hh.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Signs of aphasia: Online identity and stigma management in post-stroke aphasia
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.ORCID iD: 0000-0002-0826-4735
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), The Wigforss Group.ORCID iD: 0000-0003-3084-9593
Department of Swedish, University of Gothenburg, Gothenburg, Sweden.
2017 (English)In: Cyberpsychology : Journal of Psychosocial Research on Cyberspace, ISSN 1802-7962, E-ISSN 1802-7962, Vol. 11, no 1Article in journal (Refereed) Published
Abstract [en]

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. © 2017, Masaryk University. All rights reserved.

Place, publisher, year, edition, pages
Brno: Masarykova Univerzita , 2017. Vol. 11, no 1
Keywords [en]
aphasia, identity, stigma, online communication, disability
Keywords [sv]
afasi, identitet, stigma, digitalt medierad kommunikation, funktionshinder
National Category
Communication Studies Social Sciences Interdisciplinary Other Social Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:hh:diva-34010DOI: 10.5817/CP2017-1-10ISI: 000404363200009Scopus ID: 2-s2.0-85020440623OAI: oai:DiVA.org:hh-34010DiVA, id: diva2:1111629
Available from: 2017-06-19 Created: 2017-06-19 Last updated: 2019-11-01Bibliographically approved
In thesis
1. Afasi och narrativt aktörskap – mediebilder, självberättelser och multimodala litteracitetspraktiker
Open this publication in new window or tab >>Afasi och narrativt aktörskap – mediebilder, självberättelser och multimodala litteracitetspraktiker
2019 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Afasi är en förvärvad språklig funktionsnedsättning som oftast orsakas av stroke. En person med afasi kan ha svårigheter med både talat och skriftligt språk, och både med produktion och förståelse. Därför medför afasi att individens förmåga och förutsättningar att skapa sin egen självberättelse, d.v.s. hens narrativa aktörskap (Baldwin, 2005), påverkas negativt. I en situation där hens narrativa aktörskap har begränsats behöver hen omförhandla sin identitet. För att göra det speglar hen sina självberättelser i olika sociala strukturer, som bland annat det samtida kommunikationslandskap som präglas av digital teknik men också attityder och normer – vilka till stor del skapas och upprätthålls av olika medier – gentemot personer med språkliga funktionsnedsättningar. Den här avhandlingen bygger på teorier om det ömsesidiga beroendet mellan aktörskap och sociala sturkturer, och syftar till att – genom att studera mediebilder av personer med afasi, självberättelser skapade av personer med afasi samt litteracitetspraktiker inom en grupp av personer med afasi – undersöka narrativt aktörskap hos personer med afasi, för att på så sätt bidra med ny kunskap om och ökad förståelse för hur det är att leva med afasii ett samhälle präglat av textbaserad och digitalt medierad kommunikation.Tre delstudier (A-C), vilka presenteras i fyra artiklar, har genomförts. Delstudie A syftade till att undersöka narrativtyper inom svenska tidningsartiklar om att leva med afasi. En majoritet av tidningsartiklarna innehöll berättelser där personen med afasi hade en låg grad av narrativt aktörskap och pratades omsnarare än med. I de få fall där personen kom till tals själv (eller assisterades av en ställföreträdande röst) präglades mediebilden av framgångssagor. Delstudie B syftade sedan till att undersöka självberättelser hos nio personer med afasi, vilka först intervjuades och sedan observerades i sociala medier. De tillämpade en stor variation av strategier för att kontrollera sitt stigma (Goffman, 1963)och för att hantera identitetsdilemman (Bamberg, 2011). De upplevde ett ökat narrativt aktörskap när de kommunicerade i sociala medier jämfört med i andra sammanhang, på grund av den multimodalitet som den digitala tekniken erbjuder. Slutligen syftade delstudie C till att studera litteracitespraktiker inom en grupp av personer med afasi som gick en afasilinje på en svensk folkhögskola. Gruppen studerades etnografiskt under tre veckor. Gruppens narrativa aktörskap påverkades i hög grad av att digital teknik gav tillgång till multimodala litteracitetspraktiker och av att gruppens medlemmar samskapade litteracitet genom att använda varandras styrkor. För att diskutera det sammanlagda resultatet från de tre delstudierna användes Bourdieus tankeverktyg lingvistiskt kapital, lingvistisk marknad och legitimt språk. Även om afasi innebär en förlust av språkliga förmågor, så kan personen ha kvar vissa lingvistiska kapital. När en lingvistisk marknad innehåller multimodalitet kan en person med afasi välja kommunikationsformer som passar hens kvarvarande förmågor. Alltså ökar hens narrativa aktörskap när hens kvarvarande lingvistiska kapital motsvarar det som anses vara legitimt språk inom en viss lingvistisk marknad. Så var fallet när deltagarna i delstudie B och C deltog i multimodala litteracitetspraktiker. Men när berättelser om personer med afasi publiceras i svenska tidningsartiklar porträtteras personerna med en låg grad av narrativt aktörskap. Mediebilden präglas dessutom av framgångssagor, vilket gör att när en person med afasi omformulerar sin sjävberättelse speglar hen dem i ”större” narrativ om lyckliga slut. Fortsatt forskning föreslås om mediebilder av personer med afasi i andra (mer multimodala) typer av medier, men också om bland annat hur lingvistiskt kapital hos personer med afasi samspelar med andra typer av socialt kapital som genus och klass.

Abstract [en]

Aphasia is an aquired language disability, most commonly caused by stroke. Since aphasia involves difficulties producing and/or understanding language, written as well as spoken, it entails a reduced ability and opportunity to author one’s own narrative. In the face of this reduced narrative agency (Baldwin, 2005), people who acquire aphasia need to renegotiate their identity. To do so they mirror their stories of self in social structures, including the contemporary communication landscape in which digital tools play an important part, but also norms and attitudes – strongly influenced by the media – towards people with language disabilities. Drawing on theories about the interplay between agency and social structures, this doctoral thesis aims to – by studying media representations of people with aphasia, stories of self authored by people with aphasia and literacy practices within a group of people with aphasia – examine narrative agency in people who live with aphasia in a society influenced by textual and digitally mediated communication.Three studies (A-C), presented in four articles, were conducted. Study A aimed at investigating narrative types in Swedish newspaper articles about living with aphasia. A majority of the newspapers contained stories in which the person with aphasia was talked aboutrather than talked to. In the few cases in which the person was given voice (or was assisted by a vicarious voice), the stories were mainly framed as successs stories. Study B then aimed at examining stories of self authored by nine individuals with aphasia who were interviewed and then observed in social media. They applied a variety of strategies to manage their stigma (Goffman, 1963)and to navigate identity dilemmas (Bamberg, 2011). In addition, the participants experienced a higher degree of narrative agency when communicating in social media than in other practices. The key to this enhanced narrative agency was the multimodality offered by the digital tools. Finally, study C aimed at describing literacy practices within a group of people with aphasia attending an aphasia course at a Swedish folk high school. Ethnographic data were collected during three weeks. The group’s narrative agency was strongly influenced by the use of digital screens to access multimodal literacy practices and by co-creation of literacy events between group members in which they used each other’s abilities. To discuss the overall findings from all three studies, Bourdieus thinking tools linguistic capital, linguistic markets and legitimate language (1991)were used. Although aphasia means partial language loss, some linguistic capitals may remain. When a linguistic market includes multiple modalities, a person with aphasia may chose ways of communication based on her remaining abilities. Thus, her narrative agency increases when her remaining linguistic capitals correspond to what is considered legitmate language within a certain linguistic market. That was the case when the participants in study B and C engaged in multimodal literacy practices. But when the stories of people with aphasia are told in Swedish newspapers, they are portrayed with a low degree of narrative agency. In addition, the newspaper stories are framed as success stories, meaning that when people with aphasia renegotiate their stories of self, they mirror their stories in grand narratives about happy endings. Further research is suggested about representations of people with aphasia in other media types (with a higher degree of multimodality), but also about how the linguistic capitals of people with aphasia interact with other forms of social capital such as gender and class.

Place, publisher, year, edition, pages
Halmstad: Halmstad University Press, 2019. p. 143
Series
Halmstad University Dissertations ; 62
Keywords
aphasia, disability, narrative agency, media representations, stories of self, social media, multimodality, literacy practices, Bourdieu, afasi, funktionshinder, narrativt aktörskap, mediebilder, självberättelser, sociala medier, multimodalitet, litteracitetspraktiker, Bourdieu
National Category
Health Sciences
Identifiers
urn:nbn:se:hh:diva-40824 (URN)978-91-88749-32-1 (ISBN)978-91-88749-33-8 (ISBN)
Public defence
2019-11-29, Baertlingsalen, Hus J, Kristian IV:s väg 3, 301 18, Halmstad, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2019-11-06 Created: 2019-11-01 Last updated: 2019-11-06Bibliographically approved

Open Access in DiVA

fulltext(492 kB)192 downloads
File information
File name FULLTEXT01.pdfFile size 492 kBChecksum SHA-512
01e9f7941b9ad603b504fb66cc590f7440f3bf44da1020e38928a470f2731d7e62ad7f8b44ab93b7ab2864c34b1ca47a137499f2beefe48a0e9ece06628636c4
Type fulltextMimetype application/pdf

Other links

Publisher's full textScopusFull Text

Authority records BETA

Taubner, HelenaHallén, Malin

Search in DiVA

By author/editor
Taubner, HelenaHallén, Malin
By organisation
The Wigforss Group
In the same journal
Cyberpsychology : Journal of Psychosocial Research on Cyberspace
Communication StudiesSocial Sciences InterdisciplinaryOther Social Sciences not elsewhere specified

Search outside of DiVA

GoogleGoogle Scholar
Total: 192 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 507 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf