Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism

Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism. Lisa Diedrich, Minneapolis: University of Minnesota Press, 2016, 290 pp.

In this nearly post-neoliberal moment, at a time when people grappling with complex, life-altering health problems in the United States are all too readily dismissed as special interests or consumer groups, Indirect Action invites readers to reconsider the importance of a broadly conceived health activism. Following the work of Annemarie Mol, gender and women’s studies theorist Lisa Diedrich examines the issue of how the privatized, thoroughly capitalist “logic of choice has come to dominate over and against a logic of care” in contemporary forms of treatment-focused activism, as well as throughout the U.S. health system (p. 65). As Diedrich notes, the logic of choice approach might be summed up as “more drugs to choose from = better health care” (p. 202). Equally compelling for Diedrich are the questions of where and how to locate evidence for a logic of care, and much of Indirect Action is focused on discussion of holistic, patient-centered therapeutic approaches and grassroots or community-based responses to the experiences of the afflicted.

Contemporary American views about the forms and objectives of health activism, Diedrich argues, have been decisively shaped by efforts during the late 20th century to address the HIV pandemic and, in particular, by the cultural prominence of the AIDS Coalition to Unleash Power (ACT UP). Through the campaign its slogan, “Drugs into Bodies,” ACT UP “transformed the experience and event of AIDS and other illnesses in very concrete, material ways” (p. 16), such that its model of “direct action politics” and emphasis on new biotechnologies were hailed as the vanguard (pp. 1, 10). Yet for Diedrich, as with the writer/activist Sarah Schulman on whom she relies in making her argument, ACT UP was neither revolutionary nor the only successful approach to the HIV/AIDS crisis.

A central aim of Indirect Action is to examine the “prehistory of AIDS” in the United States, with attention to the range of health-related concerns and forms of mobilization from 1960 to the mid-1980s (pp. 9–11). Michel Foucault and feminist historian Joan Wallach Scott serve as methodological guides for the effort to tell “a more complex story,” rather than definitive history, about AIDS and its preconditions (p. 20). Diedrich approaches illness from the vantage point of “a multiplicity of bodies and minds, concepts and histories, and clinical, critical discourses and practices,” wherein experience, action, and clinical framework are weighted equally as modes of knowing (p. 3).

A further methodological and conceptual point of departure, directed against practices of erasure and forgetting, is the book’s attention to the contributions of feminist analysts, including Schulman and Cindy Patton, in narrating AIDS’ very early history. Key parts of this politics of representation are the networks of caring, strategy, and support created by diverse communities against the threat of a terrifying new illness. In crafting her multi-dimensional account, Diedrich thus challenges biomedicine’s “heroic narrative of progress” against the specter of HIV/AIDS, as well as the inevitability of the logic of choice exemplified by ACT-UP’s focus on treatment activism (p. 11).

Through the synthetic approach that she characterizes as “doing queer love,” Diedrich works to expand historical recognition of the critical/political and therapeutic approaches to health from the 1960s and 1970s. As Diedrich explains it, queer love may combine “art, feminist and poststructuralist theories, and oral history” with other modes of textual and graphic analysis to examine discursive, institutional, and political practice over time (p. 28). Likewise, queering analysis allows for the shifting of scales and geographic reference points as well as time periods. This comparative framework enables Diedrich to map a variety of artistic representations, informal as well as institutional spaces of caring, illness experiences, forms of witness, and perspectives on health and healing.

The range of material covered in Indirect Action is vast. In addition to her brief accounting of the women’s health movement of the 1960s, Diedrich locates potential expressions of a logic of care through the holistic clinical approaches of Frantz Fanon, Félix Guttari, and John Sassall. The work of Fanon and Guttari, in particular, is used to illustrate decolonizing therapeutic practices aimed toward the realm of the social as well as the conjunction of mind and body. Conversely, through attention to Wiseman’s 1967 film, Titicut Follies, and a 2014 report by the state of Massachusetts, Diedrich references the dehumanizing effects of “total institutions” such as Bridgewater State Hospital, as well as the late 20th-century impetus toward the deinstitutionalization of persons with mental health concerns (p. 168).

Indirect Action likewise incorporates the narratives of family members—presented through film, drawings, and text—as sources of insight about patients’ and families’ experience with illnesses such as epilepsy and schizophrenia during the mid-to-late 20th century. Stories of biomedical encounters exemplify “a counterlogic of care” that vividly contrasts with the effort of kinspeople to account for the afflicted as “whole person[s],” as well as for their own engagement in the emotionally fraught work of witnessing and caregiving (p. 149). Thus, Diedrich describes the documentary film, Out of the Shadows (2004), as a daughter’s “call to struggle against our impoverished response—conceptually, politically, practically, and aesthetically—to mental illness” (p. 175). As the book’s subtitle indicates, such narratives are accorded significance in understanding the reach of health activism prior to emergence of the HIV/AIDS pandemic as well as for the present conjuncture.

From the work of biologists Rachel Carson and Lewis Thomas, Diedrich draws the “minoritarian” construct of thinking ecologically, as crosscurrent and counter-narrative to increasing specialization within science and medicine in the decades just before HIV (p. 113). Diedrich takes up Carson’s account of “death by indirection” as a model for thinking about elements and complex interactions whose effects may not be readily discerned (p. 121). Carson’s scientific analysis of what are now termed “endocrine disruptors” thus becomes, in Diedrich’s usage, a means to comprehend specific instances of “illness-thought-activism” and an alternative to ACT UP’s confrontational politics (pp. 16, 120).

Students of ethnography may find Diedrich’s contribution to critical health studies curiously disembodied and absent of the thick descriptions that provide context for accounts of, and by, the afflicted. Medical anthropologists will note that Diedrich cites few accounts from anthropology or critical public health, and that the voices of those directly affected by illness or engaged in activism, while not altogether missing, are confined to specific locations within her text. Diedrich’s focus, after all, is on practices of representation and ways of reading historical conjunctures, and Indirect Action will appeal most strongly to readers interested in poststructural analysis and the work of Michel Foucault. But in the present challenging times, when broad-based and explicitly feminist models of activism seem too little in evidence, Indirect Action should be welcome reading.