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This paper uses a neo-institutional perspective to examine possibilities and obstacles for participation in coordinated individual planning (CIP) for people with intellectual disabilities. CIP is a tool for interprofessional and interorganizational coordination with the objective of creating a joint plan for a person needing cohesive care. Participation by the service-user is considered important for effective coordination but involving someone with an intellectual disability may require special adaptations. A thematic analysis of interviews with 17 professionals from different organizations in Sweden reveals that service user participation is considered an important goal by professionals, but also that it is difficult to put into practice. The results indicate that CIP is characterized by tensions and policy-practice decoupling that limit the service-users' possibilities for participation. Points of interest: Different organisations and professionals sometimes give support to one individual. They need to coordinate this support. It is necessary for service-users to be involved in coordinated planning of the support and care they need. The study analyses how professionals experience participation in coordinated planning when the service-user has an intellectual disability. The study found that coordinated planning can be difficult to adapt for service-user participation. The study found a gap between ideals and practice caused by the organizations' rules, norms, and structures. The findings reveal a risk of focusing on changing the service-user's behaviour or situation rather than addressing problems within the organizations. [ABSTRACT FROM AUTHOR]

Young people with intellectual disability seem to be more vulnerable on the Internet than youth in general. Therefore, it is important to investigate not only their strategies for managing negative online experiences but also how they experience Internet-related support. This study applies a qualitative and interpretative approach drawing on individual and pair interviews with pupils in upper secondary special programme schools in Sweden. A thematic analysis resulted in the following themes: 'a lesson to be learned', 'the important role of siblings', 'the dilemma of support' and 'negotiation of control'. With regard to negative online experiences, strategies for managing privacy, safety and risky situations are understood as problem-focused coping and efforts to manage external/internal demands. The central role of social networks is emphasised with regard to Internet-related support. It is concluded that online restrictions may discourage open dialogue. A perspective of positive risk-taking, focusing on opportunities rather than risks, is advocated. This article investigates the participants' perspectives in their own words. The key contribution of the paper is finding out how young people with intellectual disability in Sweden handle negative online experiences and how they experience Internet-related support. The study highlights a range of themes from lessons learned and sibling relationships to problems of support and control that reflect many social and individual characteristics. The participants use different coping strategies to handle negative online experiences. They seem to manage privacy and safety on their own and refuse control in risky situations. With regard to Internet-related support, the participants prefer turning to their social network (family and friends) rather than public authorities (teachers in school). This type of research is important because it focuses on young people with intellectual disability and their vulnerability online as well as the development opportunities for Internet-related support. [ABSTRACT FROM AUTHOR]

Though research on inclusive education makes up a considerable part of the special education research field, very few studies have explored how beliefs and ideas about inclusion and exclusion emerge in general media discourses of education and schooling. Using positioning theory as a theoretical framework, this paper explores public discourses on inclusionary/exclusionary schooling by analysing newspaper articles about a segregated type of school in Sweden for pupils with intellectual disability. Seventy-nine articles meeting the criteria for inclusion and published between 1 January 2010 and 31 December 2018 were identified in the two national daily newspapers of Sweden. Four general storylines and associated positions were identified. The four storylines, together and in different ways, construct a rationale for a segregated school system based on notions such as equality, equity, justice, and democracy. We argue that this rationale is embedded within a discourse that we propose calling a discourse of 'segrequality'. Education plays an important role in the development of an inclusive society and inclusive education is a goal supported by many countries and their school systems. Even so, the percentage of pupils educated in segregated settings have increased in many countries in Europe. This article explores how Swedish news media portrays education for pupils with intellectual disability. The research found a dominant rationale where segregated educational settings are seen as essential. Four main narratives were identified. All of them, in different ways, argue for the importance of segregated education in order to give every child an education based on notions such as equality, equity, justice, and democracy. Researchers of inclusion are suggested to take a more active part in a public discussion of education as well as in policy-making on both national and local levels. [ABSTRACT FROM AUTHOR]

This paper draws together empirical work that has been produced by the authors in two different autistic spaces: the Swedish magazineEmpowermentproduced by and aimed at adults with autism, and English-speaking autistic communities online. While the two points of data collection are quite different, there are important points of commonality that enable us to explore central issues concerning autistic and neurotypical space and the meanings assigned to these in different contexts. The paper aims to introduce the notion of social geographies of autism, based on talks among adults with autism and a social movement to promote autistic identities, giving examples from our previous work that has spanned both online and off-line spaces. Key issues discussed in the paper include a focus on autistic political platforms and the carving out of both social and political spaces for people with autism. In doing so, neuro-separate and neuro-shared spaces must be negotiated. [ABSTRACT FROM PUBLISHER]

The paper explores how disabled girls with Personal Assistants (PA:s) in a Swedish context constitute themselves as subjects in relation to intersecting meanings of age, gender, space, time and disability. The results illuminate the importance of social spaces and social relationships for the girls' forming their sense of selves. Similar to ablebodied girls, disabled girls' transition into adulthood can be viewed as a yoyo-transitions, entering and exiting different adult positions several times. Unlike ablebodied girls, they enter adult positions not commonly associated with youths, such as work leadership positions in relation to adult employees, such as the adult PA. This implies that they to some extent manage their own process of becoming an adult. Our findings stress the importance of recognition and awareness of disabled girls transition to adulthood as different not pathological to nondisabled girls', where consideration is taken both to individual needs and preferences of female assistance users. All girls need to develop their sense of themselves to become women Disabled girls with personal assistants find it difficult to live ordinary lives as girls without the support of external personal assistants With the help of personal assistants disabled girls can participate in the places and with the people they choose themselves The relationship with the personal assistant put demands on the disabled girl to become a woman faster than abledbodied girls, in the same time it can hinder the girl's development into a woman It is important for practioners and policymakers to recognize the dual role of personal assistants in disabled girls lives [ABSTRACT FROM AUTHOR]

The purpose of this article is to analyse how humour and narratives about humour are used in a natural group of adults with Asperger’s syndrome. Narratives about humour and use of humour in the group are analysed from a discursive psychological perspective, informed by insights from both disability studies and critical autism studies. The setting of the research is ethnographic fieldwork in an educational setting in Sweden. In the paper, I show the use of three storylines among a natural group of people with autism (PWA) when talking about humour: the storyline of humourless PWA that dominates within Swedish society; and two alternatives, a storyline of alternative humour among PWA and another storyline in line with the social model of disability, of neurotypical humour or disabling humour. When invoking these two alternative storylines, PWA challenge both the humourlessness storyline and the lack of social accessibility within mainstream neurotypical settings. [ABSTRACT FROM AUTHOR]

Based on a longitudinal case study of the work offered by a Swedish sheltered work organization that can be regarded as 'dirty', in the sense that it stigmatizes those people that do it, in this paper I analyze how 'dirty work' can be seen as an important yet so far neglected source of the social construction of disability. Specifically, the aim of the paper is to suggest how an individual can become a 'disabled person' by doing dirty work. By working on 'tainted tasks' people (irrespective of their mental or physical condition) may come to be regarded and even officially labeled as 'disabled', i.e. incapacitated and impaired for any 'normal' and 'clean' character of work. [ABSTRACT FROM AUTHOR]

A disability reform came into force in Sweden in 1994 which emphasises the importance for disabled people to increased autonomy and self determination in everyday life. Interviews with disabled women and men have shown that while there are those who, because of the legislation, have increased control in their everyday living, there are also those who in no way have benefited from this reform. Some of the disabled participants have not even heard of the legislation before the time of the interview. They are in a situation that they require support, which they do not have, in order to apply for services of their choice and, if necessary, appeal against 'negative' decisions with regard to the applied for services. The paper concludes with a discussion about the Janus-faced nature of individual rights. [ABSTRACT FROM AUTHOR]

This paper is based on a qualitative study dealing with societal constraints with regard to womanhood for physically disabled young women in Sweden. The findings show that the young women are subjected to stereotyped views on what having an impairment involves and have to deal with certain normative criteria of what constitutes womanhood. Despite being 'children' of their time and culture, i.e. rejecting the traditional subservient role of 'the disabled' and of women generally, the young women yearn for the pursuing of tasks, such as caring for children and the home, closely linked to the traditional role of (non-disabled) women. It is argued that this can be understood as a means of counterbalancing an early acquired role of passive recipient. Alongside a positive identification with the group of the disabled', the interviewers strive towards being seen as something other than disabled, i.e. as women. [ABSTRACT FROM AUTHOR]

This study examines disabled people's everyday experience of social exclusion in relation to the rapid growth of digital technologies in everyday practices. It highlights the relationships between the growing theoretical apparatus on how society changes with new digital technologies, and theories about how this might lead to new disabling barriers in the everyday lives of disabled people. To better understand disabled people's everyday experiences of social exclusion in the digital age, it brings together insights from two different fields: digital technology, mainly in digital social science and digital humanities; and disability studies, with a focus on the digital divide. The study draws on empirical observations, photographs and interviews with adults with various disabilities in Sweden, and analyses their everyday experiences with the help of a theoretical framework. To improve participation, it is critical to understand disabling barriers in a digital society. By bringing together digital technology and disability studies, it is possible to understand day-to-day contexts where there is potential for the digital divide to grow, especially for disabled people. Digital technologies designed for use in day-to-day life need to be more inclusive, and the barriers they create for individuals need to be understood before they are implemented. Digital technologies can construct disabling barriers in mundane contexts, even in some non-digital contexts where there is digital technology in the back-end, as for example, the internet of things. [ABSTRACT FROM AUTHOR]

The article concerns the Swedish support system's legal discourse, and investigates the rationale for excluding people over the age of 65 from services that younger people with disabilities may obtain. Data consist of government texts and court decisions under the Severe Disability Act about services for people over the age of 65. It was found that little in the legal discourse concerns the needs and rights of older people, and the general belief is that the Severe Disability Act is primarily intended for children, young people, and adults of working age. Othering of older people was indirectly present in three assumptions about differences in categorizations (people with disabilities vs older people with support needs), needs (active age vs not active age), and comparisons (with people without disabilities of the same age vs with others receiving eldercare). In Sweden, as in many other countries, the support system excludes older people with disabilities from some services, using a division between the categories 'people with disabilities' and 'older people'. The legislation that governs the support system communicates the message that older people with disabilities have different needs as compared to non-old people with disabilities. Justice for non-old people with disabilities is to have similar living conditions as people without disabilities of a similar age, and justice for older people with disabilities is to have similar living conditions as others who receive eldercare. The support system of Sweden rests on the assumption that disability after retirement age is caused by the process of ageing. People who grow old with experience of being part of disability movements may establish new identities as older people with disabilities, and challenge the present order. [ABSTRACT FROM AUTHOR]

This paper describes and analyses a community of disabled people in Sweden that use an online forum to discuss personal assistance issues. The forum is a community of practice (CoP) that has its roots in everyday living with personal assistance. The contributions to the forum were studied over a 4½ year period, including a total of 2755 postings from 146 persons. The levels of the CoP learning system were analysed using the FACE tool, which examines function based on attitude, control and enabling. The results indicate that a learning system was established within the CoP that made it possible for disabled people to complement, confront and counterbalance the influences of existing learning systems, theories and methods of professionals in the area of personal assistance. [ABSTRACT FROM AUTHOR]

There has been a striving in Sweden, ideologically and legally, since the 1960s to develop and extend citizenship to persons with learning disabilities. This article had the purpose to capture and describe how persons with learning disabilities conceive citizenship and opportunities to participate in the societal arena. Twenty-three persons with learning disabilities were interviewed two times. Qualitative analysis focused on three themes: areas of interest, voting and significant persons. The analysis displayed that the informants' conceptions about citizenship differed in relation to environmental contexts. Significant persons are discussed as having considerable importance when exercising citizenship. [ABSTRACT FROM AUTHOR]

In the 1970s, grassroots disability movements in many countries changed the thinking around disability and disability politics. Nonetheless, they were also part of larger political upheavals in the western world. How were they inspired by the socialist, feminist, and gay and lesbian movements? In addition, how did they relate to non-disabled allies? Organisations in Denmark and Sweden are investigated and compared to early disability-rights movements in the United Kingdom. Independently of each other, all groups developed materialist models, although only in Sweden and the United Kingdom did this lead to a linguistic distinction between 'impairment' and 'disability'. Danish activists would rather use provocative language, while developing a social understanding of disability. They were also the only ones to discuss gender and sexuality. There are more similarities than differences between the movements, although the Danish specificities contributed to improvements in how Danes with disabilities can develop a positive sex life. In the 1970s, new political ideas grew about ways of living, equality between the sexes, gay and lesbian rights, and sexual freedom. New groups started to talk about how to understand disability. This article investigates whether the new disability groups in Denmark and Sweden talked about these ideas and whether they involved non-disabled people. Danish and Swedish disability groups are compared to early disability rights organisations in the United Kingdom. The Danish and Swedish disability groups were more open to non-disabled members than groups in the United Kingdom. The article also found that the Danish group discussed sexuality a lot. In Sweden and the United Kingdom, the disability groups did not talk about sex at all. [ABSTRACT FROM AUTHOR]

This article analyses the claims of contemporary disability rights activists mobilising in a context where de facto secondclass citizenship co-exists with legal and political declarations about the rights of disabled people. As an empirical case, it focuses on the blog 'Full Participation. Now', which was initiated by disability rights activists in Sweden. Drawing upon citizenship research, the article points to the tensions and dilemmas featuring the bloggers' demand for participation and equality, as well as the challenges relative to their struggle. Although the bloggers formulate contrasting arguments, the article highlights that the activists share a common aspiration for 'full citizenship'. [ABSTRACT FROM AUTHOR]

The aim of this article was to explore how users experienced and managed personal assistance from family members who are employed as personal assistants. Seventeen users of personal assistance provided by one or several family members, often in combination with external personal assistants, participated. Thematic qualitative interviews were conducted. The participants were between 19 and 58 years old, and were living with various impairments: mobility, sensory and/or learning disabilities. The results showed that personal assistance from family members could both promote and be a barrier to disabled people's control over their own lives and participation in society. It became evident that the situation could have both advantages and disadvantages for both parties, which puts the focus on the interdependency between the participants and their family assistants. However, the results also points to a potential risk that the welfare state (re)passes its responsibilities back on to disabled people and their families. [ABSTRACT FROM AUTHOR]

Major shifts in funding, demography, personal expectations and the rise of a global disabled people’s movement require new and creative solutions to the choices and rights agenda into the twenty-first century. Direct payments and the individual employment of personal assistants is one clear and recognised path to independent living. However, there have been some reservations about the nature, process and impact of the broader personalisation agenda more generally within which direct payments and personal budgets are located. Some commentators point to the loss of the collective impulse in personalised approaches – ideas that were central to the development of the independent living movement and its founding principles. Some countries have seen the rise of collective responses to direct payment developments. This is explicable in terms of a suspicion of individualist underpinnings of personalisation coupled with a collective vision of social life. This article is based on an exploratory study of collective approaches in the field of direct payments where choice and social solidarity are being combined. Drawing on developments in Sweden, England and Wales, the article aims to inform possible future debates about direct payments and cooperative approaches and argues that greater user-control is not inimical to enhanced collective action. [ABSTRACT FROM AUTHOR]

This study involves a mobility device with relevance for health and well-being for severely disabled persons. The purpose of this study is to examine some of the geographical, innovative and existential implications of the performance of place through mobility that the AKKA-board produces for severely disabled people. What does mobility and place mean in terms of supporting human skills that are being performed with the help of the AKKA-board? It is concluded that mobility in terms of a self-controlled movement is connected to enabling individual decision-making, independence and well-being. [ABSTRACT FROM AUTHOR]

The present article addresses different perspectives on the body in relation to conceptions of normality. It shows how a body perspective can be taken into account from an individual perspective without losing a structural perspective. This is accomplished using the phenomenological conceptionsthe lived bodyand the body assituated. This article is part of a sociological qualitative interview study, focusing on disability, identity, and gender, and specifically on conceptions of the body and gender, as experienced by Swedish young women labeled as having an intellectual impairment. [ABSTRACT FROM AUTHOR]

This study introduces how technology and humans are part of relationships that influence agency among people with disabilities. It aims to focus attention on the use of, and access to, information and communication technology (ICT), and agency among youths and adults with intellectual disabilities. The study draws on empirical research conducted with youths and adults with intellectual disabilities, as well as staff at a day centre. It shows that by drawing upon interests, previous experiences, and cooperating in ICT activities the participants’ agency changed. Also, it shows how disability is relational and how it can be influenced by ICT. An interdisciplinary approach is adopted to interpret the findings and to explore: How do people of different ages with intellectual disabilities experience the use of ICT in their everyday lives? Are people with intellectual disabilities able to influence their level of activity by using ICT? And if so, in what ways? [ABSTRACT FROM PUBLISHER]

There is an aspiration and policy within the European Union to fully involve persons with disabilities in the community; this implies an opportunity to gainful employment. A large percentage of disabled persons remain unemployed despite this policy, especially persons with mental health problems. This study aims at investigating how people with mental health problems and caseworkers in different agencies experience the vocational rehabilitation process from an interagency collaboration perspective. The study reveals a number of hindering factors portrayed and discussed in six themes - the time available for rehabilitation, management, new ways of working, absence of an actor, continuity and consensus - and also tables the implications for interagency collaboration in the field of vocational rehabilitation. [ABSTRACT FROM AUTHOR]

