The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism

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Maren Klawiter (Author of The Biopolitics of Breast Cancer)

In Segal wrote an opinion piece for The Vancouver Sun. A15 in the emails and cards she received. Segal explains that it was not that she was being told she must be strong, instead, she argues, it was that she was implicitly steered away from other ways of being. Segal proposes an alternate way of interpreting of Cancer Awareness Month. She argues: 35 An unconventional breast-cancer story gets harder and harder, under existing conditions, to tell.

A15 In all of her writing on breast cancer narratives, Segal calls for a different kind of cancer story. Without a doubt, she calls for breast cancer narratives that dare to disrupt the tropes of the standard story.

Social-Political Aspects

In several instances, breast cancer narratives rooted in experiential knowledge have already answered this call, as Knopf-Newman has successfully highlighted in her own scholarly work. Here, Knopf-Newman illustrates how breast cancer narratives can be politically insistent in the public realm, asserting that not all authors prescriptively tell iterations of the standard story, and that these stories can function to politicize cultural studies of disease by connecting autobiographical literature to political action in meaningful ways.

Diedrich stresses that in her readings of breast cancer narratives she pays attention to how the body, knowledge, and language are all potentially made politically salient through the manifestation of illness. Interdisciplinary study reveals that disruptive breast cancer narratives highlight not only autobiographical acts and performances, but also the affective dimensions of the public sphere and how these personal stories of illness have the potential to form, individually and collectively, significant archives of feeling.

Article excerpt

The project emerged in postmillennial U. Taking a cue from the important theoretical and methodological work done by Public Feelings, my project understands breast cancer as both a disease and an important cultural formation with a large affective presence in the public sphere.

Because I seek to explore how breast cancer narratives inform, as well as form, archives of feeling in the public sphere through the narration of experiential knowledge, a brief turn to queer and feminist scholarship on public life and emotion is necessary. Further, a discourse that 39 understands emotion as belonging properly to private worlds rather than public spheres has functioned to undermine the distinctly public acts of both women and queer activists Boler, Certainly, particular emotions continue to be regulated in the public sphere, especially when the performing bodies are female, queer or racialized others Ahmed, ; Jaggar, Not only do these acts fail to make one feel better about the political process, they also fail to make one feel better individually and subjectively about participation in the public sphere Berlant, It Might Be Political!

Instead of conceptualizing negative affects as instances of turning away from engagement and participation in public life, negative affects might instead be understood to function as a manner of vital attachment Berlant, Negative affects have the potential to ignite critical engagement within the sphere of public feelings in ways that can be theoretical and theatrical, personal and performative, embodied and cerebral, as I will illustrate in examining the disruptive element of anger in the breast cancer narratives discussed throughout this project.

It is immanently important to connect scholarship on public feelings to literature that explores the affective work illness narratives do as well as, more broadly, to literature which reinvigorates theoretical discussions of emotion by approaching this topic from feminist and queer perspectives. Throughout Treatments Lisa Diedrich speaks to the cultural, political and affective work illness narratives do in the public sphere, considering what illness narratives do for those who write and read them, and the literary, medical, and cultural institutions these stories are absorbed into or stay apart from p.

She considers the various ways illness narratives describe individual illness experiences and the ways illnesses also become cultural and political events p. Affect, as an already important theoretical category in psychoanalytic theory, has more recently been taken up throughout cultural studies.

She also maps the turn to affect as a consequence of thinking through and of the body, which is particularly important not only in illness narratives generally, but breast cancer narratives specifically. As Maren Klawiter explains, in framing breast cancer culture as a complex social movement made up of several cultures of action, these cultures of action are in turn guided by cultures of emotion p. In critiquing it, Ahmed contributes to work in cultural studies arguing that emotions are best understood not simply as psychological states but as social and cultural practices p.

In this way, I contend that the emotions of breast cancer narratives can also be understood as performances, and read in performative terms as these emotions are expressed in the public sphere. She stresses that this conception of the sociality of emotions can take a similar form to the psychological model, though divergent in orientation.

Ahmed offers a different understanding of the sociality of emotion by suggesting that it should be thought of as relational. Emotions are not, simplistically, something we have individually or collectively. This conception of citizenship, as a form of affective belonging, can bind participants in a social and political economy of feeling; indeed, their negative feelings of disappointment, pain and anger are not unlike those expressed by angry breast cancer patients and survivors.

In forming an alternative archive of queer trauma, Cvetkovich turns to multiple genres 46 including the novel, poem, interview, video, film, photography, autobiographical writing, and performance. Whereas breast cancer culture can be understood to disavow death Jain, a, b —by emphasising the potential for the return of good health after cancer treatments, of better and more tolerable cancer treatments, and by accentuating positive ways to live with cancer King, —women do die from the disease and there must be a space for public feelings of despair and sadness.

If public memorials to the lives lost to cancer are not possible in the current historical moment, then ephemeral archives of mourning are not only possible, but like the archive formed in and around angry breast cancer stories, are often brought into existence through counternarratives and subcultural collectivity.

To this end, disruptive breast cancer narratives which explicitly explore the body—as being emotive, experiential, and material—significantly inform and shape the formation of this archive of feeling. These elements are significant in understanding illness and medicine as performative events inextricable from narrative and narrativity.

Narratives of illness and disease—of self, of breast cancer—speak to the physical and emotional body in visceral and meaningful ways. For the self both has, and is, a body Charon, p. This warped nature of both time and body is bound to have an impact on the ways in which breast cancer narratives are told and written.

As she suggests, it is immanently important to examine how the post-surgical body is constructed and reconstructed in the context of breast cancer culture. After her first mastectomy, but before her second, Jain found it difficult to navigate the implied public body politics of having only one breast p. Delese Wear points to how literary representations of mastectomy engage with the complexity of representing the body and emotions, and explores how authors write denial and fear, sadness and pain, shame, and, in certain instances, transcendence after breast cancer surgery.

In turning to narratives that specifically engage with mastectomy as producing specific knowledges, scholarly work in gender and sexuality studies that seeks to 51 challenge the normative and heteronormative assumptions placed on bodies and subjectivities diagnosed and treated for breast cancer is particularly relevant. Firstly, not only is a cancer diagnosis made specifically of the breast, there is a pervasive insistence on trying to attach normatively gendered femininity to those diagnosed with breast cancer.

Remaking the Self: Trauma, Teachable Moments, and the Biopolitics of Cancer Survivorship

Thus, Jain calls for a queer analysis of breast cancer because it has the potential to offer more than the fact that in the United States lesbians may still be the most undertreated subsection of the population p. Still, Jain reminds us, I draw a space in which cancer can come out of the closet in a way that is not about comforting ourselves and each other, and that is not about righteous anger but, rather, is a space of mourning and a space for the agency and material humanity of suffering and death.

Finally, the scholarly literature in qualitative health studies which employ a narrative approach to the study of illness and disease directly informs my own approach to breast cancer narratives, as these narratives also struggle to make sense of, and disrupt, biomedical knowledge and embodied experience.

That story can be confirmed or contested by accounts from individuals or groups about their own experience of disease, disability or trauma. What is evident is that events or symptoms do not carry the same meanings when they are framed differently or viewed from different perspectives. This is an area which demands multidisciplinary, cross-disciplinary, transdisciplinary, or interdisciplinary collaboration to enable a sharing of perspectives that can lead to new insights. Pedagogical activities in the medical humanities bring the content, concepts or methods of humanities disciplines to medical education in order to explore illness, disability, pain and suffering with the intention of fostering, encouraging and motivating future health care professionals to integrate into their clinical practices not only self-reflexivity but also empathy Shapiro et al.

One would hope that they also pay attention to cultural competency in relation to the diversity of patient experiences.

  • Background.
  • Best Short Stories: A Dual-Language Book.
  • The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism.

At best, the medical humanities might also highlight how medicine functions through discourses, practices and narratives and has the potential to produce patients through the institution of biomedicine. Illness narratives—storied accounts of illness, disease, disability, pain, suffering and trauma—are taught in a medical education context, in part, because of the powerful affective dimensions of patient experience these stories might convey; narrative is taught because it is deemed to function unlike any other type of teaching tool.

That said, Delese Wear and Julie M. Therefore, they stress the need for a robust critical approach to narrative inquiry, one that diverges from the study of individuated realities to the collective processes of oppression and suffering, in order to encourage students to enter a critical space that engages with the lives of others as represented in narrative form p. Segal b reminds that we must fully integrate narrative into health research because of what might be lost without such stories of patient experience and distress: 55 Narrative…gives meaning and texture and humanity to what might otherwise be just cases; the embodiments of disease, disability, and trauma.

Instead, at best, it might provide a window into the complex, often painful and distressing, world of patient experience. Raoul et al. In other words, we recognize a disruptive or unconventional illness narrative because, in part, we can so easily identify a normative or conventional one. Yet not all autobiographical breast cancer narratives fail to disrupt and perform an unconventional or renegade narrative.

While certain narratives may be best understood to disrupt normative breast cancer knowledge Raoul et al. They can also be analyzed from a range of methodological perspectives that raise academic and ethical issues regarding what can or should be done through or with personal narratives. Both normative and disruptive stories can be taken up and used in a variety of ways by the qualitative health researcher. The uptake illness narratives are given in scholarly discourse—the way, for example, personal stories of breast cancer can be used to support or contest the ideologies and discourses of dominant breast cancer culture—can fulfill functions the storyteller may, or may not, be aware of.

This situation does not present reason enough to refrain from using personal stories in such ways. The researcher, as first a reader of illness narratives, must pay attention to the specific ethics individual illness narratives present in attempting to translate an experience of illness into narrative form for public consumption.

