«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Anthropologies of the body consider physical, bodily experience, embodied knowledge, senses and emotions (see e.g. Fraser and Greco 2005). Millward and Kelly (2003) suggest that, although the experience of (chronic) illness is a social one, the physical world, the human body and its biological capacities and constrains is the backdrop to such social experience. They therefore postulate a “holistic account of the nature of human experience embracing the material world, the biological imperatives of the human body, the social world in which human bodies reside, and
the mediating role of the individual’s sense of self in this” (Millward and Kelly 2003:
In this thesis I argue that in order to understand why people engage in practices of body maintenance for diabetes control more questions are relevant to ask. No doubt, it is an intriguing and valid question to ask if subjects can achieve freedom through techniques of self-care. And can anyone truly act outside Foucault’s power/knowledge? However, these questions might not represent lived experience very well, nor serve to understand it. I suggest that this thesis does not contain narratives of dominance, resistance or pursuit of freedom, but here bodies are docile or practiced on to be liveable (Chapter 6). By that I mean that bodies are disciplined to be pain-free, sensible and functional. Discipline and self-care can be neither about a governing, pervasive power, nor an ethical, normative exercise, but about practicalities of life, influenced by interpersonal relations, as much as social class, age, gender or ethnicity (Lupton 1997). This is not to say that achieving a body that is more in control, is less inconvenient and self-destructing, and doing so on their own terms cannot also be a sign of achieving freedom on a more abstract level.
In order to seek a better representation of the deliberate practices of diabetes self-care of Turkish Berliners and go beyond a Foucauldian framework, I turn towards a perhaps unusual scholar who did not write about “bio” and bodies. He did, however, write about everyday lives of the ordinary, less privileged. De Certeau, in his Everyday Practices of Life (1984), emphasised the agency of the ordinary person.
He explored how ordinary people manoeuvre through ordinary situation of living, for example the work place or walking through urban spaces. While “strategies” are devised in institutions, much like Foucault’s power/knowledge, de Certeau understands “tactics” as the practices of ordinary people to make such strategies “habitable” in their everyday lives (ibid. 34ff). In his approach, de Certeau considers “tactics” as tools of the weak, as forms of subversion or resistance. Admittedly,
Foucault’s early work also allowed for the possibility of resistance (Lupton 1997:
102) and he saw power as something collaborative, though only later did “agency” enter his work. To revisit the previous discussion, I draw upon de Certeau for his acknowledgement of agency in the ordinary person, while remaining with the argument that daily practices of diabetes control should not be foremost understood as forms of resistance but are simply practical exercises of making illness and ill bodies liveable. De Certeau may at first glance not help to understand the biological dimension of diabetes management but his account describes how chronically ill bodies are disciplines not for ethical reasons, striving for a “good” life, but for practical reasons, striving for a liveable life. I thus propose to call Turkish Berliners practices of diabetes self-care “bio-tactics” as an extension of de Certau’s idea (Chapter 6).
On a final note, revisiting both Foucault’s (1990 ) account of an ancient ethical quest of body control, and the studies by Borovoy and Hine (2008) on Russian immigrants and by Ritenbaugh (1982) on American middle-class women alert to something else in regards to marginalised population groups. Both Foucauldian Greco-Roman and neoliberal self-care of exercise and healthy eating, although with different motivation, describe a very ethnocentric, Western notion.
Self-care, however, varies across history and cultures. The seemingly opposing value of “big is beautiful”, shared in many low- and middle-income countries (and by many of my research participants), cannot be understood as resisting or ignoring selfcare or health maintenance. Rather, aspiring to a larger body figure can be explored as self-care in its own right in societies where poverty and infectious diseases can be fatal for skinny people.
3.2 Beyond biosociality
Rabinow’s biosociality The other body of literature that is discussed in this chapter is “biosociality”, moving from self-care to self-care groups. Paul Rabinow once summarised Foucault’s biopower as a relationship of “letting die” and “making live” (Rabinow and Rose 2006).
His own work on new biotechnologies and human genetics seemed to have taken him one step further towards “making life”. Rabinow (1996a) argued that new biotechnologies revise perceptions of biologies and create new socialities that he coined “biosocialities”. Rabinow, though, showed less interest in such biosocial lives than in what he regarded as the cradle of biosociality: the science laboratories in which life is “in the making”.
Rabinow’s research interest lies in new modern venues of life: the exploration of biotechnological advances in human genetics, specifically the technology of polymerase change reaction (Making PCR: A story of biotechnology 1996b) and recombinant DNA (French DNA: Trouble in purgatory 1999). These new technologies represent major developments in human genetics that fundamentally changed how the human body is understood and how certain diseases are classified.
Such biotechnologies profoundly shape identities and can form collective selves and activism (Gibbon and Novas 2008: 2). Stating in his essay Artificiality and
There are already [...] groups whose members meet to share their experiences, lobby for their disease, educate their children, redo their home environment, and so on. That is what I mean by biosociality. [... I]t is not hard to imagine groups formed around the chromosome 17, locus 16,256, site 654,376 allele variant with a guanine substitution. Such groups will have medical specialists, laboratories, narratives, traditions, and a heavy panoply of pastoral keepers to help them experience, share, intervene, and “understand” their fate. (Rabinow 1996a: 102) In short, contemporary biotechnological diagnostic and therapeutic tools create new kind of patients, or patients to-be through genetic illness susceptibility, that form groups of solidarity based on such emergent biological identities. While biosocialities are no radically new idea – “traditional” biosocialities are based on age, gender or ethnicity – Rabinow added more complexity. Rabinow’s “biosociality” describes how biology, for example a faulty gene, creates sociality, an interest groups of those affected, that share their experiences via Internet chat rooms, engage in fund raising and lobby for scientific research. In doing so, Rabinow broadened the exploration of “life” exploring domains of state, science, venture capital, ethics and consumerism.
