Different Voices - Different Stories : Communication, identity and meaning among people with acquired brain damage

Abstract: The main purpose of the dissertation is to understand meaning-making practices used by people suffering from acquired brain damage with severe physical and communicative disabilities, in order to create and sustain their identity and personhood in relation to other people. The study emanates from the idea that identity and personhood, also in relation to disability, are created/sustained in ongoing interaction between people in everyday situations, and that the ability to narrate is central to such a creation of identity. Therefore, it is of particular interest to try to understand what communicative and storytelling abilities/possibilities people with severe acquired brain damage have in presenting their identity.The study is ethnographic and based upon a year-long field study of participant observations at a day centre for people with acquired brain damage. Gathered data consist of written field notes, informal interviews conducted with both participants and personnel and approximately 70 hours of video data.The study shows how an identity as ‘severely disabled’ is created in the co-created storytelling between participants and personnel and that this identity seems to mean that one is dependent upon others to get along in everyday life at least if one listens only to spoken stories. Yet the study also shows that there exist different opinions about what this identity as ‘severely disabled’ could mean that there is a wish among the participants to be able to present a desirable identity as “normal”, and that such an identity comes to mean to be independent and self-determined. Normality, however, must be understood in relation to surrounding society (and the grand cultural narratives that surround us). Thus the study shows that normality in relation to severe disabilities is almost impossible to achieve because normality in relation to illness/disease/body contains the hope of a cure or an improvement. The participants in this study, however, have all been labelled as incurable – there is no hope of such a cure or improvement. That, on the other hand, does not mean that the participants do not try to tell such stories anyway in their quest to achieve this desirable identity. However, in order to hear this story we need to listen to stories that usually remain untold. A palpable hierarchy between different modes of language use was identified, where verbal/spoken language is supreme, resulting in the disabled participants not being perceived as competent interactors/communicators due to their difficulties in using verbal communication. Hence their ways of creating/telling stories, through embodiment and enactment, are not recognised as valid ways to create/tell stories; this is discussed in relation to both practical implications for health care settings as well as for further narrative research.