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This book provides the first comprehensive exploration of the issues affecting the lives of women with intellectual disabilities. Women from all over the world have collaborated to write about their lives, their experiences and their hopes for the future. Different aspects of life - work, family, relationships and more - are discussed.

List of contributors; 1 Introduction Karen Soldatic and Kelley Johnson; Part 1 Remembering and Remembrance; 2 'We're being treated as second-class citizens': community, family and learning disability activists campaigning for dignity in death Nigel Ingham; 3 'Madhouse': performance artists with learning disabilities sharing the history of institutions Sue Ledger and Jan Walmsley with members of Access All Areas; 4 The importance of disabled people being seen on our screens Sarah Barton; 5 Advocacy from within Moira Rayner; Part 2 Movement Organizations and Leadership; 6 Action makes a difference: creating inclusive spaces through advocacy work in Sāmoa Juliann Anesi; 7 Kamalawathie: gender, disability and leadership in Sri Lanka Niroshini Kandasamy and Karen Soldatic; 8 Research, advocacy and activism: a necessary interaction? Kelley Johnson, Rob Hopkins and Gerard Minogue; 9 Peer education: a platform for sexuality rights advocacy for women with intellectual disabilities Patsie Frawley and Amie O'Shea; Part 3 Activism across multiple identities; 10 Our lives, our story: the journey of the voiceless towards advocacy in Nepal Pratima Gurung; 11 Sex trafficking, activism and disability Mark Sherry; 12 The onset of austerity in the United Kingdom and start of a disability activism Eleanor Lisney; 13 Queer-crip.blog: a virtual ethnographic comparison of social media movement-building techniques used by queer and disabled activists Zahari Richter; Part 4 Agitating the State; 14 Disability masked avengers: the Bolshy Divas Katie Ellis; 15 Advocacy in Jordan: a paradigm shift from the medical model to the rights-based approach Muhannad Alazzeh; 16 Transforming disability law and policy in Peru: the role of civil society Alberto Vásquez Encalada; 17 The fight to be steadfast: Bolivian disability activists Marianne Hedlund Part 5 Working Transnationally; 18 Advocating for independent living in the European Union: where there's money, there's a way? Ines Bulic Cojocariu; 19 Towards an Afrocentric disability activism: opportunities and challenges of transnationalizing disability advocacy in Africa Privilege Haang'andu; 20 Troubling activisms: Canada and transnational disability activism Deborah Stienstra; 21 When academia meets activism: The place of research in struggles for disability rights Paula Campos Pinto; 22 Conclusion Kelley Johnson and Karen Soldatic; Index

This is the first book to explore how far disability challenges dominant understandings of rurality, identity, gender and belonging within the rural literature. The book focuses particularly on the ways disabled people give, and are given meaning and value in relation to ethical rural considerations of place, physical strength, productivity and social reciprocity. A range of different perspectives to the issues of living rurally with a disability inform this work. It includes the lived experience of people with disabilities through the use of life history methodologies, rich qualitative accounts and theoretical perspectives. It goes beyond conventional notions of rurality, grounding its analysis in a range of disability spaces and places and including the work of disability sociologists, geographers, cultural theorists and policy analysts. This interdisciplinary focus reveals the contradictory and competing relations of rurality for disabled people and the resultant impacts and effects upon disabled people and their communities materially, discursively and symbolically. Of interest to all scholars of disability, rural studies, social work and welfare, this book provides a critical intervention into the growing scholarship of rurality that has bypassed the pivotal role of disability in understanding the lived experience of rural landscapes.

Intro -- Acknowledgements -- Contents -- Notes on Contributors -- List of Tables -- 1: Introduction -- 1 Introduction -- 2 The Editors' Positions -- 3 A Note on Language -- 4 Culture and the CRPD -- 5 Book Structure -- 5.1 Part I: Culture, Disability and the CRPD -- 5.2 Part II: The Ratification Process: To Be or Not to Be? -- 5.3 Part III: Making Disability Human Rights Happen? Cultural Challenges to Implementing the CRPD -- 5.4 Part IV: Monitoring the CRPD: Resolving Conflicting Interests? -- 6 Conclusion -- References -- Part I: Culture, Disability and the CRPD -- 2: Legal Culture and the CRPD -- 1 Introduction -- 1.1 Legal Culture as a Constraint on Legal Change -- 2 The Primary Legal Fiction in Our Legal Culture: Cognitive Ability and Rationality as the Essence of Personhood -- 3 The Janus Face of Article 12: Reflecting and Reinforcing Traditional Legal Culture or Transformative of It? -- 4 Nudging Legal Culture to Support a Theory of Universal Legal Capacity -- 5 Conclusion: Towards a Broader Agenda to Change Legal Culture to Give Breathing Space to the UN CRPD -- References -- 3: Anthropology, Disability and the CRPD -- 1 Introduction -- 2 The CRPD -- 3 The Anthropology of Disability -- 4 Reservations, Declarations and Objections to the CRPD -- 4.1 Reservations and Declarations -- 4.2 Objections -- 5 Concluding Remarks -- References -- 4: Recognising Cultural Diversity: Implications for Persons with Disabilities -- 1 Introduction -- 2 The Concept of 'Culture' and Its Impact on the Lives of Persons with Disabilities -- 2.1 Cultures and Persons with Disabilities -- 3 Cultural Perspectives of Persons with Disabilities -- 3.1 Culture or Cultures? -- 3.2 Disability Cultures or Culture -- 3.3 Tensions in Disability Cultures -- 3.3.1 The Tensions in Conceptualising 'Disability' and 'Cultures'.

What does it mean to have a good life? Why has it proved so difficult for people with intellectual disabilities to live one? This important book explores these questions, provides an analysis of related policies and underpinning ideologies and looks to how a good life may be made more attainable.

What does it mean to live a good life? Why has it proved so difficult for people with intellectual disabilities to live one? What happens when we make a good life the centre of our consideration of people with intellectual disabilities? These questions are explored through a re-examination of ideas from philosophy and social theory, and through personal life stories. This important and timely book provides an analysis and critique of current policies and underpinning ideologies in relation to people with intellectual disabilities and explores ways in which a good life may be made more attainable.

BackgroundA policy commitment to social inclusion has brought about some positive changes in the lives of people with intellectual disabilities; yet many also continue to experience social isolation, poverty and abuse. The authors introduce a framework for belonging from the literature and then present a study exploring the views of people with intellectual disabilities about belonging. These are discussed in relation to the framework identified from the literature.MethodThree focus groups with 24 participants with intellectual disabilities were conducted in New South Wales and Victoria (Australia). The authors used inductive content analysis to identify four meanings of belonging: (i) belonging in relation to place, (ii) as being part of a community, (iii) as having relationships and (iv) as identity. Also discussed are commonly experienced barriers to belonging identified by participants.ConclusionsImplications for policy, service provision and practice are discussed.

BackgroundThe study asks when does inclusive research add value? The authors argue that this is important, given the additional time and cost of co‐researching with people with intellectual disabilities. The study is situated in debates about a "second generation" of inclusive research which advocates focussing more on outcomes than process. The authors argue that this is premature, rather the authors propose that inclusive research is valuable when it helps to recognize, foster, and above all communicate the contributions people with intellectual disabilities can make.MethodThe authors conducted a literature review of 52 peer‐reviewed journal articles about inclusive research and analysed them..ResultsThe authors conclude that inclusive research adds value when there is a distinctive contribution which only co‐researchers with intellectual disabilities can make, when it highlights the contributions people with intellectual disabilities make, and when it contributes to better lives for the wider population of people with intellectual disabilities.ConclusionsThe authors propose a revised definition of inclusive research to replace that published by Walmsley and Johnson in 2003.

BackgroundWhile inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation.Materials and methodsBoth studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research.ResultsBoth studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships.ConclusionsBoth studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice.Accessible AbstractThis paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies.


Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences.

Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard.

Question 3 When does research shift into being advocacy? How does this happen? People with intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more 'expert' about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen.

Question 4 What added value does including people with intellectual disabilities as researchers give to the research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished.