«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Only the research participants who I got to know very well shared such “nondiabetes related” aspects of their lives with me. Here lies the strength of ethnographic participant observation that opens its lens to everyday lives. Lived experience of diabetes does not happen in a vacuum and only inquiring about experiences of diabetes would not represent their worlds very well. However, diabetes control was a constant in their varied, complex and often testing lives, and much talked about through the platform of the self-help group. Nonetheless, the complexities of social hardship and bad health tried to be accounted for within the self-help group, though not so much among (even Turkish-origin) doctors. The self-help group, for example, recommended types of physical exercise that would be compatible with the common skeletal complaints. It was pointed out that gentle exercise could in fact not only help preventing complications of diabetes but also alleviate pain conditions. Hilal told me that this was quite counterintuitive to many of her patients as the “Turkish way” of handling any time of illness was mainly to rest. People were advised to walk whenever possible in their daily lives and possibly to take up an exercise such as swimming that had a low impact on their, often arthritic, joints. Hilal and the selfhelp group also gave and shared advice on welfare services or low-cost shopping.
Diabetes control as life management Diabetes, however, did not merely represent another challenge in such taxing lives but also an opportunity. By that I mean that diabetes control compromised an array of management tools that could provide structure and control in a fragmented and demanding social world. Diabetes was thus much talked about and paramount as it offered procedures of managing health and the everyday and a support network.
Chronic pain had often passed any manageability; conditions such as depression seemed very problematic to communicate and advice difficult to seek. Social problems such as xenophobia and deprivation were even more debilitating as beyond the reach or chance of a solution. This stood in stark contrast to diabetes care and its rhetoric of taking therapy in your own hands. The self-help group was all about finding people with the same problems who could share experiences and fates and give support. Through the self-help group and their “outreach work” in community information events, their members were even given the often novel opportunity to participate in community life (as will be addressed in more detail in the next section).
Above all, though, through diabetes self-management people could closely monitor their bodies, translate experience and suffering in communicable terms (as explored in Chapter 5.1), and apply regimes to their lives that had a real impact on their bodies. They could thus experience a powerful agency that was often taken from them in other regards. Such reasoning could be supported by having a closer look at those moments in my research participants’ lives when they got a break from their deprived, unfriendly and cold surroundings. For many their summer months in Turkey were an escape from the problematic everyday. Many also admitted that they tended to drop their diabetes control practices that had been so carefully implemented in Berlin (like Feyza’s sketchy glucose monitoring in Turkey as mentioned in Chapter 5.2).
The self-help group leader Yılmaz thus focused in the last sessions before the summer break on diabetes control during holiday in Turkey (field notes 16.06.2007).
Many group members shared with each other that they would always feel much better in Turkey, but some were concerned that their HbA1c was much worse after the summer break. Yılmaz explained that people might live generally healthier lives “back home” in Turkey, eating lots of fresh vegetables and fruit and being more physically active, socialising, visiting friends and family, going to the beach, swimming etc. Having said this, they were also leading much more undisciplined lives. Many managed very structured lives in Berlin, timing their meals and medication intake and counting and limiting the amount and kinds of food eaten.
During the summer months in Turkey, this discipline was given up, meals were eaten irregularly – often very late with family. Food was less divided in different meals throughout the day but often eaten as a big meal in the evening. Also, Yılmaz cautioned that fresh fruit may not actually be healthy but full of sugar and far too much fruit was eaten during holidays in Turkey and people forget to count how much is eaten. Yılmaz also held a community information event in early summer that featured the hidden sweet dangers of fruit, late evening eating, and feeling too relaxed to be vigilant (field notes 05.05.2007).
Yılmaz’s concern was that people’s blood glucose levels would rise in this time without being noticed. He thus urged people not to loosen diabetes control during their summer months in Turkey, and added that this is particularly important for those who plan to observe Ramadan in September. The reason for his concern was, of course, a positive one. Many people felt much better in Turkey – less stressed, happy about being reunited with family and friends, enjoying the nice climate – so they took less tablets or even failed to take any medication. Many perceived their trips to Turkey as a welcome getaway to a friendly and lush place of socialising and feasting that improved their health, although others were quite concerned about how this lifestyle challenged their diabetes control even if willing to keep up their regimes. Generally, the summer months require less managing – chronic pain and depression is eased in the company of family and sun, unemployment and financial problems are less pressing – or management responsibility (e.g. provision, food preparation) is altogether taken away during these trips as guest at family’s or friends’ homes. It is the taxing lives in Berlin that require life-management.
A good life?
Extending the gaze on their social lives at this point serves to address a commonly asked question I asked myself time and again and also heard from colleagues. The question is as to whether their disciplined, highly scrutinised lives are in fact considered “good” lives. Are my research participants’ lives – so limited and often remote from their desired lives, as represented in their lifestyles during Turkish summer months – corruptions of their “old” food habits, their “cultural” heritage or social worlds (if that is a less contested term)? This question seems to epitomise an assumption that seems to be always lurking in critical accounts of the political and moral economies of biomedical ideologies. If one would follow the logic of the literature that considers body disciplines as rooted in neo-liberalism (e.g. Ritenbaugh 1982), a disciplined life seems to be capitalist and therefore surely “bad” or ascetic and undesirable. In other words, critical medical anthropology often presumes that the biomedical ideology equates a healthy life with a good life – alongside notions of the good patient. In doing so, such anthropological debates often take on an equally normative and political viewpoint that regard “healthy living” agendas as the opposite of a “good life” in its more hedonistic, indulgent, unrepressed form. In contrast, Foucault’s (1990 ) notion of self-care explored how historically moral economies of healthy living as a raison d’être have equated “good” and “healthy” long before the rise of a capitalist ethic of disciplined bodies.
