Saturday Apr 29

REVIEW OF INDIRECT ACTION: Schizophrenia, Epilepsy, AIDS, and the Course of Health Activism By Lisa Diedrich: A Deep Look at the Backstory of Social Change in Health Activism

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Lisa Diedrich examines the prehistory of AIDS activism by exploring underlying conditions that shaped ACT UP’s high profile direct action tactics during the late 1980s. The author “… began this project as a response to what seemed to me to be a forgetting of the early days – the pre-ACT UP days – of AIDS activism in the United States” (p. 6). Diedrich’s analysis focuses on the relationship between illness, thought and activism during the 1960s and 1970s, before the emergence of AIDS in the United States. She contends that there is not an inevitable straight line cause and effect connection between these pre-existing elements and the activism that followed. Rather, the author highlights the ambiguous, indeterminate
nature of indirect action as she lifts up previously unacknowledged or underappreciated factors and forces which contributed to subsequent health activism, but which might themselves have taken a different course.

Diedrich structures this book by interspersing what she terms “snapshots” between six narrative chapters, followed by an “afterimage” at the conclusion. The “shorter visual/descriptive snapshots” are utilized “…to convey various ways of seeing the conjuncture of illness-thought-activism in the period from around 1960 to 1990” (p. 12). This device draws on images from sketches, photos, x-rays, films, catalogs, and literature, while it enables the author “…to both link and separate the chapters” (p.12) in a very creative manner. In the first chapter, “Doing Queer Love, circa 1985,” Diedrich probes the manner in which health feminism in the 1970s impacted the AIDS activism of the 1980s. She challenges the dominant historical narrative that ignores or understates this connection, especially that between ACT UP and the women’s health movement. Diedrich argues, “Feminists and gay men were able to create an ‘effective community’ precisely through political struggle that, while concerned with AIDS in the present, also remembered and made connections to struggles for self-determination in the past, through the participation of lesbians as transversal figures linking one movement to another across times and places” (p. 36).

The second and third chapters concentrate on the evolution of clinical medicine during the decades immediately prior to the emergence of AIDS. In Chapter 2, “Que(e)rying the Clinic, circa 1970,” Diedrich explores, “… clinical discourses, practices, and institutions that emerged in relation to the anti-psychiatry movement in France and the women’s health movement in the Unites States. In particular, I look at two practices – self-help and transversality – that demonstrate new
therapeutic models that came from outside medicine but influenced the practice of medicine before AIDS” (p. 13). The third chapter moves further back to examine different aspects of diagnosis and treatment in clinical medicine during the 1960s, including generalist practice and specialization. Diedrich covers this ground by comparing and contrasting Foucault’s historical work, The Birth of the Clinic (1963), with Berger and Mohr’s A Fortunate Man (1967), which studies the practice of a country doctor in the United Kingdom during this time period.

Chapter 4, “Thinking Ecologically, circa 1962 and 1971” deals with pre-AIDS movements in both science and medicine as illustrated by two texts that “… offer a generalist alternative to the hegemony of specialization” (p. 113). Rachel Carson’s classic book, Silent Spring (1962) is juxtaposed with Lewis Thomas’ “Notes of a Biology Watcher” column which was published in the New England Journal of Medicine between 1971 and 1980. The author emphasizes Carson’s “… status as an outsider to science; as a woman and as a biologist” (p. 115), who took on the pesticide industry while laying the groundwork for the environmental justice movement. Carson effectively did so by combining scientific rigor with the ability to communicate to the general public in an accessible, engaging, and compelling manner. Diedrich contends, “… this new
form of literary-scientific writing and communication … in the prehistory of AIDS, would become prominent in the response to HIV/AIDS by both doctors and patients, especially in the early years of the epidemic” (p. 118). She goes on to highlight
a number of themes in Thomas’ writing including, inter-connectedness, generalist practice, interdisciplinary collaboration, indirection, uncertainty, “challenging medicine’s interventionist ideology” (p. 129), and “… the lost art of touching in medicine” (p. 130). Such elements were precursors to the women’s health movement, which in turn profoundly influenced the response to AIDS that would follow decades later.

Next, Diedrich considers how mental health disturbances were experienced and treated during the 1960s and 1970s, as Chapters 5 and 6 address epilepsy and schizophrenia respectively. Those discussions are set up by the fourth snapshot which features excerpts from Frantz Fanon’s essay, “Colonial War and Mental Disorders” (1961) and the documentary film, Frantz Fanon: Black Skin, White Mask (1996) – material that enables the author to connect “…the political and therapeutic” (p. 14) and to “… draw out some of the continuities and discontinuities between colonial war and mental disorders before AIDS and queer politics and theory after AIDS” (p. 15). In Chapter 5, “Drawing Epilepsy,” Diedrich presents an in depth review of Epileptic (2005), a graphic narrative in which author/artist David B. depicts his brother’s epilepsy as experienced in France during the 1960s. Her analysis zeroes in on “… the clinical, critical, and graphic in order to demonstrate a method for approaching the complexity of the multiple experiences and events of illness” (p. 143). She makes another linkage to the birth of the politicized anti-psychiatry movement in France during 1968; and her observation that David B. recognizes “… the failure of language to adequately capture the experience of epilepsy” (p. 155), underscores her themes of complexity, ambiguity, and the historical limitations of dominant medical practice.

The snapshot that follows features two separate efforts designed to uncover and bring forth horrendous conditions at the same mental health facility in Massachusetts. Frederick Wiseman’s widely acclaimed documentary film Titicut Follies (1967) and the Disability Law Center’s report, “Investigation of Bridgewater State Hospital” (2014), both reveal this institution’s demonstrable failure to properly serve and safeguard the interests of their psychiatric inmates over a span of more than forty years (I might add, a phenomenon that is widespread, if not worse, in similar mental health “hospitals” across the United States).

The final chapter, “Witnessing Schizophrenia” continues the critical examination of the treatment of mental illness by presenting and comparing how two sisters portray the plight of their mentally ill mother, Mildred Smiley. One has created a film, Out of the Shadow (2004), while the other relates her experiences through a narrative memoir entitled Saving Millie: A Daughter’s Story of Surviving Her Mother’s Schizophrenia (2006). Both chronicle a failed history of psychiatric treatment, while each bears witness to different aspects and at times, contrasting views, of their mother’s struggles, as well as their own obstacles. Throughout this discussion, Diedrich emphasizes what is seen and not seen, what is brought forth and what is ignored - or forgotten - at different points in history. Indeed, she notes the shifting terminology historically from “unreason” and “madness” to “mental illness” while stressing that the use of this designation “… almost universally demonstrates the medicalization or scientization of madness and the hegemonic view, in contemporary Western culture at least, that the primary etiology of most mental disorders is biological” (p. 178). And, as the author points out, mental health activists began challenging that hegemonic psychiatric power as the 1960s came to a close.

Finally, Diedrich’s “Afterimage” returns to “…the question of how we do politics, thought, and illness as well as how that doing of politics, thought, and illness is remembered in the near present” (pp. 200-201). Her further exploration of this topic is accomplished by analyzing two films, How to Survive a Plague (2012) and Dallas Buyers Club (2013) in light of ACT UP’s “Drugs into Bodies” campaign – “…a slogan and cause that transformed the experience and event of AIDS in very concrete, material ways and is usually taken as an image of political success” (p. 200). She argues that this interpretation of goal attainment for AIDS activists as “… a single-minded focus on drugs” (p. 207) reinforces an over-reliance on pharmaceutical products/commodities as the solution to virtually all forms of illness. Diedrich maintains that this dominant narrative ignores and misremembers certain phenomena, political movements, people, and events while privileging others, especially as it tells the story of AIDS activism almost entirely from the perspective of white, middle class, gay men.

Readers of this book are likely to resonate with an approach that probes issues relating to whose story a particular history does or does not recount. For instance, one can see a similar line of inquiry with scholars who challenge historical accounts of the civil rights movement that feature the preeminence of charismatic Black male leaders and Freedom Riders from the North, while under-appreciating the essential role of the on-the-ground organizing conducted by African American women. Furthermore, Diedrich carries out her critique by drawing from an intriguing array of arenas, especially art, science, and politics, while displaying rigorous scholarly methodology. Indeed, her “Notes” attendant to each chapter and intervening snapshot effectively document the accuracy of her historical sources while frequently providing salient contextual information and valuable insights. The author’s analytical breadth and depth is impressive; she exhibits an extraordinary command of relevant theoretical material; and her attention to detail is striking. This book certainly expanded my own understanding of and appreciation for a host of factors during the 60s and 70s that did or didn’t impact AIDS activism in the 80s, depending on how that activism has been conceived and conveyed.

On the other hand, readers concerned with applying “what should be done” principles and guidelines to create or amplify
conditions making progressive social change movements more possible will find little direction from this text. Consistent with this book’s title, this is not the author’s intent. Rather, she is concerned with “… demonstrating other therapeutic and political practices, those varieties of politico-therapeutic experience less easily encapsulated and operating less directly in and on the present moment” (p. 21). I submit that Lisa Diedrich succeeds in this regard, but potential readers should be forewarned to temper expectations for direct application for direct action.

Lee Staples is Professor Emeritus at Boston University School of Social Work and a long-time community organizer.

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