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Journal article

'It's my life' autonomy and people with intellectual disabilities

Authors:
BJORNSDOTTIR Kristin, STEFANSDOTTIR Guorun V., STEFANSDOTTIR Astriour
Journal article citation:
Journal of Intellectual Disabilities, 19(1), 2015, pp.5-21.
Publisher:
Sage
Place of publication:
London

This article discusses autonomy in the lives of adults with intellectual disabilities. The article draws on inclusive research in Iceland with 25 women and 16 men and employs ideas of relational autonomy from the perspectives of the Nordic relational approach to disability. In this article, the authors examine autonomy in relation to private life, that is, homes and daily activities. The article demonstrates how practices have improved with time and seem less paternalistic. However, the article also demonstrates that the assistance people with intellectual disabilities receive in their homes often has institutional qualities, and they are often met with belittling perspectives from staff and family members. Furthermore, many did not have access to important information needed to develop individual autonomy and independence, including making their own choices. The research findings suggest that people with intellectual disabilities can with appropriate support develop individual autonomy and make their own choices. (Edited publisher abstract)

Journal article

Sterilization, intellectual disability, and some ethical and methodological challenges: it shouldn't be a secret

Authors:
STEFANSDOTTIR Guarun, HREINSDOTTIR Eyglo Ebba
Journal article citation:
Ethics and Social Welfare, 7(3), 2013, pp.302-308.
Publisher:
Taylor and Francis
Place of publication:
Abingdon

This article discusses the experience of an Icelandic woman with intellectual disabilities who was sterilized and how she has dealt with it. It also reflects on some ethical and methodological issues that arise during inclusive life history research. The article is based on cooperation between two women, Eygló Ebba Hreinsdóttir, who was labelled with intellectual disabilities when she moved to an institution in Iceland in the 1970s, and the researcher Guðrún V. Stefánsdóttir. The article is based on a recorded conversation between Ebba and Gudrun and the work of the Icelandic women's history group in which both participated for three years. Ebba was sterilized when she was 14 years old but didn't know about the sterilization until she was 27. The article describes the deep emotional impact and how she came to terms with it. (Edited publisher abstract)

Journal article

Normalization fifty years beyond-current trends in the Nordic countries

Author:
TØSSEBRO Jan
Journal article citation:
Journal of Policy and Practice in Intellectual Disabilities, 9(2), June 2012, pp.134-146.
Publisher:
Wiley-Blackwell

The notion and principles of normalisation is a main contribution from the Nordic countries to the development of policies and practices in services for people with intellectual disabilities (ID). The purpose of this paper is to explore the practical developments of these services and policies in the countries where the concept emerged and, in particular, the developments that took place after the turn of the 20th century. These years are of special interest because the countries saw important reforms during the 1990s, regarding both deinstitutionalisation and decentralisation. The aim of the paper is to address the developments that took place after the reform energy decreased and political attention had faded. The comparative analysis is based on research reviews in the 5 Nordic countries. The analysis observed a trend toward larger group homes and congregations, inequality across municipalities, marketisation, 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 article concludes that diverging trends coexist, with improvements going together with significant setbacks. It explores the trends from a political science perspective, noting how they relate to recent shifts in public management and changing drivers of change.

Journal article

Collaborative life history: different experiences of spending time in an institution in Iceland

Authors:
HREINSDOTTIR Eyglo Ebba, STEFANSDOTTIR Guorun
Journal article citation:
British Journal of Learning Disabilities, 38(2), June 2010, pp.103-109.
Publisher:
Wiley-Blackwell

This article describes a life history research project based on cooperation between two women, Eygló Ebba Hreinsdóttir and Gudrun Stefansdottir. It is about the time they spent together in an institution in Iceland in the 1970s, one as a resident and the other as a member of staff. Ebba moved to the institution in 1969 when she was 19 years old. Gudrun started to work at the same institution a few years later when she was 16 years old as a summer girl. After Ebba moved from the institution, they did not have contact for many years, but since 2003 they have worked closely together on this project. The project used photographs from the institution that helped them to recall their memories. The article has two main objectives. The first objective is to reflect on the research cooperation between the two women, how it started and how it has influenced them. The second objective is to reflect on their different experiences. In particular, the article describes the mixed feelings that Ebba has about her life in the institution. Bad memories are mostly connected to the label ?mentally retarded? and memories of being lonely, isolated, angry and sad. However, through participating in this life history project, she has found out it is important to remember the good times also, and that has helped her to forgive and move on.

