Nora J. Kenworthy

Producing a worthy illness: Personal crowdfunding amidst financial crisis

For Americans experiencing illnesses and disabilities, crowdfunding has become a popular strategy for addressing the extraordinary costs of health care. The political, social, and health consequences of austerity--along with fallout from the 2008 financial collapse and the shortcomings of the Affordable Care Act (ACA)--are made evident in websites like GoFundMe. Here, patients and caregivers create campaigns to solicit donations for medical care, hoping that they will spread widely through social networks. As competition increases among campaigns, patients and their loved ones are obliged to produce compelling and sophisticated appeals. Despite the growing popularity of crowdfunding, little research has explored the usage, impacts, or consequences of the increasing reliance on it for health in the U.S. or abroad. This paper analyzes data from a mixed-methods study conducted from March-September 2016 of 200 GoFundMe campaigns, identified through randomized selection. In addition to presenting exploratory quantitative data on the characteristics and relative success of these campaigns, a more in-depth textual analysis examines how crowdfunders construct narratives about illness and financial need, and attempt to demonstrate their own deservingness. Concerns with the financial burdens of illness, combined with a high proportion of campaigns in states without ACA Medicaid expansion, underscored the importance of crowdfunding as a response to contexts of austerity. Successful crowdfunding requires that campaigners master medical and media literacies; as such, we argue that crowdfunding has the potential to deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally-distributed literacies to demonstrate deservingness and worth. Crowdfunding narratives also distract from crises of healthcare funding and gaping holes in the social safety net by encouraging hyper-individualized accounts of suffering on media platforms where precarity is portrayed as the result of inadequate self-marketing, rather than the inevitable consequences of structural conditions of austerity.

Participation, decentralisation and déjà vu: Remaking democracy in response to AIDS?

Participation, decentralisation and community partnership have served as prominent motifs and driving philosophies in the global scale-up of HIV programming. Given the fraught histories of these ideas in development studies, it is surprising to encounter their broad appeal as benchmarks and moral practices in global health work. This paper examines three intertwined, government-endorsed projects to deepen democratic processes of HIV policy-making in Lesotho: (1) the ‘Gateway Approach’ for decentralising and coordinating local HIV responses; (2) the implementation of a community council-driven priority-setting process; and (3) the establishment of community AIDS councils. Taken together, these efforts are striking and well intentioned, but nonetheless struggle in the face of powerful global agendas to establish meaningful practices of participation and decentralisation. Examining these efforts shows that HIV scale-up conveys formidable lessons for citizens about the politics of global health and their place in the world. As global health initiatives continue to remake important dimensions of political functioning, practitioners, agencies and governments implementing similar democratising projects may find the warnings of earlier development critics both useful and necessary.

From a global crisis to the ‘end of AIDS’: New epidemics of signification

ABSTRACT In the past decade, discourses about AIDS have taken a remarkable, and largely unquestioned, turn. Whereas mobilisations for treatment scale-up during the 2000s were premised on perceptions of an ‘epidemic out of control’, we have repeatedly been informed in more recent years that an end to AIDS is immanent. This new discourse and its resulting policies are motivated by post-recession financial pressures, a changing field of global institutions, and shifting health and development priorities. These shifts also reflect a biomedical triumphalism in HIV prevention and treatment, whereby shorter term, privatised, technological, and ‘cost-effective’ interventions are promoted over long-term support for antiretroviral treatment. To explore these changes, we utilise Treichler’s [(1987). How to have theory in an epidemic: Cultural chronicles of AIDS. Durham, NC: Duke University Press] view of AIDS as an ‘epidemic of signification’ to develop a review of ‘End of AIDS’ discourses in recent years. We use this review to investigate the political and philanthropic interests served by efforts to rebrand and re-signify the epidemic. We also hold up these discourses against the realities of treatment access in resource-poor countries, where ‘Ending AIDS’ has not heralded the end of an epidemic per se, but rather the end of external support for treatment programmes, highlighting new difficulties for sustaining treatment in this new era of the epidemic.

Critical perspectives on the ‘end of AIDS’

ABSTRACT This special symposium critically examines optimistic promises about an imminent ‘end of AIDS,’ currently circulating in global health discourse and policy. We aim not simply to interrogate the discourse surrounding calls to end AIDS, but to also explore the broader practices, contexts, and policy landscapes that have transformed the global HIV response during the fourth decade of the epidemic and allowed this discourse to gain such political traction. In this introduction we preview the collection’s five substantive papers, which delve beneath the ‘end of AIDS’ rhetoric, bringing greater realism as well as resolve together with empirical evidence about the state of efforts to end AIDS in diverse locations and populations. Taken together, these papers critique not the hope that one day AIDS may come to an end, but the means by which current policy expects to arrive at such ends, particularly in the absence of realistic, sustained commitments to extending treatment, prevention, and broader support in highly under-resourced places and populations.

