«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
7.2 Diabetes care as social participation
Recognising diabetes as a communal problem of and by Turkish Berliners provided the opportunity for communal participation. The self-help group cannot only be understood as representing and providing self-managed local Turkish-language diabetes care, but the group offered diverse opportunities that enabled more generally participation and sociality. Biosociality may have been created by diabetes but has not always diabetes at heart. This subchapter will explore how the self-help group as a “biosociality” provided the occasion for social gathering, new social relations and frequent social interaction. Such social activity was often experienced as separate from their illness encounter insofar as group interests such as fund raising had gained significance independent from personal interests of acquiring diabetes control practices. This is not to say, finally, that social participation had no impact on the lived experience of diabetes and its individual management. The group made successful personal diabetes control possible – as explored in Section 2 – but it could also have a negative effect on such individual illness experience when the group created conflict or tensions. Members also learned to demand what care they were entitled to, and to occupy a visible communal role. Rather than being involved in lobbying for patient rights or innovative diagnostic tools, however, their bio-activism concerned everyday needs of care.
Seeking sociality Here, I trace in greater detail how Turkish migrant diabetes care is a communal experience that offers the opportunity for social participation. Needless to say, any group belonging enables people to “get out of the house”, meet socially with likeminded people, share time and space, maybe memory and experience. Contrary to common views of the Turkish family as a household of several generations that grant each other compassion, company, material provision and child and elderly care, such experience seems to be indeed a “myth of the extended family” (“Mythos Großfamilie”), as it is often called in social care circles, and was not shared by any of my research participants. Cramped housing space would not allow for such sociality, and many young adults preferred to leave their parents’ households anyway to lead their own lives. Changing family structures and function – at least compared to how (temporally and spatially) distant family lives and traditions were envisioned – had become such a prominent concern that it sparked similar communal self-management responses than the diabetes self-help group. Turkish-speaking elderly care services had started to spring up as a new niche within the self-employed sector of local Turkish-origin businesses and were already in great competition at the time of my research.
Furthermore, some elderly migrants indeed succeeded in returning to their home country in retirement. Literature usually speaks of a mere “myth of return” (Anwar 1979) that alludes to an imagined, unrealistic future in the past homeland, but return is nonetheless realised at least by some. The members of the self-help group shared stories with me of lost friends and neighbours that had recently returned to Turkey in retirement and left empty social spaces. Social and healthcare workers also highlighted how the women’s roles as mothers become obsolete when their children leave home. This often coincided with retirement due to age or chronic illness, as mentioned before, and the loss of social interaction with colleagues or customers. Such stories varied, between those who experienced them and those who identified them as experiences of others; they were sometimes tales of abandonment or loneliness, lost tradition, values and companionship, sometimes stories of liberation, embracing lives after tiring housewife’s duties and double shifts at minimum wage, or after controlling spouses and demanding children. In any case, meeting the self-help group had offered the chance for new social interaction; for some it meant the desperately missed support in illness but for many it also simply presented the space for a chat and some company.
The social life of self-help The self-help group’s invested interest thus went beyond providing an alternative health education for diabetes management and a coping and support network. Core members of the group were not only engaged with the maintenance of their diabetic bodies but also with the maintenance of the group. During my field work, the group was not only keeping busy with weekly meetings and personal everyday practices of diabetes control but increasingly with their club life. The members were concerned with matters that related to the social life of the group, its activities, events, membership and finance.
Berlin’s competitive market of ambitious Turkish-origin businesspeople took its toll on the self-help group when their sponsors pulled out of previous arrangement. The group, for example, ran adverts for their big community information events in form of informative health programmes on local radio and TV.
The leader Yılmaz had known the responsible partners there for years and had arranged free “air-space”. Early during my research, Yılmaz showed me a letter from the radio station that would, from that moment, cease their sponsorship and charge the group for their time on air. Adding to this challenging new situation, their other media partner, the local Turkish-language TV station, found out about this and proceeded to demand payment themselves. Yılmaz reported this problem to his group and they devised a fundraising project in order to be able to pay for such events, advertisement and speakers. They decided to sell coffee, tea and sandwiches at the monthly big community events. Prior to such events the group then started to use some time of their gatherings for organisational purposes and debated in long discussions how and what kind of drinks and food should be sold, who would buy what kind of products, and who would be in charge of food preparation and sales. An important point of discussion was also how much group members would be able and willing to contribute towards the purchase of these products. Members were concerned that they, themselves, did not have much money but Yılmaz suggested getting everything at the discount supermarket and to my surprise most people in the group pledged a quite substantial amount of money for each fundraising. There were less pressing and yet similarly long debates on whether to sell cups of water or small bottles of water, brown or white plastic cups (the solid brown ones were better for coffee, the white ones cheaper and good enough for water), what kind of bread and sandwich fillings, and so on and so forth. I was always pencilled down for some task without much asking and in general every member of the group was expected to contribute in some way.
At the actual community events many members were more involved in these fundraising activities of selling food and drink, or organisational matters of preparing the venue or registering attendance, than actually attending the talks given on that day. At the first community information event at which the group engaged in fundraising the group members had gathered almost two hours prior to the event (field notes 31.03.2007). The two had put up two large banners, one in German, one in Turkish, saying: Turkish speaking self-help group Berlin. The women were sitting in a little alcove at the entrance of the main auditorium next to big commercial coffee machines and sandwich fillings of cheese, veggies and salads. Bread, coffee and tea were still missing and eagerly awaited. Yılmaz strolled outside for a cigarette while Defne and Sadık put up more posters – unfortunately of last month’s event, but those were left over – at the front door of town hall and lecture room. Yılmaz’s assistant began laying out leaflets for May’s event and the attendance lists in the little anteroom of the huge meeting room. Finally, Nare arrived – forty-five minutes late, to add to everybody’s nervousness – with the missing bread and Ahmet pulled up with his brand new estate car and his three daughters helped us carrying pallets of little water bottles, a big Turkish teapot and a huge thermos of coffee to the town hall. Back at the meeting room everybody was busy preparing food and drinks, a price list (water and sandwiches: 70 Cents, tea and coffee: 50 Cents) was put up and Yılmaz’s assistant was setting up tables and chairs for registration. Two teenage girls, the daughters of Yılmaz’s assistant, sat down at one table, and I made myself comfortable next to Ahmet’s wife Banu at the other table. At around 12.15 pm, people from the community started arriving. We welcomed them in and asked them to take a seat at our little table and give us their details for our attendance sheets. In the end, around seventy people had gathered – and Yılmaz was disappointed by the meagre turnout considering our fundraising efforts. “Must be the gorgeous weather”, we both marvelled.
All seemed to enjoy these events very much, working together, pulling off huge events, and raising some money for the group. Interestingly, not every self-help group member had diabetes themselves. Some were family members like Banu and her daughters, or Yılmaz’s assistant and her daughters. Others just enjoyed the social aspect of the group but were met with suspicion at some occasions. Some people appeared to have become very involved, planning new events well ahead, and spending much of their spare time on organisation. Many, it seemed to me, jumped at the opportunity to engage in such a social life, enjoying both company and accomplishment. The programme of such events then became a minor matter.
Granted, most of these talks were of a fairly basic introductory content with which most of the regular members were familiar anyway. Therefore some of the women preferred guarding their food stands with many cups of tea and chats, and focused their interest on talks on more seasonal or specialist topics, or on service changes due to the current health reform.
The burden of sociality Sociality, however, is not inevitably a positive experience. The group offered an environment for social engagement, company and support and was, thus, a positive experience for its members independent of their illness. At the same time, it had a direct and positive influence on their health as it provided the ideal assistance for individual diabetes management. Sadly, however, the social engagement with the group could also backfire. Some husbands showed a growing suspicion about the group and some women had to leave the group and therefore the support for their diabetes control. Group belonging and social interaction could create tensions and conflict and therefore challenge the social lives outside this group context and ultimately inhibit diabetes management, as Sevim’s story will illustrate (field notes 17.08.2007).
I visited Sevim late in summer to catch up with her after her long stay in Turkey. Chatting away, she added matter-of-factly that, quite possibly, she would not attend the self-help group meetings anymore. Her husband had told her not to go anymore and she was arguing with him quite a lot lately anyway. Sevim explained to me that he had become jealous about her involvement in the group. She enjoyed not only taking part in the meetings on a regular basis but had been quite active in their latest fundraising efforts of selling tea, coffee and sandwiches at the big community information events. She worked in catering and enjoyed selling coffee and providing the group with the huge coffee makers from work. She had also helped Yılmaz to buy water and other provisions before and her husband got angry that she would be alone with Yılmaz in a car, and spent so much time with him and the group. Her husband kept on asking her why she was going there, and she had also once got in trouble when introducing a friend to the group who also suffered from diabetes.
Their husbands talked about this, and the friend’s husband got equally upset about the situation. Subsequently, both women were in trouble and were told not to visit the group anymore. Sevim looked upset when she told me the news but also tried to explain: “Our husbands are different, you know”, she tried to shed light on the situation. “They don’t want their women to meet with other men – as if we would be approached by every man we know – and as if we were interested or couldn’t tell them off.” Sevim also added that her decision against the self-help group was only partly due to her husband. She also felt that attending the group, and actively helping with raising money, cost a lot of energy. Sevim had told me before that she was suffering from depression – which was not only related to her marital problems but many concerns such as her two unemployed teenage children. Feeling depressed, tired and sluggish made it hard to make it to the group on a regular basis. But really she seemed to like attending the group and felt sad about that new development. I asked her why her husband would not be interested in her diabetes at all and why he could not attend the meetings together with her but Sevim quickly shrugged off this idea.
“He would never come along. He is not interested.” Here, the group had become a burden for Sevim. Her engagement with the group added to her conflictual relationship with her husband, and the attendance itself had become difficult in her current life circumstances. Her group membership was not necessarily a positive experience and as she became too social with the group’s activities, it challenged her existing social relations. As these tensions could not be negotiated, Sevim decided to leave the group and therefore gave up both her social engagement and ties but also the practical and emotional support for her diabetes management. The social life of self-help group and the way it has to be negotiated with other social engagements could thus even have a negative effect on health and well-being and not necessarily always provide a positive supporting function.