Intervention studies show that if children with disabilities play motion-controlled TV and computer games for training purposes their motivation increases and their training becomes more intensive, but why this happens has not been explained. This article addresses this question with the help of ethnographic material from a public project in Sweden. By applying interactional constructionism to detailed instances of play situations, the article specifies the social dynamics as well as identificatory attractions of these games for children with disabilities. [ABSTRACT FROM AUTHOR]

Results from analyses of interactions in ‘user-centred’ meetings within the Swedish rehabilitation sector are reported. Transcripts of team meetings are used to discern situations in which dilemmas of self-determination versus paternalism may possibly need to be treated when the ‘user’ with impairment is to exercise his/her social citizenship. The analyses illustrate how the liberal ideal of self-determination makes certain demands on the ‘user’. These demands are categorised as ‘physical presence’, ‘interpretable voice’, ‘purposeful voice’, ‘sincere voice’ and ‘realisable voice’. It is argued that dilemmas of self-determination are impossible to avoid completely. To deal with the complexity of implementing self-determination, it is important to try to adjust the preparations and the organisation of the meetings, increase user control of services provided, combine individualised support with collective and political action, and allow expressions of different models of democracy. The possibility of appreciating interdependence and justifying paternalistic actions also needs to be acknowledged. [ABSTRACT FROM AUTHOR]

Theatre for and with people with intellectual disabilities has gradually become a more frequent and popular work arrangement within the municipal daily activities in Sweden. This article focuses on one of those theatres – Olla – and the aim is to analyse the institutional settings and normative environment surrounding the theatre and the way in which it relates to different institutional rules and expectations. Analytical implications will be drawn against neo‐institutional theory and will show how Olla expresses both an artistic and a therapeutical logic, and that legitimacy is dependent on a loosely coupled formal structure between process and product, art and therapy. These logics are formulated within two different discourses, which leave Olla balancing between being a normalisation project or disability art which puts emphasis on the celebration of difference. [ABSTRACT FROM AUTHOR]

This article attempts to outline the prospects of disabled persons to gain and retain employment within the Information Society by presenting and discussing the results of a labour market policy programme in Sweden based on information technology. The effects of Information and Communication Technologies (ICTs) for unemployed and employed persons with disabilities can be assessed on the micro, as well as on the macro levels. Technological optimism has given rise to expectations about the great potential of ICTs in creating employment opportunities for disabled persons. Technological optimism, however, derives from a deterministic point of view, i.e. ICTs are regarded as an independent variable. This article suggests that ICTs must be regarded as a variable dependent by the economic, social and cultural order. Its effects on disabled persons employment opportunities are not independent by the power relations at a given time. [ABSTRACT FROM AUTHOR]

The article is based on a historical study aiming at analysing the historical determinants for the academic content of the special educational discipline-regarding both ideological attitudes against disability and segregation and more concrete initiatives of action-as it appeared when the expert-function of special education was established during the 1920s and 1930s in Sweden. As the determinants I consider the nineteenth, as well as the twentieth cetury's socio-ideological, educational political and educational philosophical discourses. In order to describe the tendencies in contents I have used the first Scandinavian journal in the special educational field (Hjalpskolan). I have in my discussion been inspired by Michel Foucault's analysis of subtle conditions of power, in the forms of regulations and control mechanisms between the societies 'normal' and its marginal groupings. The essence of the study is that these tendencies are socially constructed within the knowledge tradition of the swedish compulsory school system. Despite their variations they can be classified as follows: a moralizing theme, where the various scientifically coloured arguments for and against segregation are discussed. A religious 'merciful' theme; the genuine human loving compassion with 'the societies least fortunate'. Finally, the sociopolitical theme with focus on socio-economical discussion. [ABSTRACT FROM AUTHOR]

This paper examines participatory arrangements for students with physical disabilities in mainstream education, cooperation between teachers and therapists to ensure that these arrangements are efficient and the organizational prerequisites for such cooperation. The study comprises data obtained from 14 "groups", with each group consisting of a student with physical disabilities aged 9-19 years, their main teacher and the relevant therapists from the local habilitation centre. Data were collected through semi-structured interviews, field observations and a review of relevant documents, including legislation. The results reveal a lack of cooperation between teacher and therapist which results in students with disabilities receiving suboptimal participatory arrangements in school. Differences in the perspectives of the teachers and therapists and in the way they act and perceive their responsibilities were anchored in institutional and societal documents and the distribution of resources. The implications for students with disabilities are discussed. (Contains 2 tables.)