essays probe tensions between action and abstention, distance and proximity, futility and hope, and containment and freedom with the objective of dismantling forms of ‘démission’ (Fanon 1952) or abdication and locating an actionable ‘otherwise’ allowing for accountability and solidarity. The contributors’ ‘horizoning work’ (Petryna 2018) imagines a different ground from which to anticipate the role of medicine in the 21st century.
The US’s authority as chief enforcer of human rights grows increasingly illusory as civil unrest brings the quotidian nature of racialised human rights violations in the US into a frame shared by authoritarian regimes. This reality animates my analysis of how an organisation I call Doctors for Humanity (DfH) finds its footing in a terrain of human rights enforcement that is shifting from a global to a domestic focus. The US is not an actual space of freedom but often represents the limit of possible freedoms. This horizon evokes something that always could be but never has been and unmasks what I analyse as a constitutive unfreedom at the heart of liberalism in American empire. To attend to human rights violations in the US is to undermine American authority and its right and responsibility to make claims about the actions of other nations. As a future physician and human rights advocate invested in racial justice, I illuminate the paradoxes of ethical action within a context where the possibility of freedom for some depends upon the unfreedom of others. To effectively police human rights from this perspective necessitates the deconstruction of the US as a space of freedom, pointing instead towards a praxis of global human rights which lives up to the concept’s aspirational universality.
COVID-19 brought masking, a practice that was largely confined to certain technical occupational settings in the US, into the heart of a national controversy. As with prior emerging infectious diseases (such as HIV, SARS, and Ebola), US public health experts and governmental agencies positioned themselves as authoritative producers of emerging scientific knowledge, including best practices for public masking. US epidemiological outcomes, however, have sorely lagged behind many other countries. The US leads the world in confirmed cases of and deaths from COVID-19, undermining presumed hierarchies in global health authority today. In this essay, I compare US and Taiwanese masking policies, delineating how social relations of care in the US become sites of political conflict within a hierarchical global ecology of scientific knowledge and medical supplies. Drawing upon my experience as an MD/PhD in anthropology trainee studying emerging infectious diseases and as a Taiwanese American immigrant, I explore conflicts over mask acquisition and usage across borders and time, illuminating global inequities of scientific knowledge production and pandemic containment and underscoring racialised disavowals that persist in US public health. These racialised disavowals illustrate the structural limits that circumscribe possibilities of containment during an uncontained pandemic.
A ubiquitous facet of collective social life in the age of COVID-19, social distancing (that is, the set of practices that aims to reduce the number of people in public spaces and maximise the distance between them) works to suppress viral spread by de-densifying public spaces; it redistributes people who are vectors for the virus by pushing them into their own domestic spaces. While the scale of these manoeuvres is in some ways unprecedented, the toll that the virus and its primary means of mitigation—social distancing—extracts along racial lines is at once unequal and deeply familiar. In this Position Piece, I examine social distancing as de-densification within a larger history of family planning and racialised population management in the context of ongoing fieldwork on the material and affective implications of contraceptive use in the American Midwest. In probing the grammar of social distancing—its distinctions between ‘essential’ and ‘non-essential’ workers, services, and spaces and the ways in which such distinctions unequally distribute the labour of de-densification and its impacts on family planning—I elucidate how COVID-19 managements do not simply reveal existing racial disparities, but make them anew at a time when the fabrics of social reproduction are increasingly under strain. The dynamics of social distancing can thus be understood as continuous with ongoing attempts at racialised population management. Such an understanding opens a space for political action foreclosed by a narrow view of social distancing as crisis response.
In light of COVID-19 infection control measures, which establish a minimum distance of 6 feet between bodies, many have emphasised the need to maintain social closeness despite physical distance. This Position Piece considers the flip side of this concern: in key spaces that structure social interactions in the US today, physical closeness does not equal social closeness. ‘This country is like a prison,’ one of my interlocutors told me, pointing to carceral histories of social distancing that predate COVID-19. Moreover, in the co-constituted spaces of criminalisation and justice, punishment and care, distance and proximity, and carceral freedom, the physical closeness of people that could have registered as social closeness is precluded, culminating in deadly disregard. Drawing on my medical training and on fieldwork documentation of medical harms in the US Immigration and Customs Enforcement (ICE) detention apparatus, I consider how non-responsiveness spreads within and beyond institutions of immigration enforcement. I suggest that medical providers are implicated in what I call ‘contagious containment’—that is, the impulse to distance oneself from harmful realities in which one’s clinical practice is complicit. This distancing reinforces the idea of humanity being a scarce resource, especially when the racialised stratification of economic and political resources is preserved in and through institutions like ICE detention. Contagious containment offers the fantasy of separating one’s clinical work from the apparatus of harming and, so long as such reservoirs of life-threatening disregard remain, such contagion can (and does) spread.
Entrenched structural inequalities raise challenging questions of how socially-oriented research initiatives are likely to improve health for marginalised people. The recent inclusion of transgender women in the National HIV Behavioral Surveillance (NHBS), an ongoing initiative funded by the Centers for Disease Control and Prevention (CDC) to study the HIV epidemic in the US, is designed to redress the exclusion of transgender people from past HIV research and to confront the disproportionate burden of HIV on transgender women through the production of specific knowledge about HIV risk factors in this population. The hope is that such research will ameliorate the burden of HIV among transgender women. Building on a decade-long ethnographic engagement with transgender activists and health practitioners, I delve into tensions between the health research that sustains this horizon of hope and what I call the ‘mirage’ of social medicine research. My interlocutors call out this mirage of scientific optimism in which ‘all the answers are already known’, suggesting that health research oriented towards social justice simply begets more research. Nonetheless, my interlocutors engaged with me, a physician-anthropologist trainee, in order to insist on the ethical necessity of including transgender people in health research even as they exposed the limits of such inclusion and, more broadly, the limits of medicine’s power to redress social injustice. We should follow their lead, embracing neither futility and hopelessness nor the mirage of medical salvation, in order to build collaborative relationships in the service of a more caring social medicine.