Despite such broad scope, however, biosociality seems to refer to the patient in particular, while Rabinow’s work largely focuses on the scientist. Following Latour’s Laboratory Life (with Woolgar 1986), Rabinow chose to explore formerly often black-boxed sites as his setting of ethnographic research. Although he considered the implications beyond the laboratory – namely in the formation of biosociality – he privileged these biotechnological spaces as sites of knowledge production, practice and negotiations (Rabinow 1999). He agreed with Latour (1987) that, while social theory was traditionally interested in the societal responses to illness or science, spaces of sciences are equally contested and contesting spheres.
These are the sites where ideas of nature and culture are challenged, where he can witness “life in the making” (Rabinow 1996b: 2). His fascination with biotechnology arose not only from its impact on social discourse and identity but its equally shaping, creative power over biology. Rabinow’s science ethnographies were not actually interested in tracing the biosocial lives created by these technologies. His work has a strong focus on biotechnologies, how they transform nature as we know and perceive it, thus change identities and personhood and create social momentum.
Biosociality means both the reinvention of nature, as previously personified in Haraway’s cyborg (1991) that is a hybrid of nature and technology, and the formation of collective identity and activism by such transformed perceptions of biology.
Ethnographies of biosociality Rabinow did not actually produce ethnographies of biosociality and this thesis is a contribution to a growing body of literature that aims to explore lived experiences of biosociality. While Rabinow is only tangentially interested in actual self-help practices of biosocial groups, his contemporaries and students continue this line of inquiry in a fast moving scientific age and exploring their making and transformations. The concept of biosociality is immensely popular and ethnographic studies that describe biosocial groups plentiful.
The edited volume by Gibbon and Novas (2008), for example, collected studies of biosociality. Roberts (2008) explores the impact of IVF technology in Ecuador. While this technology brings hope of a “modern” solution to the “modern problem” of infertility, it also profoundly alters how middle class women experience their bodies as generally faulty and readily accept intrusive procedures to rectify this short-coming. Sahra Gibbon (2008) writes about the biosociality of cancer charity activism that engages in fundraising for molecular research, in accordance with Rabinow’s original idea of an interest group that articulates its motivation in conjunction with science and technology. New medical knowledge and diagnostic technology, namely the identification of the breast cancer gene (marker), enables to identify candidates, future patients, and repositions activism by placing a newly formulated hope in basic science. However, such technological innovation does not always seem to create sociality. Lock’s study on genetic testing for Alzheimer’s susceptibility (2008) could not find the same significance as Gibbon (2008). The results of genetic testing for Alzheimer’s had little impact on those exposed to these new possible identities as candidates or risk bearers. Lock (2008) cautions that these novel technologies with the power to reshape and recreate biologies might not automatically change how such biologies are perceived.
Recent work increasingly provided such critiques to the concept of biosociality. Kaushik Sunder Rajan (2006, 2008) ethnographically explored the political economy of genomic research and drug development. While Rabinow only alluded to economic factors in his work on biosociality, others concentrated their explorations on venture capital in emergent biotechnological markets. In his multisited ethnography Biocapital (2006), Sunder Rajan explores pharmaceutical companies in the United States and India and argues that new biotechnologies shape a new age of capitalism or rather, that this new biocapitalism cannot be understood in isolation from biotechnological developments and scientific knowledge. He examines the practices involved in this global flow of ideas, information and capital.
In a “melding together of new forms of biomedical and corporate enterprise”, the global and local players involved represented science, economy and the state (Sunder Rajan 2008: 158). In his paper on biocapital and biosociality (in the edited volume Gibbon and Novas 2008) Sunder Rajan adds a discussion of those who fall victim to such biocapitalistic transformation. Highlighting the bioethics at stake and considering identity formation in biocapitalism, he explores the experiences of former mill workers in Bombay. The mill workers faced unemployment when they lost out in the relocation of state funding from the textile industry to pharmacogenomics. Sunder Rajan (2008) describes how they became victims to biocapital as deprivation forced them to become experimental subjects of clinical trials.
Similarly, Aditya Bharadwaj (2008) ethnographically explored the political economies of IVF and stem cell technologies and practices in India and considered the impact in local contexts of deprivation and inequality. Bharadwaj argues that global biotechnologies stand in stark contrast to local realities of poverty that “asphyxiates, often prematurely, both the ‘bio’ and any semblance of ‘sociality’” (ibid. 100). Suggesting that biosociality would be an inappropriate conceptualisation of such experiences, he instead speaks of bioavailability (borrowing from Lawrence Cohen (2005)’s terminology in regard to organ transplantation in India). Actors in Indian IVF and stem cell clinics are bioavailable (e.g. providing embryos) to science and available for biocrossings (of biotechnological procedures). As biocrossings he understands assemblages of bio and social, unpredictable and varied crossings of hormones, sperm, embryos, stem cells made in social spaces. In short, local health inequalities in neo-liberal global markets produce poor patients who, rather than being biosocial, are merely bioavailable and endure biocrossings.
The biosocial lives of Turkish Berliners My ethnography diverts from most existing ethnographies on biosociality in several ways. Those ethnographies of biosociality that look outside the laboratory and investigate practices of biosociality still do not step outside the realm of biotechnologies. I show in this thesis that there are biosocialities, here Turkish Berliners with diabetes, that are not driven by high-tech science and innovation.