Ethics are involved in both the writing and reading of illness narratives, as much as ethics are also involved in the researching and study of illness narratives. As feminist bioethicist Hilde Lindemann Nelson argues, we do many things with stories p. As writers, readers and researchers we 58 construct and read stories, we invoke and counter them, analyze and compare them, and we also parody them Nelson as cited in Raoul et al. In order to examine, especially, the performance of politics, emotion and gender in disruptive breast cancer narrative of the current historical moment, I also turn to disruptive narratives written in the s and s.

At first glance, anger appears a more prominent feature in narratives written in that era than in breast cancer narratives currently in popular circulation. Anne Hunsaker Hawkins describes a shift in tone, and intent even, in pathographies or illness narratives written the late s. I am particularly motivated to engage with feminist theorizing of anger as it is informed by cultural studies of emotion, a scholarly field that parts ways with psychological and psychoanalytic understandings of feelings and affect.

What first propelled me into this research project was a general questioning of why anger is largely discordant within cultures of illness and very specifically within breast cancer culture. I wondered if feminist and queer theoretical perspectives might help to illuminate this question. As such, in my research chapters I endeavour not only to engage with the performances and performativity of emotion in disruptive breast cancer narratives, but also to invigorate debate on the possibilities and problematics of theorizing anger from feminist, queer, and trans perspectives.

Next, in Chapter Three, I turn to the problematics of theorizing illness narratives and the ethical considerations one must engage with when undertaking a project informed by feminist approaches to narrative bioethics. She is interested in both disruptive and normative stories of illness. In fact, she queries, What sort of subject is formed in the practice of writing memoir in general, and illness narratives in particular?

What sorts of knowledges are articulated in such writing? How are these knowledges different from expert medical knowledges, and are they capable of transforming expert medical knowledges? And, finally, what sort of ethics emerges out of such scenes of loss and the attempts to capture them in writing? Overall, she also endeavours to explore questions of subjectivity and embodiment, literary practices, knowledge creation, and ethics in relation to the writing and study of the memoir form.

I point to the major themes of Treatments in part to acknowledge the similarities between this text and my own project, but also as an opportunity to articulate the differences between our projects, especially from theoretical and methodological perspectives. In this chapter, and throughout my project, I turn to feminist theory, specifically feminist bioethics and especially narrative approaches to bioethics which have been positively informed by theoretical advances made in literary criticism. Narratology and the narrativist turn in the social sciences and humanities by extension, provide an interdisciplinary approach well suited to my object of study, disruptive breast cancer narratives.

I place narrative disruption in a context of historical and ongoing feminist interventions into dominant discourses, including biomedicine which remains a discourse rife with examples in need of feminist bioethical inquiry. These feminist interventions speak out not only against how women continue to be marginalised by hegemonic power embedded in biomedicine, but also how gender variance is intrinsically marginalized within this system as well.

Moreover, it is at the intersections of gender, race, sexuality, ability, age and class that sociocultural and societal privileges and oppressions not only inform identity formation but also have great power over the material, physical, and emotional realities of subjects. Through intersectional analysis the very concept of narrative identities formed in relation to illness can be situated, explicated, and seen as complicated. I undertake to engage with politically salient bioethical perspectives, and because there is no such thing as a neutral bioethics Wolf, , p.

It is important to remember that the project of bioethics is governed by a moral and political claim to prevent or reduce harm to vulnerable populations and subjectivities. While the discipline of bioethics encompasses various fields of inquiry, including medical ethics, research ethics, clinical ethics and biomedical ethics p. Susan Wolf argues that it is not incidental that bioethics has overwhelmingly ignored questions of gender and feminism within its foundational discussions and debates. It situates ethical dilemmas as problems between individuals or those of entire societies, yet fails to examine the 64 significance of distinct sociocultural formations.

It lacks critical reflexivity in thinking through whom the field serves and how Wolf, , p. Bioethics, as a modernist enterprise emerging at a time of other rights-based movements of the s and s, has focused on protecting vulnerable patients and research subjects, the ethics that guide physicians and scientists, and the relationship between medicine, science, and social meaning Wolf, , p. Bioethics could be described as the explication and study of the ethics of healthcare, medicine, and the biological sciences.

Recent texts illustrate feminist bioethical inquiry in action, as they investigate the social, political, and medical implications of breast cancer as it manifests not only as a disease but also as a culture with far-reaching implications. Klawiter offers an alternative sociological perspective, framing breast cancer culture as a complex social 65 movement in the United States in the twentieth century. Klawiter explores how women with breast cancer come to perform in this changing social landscape, by exploring the ways bodies figure not only as sites of organic suffering and targets for the inscription of power but also as sources of subjectivity, anchors of identity, and flexible, expressive symbols and signifiers of competing discourses and practices of health, normality, risk, deviance, disability, and disease.

The sick role also closeted convalescence and ensured that women who had undergone mastectomy would be invisible to each other and to the public Lorde, ; Klawiter, , p.

The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism
The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism
The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism
The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism
The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism
The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism
The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism

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