Coping and Critique

Carsten Timmermann
Centre for the History of Science, Technology and Medicine
The University of Manchester

Twitter: @ctimmermann

Malignant: How Cancer Becomes Us by the Stanford anthropologist S. Lochlann Jain opens with what she describes as her own “decidedly undramatic life-changing moment” in the “somewhat battered office” of her doctor. Flipping back and forth between the pages of a radiologist’s report, Jain recalls, the doctor “really, really didn’t want to look at me”. Desperately trying to “avoid her part in the vaunted Bad News Experience”, the doctor finally asked Jain if she knew what the report said(Jain 2013, 1).Jain did not. Then she found out that she had been diagnosed with invasive breast cancer. While Malignantincludes many personal vignettes, much of the book does not discuss Jain’s own illness, dealing instead with the place of cancer in contemporary society: “the disconnects, the cognitive dissonances, that make the disease, let alone a cure, so elusive”(Jain 2013, 26). When she states that cancer “has become us”(Jain 2013, 8), Jain does not simply refer to the likelihood that many of us will be diagnosed with it in our lifetimes. Rather, she argues, cancer has become inextricably enmeshed with American economic, political, and social life.

It is no accident that among the endorsements on the inside cover of Jain’s book (and who does not check these first, along with the acknowledgements), we find, among others, the names of Judy Norsigan, the Executive Director of Our Bodies Ourselves(Our Bodies Ourselves 2016); Gerald Markowitz, one of the authors of Deceit and Denial: The Deadly Politics of Industrial Pollution, a book exposing the recklessness of companies dealing with carcinogenic chemicals(Markowitz and Rosner 2002); Robert Aronowitz, whose most recent book, Unnatural History is a social history of breast cancer in America(Aronowitz 2007); and Robert Proctor, who has published widely on the obfuscation campaignsorchestrated by tobacco companies and other industries(e.g. Proctor 1995; Proctor 2011). There is also an endorsement by Siddhartha Mukherjee, author of The Emperor of All Maladies, a ‘biography of cancer’ and one of the bestselling popular science books in recent years(Mukherjee 2010; for a critical discussion of the disease biography approach, see Cooter 2010).Malignant combines the academic activism of books such as Proctor’s or Markowitz’s with feminist perspectives as pioneered by Our Bodies Ourselves, while incorporating recent scholarship on the history of cancer, such as Aronowitz’s.And it deserves to be read by as many people as have read Mukherjee. What distinguishes Jain’s book from those by Markowitz and Rosner, Proctor, or Aronowitz, is that her scholarly reflections on cancer were triggered by her own experiences as a patient.However, before I discuss Jain’s book in more detail, allow me to add a bit of context by reflecting on some key texts published by scholars diagnosed with and treated for cancer over the past four decades.

While progress has been very limited for some cancers(Timmermann 2013), it is important to note that today about twice as many people survivetheir cancer diagnosis for a decade or longerthan 40 years ago.Breast cancer is among those forms of the disease that have seen dramatic improvements in survival figures. A recent publication by the British charity Macmillan Cancer Supportsuggests that a cancer diagnosis “is now a moment that is frequently not life-ending, but nearly always life-changing”(Macmillan Cancer Support 2016, 4).Increasingly common are experiences of living with rather than dying from cancer. Bodies changed by the disease and the late effects of aggressive cancer treatments, as Aronowitz has argued,turn surviving into what is akin to suffering from a chronic disease(Aronowitz 2007). Emily Abel (who herself underwent treatment for breast cancer) and Saskia Subramanian have shown in their important book on the “untold stories of breast cancer survivors” what this means for individuals(Abel and Subramanian 2008). Breast cancer experiencesalone have been the focus of a whole series of memoirs published in recent years. So many, in fact, that one publisher told the Guardian columnist Dina Rabinovitch that ‘the breast cancer memoir is a crowded market’(Rosoff 2007). Many cancer memoirs have been penned by journalists, but there have also been a number ofbiographically informed bookspublished by scholars in the humanities and social sciences, located, like Jain’s, in a field of tension between personal questfor meaning and scholarly critique.

Two texts cited in most scholarly reflections on cancer experiences mark the opposite ends of this spectrum: Susan Sontag’s Illness as Metaphor (originally published in 1978 and in a new edition alongside an essay on AIDS and its metaphors in 1990) and Arthur Frank’s At the Will of the Body(Frank 1991). Sontag’s essay is the source of the often cited notion of our‘dual citizenship, in the kingdom of the well and in the kingdom of the sick’(Sontag 1991, 3).[1]Frank’sbook is a deeply personal, sociologically andphilosophically informed account of his experience with heart disease andmetastatic testicular cancer. Frank builds on Arthur Kleinman’s well-knownideas about the difference between illness and disease(Kleinman 1988).According to Kleinman,disease is what doctors deal with: an entity that exists independently from the sufferer, associated with a set of scientific theories and clinical practices, turning patients into objects that doctors act upon rather than subjects they engage with. Illness, in contrast, is what patients experience: how do they cope with the radical changes which their bodies undergo and the resulting essential challenges to their being in the world. Frankinvites his readers to view illness as an inevitable fact of life and, indeed,an opportunity: while as patients we haven’t chosen this path, Frank argues, active and open engagement with every stage of the process will help us adapt to life in a changed body. Frank’s book, above all, discusses how as individuals we can cope with the diagnosis, the therapy and the consequences: the rules imposed by the changed body. However, Sontag and many who followed her have shown that coping with cancer can include engaging withitswider cultural meanings.

Unlike Frank, Sontag, who was diagnosed with breast cancer in 1975 does not tell us much about her own life-changing cancer experience. In fact, there weren’t many who spoke openly about their cancers in the mid-1970s(Baines 2012).Sontag’s essay was both a contributing factor and an early expression of a wider de-stigmatisation process described well in some recent histories of breast cancer(Lerner 2001; Aronowitz 2007).We find out what effects cancer had onSontag’s lifefrom her son’s account of her illness, published after Sontag’s death, but we don’t hear it from Sontag herself(Rieff 2008). To draw onKleinman’s terminology: where Frank’s work engagedwith the personal microcosm of illness,Sontag’s essaydeals with the cultural politics of disease. Her subject is “not physical illness itself but the uses of illness as a figure or metaphor”(Sontag 1991, 3). Comparing nineteenth-century tuberculosis with twentieth-century cancer metaphors, she argues that these metaphors, representing prejudice and expressing the cultural fears of an age, are dangerous and a source of stigma. Medical science, she suggests, offers a solution: because we know the true cause of tuberculosis, old attitudes towards the disease appear silly to us. When medical science finds the cause of cancer and gives us effective treatments, we will be freed from metaphorical thinking about cancer, and thus the stigma attached to the disease. Sontag’s (perhaps polemical?) defence of an essential difference between medical science and other realms of modern culture when it comes to the use of metaphorsis somewhat surprising to us astwenty-first-century readers, used to the relativismevident in many recent studies of science, technology and medicine.

We find a different take on metaphors, informed by more than a decade of (feminist) science studies in Jacky Stacey’s bookTeratologies (1997). As Stacey tells us, she was about to complete her PhD dissertation in the early 1990s, when she was diagnosed with a teratoma, a rare tumour which had its origin in one of her egg cells. She credits Frank, who she met at a conference in 1996, with having had “an important, if rather belated, impact on my thinking”(Stacey 1997, ix). However, this is a very different approach to cancer than both Frank’s and Sontag’s. In the tradition of the best feminist scholarship, Stacey looks for the political in the personal: a lesbian woman from a middle class background, an academic in North-West England, who reads voraciously and writes to make sense both of her transformation into a cancer patient and of her encounters with mainstream biomedicine and alternative practices.Staceyexperiments with language and images (teras means monster), unpacking the dominant narratives that shape understandings of cancer, from Freud’s couch to monstrous growth, from feminised victims to masculinised heroes.

In evocative passagesStaceyexplores correspondences and juxtapositions between whatshe finds in medical literature about the cellular changes in the bodies of patients and what goes on in the world around her. Stacey engages extensively with Sontag, arguing that metaphors are central to medicine and science. In her analysis she dedicates equal space to biomedicine and alternative approaches and what she calls 1990s self-health: the postmodern focus on individual responsibility. Drawing on literature both on cancer and HIV-AIDS,Stacey points out that explanations by alternative practitioners which locate the origins of physical illness in psychological imbalancesand deviance from heteronormality can easily be read as victim blaming. The analysis by one such writer of why women develop cancer, she argues, “is equally individualising and depoliticising: the individual’s inability to create a positive sense of the self is blamed for the disease, while power dynamics and social inequalities are simply accepted as given, almost natural and inevitable context”(Stacey 1997, 43).Much of Stacey’s book, in fact, is about identity. A very interesting chapter juxtaposes the stigma associated with cancer with that attached to homosexuality, or what she calls the cultural associations between the C word and the L word: both are taboo, monstrous.

Queer studies, feminist theory, and debates about HIV/AIDS since the 1980s shape both Stacey’s and Jain’s approaches to cancer (HIV/AIDS, of course, also changed Sontag’s thinking). Both authors declare their indebtedness to the African American feminist, poet, lesbian, and breast cancer activist Audre Lorde, and to gay activism. Both Stacey and Jain follow Lorde in rejecting victim blaming and the dominant focus on the individual rather than social, political and environmental spheres. “Framing survivorship as a personal accomplishment further separates cancer causations from its manifestations,” Jain argues, “cancer becomes a passively occurring hurdle to be surmounted by resolve rather than the direct effect of a violent environment”(Jain 2013, 186). As for Stacey, moving on from cancer treatment to Jain involved research: voracious reading, from histories of cancer to trial reports, attendance at oncology conferences, archive visits. Both books deal with identity: the somewhat unusual identity of a young, lesbian woman diagnosed with cancer, a ‘cancer butch’, as Jain puts it in the title of a chapter in which she discusses the considerations that led her to opt for a removal of both breasts: “Rather than being a welcome harbinger of womanhood twenty-five years before, breasts stole my tomboy youth”(Jain 2013, 75). Jain more so than Stacey addresses the social and economic realities that cancer patients face: somewhat direr in the American health system than in the British National Health Service where treatment is free at the point of delivery, as paying for your cancer treatment can easily impoverish you and your family.

Jain’s argument draws its strength from the precision with which she unpacks assumptions and practices around cancer, and especially the uses of statistics and probabilities, building on her previous work on injury law.Starting with her own experience and complemented by the stories of women she got to know in retreats, she asks how it can be that doctors get away with sloppy breast examinations, and companies with selling carcinogenic products.As one in 207 women at her age who experience her type and stage of cancer, what does it mean if the five-year survival rate is 34.7%? The “stunning specificity” of the prognosis, she writes, “shields the bloodlessly vague platitude: in five years, you, yourself, will be either dead or alive”(Jain 2013, 29). Cancer and its entanglement with modern life to Jain are both a scandal and a conspiracy, in which most of us play our parts: a “Faustian bargain”(Jain 2013, 190). “On the one hand, many Americans realize that carcinogens buttress the American economy,” Jain argues, “On the other hand, we rarely consider the actual people living with and dying from cancer as being a sacrifice to, and a structural result of, our use of these toxins”(Jain 2013, 185).Part of the scandal is that we can never be sure. Cancer patients will never know what exactly caused their cancer. Before they are diagnosed, they lived with risk; if and when they have been diagnosed, they live in prognosis.

