Signs of aphasia: Online identity and stigma management in post-stroke aphasia

Helena Taubner, Malin Hallén, Åsa Wengelin

Abstract

This study aimed to investigate online strategies for re-negotiating identity, in terms of stigma management, developed by working-age Swedish Internet users with post-stroke aphasia, i.e., acquired language impairment caused by brain injury. Interviews were conducted with nine individuals (aged 26-61, three men and six women) with post-stroke aphasia. In addition, a total of 1,581 screenshots of online posts (e.g., photos, videos, text, emoticons) created by the same participants were collected. Drawing on social semiotics (specifically the three dimensions of online communication mentioned by Kress (2003), i.e., composition, content and context) and Goffman’s theory of stigma (1963, specifically the concepts of stigma management and passing), qualitative thematic analysis was performed. Regarding composition, three themes emerged: Relying on others or technology, Beyond speaking and writing, and Controlling speed and timing. The participants rarely posted content about aphasia, but some of them used the Internet to raise awareness. Different online contexts had different meaning to the participants in terms of identity. Being open about the aphasia in one forum did not imply the same behaviour in another forum (e.g., dating sites). For the participants to pass (Goffman, 1963), should they want to, they needed to control all three dimensions. If the context or the composition revealed the stigma, controlling the content was not enough to pass. The multimodality of the Internet enabled the participants to manage their stigma in a variety of ways and to choose whether to be perceived as persons with aphasia or not.

Bibliographic citation

Taubner, H., Hallén, M., & Wengelin, Å. (2017). Signs of aphasia: Online identity and stigma management in post-stroke aphasia. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 11(1), article 10. doi:http://dx.doi.org/10.5817/CP2017-1-10

Keywords

aphasia; identity; stigma; online communication; disability

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https://doi.org/10.5817/CP2017-1-10