Author:Ingrid Metzler (Vienna University)
Paper short abstract:
This paper explores how narrative of hope sustained by the "regime of promising" surrounding stem cell research in Parkinson's disease (PD) enters into conversation or conflict with other narratives of hope in the field of PD in Germany.
Paper long abstract:
Narratives of hope shape contemporary engagements with Parkinson's disease (PD). On the one hand, a "biomedical narrative of hope" promises that biomedical research in the present will contribute to transform the currently treatable yet uncurable disease into a curable one in the future. On the other hand, a more "individual narrative of hope" encourage patients to influence the course of PD through practices of self-care and positive thinking. This article asks how these two narratives of enter into conversation or conflict. It bases its argument on an analysis of data from 13 focus groups, in which PD patients and their relatives were asked to share their thoughts and emotions on two clinical trials for advanced therapies for PD. Three "modes of being" were distilled from this body of data: a mode as "users on stand by", a "distanced" mode and a mode as "experimental pioneer". Each of these modes was characterized by a different understanding of PD, the course of PD, and one's biosocial self. Both narratives of hope were important in these modes of being. Yet, while the biomedical narrative of hope was deemed an important "dream of the future", which participants had to passively support without having to make it their own, the psychological narrative of hope took an interpellative form: having PD implied the need to keep a positive attitude.
Futures in the making and re-making