The embodied self in cancer
Understandings of selfhood and the biographical disruption of diagnosis
My PhD project is about remaking the self in cancer survivorship. Which poses the question, what is this ‘self’ that is being remade, exactly? And what is it about a cancer diagnosis that requires this ‘self’ to embark on a process of ‘remaking’? My latest batch of reading has been around selfhood, embodiment and survivorship, and has taken me into all sorts of disciplines, including philosophy, phenomenology and medical sociology. Here’s a summary of my thoughts about what I’ve been reading. I’ll talk a bit about different ways of viewing ‘selfhood’, and why my preference is to view it as inherently embodied, and then I will turn to the literature about the impact of illness on one’s embodied identity and relationship with the world. I’ll touch on survivorship, sexuality and creativity linked to selfhood, but I will write in more depth about these in the future.
(But first, some definitions. In this piece I tend to use ‘self’, ‘identity’, and ‘subjectivity’ interchangeably. I explore more what is meant by ‘selfhood’, including some difference philosophical positions. You can decide which resonates most with you. I also talk about how a cancer diagnosis can affect a patient’s sense of identity and selfhood. When I talk about ‘subjectivity’ I pretty much mean selfhood. The subject is the ‘self’. The object is the ‘other’. Corporeality refers to the fact of existing as a physical body. In the piece below I try to define what is meant by embodiment, and a phenomenological perspective, but please do comment if anything requires further clarification.)
"We do not have bodies, we are our bodies."
Simone de Beauvoir, The Second Sex
Mind/body dualism
The prevailing understanding of selfhood within Western thought is that of mind/body dualism. This is often referred to as ‘Cartesian dualism’, after the 17th Century French philosopher, René Descartes. According to his logic, the mind and the body are in a binary relationship, and one’s ‘self’ is only to be found in the mind – we are thinking beings – and the body is dismissed as a mere object; a thing. Descartes believed the body to be insignificant, and separate from the essence of the self. He had a very individualistic view of the self, influenced by Enlightenment thinking, and thought that the self had a fixed essence that was merely waiting to be ‘discovered’ rather than alterable or brought into being.
Embodied selfhood
Despite the fact that this philosophy has permeated and influenced so many elements of our world, there has, however, been plenty of critique across a number of disciplines, and somewhat of a backlash, particularly in feminist thought, phenomenological philosophy and medical humanities, which I elaborate on below. Instead of seeing the mind and body as separate things, and only the ‘mind’ being part of the self, a philosophical orientation towards embodiment has gained prominence in recent decades in sociological thought. In the health (particularly nursing) literature, there has been a growing focus on attending to the embodied experience of illness, and extensive theorising on the implications of this for practices of care. This embodied view of selfhood doesn’t view the ‘self’ as a fixed, essential thing, but instead sees the self in its social, historical and cultural context, and views it in relation to other individuals, and to a wider society. In this view, we experience and understand the world through the experiences of our body, through the stimuli we receive from our senses, and we can both affect, and be affected by, the world around us.
Feminist perspectives
Feminists have long critiqued binary oppositions which are used to structure the world to facilitate inequality and patriarchal oppression. For example, the association of men with the ‘public’ life of commerce and governance, and the relegation of women to the ‘private’ sphere of care within the home, has enabled the unequal distribution of power and control over society. Similarly, the close association of women with ‘nature’, conceived as a lower order of existence, while men are identified with ‘culture’, universally valued more highly, has also contributed to female subordination. It follows, then, that feminist scholars and activists would resist a binary logic such as Cartesian dualism, which ties women to the body, nature, object and other, while men are associated with the mind, culture, subject and self. Feminists such as Hélène Cixous have subverted Descartes’ claims, asserting instead that the mind and body are partners in the creative endeavour of making meaning. Rather than the dichotomy of a dominant mind and a subservient body, scholars of corporeal feminism demonstrate the body’s vital role in subjectivity – embodied existence creates meaning, constitutes our perspective of the world, and our body and mind are both deeply integrated with our identity. The self is the mind-body.