From revolution to rights in South Africa: Social movements, NGOs and popular politics after apartheid

This collection of essays by anthropologist Steven Robins constitutes a broad investigation into South Africa’s changing political worlds in the post-apartheid era. Drawing on a wide range of subject matter, these essays interrogate new forms of political subjectivity both promising and troubling within contemporary social movements in South Africa. Robins’ subjects include not only the grassroots associations of indigenous people, HIV patients and shantytown residents, but also their more institutionalised and global non-governmental counterparts. From Revolution to Rights in South Africa offers readers a much-needed tour of the inner workings of contemporary political landscapes in Africa and of the citizen subjectivities that produce, and are produced by, new political encounters. The book’s title points more towards its historical moorings than to its theoretical arguments. Robins’ inquiry occupies a decidedly post-revolutionary world, peppered with non-governmental organizations (NGOs), social movements and emergent activist campaigns that are taking up the language of rights enshrined in South Africa’s new constitution. It is how these activists, their fellow citizens, and their NGO partners make use of these rights that occupies Robins’ attention. What he observes and this should come as little surprise to his fellow anthropologists is that the liberal western paradigm of democratic rights is not something to be simply imported, unpacked and implemented. Instead, Robins’ research documents the ways that activists strategically confront and navigate the tensions between individualist rights discourses and communal cultural claims. Robins sets out to counter three propositions from contemporary theories of political agency and civil society. The first is post-Cold War forecasts of an ‘end of politics’ marked by hyper-individualism, acute self-governance and weakened social movements. The second proposition builds upon Mamdani’s (1996) descriptions of a bifurcated African state, divided between individualised, rights-oriented, urban citizens and ethnic, tradition-oriented, rural subjects. In response to these, Robins points to vibrant new forms of citizen engagements that draw on, and creatively reconstitute, multiple and hybrid identities. The third proposition is rooted in Chatterjee’s (2004) critique of civil society as the enclave of the elite, and Hardt and Negri’s (2000) descriptions of NGOs as the ‘handmaidens of empire’. In response, Robins situates himself firmly on the side of NGOs and social movements, while arguing that the forms of engagement by which they gain their successes and the ways in which citizens align themselves with them are neither as simple nor as unidirectional as we might think. Global Public Health Vol. 7, No. 6, July 2012, 661 663

Boundaries of contagion: How ethnic politics have shaped government responses to AIDS

How is it that some governments could respond so aggressively to HIV, while others’ AIDS skepticism directly stymied efforts, and still other governments remained mired in bureaucratic fumbling for many years? The question has preoccupied researchers and activists alike for nearly a decade, with the lives lost to delays in provision a constant reminder of the need for not only better care and treatment, but for more responsive and responsible government. Boundaries of contagion is Evan Lieberman’s long-awaited offering to this conversation, and a significant contribution in a discipline that has largely remained silent in discussions of the politics of HIV response. He proposes that salient and institutionalised boundaries between ethnic groups impede political leaders’ inclinations to implement strong HIV policies, regardless of their own ethnic affiliation or the epidemiologic realities across ethnic groups in the nation. Part of the silence among political scientists on this issue is attributable to the difficulties of developing rigorous cross-national analysis of shifting constructs, like political willingness or HIV policies. Scholars have also struggled to sift out political dynamics from the epidemiological, historical and cultural factors shaping HIV response. Certainly, Lieberman’s foremost contribution in this work is his ability to side-step these difficulties: he presents a painstakingly built, elegant, multi-method analysis that allows him to develop well-considered quantitative measures for crossnational analysis. Boundaries of contagion builds conceptually from Lieberman’s previous work on boundary institutions and economic policy, in which he develops a case comparison of South Africa and Brazil and argues that informal and formal ethnic boundary institutions establish, or more often reinforce and politicise, lines of ethnic difference within nations. In this book, Lieberman hypothesises that institutionalised boundaries of difference facilitate ‘shaming and blaming’ for HIV across ethnic groups, thereby reducing the desire of any single group to advocate for better HIV policies, and the inclination of political leaders to risk widespread support by implementing those policies. The premise of this theory is an all-too-familiar one to those working in public health or anthropology: Lieberman capitalises on the widespread tendency of societies or groups affected by HIV to blame the Other, or an other, for spreading the virus. After his introduction and a discussion of boundary politics, Lieberman launches into a thoughtful application of international relations concepts to the dynamics of what he terms the ‘Geneva Consensus’ on HIV response in Chapter 3. Chapter 4 develops a ‘model-building’ case study comparison between the responses of Brazil and South Africa, and Chapter 5 tests the theory of boundary politics by comparing