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What’s in it for me? the meaning of involvement in a self-advocacy group for six people with intellectual disabilities
- Authors:
- CLARKE Rachel, CAMILLERI Kelly, GODING Lois
- Journal article citation:
- Journal of Intellectual Disabilities, 19(3), 2015, pp.230-250.
- Publisher:
- Sage
- Place of publication:
- London
Background: This article explores the experiences of six people with intellectual disabilities in the context of a self-advocacy group, identifying the benefits and difficulties of being part of the group. Materials and Methods: Six adults with intellectual disabilities were interviewed about their experiences. Each individual took part in two individual and two group interviews. The transcripts were analysed using thematic analysis. Results: Analysis revealed four themes, namely, being part of the group, self-esteem, self-determination and empowerment. Conclusion: Being part of the group is central to the experience of self-esteem, self-development and empowerment. Responses allow the exploration of the interrelationship between individual, group and community. Consideration is given to models of disability and the evidence base in relation to personal and political outcomes of self-advocacy. Links are made with developing a sense of self, self-determination, interpersonal learning and building resilience. Implications for practice are discussed. (Publisher abstract)
Constructing sexual identities: people with intellectual disability talking about sexuality
- Authors:
- AZZOPARDI-LANE Claire, CALLUS Anne-Marie
- Journal article citation:
- British Journal of Learning Disabilities, 43(1), 2015, pp.32-37.
- Publisher:
- Wiley
This paper presented research undertaken in collaboration with a self-advocacy group using inclusive research methods and puts forward the views of people with intellectual disability on the topics of sexuality and relationships. The paper presents the perceptions of sexuality of the people with intellectual disability and how these are influenced by social and cultural norms. Using Judith Bulter's concept of performativity, the analysis of the findings shows how some people with intellectual disability accept the sexual norms that are ascribed to them, while others resist them. The paper also shows how the inclusive research process itself enabled the people with intellectual disability who took part to articulate their acceptance or resistance of these norms. (Publisher abstract)
Can self-advocacy impact upon culture?
- Author:
- GREIG Rob
- Journal article citation:
- Tizard Learning Disability Review, 20(2), 2015, pp.77-79.
- Publisher:
- Emerald
Purpose: This paper provides a commentary on the article 'Changing organisational culture: another role for self-advocacy' by Robin Miller. Design/methodology/approach: The paper suggests that self-advocacy has the potential to be a significant influence on organisational culture, but questions whether self-advocacy's current funding regime and limited focus on outcomes makes this possible. Research limitations/implications: This issue is identified as one where further research would be beneficial. Practical implications: If organisations are to use self-advocacy as a route of cultural change, it is suggested that attention will need to be given to issues of independent funding, management change objectives and whole system change. Originality/value: If evidence were generated to support the belief that self-advocacy can impact on organisational culture, the consequences for how society and services behave towards people with learning disabilities could be significant. (Edited publisher abstract)
Changing organisational culture: another role for self-advocacy?
- Author:
- MILLER Robin
- Journal article citation:
- Tizard Learning Disability Review, 20(2), 2015, pp.69-76.
- Publisher:
- Emerald
Purpose: Improvements in organisational culture are a common recommendation of enquiries into system failure and an aspiration of policy. The purpose of this paper is to explore an initiative to change culture in a low-secure service for men with a learning disability and mental health needs through the introduction of a self-advocacy group. Design/methodology/approach: An independent evaluation was carried out by a university research team. A theory-based methodology was deployed with qualitative data gathered through observations, interviews and focus groups. Findings: Culture change was reported by senior managers and clinicians in relation to the transparency of the service, decision making regarding resources, and engagement of patients in redesign. Self-advocacy group members reported a different relationship with senior management which in turn enabled greater influence in the organisation. Achieving these impacts relied on independent and skilled external facilitation, support from senior managers, and a calm and democratic atmosphere in the meetings. Ward staff were kept at an arms-length from the group and were less certain that it had made any difference to the way in which the ward operated. Research limitations/implications: The research was only based in one organisation and the impacts of the initiative may vary with a different local context. Research in a wider sample of organisations and culture change initiatives will provide greater insights. Practical implications: Self-advocacy groups can lead to organisation culture change alongside benefits for individual group members but require funding, external and independent facilitation, and organisational endorsement and support. (Edited publisher abstract)