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Using an intersectional lens, this study analyses data from a nationally representative sample in Iceland, examining violence among marginalized groups of different social locations. The results highlight the precarious position of disabled women and show a significant increase of risk of violence with each marginalized social location women inhabit. Results illustrate how precarity and exposure increases for multiply marginalized women, demonstrating the importance of considering the social dimensions of violence. The article argues for the importance of advancing critical dialogue and research on violence, using an intersectional frame and including factors such as disability, gender, sexual orientation, and financial strain.

Ciara Brennan and Rannveig Traustadottir provide an account of research carried out in three Nordic welfare states, Iceland, Norway and Sweden, which explored the challenges of implementing Article 19—Living independently and being included in the community, of the United Nations Convention on the Rights of Persons with Disabilities (CRPD 2006). These States have historically been regarded as ‘leaders’ in the area of deinstitutionalisation and community living. The chapter explores how the human rights approach of the CRPD ‘fits’ with the culture of the Nordic welfare states. Brennan and Traustadottir identify a Nordic ‘welfare culture’ as the main obstacle to the implementation of Article 19 of the CRPD in Iceland, Norway and Sweden.

This paper adopts a critical theory perspective, aligning itself with a growing body of critical disability research in Iceland. It draws attention to the importance of ensuring that the rights of disabled people to autonomy and independence enshrined in the CRPD are respected and upheld in the implementation of all service models, including “traditional” services. The paper draws on 22 interviews with disabled people and service providers in Iceland. Both groups reveal that they perceive there to be a limit to the autonomy of the user embedded in the concept of services provided by public authorities. The findings are examined in a theoretical context, concluding that the concept of services must be redefined to fully include the perspectives of disabled people if the autonomy and independence envisioned in the CRPD is to be achieved, particularly until such time that personalized services are realized for all.

Despite the avowed aims of the Icelandic legislation to provide family-centred and inclusive services, families raising disabled children commonly express their experiences of fragmented services provided more on the terms of the service providers than the users. This article is based on data derived from an on-going qualitative multi case-research in three municipalities in Iceland. The aims of the paper are 1) to identify the main contradictions that explain tensions and dilemmas within the service system as experienced by the parents, and 2) to suggest potential solutions for improving practices in accordance with family-centred inclusive policy and enhanced user participation. The cultural-historical activity theory was applied as an analytical framework. Three activities central to the wellbeing of the children and their families were identified as the unit of analysis, and contradictions within the activities were located and classified by following the expansive learning theory. Based on our findings we propose Edwards’s three ‘gardening tools’ of relational practices as innovative and appropriate concepts for the necessary changes needed. By utilising these tools, the disabled children and their families are brought to the forefront and the professionals enhance their expertise in partnership with all stakeholders.

The right to vote is a fundamental right of citizenship in democratic nations, and participation in elections in one of the most important acts undertaken by citizens. Although these rights are guaranteed to all citizens, international research shows that disabled people are widely excluded from participation in elections. Disabled people are less likely to vote than non-disabled people and often encounter various obstacles when they try to participate in elections. This article discusses the voting participation of disabled people in consideration of the international research. The main barriers that disabled people encounter in the voting process will first be outlined. This will be followed by questions concerning the effects these obstacles produce, not only for disabled citizens, but what this means overall for the health of democracy and democratic institutions when a portion of the citizenry encounter serious obstacles concerning their basic civil rights. Icelandic research in this field is extremely limited and no systematic statistical data exists on the participation of disabled people in elections, or politics in general, in this country. Based on data drawn from sources from two of the largest disabled people’s organization in the country, the focus here is on the experiences, circumstances and opportunities for disabled people to participate in elections in the country. The findings draw attention to the obligations of the state to promote and ensure the participation of disabled people in politics and public life in light of the recent ratification in Iceland of the UN Convention on the Rights of Persons with Disabilities (CRPD).

Article 19 of the UN Convention on the Rights of Persons with Disabilities requires states to provide personal assistance services. This article is based on qualitative research in Iceland, Norway ...

The history of intellectual disabilities is largely a story of discrimination and social exclusion portraying people with intellectual disability as abnormal and inferior. This article describes a particular methodological approach to inclusive life history research with a small group of women with intellectual disabilities in Iceland. The article documents how, through a four-year collaborative research process, the life histories became counter-narratives to dominant historical beliefs and stereotypes. In addition to the personal empowerment of the women and the construction of a collective memory, this project has also resulted in public sharing of their stories through speaking up and giving presentations, and thus potentially also changing the historical memory.