Phenomenology
Contemporary theories of embodiment draw heavily on the work of Maurice Merleau-Ponty, whose phenomenological philosophy, while not directly naming embodiment, clearly defined the body in a way that was not commensurate with Cartesian duality. Merleau-Ponty built on the work of German philosophers Edmund Husserl and Martin Heidegger, and considered humans to be body-subjects: the unification of a physical self and a conscious self. Phenomenology is a philosophy of experience, and Merleau-Ponty asserted that it is only through lived experience that we understand things: “the world is not what I think but what I live through”. Consciousness is situated in the body, and our identity stems from our lived experience. In phenomenological thought, embodied existence is always contextual, and our experience of being-in-the-world is social and in relation with others. There are different modes through which we develop knowledge of the world, such as our experience of time, space, sexuality and language, all of which will be useful as I analyse the accounts of my research participants.
Medical mind/body dualism
Although the philosophical and sociological arguments against Cartesian dualism are strong. It still endures as the dominant mode of thinking within the medical profession. In medical contexts, the sick body is a malfunctioning biological thing: healthcare professionals will treat the diseased parts of a person’s body, labelling, naming and diagnosing the ‘problem’, without necessarily attending to the context within which the patient is experiencing pain and suffering. The lived experience of the ill person is not taken into account. Sometimes this can actually be useful for the patient, to hold their disease at a distance, something separate from themselves. We’ve all experienced this shift in perception – when the body is functioning well it recedes into the background of our consciousness, remaining ‘silent’, but in illness or pain it becomes very present – unfamiliar, unresponsive, unruly, and it is easier to see it as separate from our ‘selves’. We can view the body as the thing going through illness which ‘other’ than ourselves, while our ‘selves’ are observing the situation. Receiving a diagnosis of any kind is a hugely disruptive event, one which sociologist Michael Bury says causes a ‘biographical disruption’, requiring us to fundamentally re-think our sense of self. Cancer renders the body unrecognisable, and calls into question taken-for-granted assumptions about ourselves and the world, challenging the stability of our embodiment. This ‘biographical disruption’ becomes a common occurrence, with those diagnosed struggling to account for their sense of self, embarking on a renegotiation with their identities.
Sexuality, identity and breast cancer
My research will involve people who have had a breast cancer diagnosis, and in this context, the impact on their sense of self is strongly intertwined with the impact on their sexuality. In a cultural context of normative beauty ideals, breasts are judged as sexual objects, as symbols of feminine sexuality. Research with cis-gendered women demonstrates how cancer treatments such as surgery and radiotherapy can physically alter the breast/s, positioning their bodies outside of feminine “normality” and lowering their perception of their body image, impacting their sexual sense of self. Breast cancer survivors who identify as trans or non-binary also have an altered relationship with their embodied selves post-treatment for breast cancer. Normative knowledge systems which govern healthcare protocols challenge the embodied sense of self of patients with non-normative relationships to gender and sexuality, creating a double layer of emotional labour as these patients navigate healthcare systems. For example, the filmmakers of the documentary Trans Dudes with Lady Cancer, both trans men, described how they were not only dealing with the emotional toll of undergoing breast and ovarian cancer treatment, respectively, but they also had to repeatedly ‘come out’ and reassert their identities to healthcare professionals confused with their gender expression in the clinic. For them, this added an extra layer of trauma and impacted their sense of self in multiple ways. Much of the scholarship in breast cancer survivorship reinforces the heteronormative underpinnings of healthcare, although some scholars have more recently built on aspects of queer theory and disability studies to attend to the body in breast cancer, considering queer and crip embodiment.
Remaking the self after cancer
Now we’ve established an understanding of selfhood as necessarily embodied, and we’ve seen how cancer and its treatments disrupt a person’s sense of self, often causing them to disconnect from their body. So what about the challenges involved in renegotiating, remaking, reconstructing an embodied sense of self post-cancer? It’s not as simple as restoring a pre-diagnosis self. Instead, many people experience a constant fluctuation between different states of relation to their bodies, from a connected state of embodied subjectivity, to oscillating between states of alienation from their bodies and attempts at ‘re-embodiment’. If a person feels they have resumed an embodied relationship with themselves, it’s often tentative and uneasy, and requires constant renegotiation. This renegotiation takes many forms. Some people adopt bodily practices which facilitate a compliance with feminine social norms, seeking to restore their bodies to a ‘normal’ physical, psychological and sexual self (for example, through prostheses, make-up, etc). A significant minority, however, resist these norms, placing less emphasis on aesthetic conformity, and instead recreate a sense of self outside of mainstream representations of health, femininity and survivorship. This resistance, particularly by feminist theorists with their own lived experience of breast cancer, is in part to counter the dominant representations of a ‘cancer survivor’ as someone who has embraced the potential for personal growth that a diagnosis brings. There is a lot of pressure on people rebuilding their lives post-cancer to conform to this dominant view of survivorship – to embrace the opportunity cancer brings to create ‘a better self’. This is something I will return to in a future post.
Arts-based research methods and selfhood
To finish, I just want to make a couple of comments about the value of my chosen research methods, the arts-based methods of bodymapping and collage, in the act of remaking the self post-cancer. We all play a role in constructing our identity through the narratives that we tell about ourselves. In illness this is particularly pertinent, as people strive to ‘make sense’ of the impact their diagnosis has had on their identity through the narratives they tell. A lot of qualitative research in health and illness which seeks to uncover narratives of lived experience tends to focus on textual methods, parimarily using verbal and written methods, such as research interviews, focus groups, surveys and sometimes creative methods such as journalling, poetry and storytelling. I believe there is a huge potential in using visual, embodied methodologies, to start with an embodied view of the self and combine this with a narrative representation of the self. The methods I have chosen are less likely to neglect the bodily dimensions of the experience of cancer survivorship, and have more potential to draw my participants’ attention to their embodied experiences.
References
Baraitser, L. (2017). Enduring time. Bloomsbury Academic.
Beauvoir, S. de. (2014). The second sex (S. Malovany-Chevallier, Ed.; C. Borde, Trans.; New edition.). Vintage Digital.
Bell, K. (2012). Remaking the Self: Trauma, Teachable Moments, and the Biopolitics of Cancer Survivorship. Culture, Medicine and Psychiatry, 36(4), 584–600. https://doi.org/10.1007/s11013-012-9276-9
Bryson, M. K., & Stacey, J. (2013). Cancer Knowledge in the Plural: Queering the Biopolitics of Narrative and Affective Mobilities. Journal of Medical Humanities, 34(2), 197–212. https://doi.org/10.1007/s10912-013-9206-z
Bryson, M. K., Taylor, E. T., Boschman, L., Hart, T. L., Gahagan, J., Rail, G., & Ristock, J. (2018). Awkward Choreographies from Cancer’s Margins: Incommensurabilities of Biographical and Biomedical Knowledge in Sexual and/or Gender Minority Cancer Patients’ Treatment. Journal of Medical Humanities, 41(3), 341–361. https://doi.org/10.1007/s10912-018-9542-0
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2), 167–182.
Butler, J. (1988). Performative Acts and Gender Constitution: An Essay in Phenomenology and Feminist Theory. Theatre Journal, 40(4), 519. https://doi.org/10.2307/3207893
Chattoo, S., & Ahmad, W. I. U. (2008). The moral economy of selfhood and caring: Negotiating boundaries of personal care as embodied moral practice: Negotiating boundaries of personal care. Sociology of Health & Illness, 30(4), 550–564. https://doi.org/10.1111/j.1467-9566.2007.01072.x
Cixous, H. (1986). Sorties: Out and Out: Attacks/ways out/forays. In B. Wing (Trans.), The Newly Born Woman (pp. 200–211). University of Minnesota Press.
Crompvoets, S. (2003). Reconstructing the self: Breast cancer and the post-surgical body. Health Sociology Review, 12(2), 137–145. https://doi.org/10.5172/hesr.12.2.137
Dahlberg, H. (2019). Beyond the absent body—A phenomenological contribution to the understanding of body awareness in health and illness. Nursing Philosophy, 20(2), e12235. https://doi.org/10.1111/nup.12235
de Jager, A., Tewson, A., Ludlow, B., & Boydell, K. (2016). Embodied ways of storying the self: A systematic review of body-mapping. Forum: Qualitative Social Research, 17(2).
Ehlers, N. (2014). The Dialectics of Vulnerability: Breast Cancer and the Body in Prognosis. Configurations, 22(1), 113–135. https://doi.org/10.1353/con.2014.0003
Ehlers, N. (2017). Breast Cancer. In J. Stacey (Ed.), Gender Matters.
