The past year has brought a dramatic resurgence of disability activism into the public eye, with groups like Not Dead Yet staging powerful, media-savvy acts of protest and occupation at legislative buildings across the country in response to the latest assault on the public healthcare system under the guise of repealing Obamacare. Images of disabled activists camped out in their representatives' offices and in some cases being violently removed by police attest to a longer history of health activism, from the "capital crawl" up the US Capitol in the lead-up to the passage of the 1991 Americans with Disabilities Act to the die-ins and other mass protest actions performed by members of ACT-UP and other AIDS activist groups in the late 1980s and 1990s.
The attention focused on such highly visible and dramatic acts of protest risks obscuring the ways in which acts of embodied public protest are only part of a broader and more complex history of contestation over the politics of health and illness. Lisa Diedrich's Indirect Action: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism offers a timely and theoretically deft intervention into our understanding of health activism in the second half of the twentieth century, particularly as that understanding has been shaped by the legacy of the social movements and activist strategies that emerged during the first wave of the AIDS epidemic. Diedrich asks after what gets overlooked or obscured within the tendency to represent health activism since AIDS as a history of gradual incorporation into established structures of clinical expertise (as activist outsiders became empowered experts). This progressive narrative of queer incorporation into the precincts of medical knowledge was accompanied by a concurrent turn toward a politics of liberal inclusion and social redemption as the locus of queer politics shifted from fighting AIDS stigma to advocating for gay marriage.
Diedrich's book invites us to revisit and look closer at this increasingly commonplace way of narrating health politics of the late twentieth century. While Diedrich conceives of Indirect Action as a "prehistory of AIDS," the book is not really about AIDS activism itself so much as it is about the politics of health and illness since midcentury that produced the historical conditions that gave shape to early AIDS activism— and the subsequent way that this story has been told. Thus Indirect Action "first decenters the gay male activist as the autonomous subject of AIDS activism before tracing back to other figures and forms of health activism" (11). Indirect Action opens by opens by turning to AIDS activism veterans like Sarah Schulman who have warned against the recent queer tendency of romanticizing groups like ACT-UP, which (as Schulman has recently stated) were ultimately reformist rather than revolutionary in their strategic vision. Indeed, in the book's first paragraph, Diedrich considers Schulman's insistence that ACT UP was a single-issue reform group made her realize that "what was radical in response to AIDS was locatable not in the direct action politics of organized protests at specific targets […] but in the indirect action of multiple forces operating prior to the emergence of AIDS that made something like ACT UP possible" (1). Putting so much emphasis on highly visible direct-action protests has drawn attention away from the wider and more diffuse set of ideas, movements, and political agents that set the historical conditions of possibility for early AIDS activism to emerge. It has also, as Diedrich notes, obscured the contributions of women generally and lesbians in particular to queer activism post-AIDS.
These forms of erasure in turn indicate a wider problem with illness politics as the object of historical analysis. As suggested by her title, Diedrich is interested in what has been left out of the prevailing historical memory of the relationship of illness to politics over the course of the latter part of the twentieth century. Diedrich pursues this line of historical recovery by querying how to understand the concept of action—of political praxis—when it comes to questions of illness and health. Hannah Arendt influentially defined political action as the highest mode of human existence since it involves the direct expression of individual freedom and autonomy, and she defined such action as that which requires us to choose and when we act in ways that go beyond the need to maintain our physical, biological existence. Yet a rich corpus of theoretical, activist, and aesthetic work has recognized that, since the emergence of biopolitics as a historical regime of power, the capricious vulnerabilities of our physical, biological existence—our bodies—have become the most important site of social and political struggle.
Diedrich does not refer to Arendt's work directly (nor, curiously, does she anywhere give an explicit working definition of "action" as such), yet the book's commitment to distinguishing between direct and indirect forms of action have far-reaching implications for the study disability as a category of social and political analysis. As she writes:
What I am proposing, then, is that we consider indirect action, as well as direct action, in our attempts to understand the practices of illness, thought, and activism before and after AIDS. (121)
To do so, Diedrich considers why experiences of illness, disability, and bodily vulnerability have been such crucial occasions for theoretical reflection, cultural production, and political praxis since the 1960s. Liberal humanism—and the forms of political rationality to which it is linked—have commonly construed illness and disability as states that attenuate our capacity to act politically and diminish our standing within the human community. Yet Diedrich insists that experiences of illness and disability have in fact provided robust impetuses for action, drawing on a rich of archive of historical examples to show how, over the last half-century, what she terms the "conjunction of illness-thought-activism" has yielded powerful responses to the dehumanizing and pathologizing force of medical expertise as it has developed at the nexus of biopolitical governance and postindustrial capitalism.
Though insightful observations are scattered throughout the book, I would like to focus on three components of Indirect Action's argument that will be especially useful and generative for the field of disability studies. The first component emerges from Diedrich's careful excavation of how it became possible to conceive of "illness as politicized experience" (4), a historical innovation that occasioned crucial transformations in the apparatuses of power and knowledge surrounding the governance and management of health. The second point concerns Diedrich's interest in the crucial role of sense perception—and particularly of vision and the act of seeing—in the production of illness and health as social and political categories and objects of knowledge in the late twentieth century. The final point, which follows closely from the first two, is Diedrich's interest in proposing a theory of indirect action in order to reveal the extent to which illness politics and health activism in the decades leading up to and following the early AIDS epidemic have been defined by struggles around representation, and have been concerned with adjudicating how illness is represented and who sets the terms of its representation.
Each of these points are illuminated through Diedrich's readings of an uncommonly rich cultural "counterarchive" (her term) of illness as it appears within various forms of politically engaged cultural production (including photography, installation art, and documentary and experimental film) from the 1950s through the present. The diverse practices she considers are therapeutic, activist, theoretical, or artistic (or some combination thereof), though each involves a contestation regarding knowledge about—and power over—about the body, especially in ways that "challenged the exercise of medical sovereignty" (as Diedrich writes of the women's health and self-care movements that developed during the late 1960s and 1970s) (62). Indeed, a major takeaway from Diedrich's argument is that the forcible assertion by ill and disabled subjects on the narrative and experiential dimensions of has a been a significant—if "indirect"—way in which health has been adjudicated within the domain of the political.
That illness is not just an objectively definable or organic disease pathology but also an experience whose phenomenological and narrative dimensions are historically contingent is a familiar argument within disability studies and the medical humanities. Yet Diedrich pushes her argument beyond this initial premise in order to take a closer look, in essence, at how the patient came to be understood as the "subject of the illness experience" (84) in the first place. Diedrich elaborates upon the history of the concept of illness as experience by in two major ways. The first is through an analysis of what Diedrich calls the "temporopolitics" of illness, an incisive if somewhat unwieldy term for the way that efforts to make visible the political stakes of illness are shaped by the multiple, non-contiguous, and disruptive temporalities and temporal registers that illness produces: "We are never operating in one temporality at once," she writes, "illness, thought, and politics teach us this" (208). In this way Diedrich contributes to a growing theoretical elaboration of the way crip and queer temporalities disrupt what Elizabeth Freeman has termed the chrononormativity of the temporal coordinates imposed by capitalist regimes of production and reproduction. This aspect of Diedrich's argument is also embedded in the form that her book takes, which intercuts longer chapters with a series of short "snapshots" containing zoomed-in, close readings of a series of cultural texts that span the decades of postwar therapeutic and illness culture: Felix Guattari's catalogue essay on an art exhibition of David Wojnarowicz's photographs, a page from Samuel Delany's journals recording the 18-year-old writer's impressions of Allan Kaprow's Happenings, a sequence from Frederick Wiseman's documentary Titicut Follies, and Isaac Julien's experimental film about Frantz Fanon's merging of therapeutic and revolutionary thought in his clinical practice. Spliced together like a film montage, the form of the book thus reflects its broader argument about the disruptive temporalities of illness as a politicized experience.
Diedrich's development of a theory of illness's temporopolitics is complemented by a second key component of her argument about illness as experience, which is articulated by way of her engagement with ecology and ecological frameworks. Indeed, Diedrich draws her use of "indirection" from Rachel Carson. In Silent Spring, the touchstone text of the post-war ecological movement, Carson distinguishes between the "direct" cause of diseases and "indirect" or environmental toxins and pollutants. This turn toward the ecological signals a recently resurgent interest in what at midcentury was termed a "sociogenic" understanding of mental disorders as being linked to and indeed produced by a wider social context. This approach largely fell out of favor with the rise of biopharmaceutical paradigms within psychiatry, yet Diedrich revisits to this important strain of postwar thinking not only by considering the work of midcentury ecological thinkers such as Carson and the physician and naturalist Lewis Thomas, but also to the way the antipsychiatry and feminist self-help movements of the late 60s and early 70s—as well as parallel experimentations in therapeutic practice, such as Felix Guattari's concept of transversality in his work at the radical La Borde clinic in France—that sought to "treat the clinic itself and its practices of diagnosis and treatment not as a refuge or neutral space" but indeed "as a key site of struggle" (135). Indeed, the way that Diedrich connects clinical and ecological thought via the politics of illness is one of the most surprising and innovative contributions of Indirect Action to current understandings of postwar illness politics.
This brings us to the second major conceptual interventions that Indirect Action offers, which concerns her engagement with perception, and especially, vision. Diedrich writes of "the clinic is a space where the internal spaces of the body can be made visible through the doctor's supposedly objective practices of examination and his interrogation of the patient" (89). Here and throughout the book, Diedrich draws heavily on Foucault's influential archeology of the "medical gaze" as a historical technology that locates the clinic and its claim to scientific objectivity at the origins of political modernity since the eighteenth century. Yet Diedrich deroutinizes the use of this term by returning to the historical context in which Foucault developed his arguments on the history of madness and the medical clinic in the 1950s and 1960s. She offers close readings of The Birth of the Clinic alongside a contemporaneous work, John Berger and Jean Mohr's 1967 study A Fortunate Man: The Story of a Country Doctor, situating both texts at a crucial historical inflection point within the development of medical science, suggesting that both Foucault's historical study of medical science in the "Age of Reason" and Berger and Mohr's anthropological study of a generalist physician tending to rural working class foresters in 1960s England point toward a crucial historical shift in the way medical science exerted power over its patients. Such texts, Diedrich writes, reveal "something about witnessing not just in relation to the subjectivity of the person who witnesses but in terms of what a particular way of seeing brings into being historically" (99). As such, they point toward "an alternative therapeutic genealogy that problematizes and, indeed, struggles against a totalizing discourse of the progressive scienization of medicine" (105). Indeed, Diedrich suggests that by calling attention to—and making visible—the act of seeing and perceiving as a historical object or event is central to the possibility of transforming the practice of medicine itself—a task, she writes, that "is still relevant today" (105).
The final component of Diedrich's book that I will focus on as particularly generative for disability studies relates to the way Indirect Action puts toward an account of the status of representation within late-twentieth-century illness politics. This point directly following from Diedrich's interest in the power of seeing to produce and mediate illness as a politicized experience, and is most immediately evident in the book's later chapters, which focus on literary and visual representations of schizophrenia and epilepsy and explore how specific pathological diagnoses appear and do not appear in a range of cultural texts. In her insightful discussion of Out of the Shadow, Susan Smiley's 2004 documentary about her mother's diagnosis and treatment for schizophrenia, as well as Saving Millie, Smiley's sister Tina Katulski's memoir narrating the same events with a quite different inflection, Diedrich argues that both daughters' works "both see don't see Mildred Smiley's experience of mental illness" (174), a point which returns Diedrich to her concern with the way representations of illness grapple with the ethics of the witness: "the practice of witnessing creates its own shadows (177), she writes, and these shadows come to determine how illness becomes sayable and speakable under a given set of historical and political circumstances. In the concluding section of the book, Diedrich writes that Indirect Action attempts to "a method of documenting illness and politics that does not take representations of the experience of either illness or politics as always already self-evident but rather seeks to show how illness events—diagnoses, treatments, health activisms—constitute new subjects, objects, forms of expression, and worlds" (205). In so doing, Diedrich offers crucial new methodological resources and a rich and compelling counterarchive of theory, activism, and cultural practice that has the potential to unsettle and reorient our approach to understanding health and illness as both historical and urgently ongoing sites of political struggle.