Journal article

Is my story so different from yours? Comparing life stories, experiences of institutionalization and self-advocacy in England and Iceland

Authors:
HREINSDOTTIR Eyglo Ebba, et al
Journal article citation:
British Journal of Learning Disabilities, 34(3), September 2006, pp.157-166.
Publisher:
Wiley-Blackwell

This paper uses oral history and documentary materials to develop a cross-cultural comparison of the experiences of two self-advocates who spent significant parts of their lives in learning difficulty institutions in England and Iceland. Anne Lewthwaite from England,  and Eyglo Ebba Hreinsdottir from Iceland, born in the same era (1948–1950) researched and recorded their life stories and in May 2004, jointly presented these at an Open University Conference. Their stories bring to life the history of the institutions and the experiences of those who 'spoke up' and challenged the system long before formal self-advocacy groups were established. Alongside this oral history work policy developments in each culture are described and compared to provide context to their life histories. The findings also highlight important similarities and differences between the two cultures in terms of the history of learning difficulty. The women's experience of participating in cross-cultural oral history work is discussed together with the contribution of a comparative approach in furthering historical understanding of self-advocacy.

Book

Women with intellectual disabilities: finding a place in the world

Editors:
TRAUSTADOTTIR Rannveig, JOHNSON Kelley
Publisher:
Jessica Kingsley
Publication year:
2000
Pagination:
303p.,bibliog.
Place of publication:
London

Explores issues affecting the lives of women with learning difficulties around the world, looking at different aspects of life, including work, family, relationships and community involvement. Based on the experiences of women with and without learning difficulties.

Journal article

Understanding resilience in learning difficulties: unheard voices of secondary school students

Authors:
HAROARDOTTIR Sigrun, JULIUSDOTTIR Sigrun, GUOMUNDSSON Halldor S.
Journal article citation:
Child and Adolescent Social Work Journal, 32(4), 2015, pp.351-358.
Publisher:
Springer

This article presents part of the results from the research project of learning disabilities (LD) and success in school. The study investigates the interplay between psychosocial wellbeing and study progress and what works to support and empower students at-risk of school failure and dropout. It entails a group of 270 students in Iceland, all born in 1989, 1990 and 1991. At the beginning of their studies they completed the Youth Self Report. Four and a half years later contact was made with the students participating in the research, to attain information regarding their study progress. The results show that large number of students, or 72 %, who began their learning on an academic study track, had completed their studies at upper secondary school, but only 16 % of students who were at-risk of school failure and began their learning on general study track. Ten students with specific LD who began their learning on general track study, and had performed well in their studies and finished upper secondary education, were selected to take part in qualitative interviews. This article presents that part of the research. The school experience was explored from their perspectives regarding what they considered helpful versus obstructing in their learning situation. Three main themes were identified: (a) struggles regarding problem defining, (b) labelling and stigma, (c) support from a caring person in developing selfworth and resilience. This article offers guidelines to help parents and schools to better support students with LD. (Publisher abstract)

Journal article

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

Authors:
BJORNSDOTTIR Kristin, TRAUSTADOTTIR Rannveig
Journal article citation:
Disability and Society, 25(1), January 2010, pp.49-62.
Publisher:
Taylor and Francis,

This paper explores the contrast between the formal rights to full social inclusion of young adults with learning disabilities in Iceland to and their lived in experiences. The life history data used is presented fully elsewhere, as part of a wider doctoral project by the primary author on the role of cultural factors, gender and identity on young adults with learning disabilities. In this paper feminist intersectional theory is used to analyse the factors of gender, class and religion as well as those of disabilities. A framework based on five themes, ((1) historically and geographically contextual, (2) socially constructed, (3) power relationships that operate at, (4) the macro-social structural and micro-social psychological levels and are (5) simultaneously expressed) that characterise disability, class, gender and religion as interrelated systems of oppression is detailed by the authors in the bulk of this article’s text. The complex political, economic and ideological forces at play are discussed. This research demonstrates how the young adults with learning disabilities who participated as research collaborators in this study denied their devalued social construction and attempted to affirm themselves as competent social actors, thereby challenging existing social hierarchies.

Book Full text available online for free

Access to specialised victim support services for women with disabilities who have experienced violence. Comparative Research Report: Austria, Germany, Iceland and United Kingdom

Authors:
WOODIN Sarah, SHAH Sonali
Publisher:
University of Leeds. Centre for Disability Studies
Publication year:
2014
Pagination:
59
Place of publication:
Leeds

This comparative report presents the results of research into violence against women with disabilities for the project 'Access to specialised victim support services for women with disabilities who have experienced violence', which was funded by the EU Daphne III programme. It is based on research which took place in Austria, Germany, Iceland and United Kingdom between 2013 and 2014 and involved 187 women with disabilities (106 women in focus groups and 81 women in individual interviews). The research included women with mobility and sensory impairments, women with intellectual impairments, women with mental health conditions and women with multiple impairments. Specialised service providers assisting women who have experienced violence also took part in this study (602 responses to an online survey and 54 individual interviews with representatives from services). Research findings are discussed in the following areas: perceptions and understanding of violence; experiences of violence and support over the life course; women's knowledge about their rights; knowledge about use of services; experience of barriers; helpful aspects of support. Suggestions for improvement and good practice are also included. The report highlights the need for support services that recognise the type and extent of violence against disabled women need to be developed, and for both mainstream and specialised strategies to be pursued. (Edited publisher abstract)

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