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Taubner, H., Hallén, M. & Wengelin, Å. (2020). Still the same? – Self-identity dilemmas when living with post-stroke aphasia in a digitalised society. Aphasiology
Open this publication in new window or tab >>Still the same? – Self-identity dilemmas when living with post-stroke aphasia in a digitalised society
2020 (English)In: Aphasiology, ISSN 0268-7038, E-ISSN 1464-5041Article in journal (Refereed) Epub ahead of print
Abstract [en]

Background: Self-identity construction through “stories of self” is highly relevant for people with aphasia, not only because the onset entails a “biographical disruption” but also since their ability to keep their “stories of self” going is reduced. Three dilemmas (constancy/change, sameness/difference and agency/dependency) are known to be central to identity. In a digitalised society like Sweden, self-identity construction, including the navigation of these dilemmas, takes place both online and offline. Nevertheless, research combining aphasia, identity and online issues is scarce.

Aim: This qualitative study aims, in terms identity dilemmas, to investigate self-identity construction in working-age persons living with post-stroke aphasia in a digitalised society (i.e. Sweden). Are the dilemmas relevant to the participants, and if so, how do they navigate them online and offline?

Methods and Procedures: Nine individuals (three men and six women, aged 24–54 at onset) with mild or moderate post-stroke aphasia participated. The data comprises nine individual audio-recorded interviews and 1,581 screenshots from online observations. Qualitative analyses were performed (vertically and horizontally), combining inductive and deductive approaches.

Outcomes and Results: All three dilemmas are relevant to the participants. They construct their self-identity as both the same as they were pre-stroke and changed. They are both the same and different in relation to other stroke survivors (with or without aphasia), i.e. both “disabled” and “normal”. They display both dependency and agency. Thus, they navigate the dilemmas by constantly negotiating what to include in their stories of self. In addition, telling one story of self offline does not imply telling the same story online.

Conclusion: The dilemmas are intertwined and highly relevant to the participants. Offline and online settings evoke different ways for them to navigate the dilemmas. Increased awareness of the possible struggle with self-identity dilemmas in people with aphasia, and the possible difference between their online and offline self-identities, should be of value to family members, clinicians and researchers. Further research based on a larger sample is suggested.

Place, publisher, year, edition, pages
Abingdon: Routledge, 2020
Keywords
Aphasia, stroke, self-identity, dilemmas, netnography
National Category
Social Psychology Other Health Sciences General Language Studies and Linguistics
Identifiers
urn:nbn:se:hh:diva-39173 (URN)10.1080/02687038.2019.1594151 (DOI)000463452900001 ()2-s2.0-85063255356 (Scopus ID)
Available from: 2019-03-25 Created: 2019-03-25 Last updated: 2020-02-18
Taubner, H. (2019). Afasi och narrativt aktörskap – mediebilder, självberättelser och multimodala litteracitetspraktiker. (Doctoral dissertation). Halmstad: Halmstad University Press
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
Taubner, H. (2019). Increased Agency through Screens and Co-Creation – Literacy Practices within a Group of People with Aphasia at a Swedish Folk High School. Scandinavian Journal of Disability Research, 21(1), 197-206
Open this publication in new window or tab >>Increased Agency through Screens and Co-Creation – Literacy Practices within a Group of People with Aphasia at a Swedish Folk High School
2019 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 21, no 1, p. 197-206Article in journal (Refereed) Published
Abstract [en]

This article aims to analyse characteristics of collective and authentic literacy practices within a group of people with aphasia attending an aphasia course at a Swedish folk high school. The group included 12 individuals with aphasia who were studied during a period of 3 weeks. Ethnographic data consists of video and audio recordings, photos and field notes. Two main characteristics of the literacy practices were identified: digital screens dominated and bridged the online/offline boundary, and shared knowledge enabled the participants to co-create literacy. The literacy practices were emancipatory, because they provided ways for the participants to un-mask their inherent competence, increasing their agency. When the use of digital technology transforms a (formerly non-literacy) practice into a multimodal literacy practice, and when an individual with aphasia becomes part of a literacy co-creation practice, the disability (understood as a relation between individual and environmental characteristics) caused by aphasia is reduced. © 2019 The Author(s). 

Place, publisher, year, edition, pages
Stockholm: Stockholm University Press, 2019
Keywords
aphasia, literacy practices, multimodality, agency, disability, ethnography
National Category
Human Aspects of ICT
Identifiers
urn:nbn:se:hh:diva-40448 (URN)10.16993/sjdr.635 (DOI)2-s2.0-85073798347 (Scopus ID)
Available from: 2019-08-23 Created: 2019-08-23 Last updated: 2020-02-03Bibliographically approved
Taubner, H. (2019). Multimodality as a key to identity re-negotiation when living with post-stroke aphasia in a digitalised society. In: : . Paper presented at Nordic Aphasia Conference, University of Turku, Turku, Finland, 13-15 June 2019.
Open this publication in new window or tab >>Multimodality as a key to identity re-negotiation when living with post-stroke aphasia in a digitalised society
2019 (English)Conference paper, Oral presentation only (Refereed)
National Category
Other Health Sciences
Identifiers
urn:nbn:se:hh:diva-40449 (URN)
Conference
Nordic Aphasia Conference, University of Turku, Turku, Finland, 13-15 June 2019
Available from: 2019-08-23 Created: 2019-08-23 Last updated: 2019-08-26Bibliographically approved
Taubner, H. (2017). “At least I can walk” – online re-negotiation of identity in post-stroke aphasia. In: : . Paper presented at Different Bodies: (Self-)Representation, Disability and the Media, University of Westminster, London, United Kingdom, 23 June, 2017.
Open this publication in new window or tab >>“At least I can walk” – online re-negotiation of identity in post-stroke aphasia
2017 (English)Conference paper, Oral presentation only (Refereed)
National Category
Other Humanities not elsewhere specified Media Studies
Identifiers
urn:nbn:se:hh:diva-35118 (URN)
Conference
Different Bodies: (Self-)Representation, Disability and the Media, University of Westminster, London, United Kingdom, 23 June, 2017
Available from: 2017-10-02 Created: 2017-10-02 Last updated: 2017-10-10Bibliographically approved
Taubner, H. (2017). Online and offline re-negotiation of identity when living with post-stroke aphasia. In: : . Paper presented at Nordic Aphasia Conference, University of Copenhagen, Copenhagen, Denmark, 15-17 June, 2017.
Open this publication in new window or tab >>Online and offline re-negotiation of identity when living with post-stroke aphasia
2017 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Other Health Sciences
Identifiers
urn:nbn:se:hh:diva-35117 (URN)
Conference
Nordic Aphasia Conference, University of Copenhagen, Copenhagen, Denmark, 15-17 June, 2017
Available from: 2017-10-02 Created: 2017-10-02 Last updated: 2017-10-19Bibliographically approved
Taubner, H. (2017). Online and offline re-negotiation of self when living with post-stroke aphasia. In: : . Paper presented at Nordic Network on Disability Research (NNDR) 14th Research Conference, Örebro University, Örebro, Sweden, May 3-5, 2017.
Open this publication in new window or tab >>Online and offline re-negotiation of self when living with post-stroke aphasia
2017 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Background: Aphasia, i.e. language disorder caused by brain injury (most commonly stroke), affects some 10.000 people in Sweden every year, 30% of whom are between 18 and 65. Much has been said about neurological or medical aspects of aphasia, but experiences of people affected are much less studied.

When living with post-stroke aphasia, the stroke constitutes a boundary between separate phases of life, often evoking an identity crisis and a need of a re-negotiation of self. Considering that 90% of the Swedish working-age population are Internet users, this re-negotiation process will necessarily include online aspects. Nevertheless, research combining aphasia, identity and online communication is scarce. Thus, this study aimed to investigate how working-age Swedish Internet users with post-stroke aphasia re-negotiate their identity, offline and online.

Method: Qualitative interviews were conducted with nine individuals (three men and six women) living with post-stroke aphasia (all diagnosed R470). At the time of the interviews, they were between 26 and 61 years old. In addition, a total of 1,581 online posts (e.g. photos, videos, text, emoticons) created by the same participants were analysed.

Results: The analyses indicate that the participants, in their re-negotiation of self, frequently position themselves in relation to other disabilities, e.g. by stating “I am not stupid” or “At least, I can walk”. This positioning varied depending on which points in time (i.e. pre-stroke, acute phase, rehabilitation, post-stroke) were taken into account.

