Website—Published Work: The AIDS Crisis and the Modern Self

Writings

Mortality Review of:

The AIDS Crisis and the Modern Self: Biographical Self-Construction in the Awareness of Finitude.

By Sebastian Rinken

Dordrecht, The Netherlands: Kluwer Academic Publishers, 2000

Reviewed by Eric Rofes, Humboldt State University

April 2003

Over the past decade, we've seen a sea change in the ways in which we think about the life chances of many people with HIV in the West. New treatments, despite their expense and side-effects, have taken us beyond the crisis moment we inhabited through the first dozen years of the pandemic. The huge cadre of health professionals, medical researchers, journalists, and street activists that has clustered around AIDS, now circulates around two distinct experiences of AIDS: that of the developed world, where we've come to conceptualize HIV often as chronic and manageable, and that of the developing world, where AIDS has become a plague beyond our imagination of just two decades ago.

What do we do with the memories of our experiences of HIV/AIDS from 1981-1993? How do those of us in the West think about that particular crisis moment for our cultures, now that our everyday lives have moved to a different experience and understanding of HIV?

Many have embraced a metaphor of militarism and war as a way of representing our effort against HIV, but HIV’s trajectory--even in the West--has undermined that particular conceptualization. For while some researchers and gay health activists toss about terms such as "post-AIDS" or "the end of AIDS," to describe our current epidemic moment (Rofes, 1998), this war has not ended and the enemy has not been vanquished. Rather, HIV continues to take its toll on core populations, albeit in different ways than many of us imagined a decade earlier.

Yet the crisis moment of the epidemic in the West offers rich possibilities for researchers interested in a range matters central to social science research. Hard-hit populations and subcultures shared in a number of intense experiences, including a tidal wave of unanticipated morbidity targeting young adults, a powerful reinforcement of social stigma, and a mass mobilization that transformed profoundly our understandings of caregiving (Vitek, 1991), community (Andriote, 1996), and medical science (Epstein, 1996), What lessons might emerge out of the study of these experiences? How might that epidemic moment inform our broader understanding of human nature, social organization, and civil society? To what use do we put the experience of people who became infected during an era in which the overarching understanding of HIV infection included a relatively swift and unpleasant death?

Sebastian Rinken begins our efforts to answer these questions in his rich and complex study of people with AIDS' understandings of themselves and relationships to mortality that are the focus of his book The AIDS Crisis and the Modern Self: Biographical Self-Construction in the Awareness of Finitude. While some might suggest we leave behind the horror or the heroism of the early AIDS years--not dwell in that painful moment that robbed many of us of so much--Rinken, a sociologist at the London School of Economics, has daringly begun our collective work to extract useful learnings from this cauldron of pain and confusion. By closely examining the ways in which people with AIDS experienced disruptions in their self-concepts and life narratives during the crisis moment, the author is able to probe core questions about our contemporary concepts of the self and the narratives we construct as tools intended to sustain identity and community under incredibly difficult circumstances. This is valuable and useful knowledge, well beyond the AIDS arena.

Drawing on Foucault and Weber, Rinken goes to great length to provide a theoretical framework for his understanding of HIV as a “diagnosis of the self” and focus his study on interviews with 21 people with HIV or AIDS interviewed during the Spring of 1993 in the cities of Florence and Milan in Italy. A diverse group of men and women drawn primarily from self-help groups, the participants in Rinken’s study were primarily infected through sexual relations (both homosexual and heterosexual) and intravenous drug-use. Two-thirds of the interviewees were men and the remaining third were women, all ranging in age from 19-48 years and most had been infected with HIV for at least five years. About a third of the respondents, at the point of interview, had been diagnosed with AIDS.

Rather than focus his research on the stigma associated with HIV/AIDS or the ways in which people with AIDS cope with their everyday challenges, Rinken looks at the ways knowledge of one’s infection with HIV interacts with shifting understandings of the self in Western nations. He is most interested in the effects of this “violent” confrontation with finitude has on the construction of subjectivity and delves heavily into the ways that the morbidity associated with HIV interacts with one’s autobiographical narratives. This research grapples with core issues involved in the effects that the knowledge that one’s life may end sooner than expected has on these relatively young people’s understandings of themselves and the ways they had made sense of themselves prior to this knowledge. How does a sudden and often traumatic exposure to finitude affect the construction of one’s autobiographical narrative? Ultimately, the researcher explores the distinction between people with HIV/AIDS who responded to the confrontation with finitude as “self-actualization” (e.g., “HIV clarified my own understanding of myself in profound ways”) or “self-transformation (e.g. “My life would’ve been so different if I hadn’t become infected with HIV”) and the ramifications of this distinction for current sociological examinations of shifting self-constructions in the West.

There’s much that Rinken does exceptionally well in this volume. His discourse analysis of the interviews with people with HIV merits special praise, not only because of his faithfulness to his theoretical framework and his meticulous classification methods, but also because of what seems to be an ever present and deep respect for their struggle and for the ways in which they make sense of their conditions. Because he maintains a narrow focus on the ways in which his subjects’ experience of finitude affects their biographical narratives, the researcher is able to proceed slowly and carefully through the data, looking closely at each particular phase of his inquiry and considering a range of possible explanations and understandings. Thus the volume builds effectively to a deep and philosophical consideration of his findings, where Rinken grapples with modern and post-modern understandings of the self and the ways in which HIV/AIDS might, in fact, lead us to new understandings or challenge accepted tenets about the fragmentary nature of subjectivity post-modernity. While the book clearly is intended to be of use to social scientists who study people with HIV and the sociology of the self, it also functions as a terrific example of the appropriate use of theory to inform research methods and of ways to engage in intensive and careful analysis of interview transcripts.

At the same time, the book raised some important questions for me. Perhaps the largest concern involves the intensive focus on the self and the limited ways in which the author critiques concepts such as ”self” and “self-construction.” The study participants—mostly reached through a self-help group, often an incubator for the social production of identity—provide significant evidence of the ways in which social and cultural forces play a powerful role in biographical narratives. I would like to see the author struggle with the bifurcation between self and other in a more complicated way. I also wished the author had disclosed more about himself and his own relationship to HIV/AIDS. It seems critically important that a study that is focused so intensely on issues of subjectivity and mortality challenge traditional boundaries intended to somehow buttress the researcher as the objective source of knowledge. Since it is so evident from the text that participants and researcher together have co-constructed the knowledge of this text, the nakedness of the participants stands in stark contrast to the limited information disclosed on the researcher.

Finally, early in the text, Rinken spends a great deal of time establishing his line of research as original, not only because of the focus on the “self,” but because of the linkage to, not AIDS generally, but the experience of confronting mortality. He may be correct in asserting the novelty of his approach, but I wish he’d spent a portion of his literature review considering texts written by people with AIDS themselves (Reed, 1987; Arpin, 1993; Publicover, 1993; Hardy, 1999), as many would provide a useful jumping off point for his more academic work. Likewise, at least one academic study of women and AIDS seems to explore Rinken’s themes, albeit from a different disciplinary framework (Lather & Smithies, 1998).

I finished reading this book the same week that I viewed a new film focused on the history of the AIDS-activist group ACT UP. Titled Fight Back, Fight AIDS: 15 Years of ACT UP and produced by James Wentzy, the film includes much footage of ACT UP demonstrations during the 1987-1990 period, when the rage of people with AIDS exploded throughout much of the West and was channeled, by groups like ACT UP and others, into powerful confrontations with government officials, medical researchers, and, eventually, leaders of AIDS service groups. While these efforts have been well document by sociologists interested in new social movements (Gamson, 1991) or the sociology of science (Epstein, 1996), an entirely different way to examine this particular epidemic moment is suggested by Rinken’s research.

In what ways might a confrontation with finitude create “biographical disruptions” among a group of relatively privileged, white, educated gay men in New York City, and inspire them towards both a sense of entitlement to services and medications, and rage at the limitations of public health systems and medical research? Rinken’s work leads me to wonder whether activists of the era were inspired not only by fear of illness and death, but the shattering of life plans and expectations and the challenge of integrating the stark reality of one’s mortality into a pre-existing narrative of the self. When we try to make sense of the reasons an intense AIDS activism seemed to erupt out of nowhere in 1987, and then practically disappeared by the mid-1990s, Rinken’s focus on what many people with HIV were grappling with during this particular time period offers one very important possibility.

Notes

Andriote, J. (1999). Victory deferred: How AIDS changed gay life in America. Chicago: University of Chicago Press.

Arpin, R. (1993). Wonderfully, fearfully made. San Francisco: HarperSanFrancisc0.

Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press.

Gamson, J. (1991). Silence, death, and the invisible enemy: AIDS activism and social movement “newness.” In M. Burawoy (Ed.) Ethnography unbound: Power and resistance in the modern metropolis (pp. 25-38). Berkeley, University of California Press.

Later, P. & Smithies, C. (1997). Troubling the angels: Women living with HIV/AIDS. Boulder: Westview.

Publicover, R. J. L. (1993). My unicorn has gone away: Life, death, grief and living in the years of AIDS. Somerville, MA: Powder House Publishing.

Reed, P. (1987). Serenity: Challenging the fear of AIDS—from despair to hope. Berkeley: Celestial Arts.

Rofes, E. (1998). Dry bones breathe: Gay men creating post-AIDS identities and cultures. Binghamton, NY: Haworth Press.

Schwartzberg, S. (1996). A crisis of meaning: How gay men are making sense of AIDS. New York: Oxford University Press.

Vitek, T. (1991). Carrying the torch: The story of a volunteer caregiver in the AIDS epidemic. Self-published. Oakland, CA.