«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Finally, the group members also assumed an authoritative role due to their expertise and engaged in the negotiation of “appropriate” knowledge – although this was not used in order to produce or guard knowledge. They may have shared the experiences of many Berliners living with diabetes who were automatically subsumed under a patient group that is deemed (or doomed?) challenged by their low socio-economic status and education levels and by their foreign native language.
Indeed their biographies were largely marked by hard labour, low household income and cramped living conditions in an environment that was not always welcoming or warm-hearted. And yet in becoming knowledgeable expert patients, they assume a position of power compared to those Turkish Berliners who are largely excluded from diabetes education. Sevim told me about her own way towards becoming a diabetes expert and she pointed out that those who did not undergo equally intensive tuition were easily spotted, especially as sharing diabetes experience among the more “expert” patients was a specialist’s affair. She could immediately identify the untrained, for example, by inquiring about one’s diabetes status. Among Sevim and her “diabetes colleagues” this is routinely done in terms of HbA1c-levels, the longterm measure for blood glucose levels.22 Asking new faces at the community information events about their HbA1c, Sevim explained to me, she would know: “If people answer 8 or 9 or something, they got it – but if they answer 200, then it’s clear they don’t know anything about HbA1c.” (Field notes 17.08.2007) Her own knowledge separates her from others, and towards these unknowledgeable others, she is assuming a position of power/knowledge (Foucault 1980).
4.2 Practising knowledge
By seeking their own way of accessing knowledge that was otherwise rationed and guarded in the clinical context, the members of the Turkish-language diabetes selfhelp group arrived at different, more advanced, understandings of diabetes control than their fellow Turkish Berliners with diabetes. Yet while the group as a whole represented a fairly unproblematic success story, individual narratives of members were hardly as straightforward. Personal journeys towards their present status in the group and in their illness were much more complicated. Knowledge acquired in the group was not necessarily actively sought in the beginning and much of what was learned only really made gradually sense through first attempts of implementing the learned into their everyday lives. Only with the lived experience of the practicality of knowledge, of tangible changes of their health, it was traced, negotiated and applied.
They then would utilise diabetes education’s generalised recommendations to their own ends and manoeuvring health advice in response to their individual experiences and social lives. This subchapter aims to trace such journeys of making sense of knowledge through its practicality in everyday life and thus ultimately making sense For a more detailed explanation see Chapter 5.
to everyday experience through knowledge. Knowledge is not an abstract entity but is learned within a social group, is made sense of and practiced in social lives.
Treating knowledge as action, more specifically “knowing as practice”, I follow Mol and Law (2004: 46). I will ask how practical knowledge is evaluated, and why and what kind of knowledge is perceived or made practical. The short answer is that the newly acquired knowledge has to work and make sense in their social words, or help to make sense of their (diabetes challenged) social lives.
Accessing but not appreciating knowledge?
A common public health riddle is that even when “appropriate” access to knowledge is offered, that means if services for example consider native language, gender issues or transport concerns, patients nonetheless often only reluctantly make use of such services. I met Kristina, a Master’s student who was researching for her dissertation, at a community diabetes event (from field notes 31.03.2007). The self-help group held these events on a regular basis in town halls as a sort of “community outreach” awareness raising and information event that should attract further members to their group. Kristina was writing her Master’s dissertation on ethno-marketing to migrant diabetes patients as part of a work placement with a major drug company. She did not seem aware of any ethical implications that her employment might raise, and justified her interest and expertise in terms of her own migrant background and type 1 diabetes. The starting point of her research was a paper that explained that, as part of a prevalence study (the inevitable Laube et al. 2001), newly diagnosed Turkish migrants with diabetes were offered follow up care in their native language. To the researchers’ amazement only a small percentage of study participants returned for care.
There were numerous tales of such recruitment problems. At the community event I chatted to one of its regular participants, a young Turkish-origin drug rep. He explained that according to city statistics there were about 203,000 Turks in Berlin and if diabetes statistics are applied to these numbers, about 20,000 people within this Turkish community lived with diabetes.
You could call that a market. [... But considering that] this event has been advertised on [local Turkish-language] radio all week it’s quite a disappointing turn-out if only seventy people have bothered to turn up. Even considering the nice weather.” Immediately the drug rep also offered an explanation that resonated with the
opinions of several of the – mostly Turkish-origin – doctors I had met:
“It’s quite typical, really. That’s the Turkish mentality – or southern mentality…this siesta mentality, not showing enthusiasm or interest in something, being sluggish and lazy. I mean, this self-help group is quite wellknown but – how many members are there?” [Field notes 31.03.2007] While access to knowledge about diabetes was generally well guarded and not exactly liberally offered to a heterogeneous patient population in Berlin, the selfhelp group aimed to provide diabetes education more generously at their community events and the weekly self-help group meetings. Yet people seemed to struggle to appreciate the offer. For example, almost all the research participants told me that it took them months from their first attendance of the self-help group or community events to become regulars.
