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The article problematizes the way late modern society has contributed to discursive tensions in the welfare state services for people with intellectual disabilities in Sweden. We illustrate how disability practices, such as educational systems and work-life arrangements for people with intellectual disabilities, are characterized by an institutiona...
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Background
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Methods
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This submission addresses the progress of inclusive education for children and young people with intellectual disabilities around the globe. As part of our submission we present data from a survey of disability organisations and experts (researchers and academics in the field of (intellectual) disability) completed in early 2015.
Citations
... Vidare kan erfarenheter, perspektiv och identitetskonstruktioner skilja sig åt mellan olika grupper. Ofta utmanas det icke-traditionella och individualiserade perspektivet av det institutionella perspektivet (Midjo & Ellingsen Aune 2016) och det finns ett spänningsfält mellan individuell frihet och konformitet (Ineland, Molin & Sauer 2015). Midjo och Ellingsen Aune (2016) betonar att om unga vuxna med intellektuell funktionsnedsättning ska utveckla egna resurser som del av vuxenblivandet, måste det finnas möjlighet att utforska och uttrycka möjliga sociala identiteter. ...
Recent research emphasizes how important it is for young people with intellectual disability to explore and express different social identities. A gender-neutral approach is still relatively common in social science, and there is a lack of studies on young women with intellectual disability and identity formation in digital arenas. Thus, the overall aim is to study young women with intellectual disability and their experiences of presentation of the self on the Internet, more specifically, how the Internet and social media generate conditions for alternative identity constructions and the way these are manifested. This study is based on interviews with young women with intellectual disability (n=17) aged 16-21. The interviews with the participants were carried out during 2017 and 2018 in various forms: individual interviews, pair-interviews and focus groups. The analysis was inspired by inter-pretative phenomenological analyses (IPA) and indicated four themes: being yourself; being cautious and avoiding showing your body; fake identity and beautifying; and when the image does not match. The results were interpreted in a framework of interactionism and highlighted negotiations at different levels and in various areas. The most salient were negotiations about risk and opportunity , arenas online and offline, and normality and deviance. The results indicated that young women with intellectual disability appear to be in a field of tension between risk and opportunity. The Internet seems to offer them the opportunity to explore different identity expressions, though it can also be compared to a minefield in which they need to navigate between the risks. This leads to caution, which is relevant but can be experienced as inhibiting, and places great demands on those around them: parents and professionals. One way to approach this phenomenon is dialectic participation and positive risk taking.
... För forskning, men även bland föräldrar och yrkesverksamma som arbetar med personer med intellektuell funktionsnedsättning, blir det således angeläget att -empirisktstudera när, hur, varför och med vilka sociala konsekvenser unga personer intellektuell funktionsnedsättning använder sociala medier och internet. Inte minst då Sverige har ett särskilt system för att organisera särskoleverksamhet (Ineland, Molin & Sauer 2015). Tillsammans med erbjudandet om särskilt stöd och hjälp i skolkontexten följer också en tillskriven kategoritillhörighet som "särskoleelev", vilken de unga själva i olika sammanhang försöker förhålla sig till (se tex. ...
... Möjligen har de senaste decenniernas digitalisering och globalisering bidragit till att samhällets gemenskaper har blivit än mer flytande och mångfacetterade. För unga och unga vuxna med intellektuell funktions-nedsättning kan det sägas att det senmoderna samhället bidragit till möjligheten att resa alternativa livsstilsanpråk i relation till den tillskrivna "brukarroll" som ofta blir förknippad med tillhörigheten till välfärdsinriktade verksamheter (Inleand, Molin & Sauer 2015). ...
Även om forskning om ungdomar och internet är ett växande område finns det relativt få studier som illustrerar förhållanden för ungdomar med intellektuell funktionsnedsättning. Tidigare studier har visat att ungdomar med intellektuell funktionsnedsättning är oroliga för att bli marginaliserade, och att många upplever sig mer ensamma än andra ungdomar. Därför kan sociala nätverkssajter på internet vara av avgörande betydelse för att skapa ett utrymme för nya sociala kontakter men även för utforskande av alternativa och mindre stigmatiserade identiteter.
Projektet syftade till att beskriva och analysera hur ungdomar (16-20 år) med lindrig intellektuell funktionsnedsättning interagerar och deltar på internet. Närmare bestämt har vi utifrån elev-, personal- och föräldraperspektiv studerat de ungas självpresentationer, sociala relationer och delaktighet inom ramen för olika gemenskaper på internet. Projektets mål var att generera kunskap om dessa komplexa processer, som kan vara användbara för hur den närmaste omgivningen av vuxna kan stödja och hjälpa unga med intellektuell funktionsnedsättning med sin internetanvändning.
