«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Various knowledges What makes knowledge valuable was recognised in the experience of how knowledge plays out in the everyday and makes sense in their social worlds. This leaves the question of what kind of knowledge was evaluated as practical or efficacious. Exploring various knowledges invites several disjunctions. In this chapter, knowledge so far refers to clinical information on diabetes, textbook definitions and current therapeutic standards. Diabetes education as self-taught in the self-help group largely followed such clinical standards, often uncritical.
Nonetheless, such knowledge was scrutinised for its practicality.
Central to this practicality – and in opposition to standard clinical knowledge – was “Turkish” information. By that I mean information that concerned their social lives that often varied from the realities their doctor’s orders assumed. The self-help group members, for example, were given a so-called “carbohydrate conversion table”, with which one can tell from a long list how much pasta would equal how many potatoes. Unlike those exchange tables given out by doctors or in regular education sessions, the self-help group’s table includes a long list of Turkish foods such as bulgur (dried crushed wheat), pirinç (rice), pilav (cooked, prepared rice), nohut (chickpeas), mercimek (lentils) or bakla (broad bean). Dr. Zahedi’s education session, to my surprise, only provided its attendees with German brochures, nonetheless Turkish diets – and more importantly various regional differences – were a central feature of such Turkish-language education sessions. Many of Zahedi’s Turkish-origin colleagues showed me their course material that tried to accommodate their Turkish clientele by featuring photos of Turkish meals or food products.
“Turkish-specific” knowledge, which is altogether absent from any German mainstream public health information, also shaped many of the big community information events that the self-help group hosted on a regular basis. In September fasting during Ramadan was discussed, in early summer the dangers of walking barefoot on the beach, the effect of sweating on glucose-levels, and how to store insulin in the soaring Turkish summer heat. Other seasonal advice was, for example, on the kinds of food people would be likely to eat during their summer stay in Turkey, especially identifying the fructose content of typical summer fruit.
Moreover, community events tried to convey information about the German social system. The patient consultant Hilal regularly held talks on German bureaucratic procedures of applying for benefits, services and health insurance entitlements. She also assisted Yılmaz to keep the self-help group up to date with latest healthcare reforms and procedural changes. Topical knowledge about citizen’s rights and, above all, financial entitlements was considered as valuable to the group as information about diabetes and could usually not be attained through clinical-based patient education.23 Hilal also believed strongly that patients need to learn how to be demanding and critical, something quite alien, in her opinion, to her mother’s generation of low-educated, hard-working modest people. That is not to say that at her work she frequently met patients who requested, for example, a level of care that the German social system did not attend to. In any case it was the fragmented understanding of the social system they were living in that impacted on her patients’ For a discussion on learning about citizen rights and entitlements see Chapter 7.
well-being, something that could be remedied with knowledge transfer and the support to apply it.
In contrast to clinical knowledge, there is lay knowledge, for example on nutrition and cooking. Family doctors would omit such competence and only occasionally appreciate the habit of many families to eat sit-down, cooked-fromscratch menus. Lay knowledge was mainly understood as negative information, gathered from family, friends and neighbours, for example on medication, that is then requested during consultations although inappropriate for this particular patient.
Further examples for lay beliefs as education gaps that were frequently mentioned were notions of “chubby is healthy” or “resting helps recuperation”. Lay knowledge in accordance to clinical recommendations, on the other hand, for example extensive cooking skills, were duly unremarked upon by most doctors. Another example is the doctor’s widely shared assumption that their patients lacked any kind of clinical knowledge of their bodies, when these originally rural, farm-working people probably had some grasp on (their animals’) organs. Firmly situated in the medical realm, these doctors followed its distinction of knowledge and lay beliefs. Pelto and Pelto (1997) argue that medical anthropologists struggle time and again with health professionals’ stern conceptualisation of regarding knowledge as what are, to them, “objective “, evidence-based, scientific facts and regard them as in opposition to “subjective”, untenable lay beliefs. A dichotomy of lay belief versus (expert) knowledge, however, is increasingly a problematic one, even within the medical realm. Today, evidence-based medicine, the practice of large evidence reviews, is increasingly important in clinical practice and challenges doctors’ knowledge as merely experiential (cf. Ecks 2008).
That said, not all health professionals regarded lay or experiential knowledge as unhelpful. Several diabetes consultants told me that key to their work was drawing on their patients’ pre-existing knowledge. These diabetes consultants were nutritionists or practice nurses, often young women, who appreciated their (female and older) patients’ wealth of knowledge particularly on food and cooking. They understood that information that was given with the patients’ often elaborate knowledge on food products and food preparation in mind was easily adopted and integrated into pre-existing food practices. This was also the key to the “peereducation” principle of the self-help group which was a valued platform for such knowledge exchange.
Another set of knowledge that remained at the fringes of mainstream clinical teaching was, in true self-help group fashion, latest research findings and sometimes unorthodox information. Yılmaz made a real effort to gather such information and present new and current issues. Members of the self-help group appreciated his resourcefulness, “he surfs the Internet for us” several people told me proudly, translating brochures and news items for them. The group discussed heatedly potential glucose-lowering effects of grapefruit or cinnamon, although Yılmaz preferred debates on less obscure news items. A central discussion during my stay at the self-help group was the news about high cholesterol levels in some margarines. I spent much time with Rana and was frequently spoiled by her fantastic cooking. She told me that she consciously used olive oil in her Aegean cooking and avoided too much use of butter (fat) as it is more common in the Eastern Anatolian region. She was surprised, however, when Yılmaz told the group that scientists have found out that some margarine can elevate bad cholesterol levels more than butter. Such margarines have even been banned in some European countries such as Sweden.
“[Yılmaz] just knows things you haven’t heard of yet. That margarine can be worse than butter! Who knew?! Already in [my hometown] in the 60s everybody started buying margarine. Although – in our family we only ate olive oil. We had olive trees in our garden. I still have margarine in the fridge – just bought it last week – but now I don’t want to open it.” [Field notes 13.03.2007] Well aware about the rapid changes within scientific knowledge, Rana liked telling the following story. Both she and her husband suffered from bad stomach aches in the beginning of their life in Germany and went to see a doctor about it. The doctor’s advice in the 1960s was that it must be the olive oil [sic] and suggested not to eat it anymore. As Rana commented on medicine’s own struggle with evolving knowledge, food is indeed a complex body of knowledge that never seems to provide easy guidelines and frequent subject of news and advice items. So would Yılmaz end any debates on fats with the caution that olive oil should not get too hot and instead use sunflower oil for frying, as he had recently read in some brochure.
Knowledgeable bodies There was, however, another set of knowledge, the self-help group members had begun to draw on. The self-help group members had lived with their diabetic bodies for many years and had experienced how their body was “doing diabetes control”, their glucose levels reacting to certain diets, activities, stress. This accumulated tacit embodied knowledge could be drawn upon with any new technique or skill acquired in the process of learning formally about their illness. “Knowledgeable” self-help group members would merge clinical knowledge with practical knowledge, for example on food and cooking, and embodied knowledge of “feeling” its impact on their body and thus become successful tacticians of diabetes control.
Diabetes knowledge therefore can be embodied, and diabetic bodies can be knowledgeable. Mol and Law (2004: 50) describe how bodies act and are enacted.
Exploring hypoglycaemia (dangerously low blood sugar levels), Mol and Law (2004) suggest not to consider it just as a state but a practice: avoiding, measuring, countering – and feeling, as bodies can be themselves knowledgeable of approaching risk. While the body has not yet been explicitly mentioned in this chapter, diabetes knowledge is, of course, about the body. Earlier I argued that diabetes knowledge is very practical. A very important indicator for practicality is when this is felt with or in the body. When feeling how a change in diet alleviates diabetes complications (for example regaining sensation in feet and hands), dietary restrictions start making sense. Such “feeling diabetes” is another type of knowledge patients begin to gain.
Notions of embodied knowledge, thus, also resonate with philosophical approaches to knowledge such as Habermas’ (1968) conceptualisation that knowledge stems from social experience, from habit and exercise. Accordingly, knowledge is not about abstract, intangible truism, but is closely tied into social life and lived experience. In his work on self-care Foucault (1990 ) also suggests that individual practice produces knowledge instead of the other way round. Bryan Turner (1992), following Foucault (1991 ), postulates the recognition of the body in social action. Instead of a Cartesian separation of body and mind in the social actor, Turner proposes to consider embodied “practicality and knowledgeability” (Turner 1992: 170). Finally, Mol and Law (2004: 46) postulate that “knowing is a practice”, and suggest that exploring “knowledge about a bodywe-do” should take priority over “knowledge about a body-we-have”.
Discussion: on practical knowledge and social learning To sum up the whole of Chapter 4, patient education in particular and knowledge more generally was discussed as it stands central to patient-led diabetes control.
Diabetes knowledge is held and withheld, shaped and evaluated. Foucault’s notion of power/knowledge (1980) sees knowledge as relations and power as relations, closely intertwined with each other. Exploring diabetes patient education in Berlin, Turkish migrant patients were largely subsumed as an uneducated and challenged group.
Assuming such marginal position allowed for both more specific provision, in the form of native language education, but also for worse provision, as education content was often actively “dumbed down” by local health professionals. Diabetes education – rather than being clinically standardised – contains a plurality of knowledge, often along a trajectory from simplified to complex knowledge according to perceived patient ability, local social context and resource constraint. Even within the self-help group power relations shaped how knowledge was negotiated.
However, education may always involve a certain subordination on behalf of the student, and there is more to knowledge acquisition than its interlocution with power. Insofar as the self-help group actively sought knowledge whose availability was limited, invites Foucault’s notion of “technologies of the self” (1990). The selfhelp group engaged in the practical exercise of making knowledge available and comprehensible. In doing so they had actively become “expert patients” in its notion of “empowerment” and “patient-centred care” as it has been envisioned in modern biomedical healthcare (Lupton 1995, Nettleton 1997). Yet, the “expert patient” is a problematic term in its normative moral economy of what constitutes a “good”, compliant patient and in its locality and sociality. There are patient groups such as my research participants that were not necessarily in mind for such a role as their healthcare providers made clear.
Nonetheless, despite belonging to a deemed disadvantaged group of patients (demographically speaking, in terms of birth place, education levels, socio-economic status), many self-help group members considered themselves indeed experts of their diabetes and showed understandings of their illness and experience that seemed envisioned in glossy state-of-the-art patient education guidelines. While diabetes education mostly conveys clinical, and arguably abstract, knowledge, this is not to say that it only receives significance within abstract concepts of learning or epistemology. Instead, the self-help group’s success can be understood in their approach to knowledge. Knowledge was placed in the social, as Etienne Wenger (1998: 3), in his study of communities of learning, situated “learning in its context of lived experience of participation in the world”. Learning happened within a group context and information was understood and rehearsed with the support of the group.
Then, knowledge was put into practice – again with the support of the group.