Coutinhosledge Uchicago 0330
Total Page：16
File Type：pdf, Size：1020Kb
THE UNIVERSITY OF CHICAGO EMBODYING GENDER THROUGH CANCER: MEDICAL INTERACTIONS AND THE PRODUCTION OF APPROPRIATELY GENDERED BODIES A DISSERTATION SUBMITTED TO THE FACULTY OF THE DIVISION OF THE SOCIAL SCIENCES IN CANDIDACY FOR THE DEGREE OF DOCTOR OF PHILOSOPHY DEPARTMENT OF SOCIOLOGY BY PIPER ELIZABETH COUTINHO-SLEDGE CHICAGO, ILLINOIS JUNE 2016 Table of Contents List of Tables ................................................................................................................................. iii Abstract .......................................................................................................................................... iv Acknowledgements ..........................................................................................................................v Introduction ......................................................................................................................................1 Chapter 1 Prevention and Early Detection .....................................................................................29 Chapter 2 Diagnosis and Treatment ...............................................................................................66 Chapter 3 Choosing Mastectomy ...................................................................................................98 Chapter 4 Reconstruction and Recovery......................................................................................133 Conclusion ...................................................................................................................................179 Appendix: Methodology ..............................................................................................................188 Bibliography ................................................................................................................................205 ii List of Tables A.1 Transgender men ...................................................................................................................198 A.2 Cisgender men.......................................................................................................................198 A.3 BRCA positive women .........................................................................................................200 A.4 Women with breast cancer ....................................................................................................200 iii Abstract In this dissertation I examine the regulation of appropriately gendered bodies within the cycle of care for "female" cancers. In both the cultural imagination and in medical care, activism and treatment of gynecological and breast cancers assume an alignment between individual identity, physical body, and normative ideologies of gender. Throughout, I argue that patients with the "wrong body" for female cancers illustrate the ways in which normative gender expectations are continually (re)produced within medical interactions and contribute to inequality in health care. My analysis draws on the experiences of patients whose bodies and gender identities don't match the medical and social expectations for gynecological and breast cancer care: transgender men who seek out gynecological care, cisgender men diagnosed with breast cancer, and cisgender women with breast cancer and/or BRCA mutations who choose prophylactic bilateral mastectomies. These patients create "gender trouble" for medical professionals. That is, they challenge associations between femininity/ female bodies and masculinity/ male bodies that are taken for granted in social life generally and are naturalized through medical care more specifically. I connect the stories of these patients to show that medical care turns on whether and how an individual "counts" as a man or woman in the context of these interactions and that patient treatment options hinge on their embodied choices. Building on contemporary theories of biopolitics and ethnomethodological theories of gender, I argue that medical interactions are critical to understanding the perpetuation of gender when bodies are under scrutiny. The interview data discussed in this dissertation shows that medical interactions reproduce and legitimate cultural ideologies of gender through patient bodies. Patients both resist and rely on gender ideologies to make sense of their treatment decisions and medical care. iv Acknowledgements I began this project in earnest after leaving the urban landscape of Chicago for the low lying mountains and fields of southern Vermont. The first person I met upon moving to a tiny village on the border of New Hampshire was the manager of the local gym. Ashley was brimming with energy when I arrived at the gym for a tour and to get membership information. The only mark of the breast cancer that would ultimately take her life was a brightly patterned headscarf, donned to conceal the impact of chemotherapy. I knew Ashley for almost two years. She ran the afterschool program at the local elementary school and coached my oldest child’s soccer team. She continued running (one of her many passions) even though doctors asked her to take it easy. In that first meeting she asked what I did. I told her that I was a graduate student working on my dissertation. This naturally led to a conversation about my research interests. Her eyes lit up but she didn’t tell me her story. I learned it slowly, through playground conversations and chats between sets at the gym. Her death still impacts the small community in which we live even though it has been over two years since she died. In the final phases of writing up my research, my step-father was diagnosed with cancer. His surgeries and chemotherapy occurred as I analyzed the accounts of respondents. As difficult an experience as it was for him and our family, he and my mother reminded me that the accounts that make up my data are so much more than that. Cancer touches nearly all of us. Even in a community larger than Ashley’s and mine, this disease can have deep effects. It can be difficult to understand and to explain the experience. I am truly grateful to all the respondents who generously shared their stories. Theirs are stories that may reflect those of friends, family, and readers themselves. I hope that I have done them justice. v For their patience, support, guidance, and careful engagement with my work I thank my committee of mentors: Kristen Schilt, Kate Cagney, Lauren Berlant, and Monica Casper. I am also indebted to my wonderful writing group (Abi Ocobock, Alicia Van de Vusse, Amy Brainer, and Clare Forstie) for their insightful readings of various versions of this project. Finally, I thank my spouse, Yamara, for her indefatigable support of my research and my kids, Noa and Zoe, for providing much needed comic relief and reality checks throughout this process. vi Introduction In May 2013, actor and humanitarian activist Angelina Jolie published an op-ed piece in the New York Times entitled, "My Medical Choice." In the article, she explained her decision to get tested for BRCA, a genetic anomaly that significantly increases a person’s lifetime risk of breast, ovarian, prostate, and pancreatic cancers. After testing positive for this genetic condition, Jolie chose to undergo a prophylactic bilateral mastectomy; a surgery to remove both healthy breasts in order to minimize her risk for eventually developing breast cancer. Jolie's essay launched a flurry of controversy, with medical professionals and other breast cancer survivors offering their opinions on her decision. Concerns in the press and the medical community centered on three main issues: whether such surgery (often deemed "radical" in the press) was medically warranted; the "perils of over awareness,” or the basing of medical decisions on fears about the potential development of breast cancer; and on the risk of "psychological harm after having radical surgery" (Davies 2013; Ferro 2013). While every surgery has associated potential complications, the notion of psychological risks implies that something more fundamental to a patient’s identity than health is at stake in these surgeries. In the case of bilateral prophylactic mastectomies, the “harm” about which physicians are concerned has to do with the disruption of a patient’s sense of femininity as a result of the surgery, a point Jolie addresses directly. She wrote, "On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity" (Jolie 2013). Jolie described her bilateral prophylactic mastectomy in a straightforward manner, including her reconstruction; "Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful." 1 Angelina Jolie’s account of her diagnosis and treatment, along with public criticism of her decisions by physicians, highlights a tension within the two main tenets of biomedical clinical practice: evidence-based medicine and patient-centered care. Put another way, the initial controversy over prophylactic mastectomies as a reasonable treatment following a positive BRCA test result illustrates a conflict between medical authority and patient agency in medical decision-making that provides a unique perspective to explore the ways in which the cycle of care for “female cancers” (i.e. breast and gynecological cancers) is embedded within the gender system. This is