Current Research Project

Toward a Sustainable AIDS Education: Responses to the Pandemic in the Fine Arts and Popular Culture

By: Dr. Penelope Ironstone-Catterall

My dissertation, Crisis, Trauma, and Testimony: The Work of Mourning in the ‘Age of AIDS,' earned me a departmental nomination for the York University Dissertation Prize. In this work, I explore the critical tensions among politics, history, culture, and the social in a number AIDS discourses. What makes this study unique is that I consider these discourses of AIDS through a sustained discussion of the hinge concepts of crisis, trauma, mourning, and testimony. I argue that thinking through these concepts serves to trouble the epistemological, biomedical, political, historical, and literary models that have been mobilized in the past two decades to render the "AIDS crisis" intelligible. Through these concepts, my dissertation provides a critical reading of the theoretical discussion occasioned by AIDS and offers an intervention in contemporary discussions of the work of mourning and psychical trauma. I then explore the implications of this intervention for AIDS activism, historiography, German, French, and English literary testimony to the pandemic, and pedagogy. My concern was to sketch out the basis for an ethics of reading and writing that reflects on the limits, responsibilities, and implications of thought when responding to difficult knowledges (Britzman 1998).

This research is intended to further explore the theoretical assumptions and claims I made with regard to HIV and AIDS in my dissertation by considering the ways that education is thought about in representations of AIDS in different media. Central to the argument I worked through in the dissertation was that AIDS challenges the rhetorical rights of reference — the discursive ordering of the times, spaces, and subjectivities of the pandemic — through which intelligibility is constructed and assumed. Instead of focusing on textual representations of AIDS in theoretical discourses, activist accounts, historiography, and literature as I did in my dissertation, I plan to bring my analysis to two related domains of response to the pandemic. First, I will consider how the experience of AIDS has affected the fine arts and how it has been represented in them. Next, I will explore popular cultural representations of the disease syndrome and how these have shaped popular conceptions of HIV and AIDS. In both cases, I wish especially to examine how different media both reflect and challenge resistances to the information of AIDS. I will explore the ways that fine arts and popular cultural representations have participated in the normalization of AIDS, and also the ways in which alternative representations might serve to challenge what has been, especially since the "Protease Moment" of 1996, a growing complacency about the pandemic. Following William Haver (1994; 1996), it is my guiding contention that the what has been called the "AIDS crisis" is not over despite this growing complacency, and that, in the coming years, educators will be called upon to rethink and reinvigorate AIDS education as rates of morbidity and mortality rise in parts of the world where they had been on the decrease, as drug therapies fail to provide long-term palliation, and as global rates of morbidity and mortality continue to demand sustained attention and intervention.

The task of locating and critically assessing different resources for AIDS education will be a central focus of this project. A number of questions will guide my research, and will also serve as criteria for selecting materials with which to work closely. How have the arts have mobilized to make sense out of historical traumas of AIDS and bear witness to the myriad of difficulties these traumas pose to our sense of history, ourselves, and what binds us together in human communities? How have the difficult recognitions of AIDS been communicated in popular culture? How do alternative cultural genres appeal to the world- and sense-making in the face of the world- and sense-shattering realities and complexities called "living with AIDS"? How do these representations make their way into the lexicon of popular culture and with what effects? What do these representations mean for AIDS education, and health education and communication more generally? These broader questions of health and illness need to be brought to the task of imagining what an alternative and sustainable AIDS Education might look like.

My approach to these explorations will be interdisciplinary, and will draw on my extensive background in both the humanities and the social sciences. My central research agenda, and what underpins my different curiosities, is the desire to bring into closer and more rigorous communication the insights and methods of cultural studies with critical analyses and studies of illness and health, and AIDS in particular. While the discipline of medical humanities has done much to explore these connections (see especially Treichler 1999), my goal is to explore the possibilities of creating a common vocabulary and self-reflexive practice for dealing with the meanings and experiences of living with illness, imagining health and illness in more fluid ways, and exploring different resources for and ways of thinking about the helping professions. I will interrogate different modes of responding to AIDS and look to alternative ways of thinking about and problematizing social, political, cultural and biomedical responses to the pandemic. My concern will be to critically assess psychoanalytic models of mourning and trauma, medical models of health and illness, and also the ways that the fields of health education and health communication have addressed HIV and AIDS.

Drawing on a wide range of resources, from dance and music to the visual and performing arts, mass media, such as film, popular music, and television, and multimedia and internet resources, I will explore how different modes of representation have been used to testify to the difficult histories of AIDS. I will study the effects these testimonies have had in influencing social, political, cultural, and biomedical responses to the pandemic. I will look at the ways representational practices in the arts and popular culture have been deployed to make sense of the injuries and identities of AIDS, as well as the ways the interpretive frameworks they inspire help us to engage with and think critically about the difficult histories and experiences to which they testify. Comparatively little research has been done on the fine arts and popular culture and how they are deployed in the service of witnessing to the traumatic perceptions of AIDS. I will look to these other cultural genres in order to address the role they play in both negotiating troubling histories and in the pedagogical projects of learning from the difficult knowledges of AIDS.

My goal is to cultivate a larger conversation in which questions of AIDS education might productively be brought to bear on larger questions of health education and health communication. I want to enjoin others to imagine what the tools of a sustainable AIDS education might look like, as well as to consider the kinds of resources that might enable us to think about the normal and the pathological, health and illness, in more fluid ways and more ethically.

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