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Exploring the ethical underpinnings of self-advocacy support for intellectually disabled adults
- Authors:
- CHAPMAN Rohhss, TILLY Liz
- Journal article citation:
- Ethics and Social Welfare, 7(3), 2013, pp.257-271.
- Publisher:
- Taylor and Francis
- Place of publication:
- Abingdon
Self-advocacy organisations support people in a wide range of political activities, alongside providing key social networks. The emergence of formalised self-advocacy for intellectually disabled people marked an important cultural shift. These groups soon became associated with the pursuit of social change and the attainment of rights. The role of the self-advocacy support worker, working together with self-advocates, has been pivotal. However, studies have shown there has been concern over the relationship between self-advocates and those who advise or support them. Both parties are aware of the potential tensions of supporters teaching people skills to take control, to manage their workers, whilst, perhaps inadvertently, assuming a powerful position in the relationship. This interesting paradox hints at ethical complexities inherent in the role. A key challenge facing these support workers is how they can support their employers to run successful organisations, without ‘taking over’. Using material from both Chapman and Tilley's research of self-advocacy organisations in the UK, this article problematises some key ethical issues within the role. (Edited publisher abstract)
An exploration of the self-advocacy support role through collaborative research: ‘there should never be a them and us’
- Author:
- CHAPMAN Rohhss
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.44-53.
- Publisher:
- Wiley
This paper reports on the findings of a qualitative team research project, exploring the role of support workers in UK self-advocacy organizations. A secondary aim of the paper was to add to understanding around inclusive research methodology, reporting on some of the experiences of collaboration. The research was undertaken by the author working with the Carlisle People First Research Team (CPFRT). The study developed an inclusive team approach working alongside researchers labelled with learning difficulties. Emphasis was placed on making all aspects of the research cycle accessible to the team. A variety of qualitative methods were used. Findings from emergent themes are discussed under three areas: (i) governance, leadership and policy; (ii) process and methods within groups, and; (iii) use of models and theories. The result found that despite supporters’ allegiances to disability equality and their emphasis on reflexivity, many crucial aspects of organizational practice and support remained hidden. However, an emerging shared narrative about the potential of people first implied the possibility of increased collaboration. This was evidenced in some of the groups. (Edited publisher abstract)