Whose Story is it Anyway?: Following Everyday Accounts of Living with Dementia on Social Media

Abstract

Increased interest in interdisciplinary approaches and the emergence of new media narratives have led to widespread challenges to prototypical narratives of the self derived largely from studies of literary fiction. For example, Hyvarinen et al. set out to challenge what they call the paradigm in narrative studies, contesting the view that coherence is essential for the telling of good and healthy life (l). However, it is the focus on the told on social media that has perhaps brought about the most sustained reevaluation of what counts as a life story, and what counts as being worthy of detailed scholarly analysis. In particular, in her study of blogs and Facebook updates, Ruth Page (Stories and Social Media) argues that the episodic narratives found on electronic media do not fall readily into the traditional categories provided by narratologists. Similarly, Georgakopolou's focus on interactions and identity formation in the narratives found on social media demonstrate how retrospection and teleology have given way to breaking news and anticipation, and to fluidity and hybridity. This article will focus on an analysis of everyday accounts of living with dementia found on social media, more specifically Twitter, a microblogging platform which restricts users to posts of no more than characters. The discussion aims to address specific issues of control raised by these narratives, both in terms of the ownership and distribution of the stories, and in terms of the sense of self these accounts may provide. The article will also reflect on the specific methodological and ethical issues raised in analysing the small stories found on social media. (1) Storytelling, and especially the invitation to tell your is key to motivating and sustaining participation on social media. Recent studies (e.g., Marwick) have moved beyond the cyber-utopianism of early accounts to consider whether social media in fact exploits the emotional labour of users and facilitates only a crude kind of self-branding to pander to the needs of advertisers. Nevertheless, social media platforms have been celebrated for providing a means for the expression of vernacular creativity (Burgess) and for providing users with ways to chronicle their existence (Gauntlett) and to experience new kinds of identity play (Turkle). The low barriers to expression and participation (Jenkins) in terms of technical or other expertise have made it possible for millions of users to take up the invitation to start telling your story (Twitter mission statement, 2015), and to share the minutiae of their daily routines in (near) real time. The ephemerality and nowness of social media storytelling (discussed by Page, Stories and Social Media; Thomas, 140 Characters) must be understood in the context of the emergence of a so-called attention economy where display and the amplification of everyday experiences is paramount. But it may also be argued to allow for ways of conceiving the self and identity as a performance or a project (Giddens) which is ongoing, fluid, and reactive. Social media users' lifestreaming (Marwick 208) of their daily routines combines both self-quantification in the sense of recording even the most inconsequential of life events and an opening out of those events for comment and response by others. It has been argued to produce a type of funhouse mirror of a life, and an ambient awareness of others' lives for an audience that is constantly surveilling but also connecting with each other (Marwick 211, 214). Thus along with potentially new conceptions of the self, we may also find new kinds of sociality emerging, as well as new ways of marking key life events, determined in part by specific features of platform interfaces, for example Facebook's Timeline feature. Moreover, the idea of the networked self allows for discontinuity as well as continuity in how the self is narrated, shared, and taken up across different platforms, whereas the idea of the user as curator points to the way in which users may rely on content produced by others in their shaping of the version of their selves they want to present in differently defined contexts. …