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The Meaning of the Present: Hope and Foreclosure in Narrations about People with Severe Brain Damage
Linköping University, Department of Medicine and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
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. Vol. 21, no 3, 324-342 p.
Keyword [en]
Disability, hope, motivation, narrative foreclosure, time
National Category
Social Work
Identifiers
URN: urn:nbn:se:liu:diva-18319DOI: 10.1525/MAQ.2007.21.3.324OAI: oai:DiVA.org:liu-18319DiVA: diva2:217972
Available from: 2009-05-18 Created: 2009-05-18 Last updated: 2017-12-13Bibliographically approved
In thesis
1. Different Voices - Different Stories: Communication, identity and meaning among people with acquired brain damage
Open this publication in new window or tab >>Different Voices - Different Stories: Communication, identity and meaning among people with acquired brain damage
2009 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Olika Röster - Olika Berättelser : Kommunikation, identitet och mening bland människor med förvärvad hjärnskada
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
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, 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:nbn:se:liu:diva-18323 (URN)978-91-7393-612-5 (ISBN)
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

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