chapter  3
16 Pages

Stories of self when living with aphasia in a digitalized society

WithHelena Taubner, Malin Hallén, Åsa Wengelin

We are our stories of self. The stories we tell about ourselves is the interface between us and others, as we keep our “narratives going”. What happens, then, if we lose our language due to a brain injury? In this chapter, stories of people with post-stroke aphasia are related and analysed. They have lost their linguistic abilities overnight, entailing a need of identity re-negotiation. However, their key to this re-negotiation, i.e. language, has been reduced “when most needed”. In a highly digitalized society like Sweden, identity is “always online” and online literacy practices are central to everyday communication. Thus, the stories of self told by people living in Sweden – including people with aphasia – include online aspects. The aim of this chapter is, therefore, to explore stories of self of nine Swedish individuals (6 women and 3 men, aged 24–56 at onset) with aphasia, and to analyse the role played by multimodal online literacy practices when telling these stories. The participants were interviewed and observed online. The interviews were based on the PCI methodology which aims to generate storytelling and emphasises the participant’s right to be understood. The online observations were inspired by netnography and included the social media platforms in which the participants were active. Findings show that the participants recurrently negotiated what to include in their stories of self, and that they constantly navigated identity dilemmas. They constructed self-identities as both the same as they were pre-stroke and changed. They were both the same and different in relation to others, i.e. both “disabled” and “normal”. They displayed both dependency and agency. Because of the multimodality, the online literacy practices provided an opportunity for the participants to express their stories of self in a more elaborate way than in offline settings. Thus, online multimodality increased the participants’ control of their identity re-negotiation.