My most recent piece of research for my PhD is about biosocial selfhood and I am finding the literature fascinating, especially as it applies to my own experiences. For my PhD I’m working with participants who have had a cancer diagnosis rather than taking an autoethnographic approach, so I thought I’d record here some of the things that this research is making me feel and reflect on personally, as this won’t make it into the PhD itself.
But first, what is biosociality? The term was coined in the early 90s by an anthropologist called Paul Rabinow, who was responding to the specific historical moment when the Human Genome Project had commenced, and there was increasing interest in, and speculation about, genetics. Rabinow was based at UC Berkeley but was a huge Francophile, and a big fan of Michel Foucault, who he invited to the US, and whose works he translated and discussed. He was building on Foucault’s concept of ‘biopower’, in which Foucault described the exercising of power and disciplinary technologies at both the individual level (that of the human body) and at the population level (for example knowledge circulation, population control and welfare). Rabinow saw the potential for the technical innovations of genomic research to completely transform social practices, as well as the ways in which individuals related to both themselves and to others. He foresaw social groups forming around biomedical knowledges. He was initially referring to genetic realities, but as a concept, biosociality was quickly taken up by social scientists working in many different fields, including AIDS and cancer research.
In the current UK context of breast cancer, for example, groups form around biomedical knowledges, some of which I have participated in, and many of which I have found to be very helpful. I’m a member of several ‘secret’ online communities: one for people with a BRCA genetic mutation, one for those diagnosed with breast cancer under 40, one for those wishing to build resilience after a diagnosis. Some groups form around different treatment pathways, such as breast reconstruction, or specific cancer types, such as blood cancer. There is also a lively community across various different social media platforms, self-nicknamed ‘cancer fam’ (family), using hashtags to connect, and communicating with a large dollop of dark humour. These biosocial groups use their collective identities for a number of reasons: to mobilise for funding, for example, or changes in medical regulations, or access to treatment pathways. They also serve as vital spaces outside the medical establishment where peers can share information about their experiences, language and terminology, and provide each other with support as they navigate their way through cancer. There are things you can say in these groups that are very hard to share with ‘cancer muggles’ outside the groups!
A good example is that of ‘AFC’, or ‘Aesthetic Flat Closure’. When I found out that I carry the BRCA1 mutation, I was considering my options regarding my breasts, and decided I wanted a double mastectomy with no reconstruction. For those of you who have not undertaken this journey, you may be surprised to hear how much pressure patients are put under to have breast reconstruction. In my opinion this is largely due to the patriarchal roots of medicine, social norms of femininity, and some outdated studies about reconstruction being linked to a higher quality of life. When I informed my (oncoplastic) surgeon that I didn’t want reconstruction, she exclaimed, horrified, “but don’t you want to look normal?”. So imagine my relief when I found a secret online community called ‘Flat Friends’, where women who had undergone a single or double mastectomy without reconstruction could gather and share their experiences. Through this group, I was able to source photographs from another member that I could share with my surgeon to illustrate my desired surgical outcomes. Luckily my surgeon agreed to my request (many others in the group have not been so lucky, waking up after surgery to find that their surgeon had ‘saved’ a load of skin under their arms, nicknamed ‘dog ears’, ‘just in case’ they changed their minds and elected for reconstruction later on). A couple of years after my surgery, the term ‘Aesthetic Flat Closure’ was coined, which was essentially a surgical outcome just as valid as any of the many reconstruction options, as campaigners worked to have this presented to patients as an option (remaining flat was not presented to me as an option, and I was only allowed to proceed with my mastectomy surgery after a psychologist ‘cleared’ me of freely making the choice). It sounds simple, but the coining and defining of this term has been instrumental in supporting (some) women to have the surgical outcomes they desire. (It has not, however, completely normalised remaining flat.)
So you can see how these biosocial communities can prove useful, empowering and supportive. In many ways they could be seen as an example of feminist collective care, where group members come together to support each other to live in the world as well as possible. The rebuilding of our post-cancer selves is necessarily relational: it was only through relating to others with similar biological knowledges that I could begin to understand what I had experienced and to start to shape who I was post-cancer.
However, there are problematic elements too. Our biomedical markers are but one element of bio-identity that constitute a whole person. Gender, race and age, for example, play a part in forming who we are, as do cultural elements such as socio-economic background and geography. Social norms and representation are also key in shaping our sense of self, especially post-cancer. The ‘Look Good, Feel Better’ programme hands out swagbags of make-up and gives free tutorials to cancer patients, supporting them to ‘look normal’ while going through treatment by drawing on eyebrows and covering up chemo-induced bad skin. While I’m sure such programmes are well-meaning, they perpetuate norms of gender and femininity, eliding difference and not creating spaces for patients whose gender expressions or personal preferences sit outside of these norms.
Disability activists also find some elements of biosocial communities problematic, as they tend to group people according to a biomedical model which positions disability as a physical or mental defect originating in an individual. Instead, disability activists tend to prefer the social model of disbility which contends that people are disabled by society, which excludes or pathologises them, creating barriers to their inclusion.
How is the self remade, post-cancer? Well that’s the big question of my PhD! Give me another couple of years and I’ll tell you. In the meantime, I’m newly attuned to the impact of biosocial communities, whether they’re essentialising or liberating, and will be interested to see to what, if any, biosocial groups my research participants belong.
(Image: I’m putting my vulnerability out there: this is a terrible drawing I did to represent ‘collective care’. I’m doing a course at the moment called ‘Drawing in Research’ and I’m trying to draw without judgement as I progress my research and thinking. I know this isn’t necessarily ‘good’ but it says what I want it to say I guess. Don’t judge!)
References:
Brown, T., Dyck, I., Greenhough, B., Raven‐Ellison, M., Ornstein, M., & Duffy, S. W. (2019). “They say it’s more aggressive in black women”: Biosociality, breast cancer, and becoming a population “at risk”. Transactions of the Institute of British Geographers, 44(3), 509–523. https://doi.org/10.1111/tran.12290
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
Fisher, B., & Tronto, J. (2003). Towards a Feminist Theory of Caring.
Foucault, M. (1979) The History of Sexuality: The Will to Knowledge, Penguin Random House, UK.
Foucault, M. (1980) Power/Knowledge: Selected Interviews and Other Writings 1972-1977, Pantheon, New York.
Hacking, I. (2006). Genetics, biosocial groups & the future of identity. Daedalus, 135(4), 81–95. https://doi.org/10.1162/daed.2006.135.4.81
Haraway, D. (1988). Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective. Feminist Studies, 14(3).
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
Jain, S. L. (2007a). Cancer Butch. Cultural Anthropology, 22(4), 501–538. https://doi.org/10.1525/can.2007.22.4.501
Lemke, T. (2015). Patient Organizations as Biosocial Communities? Conceptual Clarifications and Critical remarks. In P. Wehling, W. Viehover, & S. Koenen (Eds.), The Public Shaping of Medical Research. Patient Associations, Health Movements and Biomedicine (pp. 191–207). Routledge.
Lord, C. (2002). From The Summer of Her Baldness. Art Journal, 61(1), 34–47. https://doi.org/10.1080/00043249.2002.10792106
Rabinow, P. (1996). Artificiality and Enlightenment: From Sociobiology to Biosociality. In Essays on the Anthropology of Reason.
Rose, N., & Novas, C. (2005). Biological Citizenship.