Conclusion: Whereas some of the participants struggled to maintain a representation of themselves similar to their pre-stroke identity, some proudly embraced aphasia as a new aspect of their identity. Furthermore, they seemed to have better opportunities to control the renegotiation process in online settings than offline.

National Category
Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:hh:diva-35116 (URN)
Conference
Nordic Network on Disability Research (NNDR) 14th Research Conference, Örebro University, Örebro, Sweden, May 3-5, 2017
Available from: 2017-10-02 Created: 2017-10-02 Last updated: 2018-01-13Bibliographically approved
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)
Open this publication in new window or tab >>Signs of aphasia: Online identity and stigma management in post-stroke aphasia
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
Keywords
aphasia, identity, stigma, online communication, disability, afasi, identitet, stigma, digitalt medierad kommunikation, funktionshinder
National Category
Communication Studies Social Sciences Interdisciplinary Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:hh:diva-34010 (URN)10.5817/CP2017-1-10 (DOI)000404363200009 ()2-s2.0-85020440623 (Scopus ID)
Available from: 2017-06-19 Created: 2017-06-19 Last updated: 2019-11-01Bibliographically approved
Taubner, H. (2016). Online communication as improved stigma management in post-stroke aphasia. In: : . Paper presented at Language, Literacy and Identity International Conference, University of Sheffield, Sheffield, United Kingdom, July 1-2, 2016.
Open this publication in new window or tab >>Online communication as improved stigma management in post-stroke aphasia
2016 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Background: As in most developed countries, a large majority of the Swedish population are Internet users. Within the working-age population, the percentage is >90. Hence a large extent of the literacy practices and identity construction of Swedish people take place online. The increasing importance of being able to read and write is a challenge for people living with an acquired language disorder, such as aphasia (affecting some 10.000 individuals in Sweden every year). Linguistic practices are important mediating tools for identity construction. Aphasia can therefore be understood not only as (partially) losing one’s language and literacy skills per se, but also as being deprived of one’s identity. However, this is rarely taken into account in aphasia rehabilitation, and research combining aphasia, identity and online communication practices is scarce.

Aim: The aim of the current study is to examine how working-age Swedish Internet users with post-stroke aphasia construct their identity online.

Methods: Interviews were conducted with nine Swedish individuals (aged 26-61, three men and six women) with post-stroke aphasia. In addition, a total of >2000 online posts (e.g. photos, videos, text, emoticons) made by the same participants were collected.

Results: Analyses of the data, based on Goffman’s theory of stigma management, indicated that the participants made active choices whether to display or hide their aphasia online. Some of them proudly displayed their difficulties (e.g. by posting their medical record, or posting texts with errors) while others made efforts to hide them (e.g. by sharing texts written by others instead of writing themselves, or preferring emoticons or the like-button over commenting in writing), thus creating a difference between their offline and online identity. Offline, this kind of stigma management was less available to them.

Conclusion: A possible conclusion is that the participants’ online literacy practices to a large extent aimed at controlling who knew what about them, i.e. to control their stigma by presenting different identities in different contexts. It appears as if the participants consider the Internet, with its wide range of communication tools (including pictures, like-buttons, emoticons), a better arena for stigma management than their offline practices.

Keywords
aphasia, online communication, literacy, stigma management, identity
National Category
Communication Studies
Identifiers
urn:nbn:se:hh:diva-34239 (URN)
Conference
Language, Literacy and Identity International Conference, University of Sheffield, Sheffield, United Kingdom, July 1-2, 2016
Available from: 2017-10-02 Created: 2017-10-02 Last updated: 2017-10-10Bibliographically approved
Taubner, H. (2016). Online re-negotiation of identity in post-stroke aphasia. In: : . Paper presented at International Aphasia Rehabilitation Conference (IARC) 2016, City University of London, London, United Kingdom, December 14-16, 2016.
Open this publication in new window or tab >>Online re-negotiation of identity in post-stroke aphasia
2016 (English)Conference paper, Poster (with or without abstract) (Refereed)
National Category
Other Health Sciences
Identifiers
urn:nbn:se:hh:diva-35115 (URN)
Conference
International Aphasia Rehabilitation Conference (IARC) 2016, City University of London, London, United Kingdom, December 14-16, 2016
Available from: 2017-10-02 Created: 2017-10-02 Last updated: 2017-10-19Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-0826-4735

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