All of them could recall their first contact with the group and how their lives finally transformed through getting a grip of their illness. These stories all have in common that it took some convincing and arm-twisting to meet the self-help group and turn first attendance into a regular habit. It was not so much the final access to knowledge through their first encounters with the group that changed their perspective on their illness, than the realisation of what a difference it was to approach illness management as a group and, ultimately, how much influence and control can be asserted on their illness. Abstract knowledge had to be acquired, understood, but most importantly, put into practice. Only after successfully achieving this conversion, the real benefit of being knowledgeable could be experienced. It was the very experience of enacting knowledge, for example experiencing improved eye sight, that acknowledged the utility of knowledge in their social lives. Mainly, of course, the crux lies in the matter of fact. Learning about diabetes requires time and dedication; it is complicated, complex, confusing and, frankly, boring. Sharing this task within a group that provide regular support helps. Finally, it takes equal dedication to make severe life choices to implement any of the learnt and experience its benefits. This is not an easy task as social lives are complex and involve more people than the individual that attempts such lifestyle changes. Only then knowledge receives its utility and thus beneficence to its owner.
Experiencing the practicality of knowledge My research participants were quite aware of what separated their lives with diabetes from those of so many in their “community”; it was “knowing diabetes” that gave them the head start out of a seeming marginal position of health(care) inequality.
They were not inert pupils of refined teaching programmes, above all, as such formalised and carefully drawn up strategies are rarely accordingly put into practice.
What they had understood was that knowledge about diabetes is more than abstract clinical terminology but that it is instrumental, practical and pragmatic. They had experienced, literally on their own bodies, in what way being knowledgeable can make a difference in their lives. Their eye sight improved, they felt less tired or restless, or tingling in hand or feet disappeared. They could share these experiences with the other group members and hear about experiences not made themselves.
Such appreciation of benefits also extended from immediate bodily experiences and the group context. Sevim once explained to me how essential it was to be knowledgeable about diabetes and learn about the causes, symptoms and management of diabetes and derived this insight from her own family history. Her mother had just passed away in 2000; it was her diabetes that caused her premature
You know, my mother didn’t know anything about diabetes. She just took the medication she was given, she didn’t really change her diet, had scales or anything. She never knew her diabetes control – and neither did I. Just imagine! How much I know and how much I could have helped her. But I didn’t know anything about diabetes then either. And I didn’t take her along to information events either.” [Field notes 17.05.2007] Rana, Sevim and their colleagues in the self-help group had reached a turning point in their illness experience. With the experience of the practicality and effectiveness of their newly acquired knowledge came also novel confidence and assertiveness. Revisiting the field note excerpts quoted in the introductory paragraph of this section, Rana proudly told me at our first meeting that she would now feel confident to request the expert help of a specialist – knowing her state health insurance would cover this service – if her family doctor did not grant her enough time. Several months later her treatment was switched from oral medication to insulin and I offered to assist her in gaining more information about insulin injection.
With a wave of a hand she reassured me that she had acquired a whole range of insulin brochures from her local pharmacy on the day of her treatment switch to bridge the time to an insulin education session scheduled for the following week upon her request. Being assertive in demanding access to knowledge was not only taught but regularly rehearsed and rewarded in self-help group meetings. Their weekly routine included discussing each other’s doctor’s notes and test results.
Requesting copies of such documents presented a daunting step for many but the backing and encouragement of the group transformed it into an ordinary practice and such initial bravery was rewarded by the communal making-sense of cryptic clinical records. Being knowledgeable had started to bring real benefits. This “empowerment” to be assertive will be further discussed in Chapter 7.2.
The benefit, here, is about gaining power in negotiating the clinical encounter, which is quite possibly not intended in notions of the expert patient that focuses more on the “care at home”. This instrumental quality of knowledge of challenging orthodox power relations of course lie at the heart of the paradox between clinical efforts to educate while at the same time severely rationing access to education and patients’ endeavours to negotiate education. While knowledge transfer is strategically employed in order to transform bodies into effective patients, authority over the ill body must be retained and this authority is legitimised as the source and interpreter of knowledge. The patient seems to seek knowledge exactly for the same purpose, in order to acquire a position of more equal negotiation (among experts), as Rana’s case shows. This was discussed in the previous subchapter;
important here is, that the acquisition of knowledge and subsequently a more powerful position came with the realisation that clinical encounters and self-care were rendered much more workable or manageable. Furthermore, the self-help group members experienced that knowledge helps to make their illness experience meaningful, to understand why their bodies were behaving in certain ways, why their well-being was interrupted or improved – in short, in order to be able to look at diabetes with a steady gaze.
Philosophy’s preoccupation with knowledge has generated a plethora of approaches to answer questions about what knowledge is and what our motivation to acquire it is. Habermas’ (1972 ) work Human Interest and Knowledge, for example, concerns itself with the drive for knowledge rather than knowledge itself.
German-language philosophers distinguish two words and thus two sets of ideas with knowledge: Wissen (knowledge itself, the content known) and Erkenntnis (insight, cognition, or the drive for knowledge) (e.g. Nietzsche 1969 ). Habermas would argue that it is social interest and experience that fuels a drive for knowledge (Erkenntnis) which then ultimately leads to the acquisition of knowledge. Foucault (2000: 13) also emphasises Nietzsche’s understanding of knowledge as “an event that falls under the category of activity”. In the case of Rana and her colleagues, they first had to acquire a certain level of knowledge, but it was the practical experience of the benefits of knowledge in its use that provided them with means to make sense of her illness experience – as Law (1994: 29) points out that in social theory and philosophy knowledge is treated “as a contexted product whose status depends upon its workability”. This initial understanding and identifying the practicality of what the group members had learned thereby produced an interest, a drive for acquiring more knowledge.