Arbete och meningsfull sysselsättning är viktigt för människors inkludering i samhället och för trygga livsvillkor och utveckling. Att vara en del av arbetslivet anses vara avgörande för unga och deras etablering i vuxenlivet. Det är väl känt att deltagande i arbetslivet för den enskilde i ett livsloppsperspektiv generellt visar på ett positivt samband med faktorer såsom ekonomisk situation, social status och hälsa. För samhället är tillgången till människors olika kompetenser och deras möjlighet till självförsörjande angelägen. Alternativet till försörjning via eget förvärvsarbete är i många fall ersättning från socialförsäkringen. En grupp som historiskt sett stått, och fortfarande i betydande utsträckning står, utanför den öppna arbetsmarknaden är personer med intellektuell funktionsnedsättning (IF). Andelen personer med IF i befolkningen är knappt två procent, varav tre fjärdedelar bedöms ha lindrig funktionsnedsättning. Forskning har dock visat att en relativt liten andel av unga vuxna med IF återfinns på den öppna arbetsmarknaden men att många fler i gruppen skulle önska att ha ett förvärvsarbete, om det fanns bättre möjligheter och förutsättningar. Kunskapen om vilka faktorer som är av betydelse för att unga med IF ska komma in på arbetsmarknaden samt behålla arbetet, dvs få en varaktig och hållbar arbetsmarknadsanknytning, är mycket liten. Syftet med detta projekt var mot denna bakgrund att, utifrån studier som fokuserar på personer med IF som arbetar, identifiera faktorer som kan vara av betydelse för att främja en hållbar anknytning till arbetsmarknaden.

Background: Swedish employment rates are disproportionately low among people with intellectual disability and research on employment sustainability in this group is scarce. This study investigated employment sustainability among people with intellectual disability, with a focus on identifying facilitators. Method: Fifteen persons with intellectual disability who were gainfully employed and had been so for at least 1 year during the last 3 years, and 10 representatives from their employers, were interviewed. Results: Five facilitators were identified: (1) having tried various types of work, (2) liking to be at work, (3) balance concerning expectations and adaptations, (4) mutual engagement and flexibility, and (5) wage subsidies. Conclusion: Employment sustainability needs to be understood at individual as well as environmental and societal levels. In addition, both duration and progress should be considered regarding employment sustainability in this population. © 2022 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.

Purpose: Previous reviews about employment for people with intellectual disability (ID) have left questions about employment sustainability unanswered. Therefore, the aim of this systematic review was to identify and analyse research regarding employment sustainability for people with ID. The research questions were: What research about employment sustainability for people with ID has been published internationally between 2010 and 2020? In the identified studies, how is employment sustainability defined and measured and what are the main findings regarding employment sustainability?

Methods: A systematic review was conducted using eight databases from various disciplines including medical, health, and social sciences. After a selection process, 10 articles remained, and a framework matrix was created to analyse them. An employment sustainability definition was used as an analytical tool.

Results: Ten articles were identified as being about employment sustainability for people with ID. Five of them used qualitative designs and five used quantitative designs. Only four out of ten contained a definition of employment sustainability, and there was an inconsistency in measurement methods. The reported findings in the studied articles were categorised into three types: proportions of long-term employed individuals within the studied population, facilitators and barriers to long-term employment.

Conclusions: There is only a limited amount of research about employment sustainability for people with ID. Nevertheless, a few facilitators and barriers could be identified. There is no consensus about how to define or measure employment sustainability, making comparisons difficult. © The Author(s) 2021

Aphasia is a language impairment caused by acquired brain injury such as stroke. Public awareness about aphasia is low in Sweden as well as internationally. The media is an important source of information on aphasia, but research on how people with aphasia are portrayed in the media is scarce. Therefore, this study aimed to increase the knowledge about media representations of people living with aphasia, by studying Swedish journalistic newspaper articles. It focused on stories in which people with aphasia were included in the discussion rather than merely being the subject of the discussion. Drawing on framing theory and Frank’s typology of narrative types, a qualitative ethnographic content analysis was conducted. Swedish print media material published between 2007 and 2018 was collected and 84 articles were identified for inclusion in the analysis. The overall finding was that, within Swedish journalistic newspaper articles, living with aphasia is framed as a success story. Themes and sub-themes were identified within each narrative type, and we suggest expanding Frank’s typology with humour narratives and necessity narratives. Although several narrative types were identified in the studied articles, the overarching success story frame was predominant. Copyright (c) 2021 Helena Taubner, Malin Hallén

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. © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

We are our stories of self. The stories we tell about ourselves is the interface between us and others, as we keep our “narratives going”. What happens, then, if we lose our language due to a brain injury? In this chapter, stories of people with post-stroke aphasia are related and analysed. They have lost their linguistic abilities overnight, entailing a need of identity re-negotiation. However, their key to this re-negotiation, i.e. language, has been reduced “when most needed”. In a highly digitalized society like Sweden, identity is “always online” and online literacy practices are central to everyday communication. Thus, the stories of self told by people living in Sweden – including people with aphasia – include online aspects. The aim of this chapter is, therefore, to explore stories of self of nine Swedish individuals (6 women and 3 men, aged 24–56 at onset) with aphasia, and to analyse the role played by multimodal online literacy practices when telling these stories. The participants were interviewed and observed online. The interviews were based on the PCI methodology which aims to generate storytelling and emphasises the participant’s right to be understood. The online observations were inspired by netnography and included the social media platforms in which the participants were active. Findings show that the participants recurrently negotiated what to include in their stories of self, and that they constantly navigated identity dilemmas. They constructed self-identities as both the same as they were pre-stroke and changed. They were both the same and different in relation to others, i.e. both “disabled” and “normal”. They displayed both dependency and agency. Because of the multimodality, the online literacy practices provided an opportunity for the participants to express their stories of self in a more elaborate way than in offline settings. Thus, online multimodality increased the participants’ control of their identity re-negotiation.

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.

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.

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).