Cancer makes it hard to believe, simply, in clinical progress. Scientific advancements—from biomedical to genomic research—have yielded some successes in specific cases, but cancer incidence rates continue to climb. In many ways, cancer is emblematic of modernity itself, a Frankenstein phenomenon that reminds us that our supposed achievements—technological development, industry, and even medicine itself—come with great costs when deployed carelessly. To study cancer is to confront just what we have and haven’t done to our world. It is a mirror of our political will.
S. Lochlann Jain’s Malignant takes the deconstruction of cancer’s social, personal, and political significance to new heights. Considering the sheer number of books about cancer, there is, of course, some familiar terrain here—from questions about appearance (wigs, prostheses, etc.) to the way culture—in Jain’s case, especially American culture— ascribes responsibility and dispenses accolades that distinguish heroic survivors from the unspoken (literally) masses who lost their “battles.” In tackling these issues, Jain carves herself a space on bookshelves next to the works of some of our greatest writers about cancer, such as Susan Sontag and Audre Lorde.
This is no normal cancer book. Malignant’s brilliance lays in its ability to show how cancer works its way into the deepest crevices of social power. For example, Jain moves deftly from the incomprehensibility of cancer data—from pathology reports to prognoses—to the way cancer patients learn to calibrate their lives to that data. In Chapter 2 she considers how one ‘games a lifespan’. ‘Survival odds and grammar’, Jain reports, ‘offer various ways in which prognoses come to be made meaningful through the counting, recounting, and uncounting’. (p.45) Jain is willing to say what social services and insurance companies will not: ‘If you get paid a certain amount when you’re old, it’s because some died young. It’s nothing personal; this is actuarial time’. (p.57) Cancer recasts the very idea of ‘benefits’, in fact, as the cancer patient knows all-too-well that presume a certain lifespan that is cast, at least implicitly, as a ‘financial and moral calling’ (p.57). Always in the background of these discussions is the monstrosity of insecurity that has been—at least before the passage of “Obamacare”—the American health care system. Jain makes the personal political and vice versa. No degree of “pink-washing” can undo the nuances—including pains and joys—of these lived experiences.
Chapter 3, ‘Cancer Butch’, explores Jain’s queer identity as it intersects with cancer. For Jain, negotiating cancer requires negotiating her gendered and sexualized existence. She recounts, for example, feeling ambivalence about the removal of her breasts—not something that her ‘butch’ identity quite valorized— and a painful loss at cancer’s hands. She recalls, as well, after her second surgery, removing her shirt during a yoga class of strangers, an act that she ‘couldn’t stop…squeezing for meaning’ (p. 76). Among those possible meanings Jain considers ‘an attempt to mess with the cultural distinctions of public and private’ (p. 77). As just one example, on the one hand, the focus on early-detection point fingers at individuals for finding tumors and noticing changes in their bodies. On the other, there are extraordinary social forces at work—most driven by profits—that should lead those interested in cancer to look more closely at profit-seeking industries and the persistent failure of the American government to regulate the myriad carcinogens that flow through our daily lives. Self-screening has its limits in such a world.
Chapters 4-6 offer some of the book’s more novel readings of cancer, particularly regarding a corporate culture concerned primarily with defending bottom lines and a medical culture with an almost constitutional unwillingness to recognize its fallibility. Flipping the narrative on “tort reform” on its head, Jain situates medical mistakes and missed detections in a rich social field. Nobody, she tells us, collects adequate data on physician skill and performance, making it difficult to assess doctor’s training and track records. She identifies an American penchant for pointing to genetics to explain cancer’s prevalence, despite the fact that ‘genetics account for very few cancers’ (p.93). Pointing to genetics makes it easier to excuse ourselves. Whether or not this is a peculiar feature of American culture or not Jain does not address. In general, it would be nice to know if Jain regards Malignant’s message as primarily one for Americans, or whether she is making larger, more globally-applicable claims.
A persistent theme arises out of Jain’s focus on the carelessness with which the American medical establishment operates. Randomized clinical trials—the so-called “gold standard” of biomedical research—certainly possess an ‘elegant simplicity’ (p.116). But they also create a dynamic in which ‘two groups compete, one wins’ (p.117). The dark truth of these trials is that they almost always ‘exceed the lifespan of nearly everyone involved….’ (p.120). Here, as elsewhere, Jain does not always have an answer as to what should be done, but her analysis will sensitize readers to the often-perverse philosophical underpinnings of some of our research practices. Those who consider the darker side of these institutional norms are likely to ask more and better questions about why we do what we do and what is to be done.
Finally, Jain examines possible links between in vitro fertilization (IVF) and cancer, with particular focus on ‘ignorance about the health consequences of donorship’ (p.129). Here a common theme returns as Jain underscores the lack of data being collected by medical and other corporate entities invested in IVF, despite the fact that the relevant registries exist and could be easily aggregated and studied. When compounded with a culture that valorizes motherhood, often to the detriment of mothers themselves, Jain suggests that a multitude of women have placed themselves in the position of being ‘guinea pigs’ (p.132) despite ‘a generally demonstrated associate between hormone drugs and cancer’ (p.129). To be clear, however, Jain’s critique is not one of conspiracy or even causal claims. Jain’s nuanced argument does not occupy the infuriating terrain of specious argumentation about connections between autism and vaccines, which have been studied extensively and disproved. Instead, Jain shows that a world riven with cancer—our world—often can’t be bothered to investigate linkages even when data are easily accessible. The way in which ‘cancer becomes us’, in other words, is more often a function of political will than a deficit in knowledge. We just don’t know what we do. Where research is undertaken, Jain finds resistance to methodological pluralism and multiple perspectives, as when individual cases are ignored because they don’t seem to inform an understanding of population-level trends. Throughout, Jain rightly calls into question the U.S. government’s unwillingness to take on the primary forces of carcinogenic exposure—an unwillingness that dates back at least to Rachel Carson’s sounding of the carcinogenic bell in the 1960s, until she herself died from complications from breast cancer. The U.S. commitment to addressing the cancer epidemic, Jain seems to suggest, is rarely little more than a token response to forces it continues to accommodate and sometimes even actively facilitate. Pink ribbons and fundraising walks appear quaint in the face of the concerted and well-funded efforts of corporate lobbies ensure that the effects of habitually used chemicals remain poorly understood by society.
At times, Jain’s attention to detail has the phenomenological nuance of James Joyce. Her ability to notice the contortions of language wrought by an American culture grappling to cope—without rocking its capitalist boat too much—does more than inform readers—it reorients them. For example, Jain catalogs a litany of discursive indignities foisted upon cancer patients: ‘Everyone who has “battled,” “has been touched by,” “survived,” “become a shadow of a former self,” or otherwise inhabited cancer clichés has been asked to live as a caricature’ (p.46). And then there is class privilege, which “buffered” Jain ’from thinking about survival until [she] was the suddenly the one who might be survived’ (p.47). This privilege is all but obscured in the most high profile cancer patients who “fight” “courageously”—such as Lance Armstrong—while the everyday experience of the average cancer patient is afforded none of the benefits of wealth, such as top-flight care. As Jain puts it, Armstrong’s ‘status overshadows a simple fact: cancer can completely destroy your finances and your family’s future’ (p.55).
For Jain’s readers, cancer will never be the same again. For readers with a particular interest in the medical humanities, Jain’s book will introduce new literary techniques for probing deeper into cancer’s cultural resonances. Accordingly, Malignant should also serve as a model of how to advance scholarly as well as experientially-grounded narrative, the latter of which cannot adequately capture cancer’s realities without the kind of literary playfulness Jain’s text exhibits. Jain’s text tacks back and forth between the personal and the public, the sober and the enraged, the objective and subjective. While Jain’s experience leads the way, however, it is cancer itself that determines her method. As Jain notes, ‘regardless of who is listed as kin in the last line of an obituary (“…is survived by”), those relationships are local’ (p.65). What Jain delivers in the end, then, is what she promises in the beginning, namely to show the multiple ways in which ‘cancer in all its complexity is not solely a biological phenomenon, but a politics with which to engage and struggle’ (p.14).
Reviewed by Daniel Skinner, Assistant Professor of Health Policy, Department of Social Medicine, Ohio University, Heritage College of Osteopathic Medicine, Dublin, Ohio, United States.
Correspondence to Daniel Skinner
Follow Daniel Skinner on Twitter @danielrskinner