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Different Voices - Different Stories: Communication, identity and meaning among people with acquired brain damage
Linköping University, Department of Medicine and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
2009 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Olika Röster - Olika Berättelser : Kommunikation, identitet och mening bland människor med förvärvad hjärnskada (Swedish)
Abstract [en]

The main purpose of the dissertation is to understand meaning-making practices used by people suffering from acquired brain damage with severe physical and communicative disabilities, in order to create and sustain their identity and personhood in relation to other people. The study emanates from the idea that identity and personhood, also in relation to disability, are created/sustained in ongoing interaction between people in everyday situations, and that the ability to narrate is central to such a creation of identity. Therefore, it is of particular interest to try to understand what communicative and storytelling abilities/possibilities people with severe acquired brain damage have in presenting their identity.

The study is ethnographic and based upon a year-long field study of participant observations at a day centre for people with acquired brain damage. Gathered data consist of written field notes, informal interviews conducted with both participants and personnel and approximately 70 hours of video data.

The study shows how an identity as ‘severely disabled’ is created in the co-created storytelling between participants and personnel and that this identity seems to mean that one is dependent upon others to get along in everyday life at least if one listens only to spoken stories. Yet the study also shows that there exist different opinions about what this identity as ‘severely disabled’ could mean that there is a wish among the participants to be able to present a desirable identity as “normal”, and that such an identity comes to mean to be independent and self-determined. Normality, however, must be understood in relation to surrounding society (and the grand cultural narratives that surround us). Thus the study shows that normality in relation to severe disabilities is almost impossible to achieve because normality in relation to illness/disease/body contains the hope of a cure or an improvement. The participants in this study, however, have all been labelled as incurable – there is no hope of such a cure or improvement. That, on the other hand, does not mean that the participants do not try to tell such stories anyway in their quest to achieve this desirable identity. However, in order to hear this story we need to listen to stories that usually remain untold. A palpable hierarchy between different modes of language use was identified, where verbal/spoken language is supreme, resulting in the disabled participants not being perceived as competent interactors/communicators due to their difficulties in using verbal communication. Hence their ways of creating/telling stories, through embodiment and enactment, are not recognised as valid ways to create/tell stories; this is discussed in relation to both practical implications for health care settings as well as for further narrative research.

Abstract [sv]

Avhandlingens huvudsyfte är att förstå meningsskapande praktiker som personer som drabbats av förvärvad hjärnskada med grava såväl fysiska som kommunikativa funktionshinder använder för att skapa och upprätthålla sin identitet och sitt personskap i relation till andra människor. Studien utgår ifrån att identitet och personskap, också i relation till funktionshinder, är något som skapas och upprätthålls i det pågående samspelet mellan människor i vardagliga situationer och att förmågan att berätta är central för detta identitetsskapande. Därför är det av särskilt intresse att försöka förstå vilka möjligheter personer med grava förvärvade hjärnskador har när det gäller att kommunicera och använda berättandet som ett sätt att presentera sin identitet.

Studien är etnografisk och baseras på ett årslångt fältarbete bestående av deltagande observationer på ett dagcenter för människor med förvärvade hjärnskador. Insamlade data består av fältanteckningar, informella intervjuer med både deltagare och personal och ca 70 timmar videomaterial.