Projektet omfattade kvalitativa intervjuer med ungdomar med intellektuell funktionsnedsättning (n=27), föräldrar till ungdomar med intellektuell funktions-nedsättning (n=22) och personal i gymnasiesärskolan (n=17). De transkriberade intervjuerna analyserades med hjälp av tematisk innehållsanalys (Braun & Clarke 2006). Projektet har erhållit etiskt godkännande från Regionala etikprövnings-nämnden i Göteborg (Dnr 048-15).
Ett framträdande resultat i studien rör de unga informanternas sätt att tala om sin medvetenhet om både risker och möjligheter med internet och sociala medier. Dock noterades att ju mer de interagerade med icke-funktionshindrade kamrater, desto mer upplevde de negativa och oönskade konsekvenser av internet-användningen (att bli lurad, hotad, mobbad etc). En slutsats var att dessa omständigheter snarare leder till att de växlade ner sitt internetanvändande och som i sin förlängning innebar mindre delaktighet på internet och sociala medier.
Även om Internet kan vara en "frizon" där den unga personen kan utveckla sociala band och konstruera sin identitet fri från vuxenövervakning, så är föräldrar och yrkesverksamma ofta mycket närvarande och engagerade, medan ungdomarna uttrycker att de inte är i behov av stöd. Professionella och föräldrar anser att internet är en arena för positiva möjligheter men även risker. Professionella verkade vara mer oroliga för riskerna än föräldrarna som säger att möjligheterna uppväger nackdelarna. Föräldrarna är mest bekymrade över risken för ensamhet och social isolering. Sammantaget beskrivs de unga med intellektuell funktionsnedsättning som en mer heterogen grupp av både föräldrar och personal jämfört med tidigare forskning. Informanternas erfarenheter diskuteras i studiens publikationer i begreppsliga ramverk som rör social identitet, deltagande, positivt risktagande, sexualitet och frigörelse.
I en jämförande analys av resultaten från de olika delstudierna visas hur den sociala delaktigheten på ett dialektiskt sätt förhandlas och konstrueras mellan ungdomar med och utan intellektuell funktionsnedsättning men också mellan de unga i studien och vuxna personer i den närmaste omgivningen. Genom att anlägga ett intersektionellt perspektiv på frågor om identitetsskapande aktiviteter och risktagande på internet kan en mer relationell förståelse av den digitala delaktighetens problem och möjligheter synliggöras. En relationell förståelse av att hamna i svårigheter implicerar att risk och utsatthet inte alltid behöver bero på funktionsnedsättningen utan på kontextuella förutsättningar och andra sam-varierande faktorer.
Med tanke på unga människors behov av självständighet är det av stor vikt att vuxna reflekterar över och balanserar stödet beroende på den unga människans behov. Att ge stöd till positivt risktagande på internet innebär vuxna tillsammans med unga reflekterar över hur eventuella risker kan hanteras snarare än hur risk kan undvikas.
Nyckelord: Delaktighet, Internet, Sociala medier, Intellektuell funktionsnedsättning
... The participants also described their continuous lack of control over the young adults' online behaviour, which prevented them from fulfilling what is socially expected. This lack of control can contribute to a risk-thinking approach towards ICT among staff (Clifford Simplican et al. 2018;Seale & Chadwick 2017) and illustrates the potential for tension between the organisation and the young adults' life that staff may need to manage (Ineland, Molin & Sauer 2015). ...
Staff in residential care are key support people for young adults with mild to moderate intellectual disability in everyday life. The aim of this study was to identify how staff members work with young adults with mild to moderate intellectual disability to enable their independence and participation through Information and Communication Technology (ICT). A narrative approach was used to analyse focus group interviews with staff in a residential care setting. Staff members reported a variety of ways to position themselves in relation to the service-user when using ICT, such as advocates, moral guardians and enablers. These positions bring different consequences for the service-users to realize their rights as stated in the Convention on the Rights of Persons with Disabilities. Organisational resources appear continuously in staff narratives as hindering or supporting in the use of ICT for participation purposes of young adults with ID.
... Studies by for example Kaye (2009) and Owen and Harris (2012) show that the lack of opportunities to attain a satisfying job and individual success is an acknowledged problem among people with disabilities, as are the incentives to take any offered job (whether suitable or not) when entering a vocational support program. Graby (2015) draws attention to the phenomena of the new generation opposing the work-preparative schemes because these schemes impose upon personhood and identity (Ineland et al., 2015). Clearly, organizational contexts and approaches towards clients have an important role in these matters (Lantz & Marston, 2012;Røberg, Hansen, Feiring, & Romsland, 2017). ...
