Managing disability and enjoying life: How we reframe dementia through personal narratives

Rhetoric referring to Alzheimer's disease as ‘the never ending funeral’ or ‘a slow unraveling of the self’ implies that diagnosed individuals and their families alike are victims of a dreaded disease. Data gathered from web-based surveys with twenty-seven individuals with dementia demonstrate how some persons living with the condition actively negotiate their everyday lives to counter such pejorative assumptions. Grounded theory methods were used to consolidate textual data into overarching themes. Findings depict persons with dementia who do not experience an inherent ‘loss of self’ but rather consciously strive to incorporate a ‘manageable disability’ into their existing identities. Respondents give numerous examples of how they can and do live with dementia. These data portray an empowered identity that suggests the need for a reframing of dementia to challenge the normative victim-orientation and the social disadvantages of such biomedical reductionism.     

In search of disability rights: citizenship and Turkish disability organizations

Criticizing modern citizenship’s emphasis on the ‘nation’ as a homogeneous body of citizens, recent citizenship conceptions draw attention to diverse group identities and their differentiated rights‐claims. By way of scrutinizing different disability organizations, this paper analyzes the struggles by people with disabilities in Turkey and examines whether these could be perceived as claims to new forms of citizenship. It argues that due to the institutional, political, cultural and historical specificities of Turkey, most non‐governmental organizations maintain relations of patronage with state actors. Far from initiating a rights‐based discourse, their activities cannot be perceived within recent citizenship frameworks. Yet, parallel to Turkey’s accession process to the EU and technological developments, alternative forms of organizing started emerging at the virtual level. These are the harbingers of a relatively more rights‐based discourse.     

Fatness as a disability: questions of personal and group identity

Both fat people and disabled people share common barriers to full societal participation and acceptance. While there has been a substantial amount of literature relating to these two groups as separate entities, there is a lack of contemporary research that investigates the relationship between fat and disability identity formation. The purpose of this qualitative study was to engage in a dialogue with fat individuals and explore the construction of their identities – whether or not they identified with having a disability and, if so, whether or not they viewed their fatness as a disability. Interviews with a sample size of seven participants who self‐identified as ‘fat’ revealed an unwillingness to adopt a disability identity based on their fatness.     

Older adults' narratives about a flood disaster: Resilience, coherence, and personal identity

Older adults are a vulnerable group in a disaster and are more at risk of adverse effects as a result. This paper draws on the use of narrative theory in health and gerontology studies to examine how a disruptive disaster was storied. Narrative interviews were conducted with nine older adults aged over 65 years who had recently experienced a flood disaster. The participants' narratives about the disruptive event were integrated with past personal events that spanned more than seven decades. The disaster became a reference point for previous challenging experiences, which created biographical continuity, coherence and order over time. Furthermore, the disaster stories were about biography and identity, and showed how older adults made sense of the flood from a life-course perspective. The use of narrative approaches provides an insight into how the flood disaster was experienced, and reveals how four older adults storied their experiences of a significant life challenge.     

The voice of lived experience: mobile video narratives in the courtroom

Video is overtaking other modes of communication in new media. Whether from a smartphone, a wearable device or surveillance camera, video is being made, stored and shared in unprecedented ways. Once the exclusive territory of institutions becomes large enough to finance video production and its storytelling power, technology’s contemporary democratization is changing the landscape of visual narrative. This project explores the discursive nature of video based on a case study of a courtroom trial that was both about the legality of filming crime scenes and the evidentiary use of videos from crime scenes. This unique intersection of surveillance, counter-surveillance, word and image, body and text allows for deeper understanding of how video serves human purposes. Based on ethnographic fieldwork and textual analysis, we build upon Walter Fisher’s narrative paradigm by identifying significant attributes of unedited, evidentiary video that distinguish it from other forms of visual documentation. Raw video’s hard-edged timeline presents narrative coherence in a way that resists discursive contextualization. This has important implications for public policy and citizen-generated video evidence.     

Choices and rights: eugenics, genetics and disability equality

Pre-natal screening is a highly contentious ethical and political issue. The paper discusses aspects of the debate, and focuses on the context in which reproductive decisions are taken and the lack of a disabled voice in genetic policy. Eugenic aspects of the practice of genetics, particularly surrounding the role of professionals and the notion of consent, are explored. The paper concludes with recommendations on a disability equality approach to genetics and obstetrics.     

Acquired disability in young women: a challenge for identity?

ABSTRACT

Youth can be described as a transitional phase for the formation of identity. As young people often hold taken-for-granted assumptions regarding their future, disability may pose a challenge for their identity development. This paper analyses the retrospectively written autobiographical narratives by three young women who became disabled during their adolescence. The structure of the narratives is approached with sociologist Arthur Frank’s typology of illness narratives and identity through data-driven content analysis. This paper suggests that chaotic stories may hinder the development of identity, as the identity is described as delayed, hidden, silenced or neglected.     

Interwoven migration narratives: identity and social representations in the Lusophone world

This article provides an exploratory analysis of the life narratives of migrants in the Portuguese-speaking world. By interweaving the life experiences of eight participants in three thematic clusters – ‘shared past’, language and sense of community – we propose a critique of the deep-seated idea of the Lusophone space as a community constructed by the harmonious conviviality of different countries and people. Drawing on contributions from cultural studies, social psychology, anthropology and sociology, we first aim to give voice to the human subjects who embark on migrations and then to understand how the engendered process of identity construction is framed by their social world, simultaneously reframing it. Thus, we aim at shedding light on the ways in which aspects of the political discourses on Lusophony are used (and are instrumental) to the migrants’ identity narrative (re)construction.     

Social media time,identity narratives and the construction of political biographies

ABSTRACT

The question of identity narrative is at the core of the interaction between social movements and temporalities. In this paper, we draw on long-term qualitative research amongst activists engaged in Italian social movements and argue that identity narratives are often the result of a complex mnemonic, contradictory and open-ended process that spans through a life-time of engagement with multiple collectives. We then question whether the use of social media reshape these dynamics. The analysis shows that the construction of identity narratives on social media tends to take place with knowledge of the complexity and overlaps that characterise these processes online. Nevertheless, the temporality of social media, based on immediacy, archival and predictive time, challenges the unpredictable, contradictory, and open-ended nature of political identity construction offline. The need to escape the hegemonic temporalities of social media poses new challenges to activists in their creative agency.