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

Vol.11,No.1(2017)
Special issue: Internet use and disability

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.


Keywords:
aphasia; identity; stigma; online communication; disability
References

Baker, S. (2013). Conceptualising the use of Facebook in ethnographic research: As tool, as data and as context. Ethnography and Education, 8, 131-145. https://doi.org/10.1080/17457823.2013.792504

Barton, D. (2007). Literacy: An introduction to the ecology of written language (2nd ed.). Blackwell.

Behrns, I., Ahlsén, E., & Wengelin, Å. (2010). Aphasia and text writing. International Journal of Language & Communication Disorders, 45, 230-243. https://doi.org/10.3109/13682820902936425

Behrns, I., Hartelius, L., & Wengelin, Å. (2009). Aphasia and computerised writing aid supported treatment. Aphasiology, 23, 1276-1294. https://doi.org/10.1080/02687030802436892

Berger, P. L., & Luckmann, T. (1966). The social construction of reality: A treatise in the sociology of knowledge. London: Penguin Books Ltd.

Blom Johansson, M. (2012). Aphasia and communication in everyday life: Experiences of persons with aphasia, significant others, and speech-language pathologists [Doctoral dissertation]. Uppsala University. (Acta Universitatis Upsaliensis. Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 776.)

Bowker, N., & Tuffin, K. (2002). Disability discourses for online identities. Disability & Society, 17, 327-344. https://doi.org/10.1080/09687590220139883

Bowker, N., & Tuffin, K. (2003). Dicing with deception: People with disabilities' strategies for managing safety and identity online. Journal of Computer-Mediated Communication, 8(2). https://doi.org/10.1111/j.1083-6101.2003.tb00209.x

Brandenburg, C., Worrall, L., Rodriguez, A. D., & Copland, D. (2013). Mobile computing technology and aphasia: An integrated review of accessibility and potential uses. Aphasiology, 27, 444-461. https://doi.org/10.1080/02687038.2013.772293

Buckley, J. (1997). The invisible audience and the disembodied voice: Online teaching and the loss of body image. Computers and Composition, 14, 179-187. https://doi.org/10.1016/S8755-4615(97)90019-0

Caute, A., Cruice, M., Friede, A., Galliers, J., Dickinson, T., Green, R., & Woolf, C. (2016). Rekindling the love of books: A pilot project exploring whether e-readers help people to read again after a stroke. Aphasiology, 30, 290-319. https://doi.org/10.1080/02687038.2015.1052729

Caute, A., & Woolf, C. (2016). Using voice recognition software to improve communicative writing and social participation in an individual with severe acquired dysgraphia: An experimental single-case therapy study. Aphasiology, 30, 245-268. https://doi.org/10.1080/02687038.2015.1041095

Corsten, S., Konradi, J., Schimpf, E. J., Hardering, F., & Keilmann, A. (2013). Improving quality of life in aphasia—Evidence for the effectiveness of the biographic-narrative approach. Aphasiology, 28, 440-452. https://doi.org/10.1080/02687038.2013.843154

Cover, R. (2015). Digital Identities: Creating and Communicating the Online Self. London: Academic Press.

Creswell, J. W. (2014). Research design: Qualitative, quantitative, and mixed methods approaches (4th ed.). Thousand Oaks, Calif: Sage Publications.

de Beer, C., Carragher, M., van Nispen, K., de Ruiter, J. P., Hogrefe, K., & Rose, M. (2016). How much information do people with aphasia convey via gesture? American journal of speech-language pathology / American Speech-Language-Hearing Association.

Edwards, J. (2009). Language and identity: An introduction. Cambridge, UK: Cambridge University Press.

Fotiadou, D., Northcott, S., Chatzidaki, A., & Hilari, K. (2014). Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships? Aphasiology, 28, 1281-1300. https://doi.org/10.1080/02687038.2014.928664

Furnas, D. W., & Edmonds, L. A. (2014). The effect of computerised Verb Network Strengthening Treatment on lexical retrieval in aphasia. Aphasiology, 28, 401-420. https://doi.org/10.1080/02687038.2013.869304

Fusch, P. I., & Ness, L. R. (2015). Are we there yet? Data saturation in qualitative research. The Qualitative Report, 20, 1408-1416.

Ghidella, C., Murray, S., Smart, M., McKenna, K., & Worrall, L. (2005). Aphasia websites: An examination of their quality and communicative accessibility. Aphasiology, 19, 1134-1146. https://doi.org/10.1080/02687030500337871

Goffman, E. (1963). Stigma - notes on the management of spoiled identity. London: Penguin Books Ltd.

Hall, N., Boisvert, M., & Steele, R. (2013). Telepractice in the assessment and treatment of individuals with aphasia: A systematic review. International Journal of Telerehabilitation, 5(1), 27-38. https://doi.org/10.5195/IJT.2013.6119

Hamilton, I. (2000). Leva med stroke: Lära av erfarenheter [Living with stroke: Learning from experiences] Doctoral dissertation. Lund University Publications

Hinckley, J. J. (2006). Finding messages in bottles: Living successfully with stroke and aphasia. Topics in Stroke Rehabilitation, 13(1), 25-36. https://doi.org/https://doi.org/10.1310/FLJ3-04DQ-MG8W-89EU

Hodge, R., & Kress, G. (1988). Social semiotics. Cambridge: Polity Press.

Internet Foundation in Sweden. (2016). The Swedes and the internet 2016. Retrieved from http://soi2016.se

Kerr, J., Hilari, K., & Litosseliti, L. (2010). Information needs after stroke: What to include and how to structure it on a website. A qualitative study using focus groups and card sorting. Aphasiology, 24, 1170-1196. https://doi.org/10.1080/02687030903383738

Kozinets, R. V. (2015). Netnography: redefined (2nd ed.). London: SAGE.

Kress, G. R. (2003). Literacy in the new media age. London: Routledge.

Lincoln, Y., & Guba, E. (1985). Naturalistic inquiry. Newbury Park, CA: Sage Publications.

Markham, A. N., & Buchanan, E. (2012). Ethical decision-making and internet research, recommendations from the AoIR Ethics Working Committee (Version 2.0). Retrieved from http://aoir.org/reports/ethics2.pdf

Menger, F., Morris, J., & Salis, C. (2016). Aphasia in an Internet age: Wider perspectives on digital inclusion. Aphasiology, 30, 112-132. https://doi.org/10.1080/02687038.2015.1109050

Mortley, J., Wade, J., & Enderby, P. (2004). Superhighway to promoting a client‐therapist partnership? Using the Internet to deliver word‐retrieval computer therapy, monitored remotely with minimal speech and language therapy input. Aphasiology, 18, 193-211. https://doi.org/10.1080/02687030344000553

Moss, B., Parr, S., Byng, S., & Petheram, B. (2004). ‘Pick me up and not a down down, up up’: How are the identities of people with aphasia represented in aphasia, stroke and disability websites? Disability & Society, 19, 753-768. https://doi.org/10.1080/0968759042000284222

Norman, D. A. (1999). Affordance, conventions, and design. Interactions, 6(3), 38-43. https://doi.org/10.1145/301153.301168

Parr, S. (2007). Living with severe aphasia: Tracking social exclusion. Aphasiology, 21, 98-123. https://doi.org/10.1080/02687030600798337

Pedersen, P. M., Vinter, K., & Olsen, T. S. (2004). Aphasia after stroke: Type, severity and prognosis: The Copenhagen aphasia study. Cerebrovascular Diseases, 17, 35-43. https://doi.org/10.1159/000073896

Saltes, N. (2013). Disability, identity and disclosure in the online dating environment. Disability & Society, 28, 96-109. https://doi.org/10.1080/09687599.2012.695577

Sekine, K., & Rose, M. L. (2013). The relationship of aphasia type and gesture production in people with aphasia. American journal of speech-language pathology / American Speech-Language-Hearing Association, 22, 662-672. https://doi.org/10.1044/1058-0360(2013/12-0030)

Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19, 211-223. https://doi.org/10.1080/02687930444000697

Sjöqvist Nätterlund, B. (2010). A new life with aphasia: Everyday activities and social support. Scandinavian Journal of Occupational Therapy, 17, 117-129. https://doi.org/10.3109/11038120902814416

Thiel, L., Sage, K., & Conroy, P. (2015). Retraining writing for functional purposes: A review of the writing therapy literature. Aphasiology, 29, 423-441. https://doi.org/10.1080/02687038.2014.965059

Thompson, C., Bacon, A. M., & Auburn, T. (2015). Disabled or differently-enabled? Dyslexic identities in online forum postings. Disability & Society, 30, 1328-1344. https://doi.org/10.1080/09687599.2015.1093460

Thoreau, E. (2006). Ouch!: An examination of the self-representation of disabled people on the internet. Journal of Computer-Mediated Communication, 11, 442-468. https://doi.org/10.1111/j.1083-6101.2006.00021.x

Van Leeuwen, T. (2005). Introducing social semiotics. London: Routledge.

Van Leeuwen, T. (2009). Discourses of identity. Language Teaching, 42, 212-221. https://doi.org/10.1017/S0261444808005508

Wallace, S. J., Worrall, L., Rose, T., Le Dorze, G., Cruice, M., Isaksen, J., . . . Gauvreau, C. A. (2016). Which outcomes are most important to people with aphasia and their families? An international nominal group technique study framed within the ICF. Disability and Rehabilitation. Advance online publication. https://doi.org/10.1080/09638288.2016.1194899

Witzel, A., & Reiter, H. (2012). The problem-centred interview. London: SAGE.

World Medical Association. (1964). Declaration of Helsinki - Ethical principles for medical research involving human subjects. Retrieved from http://wma.net/en/30publications/10policies/b3/

Yasuda, K., Nemoto, T., Takenaka, K., Mitachi, M., & Kuwabara, K. (2007). Effectiveness of a vocabulary data file, encyclopaedia, and Internet homepages in a conversation‐support system for people with moderate‐to‐severe aphasia. Aphasiology, 21, 867-882. https://doi.org/10.1080/02687030600783024

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