How we live: participatory research with six people with learning difficulties

Richardson, Malcolm

doi:10.1046/j.1365-2648.2000.01624.x

Cited by 32 publications

(25 citation statements)

References 40 publications

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“…Ironically, perhaps one of the disabling effects of the medical model has been to facilitate the stereotyping of people according to their disability labels. The continued widespread practice of IQ testing, for example, although largely discredited (Gould, 1996), has done much to generate an almost universal ''assumption of incompetence'' in respect of people with an intellectual disability (Richardson, 2000). Having impairment, being a relative of a person with impairment, or being part of a specialist organisation dealing with disability issues does not necessarily produce activism or advocacy.…”

Section: Control and Agencymentioning

confidence: 98%

“…In terms of gathering data from people with an intellectual disability, Richardson (2000Richardson ( , 2002 in his participatory study with six people researching aspects of their own lives, noted the use of focus groups that were largely unstructured and hence allowed participants to select topics for themselves. This allowed the research to be self-directed and themes to be emergent and non-intrusive.…”

Section: Control and Agencymentioning

confidence: 99%

“…There is now a small but significant body of research (e.g., Ham et al, 2004;Richardson, 2000Richardson, , 2002 where people with intellectual disabilities are identified as co-researchers/researchers and are appreciably involved in research processes that traditionally engaged only university academics; tasks such as ethics applications, the development of research questions and hypotheses, collecting and analysing data, and the distribution of findings.…”

Section: Control and Agencymentioning

confidence: 99%

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Flexible and Responsive Research: Developing Rights-Based Emancipatory Disability Research Methodology in Collaboration with Young Adults with Down Syndrome

Stevenson

2010

Australian Social Work

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This paper examines the development of the Emancipatory Disability Research (EDR) paradigm; principles defined by various groups and authors within the disability movement that are intended to ensure the integrity of disability research design and practice. It is argued that these principles are commensurate with the tenets underpinning the United Nations Convention on the Rights of Persons with Disabilities (2008). The paper then relates the principles of EDR to participatory research involving people with an intellectual disability, drawing both on existing studies and the author's ongoing research project, which is conducted in partnership with young adults with Down syndrome and other key stakeholders. The author advocates for the ongoing development and adaptation of the EDR ''model'' in respect of people with an intellectual disability. This requires the academic researcher to embrace their position as a Human Rights activist, and render the research process flexible and continuously open to diverse forms of participation by co-researchers who have an intellectual disability, if they are to influence the research process and outcomes and their voices are to be heard.The methodology of disability research and, in particular, research involving people with an intellectual disability, raises vital philosophical, political, and practical issues. As a non-disabled researcher, what is the moral justification in my undertaking this work? What ''standpoint'', framework, and principles if any, can guide me? How can I ensure participation in formulating research questions, gathering and analysing data, and presentation of findings? What conclusions can those with a disability draw and how can they and society benefit? The purpose of this paper is to explore the United Nations Convention on the Rights of Persons with Disabilities (which entered into force in May 2008), the Social Model of disability, the Emancipatory Disability Research (EDR) paradigm, and the work of other critical researchers in relation to how these might guide the position and practice of the non-disabled researcher and

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Section: Control and Agencymentioning

confidence: 98%

Section: Control and Agencymentioning

confidence: 99%

Section: Control and Agencymentioning

confidence: 99%

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Flexible and Responsive Research: Developing Rights-Based Emancipatory Disability Research Methodology in Collaboration with Young Adults with Down Syndrome

Stevenson

2010

Australian Social Work

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“…These ÔclosedÕ projects involve participants generating research information by allowing them to share experiences and discuss issues though a series of regular meetings. 24,29 For our study, it was decided that the patient and carer co-researcher group should adopt an Ôopen boundaryÕ approach. In this regard, the patient and carer co-researcher group assisted in the design of the project and in the collection and subsequent analysis of patients and carers recruited throughout the UK.…”

Section: Participatory Researchmentioning

confidence: 99%

Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda

Wright

Corner²,

Hopkinson

et al. 2006

Health Expectations

142

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Aim The study ÔListening to the Views of People Affected by Cancer About Cancer ResearchÕ is currently exploring the views people affected by cancer have about cancer research and identifying their research priorities. Integral to this is the broader aim of ensuring an effective, collaborative participation of patients and carers in the design and conduct of the study. On the basis of experiences with the study to date, the latter is explored in this paper.Design The study adopts a Ôparticipatory researchÕ approach entailing the formation of a Ôreference groupÕ and a subsequent patient and carer co-researcher group. Patient and carer members of these groups were identified through the patient forums of UK cancer networks and by approaching Ôhard to reachÕ representatives directly through community groups and participating study sites.Findings Experiences from this study illustrate that a Ôparticipatory researchÕ approach is appropriate in engaging patients and carers in the research process. Establishing a group of people affected by cancer in the study was found to be particularly effective in enhancing the design and conduct of the research.Conclusions ÔParticipatory researchÕ offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.

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“…The first author (Alexis) has worked in community organizations for developmentally disabled people for the past five years, thus providing her with knowledge of some of the common issues affecting developmentally disabled people. Second, previous research has often excluded the voices of this population -especially those who may have intellectual difficulties, because they are commonly considered incompetent and unable to adequately speak for themselves (Richardson 2000). Third, there can be a number of challenges when working with a variety of disability groups such as physical, developmental, psychiatric, and so forth, using a participatory approach.…”

Section: Disability and Society 605mentioning

confidence: 98%

We did it together: a participatory action research study on poverty and disability

Buettgen

Richardson²,

Beckham³

et al. 2012

Disability & Society

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This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. Our study used a participatory action research approach that challenges the norm of exclusion in the research process. Control of the research agenda has been inclusive and shared to varying degrees in accordance with the needs and desires of the members of an advisory committee of developmentally disabled people living with low income. We reflect on our process of working together according to four principles of participatory action research with disabled people. We discuss our successes and challenges enacting these principles in the hopes that future researchers can build upon our experience to be more inclusive of developmentally disabled people in their work. Points of interest• This article presents the perspective of both non-disabled and developmentally disabled people working together in a research project on poverty and disability. • Our study aimed to help raise the voices of developmentally disabled people living with low income and support the development of poverty-reduction strategies to meet their needs and priorities. • In this paper we discuss how we worked together to develop the research project, conduct focus groups, analyze results and use what we have learned to raise awareness and help make change in relation to poverty and disability issues. • We reflect on our process of working together according to four principles of participatory action research with disabled people to describe our successes and challenges.

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How we live: participatory research with six people with learning difficulties

Cited by 32 publications

References 40 publications

Flexible and Responsive Research: Developing Rights-Based Emancipatory Disability Research Methodology in Collaboration with Young Adults with Down Syndrome

Flexible and Responsive Research: Developing Rights-Based Emancipatory Disability Research Methodology in Collaboration with Young Adults with Down Syndrome

Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda

We did it together: a participatory action research study on poverty and disability

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