Studien visar hur en identitet som ’gravt funktionshindrad’ skapas i det gemensamma berättandet mellan deltagare och personal och att denna identitet verkar innebära att man är beroende av andra för att klara sitt vardagliga liv, åtminstone om man enbart lyssnar till talade berättelser. Likväl visar studien även att det kan råda delade meningar om vad denna identitet som ’gravt funktionshindrad’ kan innebära och att det bland deltagarna finns en strävan att kunna presentera en önskvärd identitet som ”normal” och att en sådan identitet innebär att vara oberoende och självbestämmande. Normalitet måste dock förstås i relation till omgivande samhälle (och de stora, kulturella berättelser som omger oss) och studien visar att normalitet i samband med grava funktionshinder är i det närmaste omöjligt att uppnå då normalitet i relation till sjukdom/kropp innefattar ett hopp om att bli frisk, eller åtminstone bättre. Deltagarna i denna studie har emellertid diagnostiserats som obotliga – det finns inget hopp om förbättring. Detta innebär inte desto mindre att deltagarna ändå försöker berätta sådana berättelser i strävan efter att uppnå en önskvärd identitet. Dock; för att höra denna berättelse krävs ett lyssnande på berättelser som vanligtvis förblir oberättade. En tydlig hierarki mellan olika former av språkanvändning identifieras, där det talade ordet och den talade berättelsen ses som överlägsen. Detta får till konsekvens att de funktionshindrade inte ses som kompetenta aktörer/kommunikatörer pga. av sina svårigheter att kommunicera verbalt och att deras sätt att skapa berättelser, genom förkroppsligande framställningar, inte erkänns som legitima sätt att berätta. Detta diskuteras både i relation till olika praktiska implikationer för vårdinstitutioner och för vidare narrativ forskning.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2009. , 76 p.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 482Linköping Dissertations on Health and Society, ISSN 1651-1646 ; 17
Keyword [en]
Acquired brain damage, body, communication, dependence, disability, embodiment, enactment, ethnography, identity, language use, meaning-making practices, narratives, normality, personhood, power relations, self-determination, social interaction, stories, storytelling, story-making, videoethnography, voice
Keyword [sv]
Beroende, berättande, berättelser, etnografi, funktionshinder, förkroppsligande, förvärvad hjärnskada, identitet, kommunikation, kropp, maktrelationer, meningsskapande praktiker, narrativer, normalitet, personskap, röst, självbestämmande, social interaktion, språkanvändning, videoetnografi
National Category
Social Work
Identifiers
URN: urn:nbn:se:liu:diva-18323ISBN: 978-91-7393-612-5 (print)OAI: oai:DiVA.org:liu-18323DiVA: diva2:217984
Public defence
2009-06-09, Aulan, Hus 240, Campus US, Linköpings Universitet , Linköping, 13:15 (English)
Opponent
Supervisors
Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2013-09-04Bibliographically approved
List of papers
1. Would you like to use one of these or would you rather be able to talk?: facilitated and/or augmentative communication and the preference for speaking
Open this publication in new window or tab >>Would you like to use one of these or would you rather be able to talk?: facilitated and/or augmentative communication and the preference for speaking
2009 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 11, no 4, 257-274 p.Article in journal (Refereed) Published
Abstract [en]

This article examines the concepts of identity and personhood in relation to people with severe communicative disabilities. Data gathered at a Swedish day centre for people with acquired brain damage show that three main strategies in communication between able-speaking and impaired-speaking persons can be found; (1) perfunctory, (2) jigsaw puzzle, and (3) conjectural, all three strategies being based on the act of speaking. This article shows why it seems important to talk with one’s own physical voice instead of using augmentative and/or facilitated communication, even when one has a highly impaired speech pattern. I argue that an ideology of spoken language exists within western culture and that such an ideology has practical implications for the (re-)creation of meaning-making strategies in relation to people with severe communicative disorders. Implications for health-care personnel working with communicatively impaired people are also identified, as well as implications for researchers studying this field of interest.