... This maintains the status quo of the personal state, intellectually and socially, but affects the work-identity negatively in line with dis/abling context and practices (cf. Olin & Jansson, 2009;Ineland et al., 2015). These kind of feelings are also illustrated in a narrative by Victoria who describes a situation in her internship at a recycling station: VRP2: and then it turns out, he did not have a driver's license! ...
Sweden, like other Western countries, has a disability legislation that coexists with the Active Labour Market Policies. ALMP address a discourse emphasizing the importance of the able and productive ‘citizen-worker’ who is expected to craft his/her own success through meaningful personal goals and ambitions. This discourse also impacts disability groups who are actualized for support-to-work interventions, such as people with high-functioning autism (HFA). The objective of this paper is to analyse how narratives targeting ambitions and self-realisation in work life are expressed by individuals with HFA in relation to the citizen-worker discourse. This ethnographic study comprises 26 qualitative interview narratives by 11 participants with HFA. Findings indicate that the participants have developed a strong citizen-worker identity. The will is an essential point of gravity, expressed through notions of individual meaningfulness and ambitions of being perceived as resources in any vocational context. Barriers to these ambitions are experienced as personally counteractive support-to-work practices. These results suggest that disability legislation and policies are caught in a mantra of stagnating normalisation, resulting in disability-worker interventions that are incompatible with meanings emphasized in the citizen-worker discourse, which is the new ‘normal’ of today.
... This view is similar to that of young individuals without disabilities when talking about ambitions and future plans. This result confirms the conclusions of other studies like that of Ineland, Molin, and Sauer (2015), which also showed that young disability groups gave narratives that were opposed to unsatisfactory jobs that could be provided through disability provisions. ...
The meaning of work is different for people in different social groups, and research exploring perceptions of meaningful work among adults with high-functioning autism (HFA) is scarce. The aim of this paper is to explore how narratives of satisfactory and meaningful future jobs are portrayed relative to two alternative discourses of work – the ‘obligation to work’ discourse, and the ‘disability rights’ discourse. This group of individuals are high functioning on the one hand, while at the same time holding legally-mandated special disability rights, an exploration of how this group reason about work-life and satisfactory jobs is particularly interesting. Through ethnographic fieldwork in Sweden, seven young adults with HFA were followed, and 17 interviews were conducted. The main findings and conclusions are that jobs that are individually assessed to be ‘ideal’, are put aside in favor of jobs that are more compatible with general labor market demands, as long as enjoyment and meaningfulness can still be experienced.
... In Sweden, professional social work practice has been described as having an onus on the young person with disabilities to adapt to the Swedish mainstream taking the view that young people will want to normalise. Combined with decentralisation, where local authorities design their own support, there has been little room for young people to define their own priorities and identities (Ineland, Molin, & Sauer, 2015), especially if they lack parental support. ...
Accessible summary
When young people with learning disabilities leave the care system, they can experience many problems.
Here we describe some of these problems and what they do (or would like us to do) to improve things.
Young people do not always want the same things that professionals or family carers want.
We do not spend enough time listening to what young people can tell us.
Abstract
Background
Young people with learning disabilities are frequently underrepresented in research accounts. This study describes the experiences of young people moving from the care system.
Methods
We scoped the English and Swedish literature for first‐hand accounts and interviewed four young people with learning disabilities leaving the English care system. We combined findings from both sources.
Findings
“Grey” and campaigning literature are more likely than academic studies to include the voices of service users, but even then, the voices tend to be those of professional or family carers. Both the literature and interviews demonstrate young peoples’ awareness and understanding of the social as well as financial benefits of work. Good foster care could be precarious, and young people in unhappy placements lacked direction. Exploitation around a young person's housing and finances could be problems. There was evidence of “threshold” difficulties in accessing services.
Conclusions
Despite an NHS commitment to listening to users in the UK , and similar aspirations in Sweden, our search of the literature identified few studies reporting care leavers' with learning disabilities own words. Our data add to the voices of a group frequently silent or silenced. We found evidence of resilience and hope as well as difficulties and frustrations. The accounts in the literature and our interviews provide data on what it can be like to try to operate “the system.” The people we spoke with and those whose accounts we found in the literature were thoughtful and engaging. They provide an important source of knowledge for policy and practice.
... This is a prerequisite for legitimacy and survival (such as in the project). Consequently, the TSS and the TCS must uphold a dual legitimacy, turning one face inward (appropriateness according to norms and values) and another outward (institutionalised expectations in the environment) (also see Ineland, Molin and Sauer 2014). ...
Although inclusion has been a value set forth in international policy arenas and a focus for school development research indicate the problems in establishing more inclusive practices. Although teachers may favor an inclusive model of education, they may experience difficulties in the implementation of inclusive practices. The aim of this article is to describe and analyze the professional experiences of a policy-driven, top-down-initiated inclusive practice in a municipally in northern Sweden. The empirical data is based on qualitative interviews with four teachers, two from special school and two from compulsory school. The result show a professional ambivalence in relation to introduction and information, cooperation and views on inclusion. The results are analyzed from an institutional viewpoint and point out that two institutional logics are apparent in the study. On the on hand an educational logic, which is formal/ideological and contains norms and values connected to ideological ideals such as normality, equality, and inclusion. On the other hand, a social logic, which was, not informal, but vague and pragmatic were differentiation and disability were key aspects. Consequently, important inter-professional aspects during an implementation process, such as information, cooperation, and views of inclusion, were characterized by ambivalence. To conclude, the article add to the discussion of challenges – administrative, organizational, practical – in implementing new discursive practices within inclusive education as norms and values, routines, and rituals are not easily changed, regardless of political rhetoric. Keywords : ambivalence, cooperation, intellectual disabilities, institutional logics, inclusive education (Published: 3 March 2015) Citation : Education Inquiry (EDUI) 2015, 6 , 26157, http://dx.doi.org/10.3402/edui.v6.26157
Information and communication technology (ICT) has increased in importance and facilitates participation in several life areas throughout society. However, young adults with mild to moderate intellectual disability make less use ICT than the general population. Disability services staff play a central role in supporting and enabling service users in daily life, and their perceptions of ICT are important to their role in service provision. The aim of the study is to describe staff perceptions of the role of ICT and how it affects daily life in young adults with mild to moderate intellectual disability living in residential homes. Focus group interviews and individual interviews were conducted with staff working in residential homes in which young adults with mild to moderate intellectual disability live. All materials were transcribed verbatim and analyzed using latent content analysis. Staff perceived ICT and, more specifically, the Internet as being supportive of both daily life and social relationships of these young adults, but they also viewed ICT as posing social risks. Perceptions of and support for ICT were related to staff perceptions about what is appropriate and manageable in relation to an individual resident's functioning level. Staff members also considered the views of parents about appropriate content when providing support. Staff in residential homes for young adults with mild to moderate intellectual disability use their implicit moral judgment about the use of ICT by residents. Their enablement of and support for ICT are not primarily based on the service user's wishes or interests. This finding implies a risk that the organization of a conflict‐free service provision is a higher priority than service users' participation in social life.
This article examines how administrators in social services (n = 70) and habilitation staff in healthcare (n = 40) in Sweden experience difficulties in their work with people with intellectual disabilities. The research aim was to investigate the most typical aspects of difficult working situations and to apply a comparative analysis of differences and similarities, where the respondents' organizational affiliations are taken into account. The results are primarily based on a content analysis. Contextual standardized questions were included in this study. The results revealed that experiences of difficulties were categorized in four typological themes: difficult situations associated with (1) structure, (2) professional role, (3) relationships, and (4) collaboration. The respondents' experiences of difficult situations in social services and healthcare organizations did not correspond to the respondents' work dissatisfaction or unclear goals. On the contrary, handling this plurality within a specific organizational context was a fundamental aspect of professionalism. The different characteristics of the organizations in this study reflected two different institutional logics. While the administrators mainly operated within an administrative logic based on a regulatory framework, the habilitation staff operated within a therapeutic logic based on a cognitive framework. Consequently, the two groups had their own specific norms and rule systems, which influenced when, and to what extent, everyday situations were experienced and defined as difficult. The organizational context seems to influence experiences of difficult situations in the work with people with ID and this calls for a discussion of how it impacts the quality of services within intellectual disability services.
In this article, I deal with the professional and ethical implications within welfare organizations that are characterized by having what I refer to as a hybrid structure in inclusive education and disability arts in Sweden. The article is predominantly theoretical in its character and excerpts from empirical research are used primarily as illustrations of the theoretical issues and themes addressed. Empirical data was collected using qualitative research interviews and a digital web survey. The article suggests that hybrid structures carry both opportunities and threats, as such structures expose (welfare-) organizations to different sets of values and expectations. Both inclusive education and disability arts are constituted by somewhat antagonistic institutional logics. It is argued that this may cause professional ambiguity, considering that institutional logics inform the organizations about what is appropriate in relation to the daily work, e.g. aims, methods, ambitions, and professional relations. An important implication for further research is how teachers and school organizations, as well as cultural workers within social work organizations, deal with the risk of people with ID being stigmatized—through labelling, differentiation, or compensatory arrangements—without failing to address the fact that some individuals have, and always will have, special needs due to their ID.
