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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)
Getting better
- Authors:
- LEEDS ANIMATION WORKSHOP, (Producer)
- Publisher:
- Leeds Animation Workshop
- Publication year:
- 2010
- Pagination:
- (11 mins.), DVD
- Place of publication:
- Leeds
Six short animated stories about people with learning disabilities who also have mental health problems. The films shows how people with learning disabilities need to stand up for themselves to get fair treatment and in order to look after their health. It also shows what to expect when visiting the doctor's, the clinic or visit the dentist. A booklet is included.
Self-advocacy, civil rights and the social model of disability: final research report
- Authors:
- GOODLEY Dan, ARMSTRONG Derrick
- Publisher:
- University of Leeds. Centre for Disability Studies
- Publication year:
- 2001
- Pagination:
- 21p.
- Place of publication:
- Leeds
This study examined the self-advocacy of people with the label of ‘learning difficulties’ as enacted within self-advocacy groups and accounted for in personal narratives. This very process illuminated a number of significant concerns in relation to the doing of disability research by disabled researchers. The theoretical, political and cultural background to this study can be broadly split into two areas.
New voices: self-advocacy by people with disabilities
- Editors:
- DYBWAD Gunnar, BERSANI Hank Jr.
- Publisher:
- Brookline Books
- Publication year:
- 1996
- Pagination:
- 286p.
- Place of publication:
- Cambridge, MA
Collection of papers on self advocacy by people with developmental disabilities, many by self advocates themselves. Provides an historical background to the development of the self advocacy movement in the Western world. Examines the current state of self advocacy activities, and concludes by projecting the movement's future course as it continues to be accelerate worldwide amongst people with learning difficulties.
The beliefs, values and principles of self-advocacy
- Author:
- INTERNATIONAL LEAGUE OF SOCIETIES FOR PERSONS WITH MENTAL HANDICAP
- Publisher:
- Brookline Books
- Publication year:
- 1996
- Pagination:
- 48p.
- Place of publication:
- Cambridge, MA
Booklet setting out values and principles for self-advocacy. Also contains sections on: support and the role of a support person; empowerment; institutions; and stories of good practice from around the world.
What makes a good self-advocacy project? The added value of co-production
- Authors:
- ARMSTRONG A., et al
- Journal article citation:
- Disability and Society, 34(7-8), 2019, pp.1289-1311.
- Publisher:
- Taylor and Francis
This article describes how two self-advocates worked with two academics and others to produce a toolkit to help self-advocacy groups run better projects. The paper begins by explaining why this research needed doing and how it was carried out. The researchers then talk about what co-produced research means to them and how they think it is different from participatory or inclusive research. They then discuss whether the research and this article were co-produced. Finally, they looking at why they think co-production added value to this research. The aim with this article is to help activists and academics work together to achieve two things: good-quality research findings; and big differences to disabled people’s lives. (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)
'Some people are never going to be able to do that'. Challenges for people with intellectual disability in the 21st century
- Author:
- DOWSE Leanne
- Journal article citation:
- Disability and Society, 24(5), August 2009, pp.571-584.
- Publisher:
- Taylor and Francis
This article surveys contemporary macro social, economic and political issues and considers how they define the context of life for people with intellectual disability in the early 21st century. It suggests that processes associated with globalisation intensify the agenda of neo-liberalism to fundamentally determine their everyday social arrangements and experiences, at least in western democracies such as the USA, the UK and Australia. Risk has now emerged as an overarching principle informing social responses to intellectual disability, while marketisation and privatisation have given rise to a complex dynamic whereby demands for individualism have become interconnected with states of dependency. Emerging technologies of citizenship have seen paradoxical notions of choice, consent, needs and interests applied to people with intellectual disability. These new forms of governance pose personal challenges at an individual level and political challenges to the collective of self-advocacy in its project for change in a globalising world.
The views and experiences of people with intellectual disabilities concerning advocacy
- Authors:
- LLEWELLYN Penny, NORTHWAY Ruth
- Journal article citation:
- Journal of Intellectual Disabilities, 12(3), September 2008, pp.213-228.
- Publisher:
- Sage
- Place of publication:
- London
This article discusses the first stage of a grounded theory study in which people with intellectual disabilities participated in focus groups to explore their definitions of advocacy and their advocacy support needs. Participants' ideas were influenced by their situation, the availability and type of support offered, and their relationships with supporters. Many different definitions of advocacy were revealed which were classified as reactive or proactive advocacy at micro, meso or macro level. The aim of advocacy was seen as empowerment, but this occurred only when support was readily available, concentrated on people's abilities, and facilitated opportunities for them to exert maximum possible control over their lives.
Towards a better future for the self advocacy movement
- Author:
- BRIGHT Andrew
- Journal article citation:
- Community Living, 13(4), April 2000, pp.13-14.
- Publisher:
- Hexagon Publishing
The author traces the growth of the People First movement, which grew from the wishes of people with learning difficulties to change their lives, and looks forward to its future.