Place, publisher, year, edition, pages
Taylor & Francis, 2009
Keyword
Communicative strategies; disability; ideology of speech; personhood; identify.
National Category
Social Work
Identifiers
urn:nbn:se:liu:diva-18318 (URN)10.1080/15017410902909100 (DOI)
Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2017-12-13Bibliographically approved
2. Whose body is it anyway? Verbalization, embodiment, and the creation of narratives
Open this publication in new window or tab >>Whose body is it anyway? Verbalization, embodiment, and the creation of narratives
2009 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, Vol. 13, no 3, 361-379 p.Article in journal (Refereed) Published
Abstract [en]

This article examines the creation of narratives between people with severe disabilities and the personnel working with them. It shows that although a co-created narrative of what it means to be severely disabled (the story of dependence) seems to prevail, another narrative (the story of autonomy) is also told, where the story of dependence is rejected by the person with disabilities. However, this story of autonomy only becomes clear if we recognize three central claims: (1) there is a connection between where the physical body of the person with disabilities is positioned in space and what he or she is allowed or able to be and do; (2) since the body is a communicative tool, the moving of the body could be interpreted as a narrative, told through the embodiment of space; and (3) the embodied story can challenge existing social structures. The article highlights the inherent struggle for power within narrations and how the creation of alternative narratives can contest existing social structures.

Keyword
Disability, embodiment, narratives, power relations
National Category
Social Work
Identifiers
urn:nbn:se:liu:diva-18034 (URN)10.1177/1363459308101808 (DOI)
Available from: 2009-05-04 Created: 2009-05-04 Last updated: 2017-12-13Bibliographically approved
3. The Meaning of the Present: Hope and Foreclosure in Narrations about People with Severe Brain Damage
Open this publication in new window or tab >>The Meaning of the Present: Hope and Foreclosure in Narrations about People with Severe Brain Damage
2007 (English)In: Medical Anthropology Quarterly, ISSN 0745-5194, E-ISSN 1548-1387, Vol. 21, no 3, 324-342 p.Article in journal (Refereed) Published
Abstract [en]

In this article, I consider narratives told within a clinical setting. I argue that personnel in a day center for people with acquired brain damage are constantly involved in narrating about the disabled participants. The negotiation of who the participant is, and foremost will be, is in constant negotiation in regard to issues of hope. I further argue that hope is a meaning-making process and, as such, it has been defined as crucially connected to time. Hope has been said to enable a connection between the present and the future, because action taken in the present could bring about (positive) change in the future. However, I show that hope, in relation to narratives told about people with severe disabilities that are considered "incurable," must be understood within a realm of narrative foreclosure. Time seems to have lost the openness of its horizon for these people, and a narrative that tells of immediacy rather than chronology is created, resulting in hope being established within the present.

Place, publisher, year, edition, pages
Wiley InterScience, 2007
Keyword
Disability, hope, motivation, narrative foreclosure, time
National Category
Social Work
Identifiers
urn:nbn:se:liu:diva-18319 (URN)10.1525/MAQ.2007.21.3.324 (DOI)
Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2017-12-13Bibliographically approved
4. Communicative disability and stories: Towards an embodied conception of narratives
Open this publication in new window or tab >>Communicative disability and stories: Towards an embodied conception of narratives
2011 (English)In: Health, ISSN 1363-4593, E-ISSN 1461-7196, Vol. 15, no 6, 588-603 p.Article in journal (Refereed) Published
Abstract [en]

In this article we show that persons with communicative disabilities are often involved in storytelling that does not necessarily conform to the conventional expectations of what constitutes a narrative. By analyzing the relationship between story and storytelling event, and the relation between what could be called the primary storyteller and the vicarious storyteller, we show that storytellers with communicative disabilities are often quite inventive in finding ways of presenting themselves as competent storytellers even though they may have certain problems vocally animating a coherent, structured story. This lead us to conclude a necessary redefinition of what a narrative is – that it could be performed as well as it could be told – and that such a redefinition stresses methodological issues: in order to be able to study the life stories of people with communicative disabilities we need to use both narrative and ethnographic research methods.

Place, publisher, year, edition, pages
Sage, 2011
Keyword
communicative disability, narratives, story, storytelling, voice
National Category
Social Work
Identifiers
urn:nbn:se:liu:diva-18322 (URN)10.1177/1363459310364158 (DOI)000296746300003 ()
Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2017-12-13Bibliographically approved

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