A striking example ofthe Faustian bargain around cancer is fertility treatment. Jain herself acted as an egg donor to enable a former partner to have children years before her diagnosis. The drugs prescribed as part of such procedures make success more likely, but they also appear to increase the risk for women thus treated to develop cancer. Doctors have long known that links exist between hormone treatments and cancer. Conclusive data on causal connections are difficult to obtain, as cancer has many causes and takes years or decades to develop. However, a 2007 report on the risks of such treatments, as Jain points out, “cites a lack of evidence as evidence of no danger, rather than acknowledging that no data exist on the long-term effects”(Jain 2013, 146). The manufacture of ubiquitous plastic productsalso involves chemicals such as Bisphenol A, linked in studies to breast cancer, heart disease, and liver abnormalities. Despite media attention, as Jain points out, BPA continues to be used widely, without any labelling or warning. The link between lung cancer and smoking is exceptionally well established, which nevertheless has not led to a ban of cigarettes, although well over half a century has passed since the first conclusive studies. For the great majority of potentially cancer causing substances no such data are available. In the few cases that make it into courts of law, the level of proof required is ridiculous: Jain cites the example of Firestone and the Crazy Horse dump in Salinas, California, where the Supreme Court reversed a decision to award compensation asthe plaintiffs were unable to prove that theirfears about cancer were legitimate: they could not establish that Firestone’s conduct was directed at them, and that exposure to the dumped carcinogenic chemicals was “more likely than not”to result in cancer. Jain points out that “this threshold would allow a chemical exposure that kills off 20, 30, 40, or even 49 percent of a population, as long as the company does not directly target individuals”(Jain 2013, 193).

Jain’s take on cancer screening is unexpected, at least for this reader. Opinions on screening usually fall into one of two categories: many oncologists and cancer campaigners assume that screening must be good because it allows earlier interventions, while screening sceptics argue that screening turns many into cancer patients when the anomalies detected would have never caused them any trouble, and often misses the really dangerous, fast-growing tumours. Many social scientists are among the sceptics. Not Jain: her chapter on screening builds on a close reading of an article by a sceptic, an oncologist, whose arguments Jain carefully demolishes. She points out that many of the assumptions underlying the study are confused, evidence is deployed inconsistently, and some of the population data is not suitable for the purpose for which it is used. This is all pretty convincing, although Jain goes a bit too far for my taste in dismissing research that supports any economic interests as almost automatically flawed. When a study finds that many lung cancer deaths could be prevented through the widespread use of CT scans and it turns out this study is funded by the parent company of a cigarette manufacturer, does this necessarily disqualify the result? Or is this all part of the Faustian bargain?

Susan Sontag in 1977 sought to unpack the cultural associations of cancer to help her cope. When the disease “is finally understood and the rate of cure becomes much higher”, she speculated, “perhaps nobody will want any longer to compare anything awful to cancer”(Sontag 1991, 86–87). For sure, scientists know a lot more today about the biological mechanisms that transform normal cells into cancer cells, butthe cure for cancer, which has been just around the corner for decades, is as elusive now as it was when Sontag wrote her essay. There are treatments, many of them better than 40 years ago, but there is no cure that restores those diagnosed with cancer to the status quo ante. Jain shows that there is no escape from probabilities. Cancer is bad luck: stuff goes wrong in thecells that make upour bodies, and occasionally it doesnot get fixed. But for some of usit is more likely that stuff goes wrong and doesnot get fixed: if we have inherited the wrong genes, for instance, or have been exposed to the wrong chemicals. Some exposures are consequences of more or less well-informed decisions taken for reasonsand based on information that seemed good enough at the time: fertility treatments, for example. Others are due to decisions taken by of others, negligently and sometimes criminally. No individual exposure necessarily results in cancer;but in retrospect, one of them may have.A cancer diagnosiscreates a senseof regret and sometimes betrayal, Jain argues,the need to deal with the facts while wondering if things could have turned out differently, and perhaps the realisation that potential causes of cancer hide everywhere in plain sight.“Cognitive dissonance”, she writes, “a defining feature of cancer, can’t be resolved, only spun out and examined”(Jain 2013, 23). And she does spin it out, in this sophisticated, alarming, and beautifully written book.We may all hold passports for both kingdoms, as Sontag has suggested, that of the sick and that of the well, but only those who have been diagnosed can no longer avoid facing up to what Jain calls ‘living in prognosis’. Thanks to Frank and the many authors who have written about their experiences, however, it is easier now to find out how others have coped. And for some, like Jain and Stacey, a central part of moving on was critique.