This paper outlines the reported discrepancies between the aims of the welfare services in Iceland and the experiences of parents raising young children with intellectual disabilities. Prevailing views on disability and service delivery were also considered. A multi case study design was employed to reflect the situation in different parts of the country. Families of eight children with intellectual disabilities and professionals in three different municipalities formed the cases. The findings reveal a high convergence between the three cases with variations based on individual experiences rather than geographical location. Overall, parents praised the preschools but experienced support services often as fragmented and uncompromising. Particular components of the services were consistently regarded as hard to reach and not in accordance with the needs of the family. Culturalhistorical activity theory is introduced as a beneficial framework for further study and system improvement.

Article 19 of the United Nations (UN) Convention on the Rights of Persons with Disabilities requires states to ensure that persons with disabilities have access to a range of support services, including personal assistance. The Convention is an agreement between state parties and the UN. However, in practice, disability services are often implemented at the local level. Drawing on the findings of qualitative research in Iceland, Norway and Sweden, this paper examines a paradox whereby states commit to ensure access to support services, but decentralize responsibility to autonomous and independent local governments. A multi-level governance framework is applied to analyse the findings of qualitative inquiry with policy-makers, local government officials and leaders of independent living organizations in all three Nordic countries. A multi-level analysis highlights the tensions and contradictions between decentralization and human rights commitments. CC BY 4.0

A fundamental approach of theology as practiced within the palliative setting is care for the whole human being, with particular focus on spirituality and the spiritual dimension. Theology and medicine come together in palliative care in which the spiritual aspect is an important component together with the physical, psychological, and social. This article is based on a mixed methods study of spirituality among persons receiving palliative care. Findings revealed the importance of spirituality and its multidimensional elements by which spirituality was perceived as a complex phenomenon relating to religious and non-religious aspects of human life. Theological reflection based on the present findings indicates that a sharp distinction between the concepts of religion and spirituality is not beneficial. It also reveals the significance of the spiritual dimension and that theology has an important role in creating a deeper understanding of this complex part of human existence. Spiritual needs, expressed in v...

This study explores existential and spiritual concerns from the perspective of people receiving palliative care. It examines the meaning of these concerns, their influence on people's lives and investigates the connections between them. In-depth qualitative interviews were conducted with ten persons. Findings reveal existential and spiritual aspects as interconnected and an integral part of the participants' everyday existence. It concludes with a call for a better understanding of these phenomena in the palliative care context.

Disability Studies is a new interdisciplinary academic field that has developed over the past two decades. The aim of this paper is to introduce Disability Studies in Iceland including its roots, context, development, main characteristics and future prospects. Icelandic Disability Studies has developed in Nordic and international contexts and shares theoretical origins and location in the academic landscape. Early beginnings of Disability Studies in Iceland can be traced back to the mid-1990s but the first and only academic programme in Disability Studies was launched at the University of Iceland in 2004, providing this young field with an institutional base and academic recognition. Main characteristics of Disability Studies in Iceland are its growing interdisciplinary nature and close cooperation with disabled people and the disability movement, parents, professionals and policy-makers. Today, Disability Studies is a well-established field within Icelandic academia and operates in the context of extensive international ties and connections.

Spirituality is one of the main aspects of palliative care. The concept is multidimensional and encompasses the existential realm as well as value-based and religious considerations. The aim of this study was to explore spirituality from the perspective of persons receiving palliative care and examine their experience of spirituality and its influence on their lives and well-being.Qualitative interviews were conducted with ten persons receiving palliative care from Palliative Care Services in Iceland. The interviews were tape-recorded, transcribed and analysed. The study is in the field of practical theology and used the theoretical approach of hermeneutical phenomenology.Thematic analysis found that the spiritual dimension was of significance for the participants who understood it as a vital element connected to seeking meaning, purpose and transcendence in life. Religious and non-religious aspects of spirituality were expressed including strong spiritual components of family relationships, the meaning of God/a higher being and spiritual practices which served as a key factor in giving strength, activating inner resources and motivating hope. Nine of the participants expressed their spirituality as faith.Spirituality was experienced broadly as an important dimension of how participants lived with terminal illness. Religious and non-religious characteristics were recognised which reveals the complex nature of the phenomenon. Faith was a significant part of the participants' spirituality indicating the importance of attending to this aspect of palliative care. The study suggests the potential contributions of theological approaches which are relevant for palliative care research and practice.

The authors discuss recent developments in services for people with intellectual disabilities (ID) in the Nordic countries. They note that all of the countries saw important reforms during the 1990s, regarding both deinstitutionalization and decentralization. However, they posit that the litmus test of the reforms is not what happens during reform years, but after the reform energy decreases and political attention fades. Thus, developments after 2000 are of particular interest. The comparative analysis is based on research reviews in the five Nordic countries. The analysis observed a trend toward larger group homes and congregations, inequality across municipalities, marketization, and new public management, but also an increasing emphasis on consumer rights and the use of the personal assistance scheme in services for people with ID. The authors conclude that diverging trends coexist, with improvements going together with significant setbacks. They explore the trends from a political science perspective and, in particular, note how they relate to recent shifts in public management and changing drivers of change.

This article discusses the discrepancy between formal rights to full social inclusion and the lived experiences of young adults with learning difficulties. It draws on inclusive life history research in Iceland and employs intersectional theory to study the social participation of young adults with learning difficulties. In an attempt to understand the complex political, economic and ideological forces that hinder the actualisation of their formal rights the intersection of disability, class, gender and religion in the production and reproduction of existing social hierarchies is examined. The article demonstrates how the research collaborators resisted their devalued social construction and attempted to create and affirm themselves as competent social actors.

OBJECTIVE. We investigated the factors that facilitate or hinder school participation of students with physical disabilities and explored the interaction of those factors. METHOD. The study used a mixed-methods design that used qualitative and quantitative data. Qualitative data were gathered on 49 participants: 14 students, 17 parents, and 18 teachers. Data analysis was based on grounded-theory procedures. Quantitative data were gathered on 32 students using the School Function Assessment. RESULTS. The characteristics of each school setting influenced students’ participation. Some settings presented more challenges than others, particularly those with open spaces and limited structures such as the school playground and field trips. Possibilities of student participation decreased with increasing numbers of risk factors, but the interaction between factors was equally important. CONCLUSION. To promote school participation of students with disabilities, occupational therapists should consider a confluence of child, environmental, and task factors rather than focusing on individual aspects.

Drawing on the perspectives of pupils with physical disabilities, their parents and teachers, this study explored the adult support provided to pupils with physical disabilities in regular schools. Data were collected through observations at schools and qualitative interviews. In all, 49 individuals participated in this study: 14 pupils with physical disabilities, 17 parents, and 18 teachers. Six themes emerged that characterised the provision of assistance: (1) roles and responsibilities; (2) quantity and content of support (3) proximity to the pupil, (4) school priorities, (5) independence and autonomy of the child; and (6) the relationship between the teacher and the assistant. An over‐reliance on adult support was found for some pupils and contexts, while this support appeared to be under‐utilised or ineffectively delivered in other situations. Lack of modifications of the traditional curriculum, teacher instructions, and educational activities increased the pupils’ need for adult support in school. W...

Background Given appropriate supports mothers with intellectual disabilities can successfully raise their children. Historically, this support has been provided by extended family members while support from formal services is a recent development. This paper examines the role of extended family members in assisting mothers with intellectual disabilities to keep and raise their children. Methods Qualitative methods were used to study three generations of mothers with intellectual disabilities and their children over half a century (1950–2005). Eighteen mothers were key participants in this study. Data were collected through participant observation and in-depth interviews with mothers, their children, partners, extended family members and professionals. Results Despite the development of formal support services, the importance of assistance from extended family continues to be crucial in determining whether mothers with intellectual disabilities retain custody of their children. In-depth examination of the support offered by family members reveals that women relatives referred to as ‘mothers’ played the most important role. The ‘mother’ was a non-disabled woman who provided practical and emotional assistance and advocated on behalf of the disabled mother and her family. If successful, the ‘mother’s’ advocacy was found to play a crucial role in facilitating the maintenance of the custody of the children by their birth mothers. Conclusions This study indicates that provision of formal services has changed the nature of help needed from extended family members with advocacy and assistance in dealing with the service system becoming increasingly important.

Palliative care focuses on improving quality of life (QoL). This study examined the feasibility of the Icelandic version of a provisional European Organisation for Research and Treatment of Cancer (EORTC) measure of spiritual well-being (SWB), and explored the relationship between SWB and QoL for palliative care patients in Iceland. Instruments from the EORTC were used: the provisional measure of SWB, which was undergoing pilot-testing in Iceland, and the EORTC QLQ C15-PAL. The correlation between scores was examined and descriptive statistics were used. Structured interviews explored feasibility. Thirty persons participated with average age 72 years. Belief in God or a higher power had the mean 3.33 on a 1-4 scale and the mean for overall SWB was 5.73 on a 1-7 scale. The mean score for global health/QoL was 59.4, physical functioning 48.5 and emotional functioning 78.9 on a 0-100 scale. Overall QoL was positively correlated with SWB showing r(30) = 0.386, P = 0.035. The participants found that answering the provisional EORTC QLQ-SWB prompted an emotional response and took the opportunity to discuss the subject. The provisional SWB measure was found relevant for the Icelandic context, and the study indicates that SWB and QoL are closely connected.

This book grew out of the Nordic Centre of Excellence: REASSESS, Reassessing the Nordic Welfare Model.1 Over a period of five years (2007–2012) leading researchers from all the Nordic countries worked together in ten research strands with the aim of investigating and critically analysing whether the Nordic welfare model has the ability to renew itself under changing external conditions. One of the strands in REASSESS focused on disability. Within this strand, a group of Nordic researchers met and discussed ideas and experiences with the overall aim of identifying, sharing and developing research about the lives of disabled children and youth and their families. This book is the result of that collaboration. It provides comprehensive research-based information about the current knowledge regarding disabled children and youth in the Nordic countries. The approach adopted in the book seeks to understand the experiences of the children from their own perspectives. We regard children as a social group, whose experiences are structured by the wider society and culture and whose behaviours are controlled and directed by adults through policies and practices, such as state interventions in welfare, health and education. Although disabled children’s experiences are the primary focus we also recognise the importance of their families and other caregivers, both as the context in which the children live and as providing important information about their conditions and experiences, particularly when children are unable to articulate their own views.

Historically, studies on disabled children have been characterized by narrow and limited ways of looking at their lives. Some historians have even characterized the study of childhood and disability as ‘a legacy of neglect’ (Safford & Safford, 1996, p. 1). When researchers have included disabled children they have typically been preoccupied with impairment, vulnerability, service use and the ‘burden’ of presumed dependency, at the expense of a more nuanced account of their everyday lives and identities (Avery, 1999; Davis, 2004; Shakespeare & Watson, 1998). The voices of the children themselves have frequently been excluded and research has, instead, highlighted the perspectives of parents and professionals. The result is that, until relatively recently, the lives of disabled children and youth have largely been seen through the eyes of adults. Over the past decades, however, there has been a notable increase in research that includes the views and perspectives of disabled children and youth, providing new insights and understandings of their lives and experiences (Asbjornslett et al., 2013; Connors & Stalker, 2003; Egilson, 2014; Egilson & Hemmingsson, 2009; Einarsdottir, 2007; Stalker, 2012; Watson et al., 1999; Ytterhus, 2012). This development has coincided with and been inspired by new approaches to the social studies of childhood (James & Prout, 1997), the emphasis on social and cultural understanding of disability within disability studies (Shakespeare, 2013) and a growing human rights perspective with regard to both children and disabled people.

Accessible Summary • Many people with learning difficulties want to tell the stories of their life and have done so in collaboration with academic researchers. • Life histories of people with learning difficulties are a good way to learn about self-advocacy. Life histories can tell us about how self-advocacy began and the support people need to be self-advocates. • Tom Allen lived in institutions for 60 years. His life history describes how he could speak up about his wishes, the people who helped him speak up and how he was able to move out of the institution.

Article 19 of the UN Convention on the Rights of Persons with Disabilities requires statesto ensure that disabled people can choose where and with whom they live with access to a rangeof services including personal assistance. Based on qualitative research of the implementationof Article 19 in Nordic countries, this paper focuses on Sweden, which was at the forefront ofimplementing personal assistance law and policy and has been the inspiration for many Europeancountries. Instead of strengthening access to personal assistance, this study found that since theSwedish government ratified the Convention in 2008, there has been an increase in the numbers ofpeople losing state-funded personal assistance and an increase in rejected applications. This paperexamines the reasons for the deterioration of eligibility criteria for accessing personal assistance inSweden. The findings shed light on how legal and administrative interpretations of “basic needs”are shifting from a social to a medical understanding. They also highlight a shift from collaborativepolicy making towards conflict, where courts have become the battleground for defining eligibilitycriteria. Drawing on the findings, we ask if Sweden is violating its obligations under the Convention. CC-BY 4.0