Rannveig Traustadóttir

Stuck in the land of disability? The intersection of learning difficulties, class, gender and religion

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.

Parents with intellectual disabilities : past, present and futures

List of Contributors. Foreword (Steven J.Taylor). Acknowledgments. Introduction (Gwynnyth Llewellyn, Rannveig Traustadottir, David McConnell, and Hanna Bjorg Sigurjonsdottir). PART I FAMILY AND COMMUNITY LIFE 1. Becoming a Mother Becoming a Father (Rachel Mayes and Hanna Bjorg Sigurjonsdottir). 2. Looking Back on Their Own Upbringing (Gwynnyth Llewellyn and David McConnell). 3. Family Within a Family (Hanna Bjorg Sigurjonsdottir and Rannveig Traustadottir). 4. Children and Their Life Experiences (Jytte Faureholm). 5. Understanding Community in the Lives of Parents with Intellectual Disabilities (Gwynnyth Llewellyn and Marie Gustavsson). 6. Citizenship and Community Participation (Brigit Mirfin-Veitch). 7. Parenting and Resistance: Strategies in Dealing with Services and Professionals (Rannveig Traustadottir and Hanna Bjorg Sigurjonsdottir). PART II HUMAN SERVICES ENABLING AND DISABLING PARENTS WITH INTELLECTUAL DISABILITIES 8. Parenting Education Programs (Maurice Feldman). 9. Supported Decision Making forWomen with Intellectual Disabilities (Sue McGaw and Sue Candy). 10. Turning Policy Into Practice (Beth Tarleton). 11. Caught in the Child Protection Net (David McConnell and Hanna Bjorg Sigurjonsdottir). 12. Turning Rights into Realities in Quebec, Canada (Marjorie Aunos, Laura Pacheco, and Katherine Moxness). 13. Supporting Mothers Community Participation (David McConnell and Gwynnyth Llewellyn). 14. Advocacy for Change: The Final Tool in the Toolbox? (Linda Ward and Beth Tarleton). Conclusion: Taking Stock and Looking to the Future (David McConnell, Gwynnyth Llewellyn, Rannveig Traustadottir and Hanna Bjorg Sigurjonsdottir). Index.

Assistance to pupils with physical disabilities in regular schools: promoting inclusion or creating dependency?

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. While it is acknowledged that teacher assistants can make valuable contributions in promoting participation and learning among pupils with disabilities, it is argued that the constant presence of an assistant can result in limited use of the children’s strengths and may possibly create unnecessary or unhealthy dependencies. The findings signify that the education system must align with important stakeholders – the pupils, their parents, and external support services – to identify alternative ways to promote participation and learning of pupils with disabilities in regular schools.

“To Cherish Each Day as it Comes”: a qualitative study of spirituality among persons receiving palliative care

PurposeSpirituality 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.MethodsQualitative 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.ResultsThematic 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.ConclusionsSpirituality 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.

Theoretical perspectives and childhood participation

Abstract The concept of participation is at the centre of the concerns of those occupied with issues of disability. Although commonly used, it is seldom well defined and is conceptualized in different ways by different authors. This paper explores participation by juxtaposing conceptual frameworks of disability and the results of a recent study of school participation of disabled children. We start by outlining important conceptual frameworks in understanding disability, such as the International Classification of Functioning, Disability and Health (ICF) and social perspectives. We then present the study results which reveal participation as a complex interaction between the child and his or her environment where individual aspects interact with contextual requirements of different school settings. Viewed from the findings of this study none of the theoretical perspectives considered entails the level of complexity that is necessary to understand all the aspects of participation of the disabled children i...

Research with others: Reflections on representation, difference and othering

As a feminist qualitative researcher I have become increasingly concerned with doing research with Others. In particular whether we, as researchers, can or should represent members of groups we do not belong to. This article examines who we are in relation to the Others we do research with, who can represent whom, and the complex relationship between the researcher and the researched. The article also outlines some of the methodological, theoretical and ethical issues around representation, difference, and Othering, particularly those raised by feminist researchers. In discussing these issues I draw on fifteen yeas of experience in doing research with Others and speaking for and about Others in my research and writing.

Disability and Gender: Introduction to the Special Issue

Anyone who takes but a brief glace at those who comprise the category ‘‘disabled people’’ has to acknowledge that this is a highly diverse group. Different impairments are only one source of variation. Gender, sexuality, social class and stage of life also create diversity, disabled people belong to all ethnic and racial groups, and live in urban and rural areas of every country and culture of the world. The young field of disability studies has barely begun to explore this diversity. Examination of the intersection of these multiple dimensions of difference is an exciting area of inquiry and a crucially important one in the lives of disabled people, as many of the categories create multiple layers of discrimination and social exclusion. This Special Issue on Gender is part of the new efforts to transform thinking by exploring how disability and gender (as well as other social categories, such as race, class, age and sexuality) operate together to create the experiences of disabled people. Feminist and disability studies are producing new understandings of disability and gender. Fundamentally, these studies interpret disability and gender (and race, social class, age and sexuality) as interlocking categories of experience that affect all aspects of human existance as they simultaneously structure people’s lives. Disability studies and feminist scholarship each have their history and traditions. Both fields are characterized by attention to power relations, social exclusion, oppression and other issues related to marginalization. Although there is a growing body of literature combining feminist and disability scholarship, this is a relatively new development in the Nordic countries as well as elsewhere (Barron 2004, Kristiansen & Traustadóttir 2004, Thomas 1999). Disability and feminist research have many similarities. In fact, since the beginning of feminist studies in the mid-20th century, feminist scholars have theorized and written about many of the issues currently debated in disability studies. A key aspect being the distinction and relationship between sex (the biological) and gender (the social/cultural) which parallel the debates in disability scholarship on the separation between impairment and disability (Briadotti 2002, Oakley 1972, Shakespeare 1996). Here, and in other areas, it

Life histories as counter-narratives against dominant and negative stereotypes about people with intellectual disabilities

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.

Negotiating independence, choice and autonomy: experiences of parents who coordinate personal assistance on behalf of their adult son or daughter

Abstract 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 and Sweden, carried out between 2012 and 2013. The overall study focused broadly on the implementation of Article 19. This article, however, reports findings based on a particular group of participants within the larger study: non-disabled parents who coordinate personal assistance schemes for their adult son or daughter. The article examines the various ways in which the parents, the majority of whom were mothers, negotiate principles of independence, choice and autonomy for their adult son or daughter who requires intensive support, including assistance with communicating. The aim is to explore, in the context of the Convention and the principles of the independent living movement, how to acknowledge and conceptualise personal assistance schemes that require another person to manage on behalf of the user.

Perspectives on Childhood and Disability

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.