Ehlers, N., & Krupar, S. (2012). The body in breast cancer. Social Semiotics, 22(1), 1–11. https://doi.org/10.1080/10350330.2012.640060
Ehlers, N., & Krupar, S. (2022). Abject Ontologies: Cancer and ‘Living On’. Journal of Medical Humanities, 43(3), 455–466. https://doi.org/10.1007/s10912-021-09711-4
Ehrenreich, B. (2001). Welcome to Cancerland. Harper’s Magazine; New York, 303(1818), 43–53.
Engman, A. (2019). Embodiment and the foundation of biographical disruption. Social Science & Medicine, 225, 120–127. https://doi.org/10.1016/j.socscimed.2019.02.019
Gadow, S. (1980). Body and Self: A Dialectic. Journal of Medicine and Philosophy, 5(3), 172–185. https://doi.org/10.1093/jmp/5.3.172
Gastaldo, D., Rivas-Quarneti, N., & Magalhães, L. (2018). Body-Map Storytelling as a Health Research Methodology: Blurred Lines Creating Clear Pictures. Forum: Qualitative Social Research, 19(2).
Grosz, E. (1987). Notes towards a corporeal feminism. Australian Feminist Studies, 2(5), 1–16. https://doi.org/10.1080/08164649.1987.9961562
Higgins, J. (2018). Biosocial selfhood: Overcoming the ‘body-social problem’ within the individuation of the human self. Phenomenology and the Cognitive Sciences, 17(3), 433–454. https://doi.org/10.1007/s11097-017-9514-2
Katz, A. (2009). My body my self: Body image and sexuality in women with cancer. Canadian Oncology Nursing Journal, 19(1), E1–E4. https://doi.org/10.5737/1181912x191E1E4
Kinsella, E. A. (2005). Constructions of self: Ethical overtones in surprising locations. Medical Humanities, 31(2), 67–71. https://doi.org/10.1136/jmh.2005.000201
Marcum, J. A. (2005). Biomechanical and phenomenological models of the body, the meaning of illness and quality of care. Medicine, Health Care and Philosophy, 7(3), 311–320. https://doi.org/10.1007/s11019-004-9033-0
Mathieson, C. M., & Stam, H. J. (1995). Renegotiating Identity: Cancer Narratives. Sociology of Health & Illnes, 17(3), 283–306.
Merleau-Ponty, M. (2002). Phenomenology of perception: An introduction. Routledge.
Nelson, B., & Chong, Y. W. (Directors). (2019). Trans Dudes with Lady Cancer.
Ortner, S. B. (1972). Is Female to Male as Nature Is to Culture? Feminist Studies, 1(2), 5. https://doi.org/10.2307/3177638
Parton, C. M., Ussher, J. M., & Perz, J. (2016). Women’s Construction of Embodiment and the Abject Sexual Body After Cancer. Qualitative Health Research, 26(4), 490–503. https://doi.org/10.1177/1049732315570130
Roskelly, H. (2012). I meditate on Descartes. Social Semiotics, 22(1), 31–37. https://doi.org/10.1080/10350330.2012.640061
Shilling, C. (2016). The Rise of Body Studies and the Embodiment of Society: A Review of the Field. Horizons in Humanities and Social Sciences: An International Refereed Journal, 2(1). https://doi.org/10.19089/hhss.v2i1.39
Smith, L. T. (2012). Decolonizing methodologies: Research and indigenous peoples (Second edition). Zed Books.
Trusson, D., & Pilnick, A. (2017). Between stigma and pink positivity: Women’s perceptions of social interactions during and after breast cancer treatment. Sociology of Health & Illness, 39(3), 458–473. https://doi.org/10.1111/1467-9566.12486
Wilde, M. H. (1999). Why Embodiment Now? Advances in Nursing Science, 22(2), 25.
Williams, S. J. (1996). The Vicissitudes of Embodiment Across the Chronic Illness Trajectory. Body & Society, 2(2), 23–47. https://doi.org/10.1177/1357034X96002002002
Young, I. M. (1992). Breasted Experience: The Look and the Feeling. In D. Leder (Ed.), The Body in Medical Thought and Practice,. Kluwer Academic Publishers.
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