I would argue that, although the question of a good life might be indeed linked to severely altered lives of diabetes control, I believe that experiences of unemployment, deprivation or depression have long foregone any notion, or at least contemplation, of good living. On another level, my research participants indeed connected notions of a good life to their own experience and even diabetes control, as their relatively healthy diabetic bodies stood in opposition to those in the community that suffered from loss of limbs, vision or organ function (or the memory of family members that had suffered a similar fate). In this context, members of the self-help group did indeed share a certain moral notion of “looking after oneself”.
They could not understand that they met people during their information events who suffered from major diabetes complications and were offered the support of the selfhelp group yet declined their help. These people were often referred to as having themselves to blame to a certain degree but were also pitied for their suffering.
Accordingly, many in the self-help group told me that they felt sorry for their parents’ generation that did not have the same information they had and that they should make sure their own children would not grow up in ignorance. Most important to the question of “good life” is the perspective. While a philosophical or political debate on the quality of life may be an interesting one, it seems hardly relevant to those who do not have the privilege of a mere theoretical discourse. As Mol (2008: 30) put it powerfully in her plea for “patientism” that acknowledges that patients have different concerns than citizens: “By definition, citizens are not troubled by their bodies. But patients are.” Facing life with a severe chronic illness that puts a constant strain on one’s body may indeed raise fundamental questions of what life should be like, but also determines the scope of possible answers, especially if prior challenges are already given.
Summary This chapter, in conclusion, explored the daily practices of diabetes control as it is significant for both the experience of illness and sociality. Exploring how food was negotiated, amended, rationed and enjoyed, I borrow from de Certeau (1984) who conceptualised everyday practices of ordinary people as tactics that make the social more habitable. In doing so, I propose to frame my research participants’ idiosyncratic manoeuvring of self-management advice as “bio-tactics” of diabetes control. This is particularly important as my research participants’ practices of diabetes control were not only a highly complex and delicate affair but as their social lives were challenged by complexities and concerns beyond diabetes. I also suggest to consider the notion of tactics, as unlike Foucault’s notion of technologies of the self (1990 , 1997) such practices cannot be (entirely) understood as a moral enterprise, but were much more immediate, flexible and un-structured. “Unstructured” here seems the wrong terminology in light of the rigour that is advised and adopted by some of the research participants, yet by that I mean that such practices were not unified or shared but individually and situationally negotiated.
The members of the self-help group all had found their own way of handling their diabetes control.
Such individualised tactics were closely linked to their own social complexities that challenged diabetes control but could also be addressed through diabetes control in return. Other common health problems were skeletal and chronic pain disorders and depression. Adverse health added to and was influenced by social concerns such as deprivation, unemployment, challenged and changing social roles and xenophobia. These complex social worlds can, nonetheless, be seen through the lens of diabetes control. The self-help group addressed such challenges and gave specific advice, for example on physical exercise in regard to other pain disorders, or health management in the face of financial deprivation. On a broader level, the selfhelp group members learned about self-management as a tool to take problems into their own hands. This provided them with both a very practical social support system and with daily practices that enabled them to manoeuvre their often inhabitable social worlds with agency that could be experienced with their bodies. Such accounts of complex social lives are hardly surprising and only significant to my migrants with diabetes. All our lives are in many ways complex and all of us manage such complexities with a certain agency. Yet my research participants’ lives are certainly more testing than most of ours and diabetes management more complex, urgent and delicate than your everyday health manoeuvres. Within this context, the question if their highly managed lives were still perceived as “good lives” was not a concern of my research participants. However, their tactical skills were appreciated in contrast to the extreme diabetes complications of loss of limbs or vision or kidney failure other community members or family members had endured in the absence of such self-management. Also, practicing diabetes control allowed for participation in and renegotiation of lives that had been debilitated by many other challenges besides diabetes. The next section will have a closer look at such opportunities for social and communal participation.
SECTION 3 Politics of diabetes control: Beyond biosociality
The Turkish-German nursing day care centre I’m visiting today is in a poor area of Berlin. Stepping out of the U-Bahn station I pass a big Turkish supermarket. The day care centre is located within the grounds of an old hospital and I quickly find my way following the many signs directing me to the day care ward. The centre’s owner and manager Ayşe, an attractive woman in her late thirties with short dark hair, trendy clothes, make-up and eye-catching jewellery, suggests giving me a little tour through the ward.
There is an “activity room” in which two young female occupational therapists are doing crafts with some elderly ladies. The next room is the busiest – a large room with a TV, showing a Turkish channel on its highest volume, several sofas and armchairs, Turkish carpets, plants etc. It’s a comfy room and well used by many elderly people who sit together chatting, watching TV or reading Turkish newspapers. A nurse is serving up Turkish tea. The ward has also a “relaxation room” with four beds and more
armchairs for their nap after lunch, and several toilettes. Ayşe comments: