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Article IV: For Better or for Worse


8.4 Article IV: For Better or for Worse


The fourth and last article performs a cultural analysis of the meeting between families involved in caregiving in cases of Huntington’s disease and the welfare system. Whereas the first three articles in various ways revolve around the first phases of the disease, this article investigates an aspect of the disease that arises when the mutated gene gives rise to

neurological symptoms, which put the afflicted individual and the family in need of assistance. The interaction between the affected families and the welfare system was in fact one of the most prominent themes in the

narratives. It was a subject that quickly caught my attention as I performed my interviews. When I started my fieldwork I was quite influenced by research that was inspired by Michel Foucault and his notion of power and the exercise of power within the modern society. However, as I encountered the topic of the welfare state within the narratives of the affected

individuals, the system-like aspects of the welfare state came forward as an important key to the experiences that the families told me about in the interviews. Such a system-like character of the welfare state led me to analyse this feature of Huntington’s disease, the family caregiving, in terms of a difference between the lifeworld of the affected families and

instrumental rationality employed by the welfare system.

The cultural analysis that I performed in this article shows that the interaction between the affected families and the welfare system is

and the action that guided the welfare system (Habermas, 1987). The affected families’ understanding about the caregiving arose as a

consequence of communicative action, whereas the actions of the welfare system were shaped by an instrumental legal discourse used in order to allocate resources within the society. Compared with other studies,

performed for example within the medical sciences, this study exemplifies how central features of modernity form a crucial part in the shaping of how families involved in family caregiving experience the interaction with the welfare system.

However, the article also shows how families involved in caregiving are able to overcome and reduce the dominance attained by the system. This occurs through a ‘Third space’ (Bhabha, 1994) that is characterized as a hybrid form of action, as an amalgamation of communicative and

instrumental action. The last part of the article has exemplified this aspect in the context of a local patient support group, whose activities constitute a movement between their own illness stories and the legal discourse used by the system. In this context, an empowering ‘Third space’ gives them the opportunity to act in a more instrumental manner towards the system. The emergence of this hybrid is linked with the cultural and social process of modernization and the separation between lifeworld and system. This shows how new forms of empowerment arise from these aspects of modernity. The investigation therefore points towards how the division between communicative and instrumental action constitutes, not an end-point in regard to cultural processes within modernity, but rather a end-point of departure from which hybrid forms of communications and action arise. As such, these hybrid forms represent an important cultural phenomenon to consider in our attempts to understand cultural and social change within modernity.

This article has been co-authored with three other scholars (Susanne Lundin and Tom O’Dell, both at the Department of Arts and Cultural Science at Lund University, and Åsa Petersén at the Department for Experimental Medical Science at Lund University). This co-authorship arose as a

consequence of the interdisciplinary research environment (the Bagadilico consortium) wherein this Ph.D.-project was conducted. The three scholars have also functioned as my supervisor (Lundin) and assistant supervisors (O’Dell and Petersén) during the Ph.D.-project, a composition that reflects the interdisciplinary approach of the project and the Bagadilico consortium as a whole. In order to achieve a close collaboration that transcended established boundaries between disciplines, the decision was made to let one of the articles within the thesis be co-authored by Hagen, Lundin, O’Dell and Petersén. To let this interdisciplinary collaboration revolve

around a co-authored article was seen as the best way to engage in a constructive and productive discussion. A co-authorship between the involved parties enabled the authors to a deeper discussion and subsequent understanding of similarities and differences that exist between ethnology and medicine in relation to theoretical and methodological aspects.

The division of labour in relation to the article is as follows.

The empirical material of the article was in its entirety obtained, transcribed and analysed by myself. The main theoretical framework of the article, which is based on Jürgen Habermas’ lifeworld and system perspective, was my contribution; in the initial drafts of the article, this theoretical

framework was paired with the empirical material. Lundin commented upon these earlier drafts; in conjunction with these comments, Lundin pointed out the importance of Arthur Frank’s perspective as a potential source in order to overcome initial difficulties with the article. I reworked the earlier drafts of the article, adding the theoretical combination of Habermas and Frank’s perspectives, in which illness narratives are seen as an example of communicative action. Petersén provided the relevant references for the section that presents Huntington’s disease; these references were mainly from medical review articles. Key articles within the medical research on Huntington’s disease were also provided by Petersén, for example the article that reported about the finding of the mutated gene in 1993 (Huntington’s disease collaborative research group, 1993). O’Dell’s contribution came at later stage in the work, mainly concerned with the later parts of the article. In these later parts of the article, a post-colonial perspective is used in order to understand and

explain exchanges between lifeworld and system. This perspective provided a new approach to the existing argument. O’Dell pointed out the relevance of this post-colonial aspect by commenting on the existing text, giving advice about relevant literature. He also made suggestions explicit by complementing the written text with written passages that cited Homi K.

Bhabha (Bhabha, 1994) and Robert Young (Young, 1995) (these passages can be found on p. 551 in the published version of the article. The later parts of the article commence on p. 550-553. See original article). As a consequence of O’Dell’s comments and written suggestions, I read the suggested literature and rewrote the written suggestions made by O’Dell, as well as augmenting these suggestions with the existing argument.

9. Concluding Thoughts: Body,

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