“Nothing about us without us”: The ideals and realities of participatory action research with people with an intellectual disability

Lyn Harrison; Kelley Johnson; Lynne Hillier; Ria Strong

doi:10.1080/15017410109510776

Research

“Nothing about us without us”: The ideals and realities of participatory action research with people with an intellectual disability

Authors:

Lyn Harrison ,

Faculty of Education at Deakin University, Geelong, Victoria, Australia, AU

About Lyn

Dr Lyn Harrison is a Lecturer in Health Education in the Faculty of Education at Deakin University, Geelong, Victoria, Australia. Her research interests include gender, sexuality, health education and students at educational risk.

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Kelley Johnson,

About Kelley

Dr Kelly Johnson has been involved in research on intellectual disability for fifteen years and has authored several books in the field.

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Lynne Hillier,

Australian Research Centre in Sex, Health and Society at La Trobe University, Carlton, Victoria, Australia, AU

About Lynne

Dr Lynne Hillier is currently a Postdoctoral Research Fellow with the Australian Research Centre in Sex, Health and Society at La Trobe University, Carlton, Victoria, Australia. Her research is focussed on sexuality issues for marginalized groups.

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Ria Strong

About Ria

Ms Ria Strong is an activist in the area of Acquired Brain Injury and disability and has been involved in several research projects focused on the rights of people with an intellectual disability.

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Abstract

Undertaking participatory research with people with intellectual disabilities is becoming a much‐discussed issue. Some researchers and self‐advocates argue strongly that only participatory research can produce useful, honest research which assists people with intellectual disabilities to attain their rights. Others question whether such research is possible or indeed desirable. This paper describes a three‐year action research project which sought to carry out participatory research on the sensitive issue of sexuality. The research grew partly from concerns of people with intellectual disabilities about this issue and involved them in its management and implementation as well as in developing workshops and publications arising from the research. The research process was consciously self reflective and raised questions about participatory research, representation and difference, and the dialectical relationship between individual life histories and institutional change. This paper discusses these issues and the contribution they make to current methodological debates.

How to Cite: Harrison, L., Johnson, K., Hillier, L. and Strong, R., 2009. “Nothing about us without us”: The ideals and realities of participatory action research with people with an intellectual disability. Scandinavian Journal of Disability Research, 3(2), pp.56–70. DOI: http://doi.org/10.1080/15017410109510776

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Published on 08 Jul 2009

Peer Reviewed

CC BY 4.0

References

Alder , C and Sandor , D (1990). . . Youth researching youth. . Youth Studies , 9((4)): : 38.–.
Barnes , C (1996). . . Disability and the myth of the independent researcher. . Disability and Society , 11((1)): : 107.–.
Barton , L (1998). . . “Developing an emancipatory research agenda: possibilities and dilemmas. ”. In Articulating with Difficulty: Research Voices in Inclusive Education. , Edited by: Clough , P and Barton , L . [city: London]: : Paul Chapman Publishing Ltd.. .
Clough , P and Barton , L (). , eds. Articulating with Difficulty: Research Voices in Inclusive Education. , [city: London]: : Paul Chapman Publishing Ltd.. .
Fals Borda , A (). . Participatory action research and real life processes: beyond the ritual of analysis. . Faculty of Education seminar series. . September19, , [city: Geelong]. Deakin University. .
Foster , M (1972). . . An introduction to the theory and practice of action research in work organizations. . Human Relations , 25((6)): : 529.–.
Goodson , IF (1997). . . “Action research and ‘the reflexive project of selves’. ”. In International Action Research: A Casebook for Educational Reform. , Edited by: Hollingsworth , S . [city: London]: : The Falmer Press. .
Grundy , S and Kemmis , S (1981). . Educational action research in Australia: the state of the art (an overview). . Paper presented at the Annual Conference of the Australian Association for Research in Education. . November1981, , [city: Adelaide].
Hall , BL (1979). . . Knowledge as a commodity and participatory research. . Prospects , 9((4)): : 393.–.
Hollingsworth , S , Dadds , M and Miller , J (1997). . . “The examined experience of action research: the person within the process. ”. In International Action Research: A Casebook for Educational Reform. , Edited by: Hollingsworth , S . [city: London]: : The Falmer Press. .
Johnson , K (1998). . . Deinstitutionalising Women. An Ethnographic Study of Institutional Closure. , [city: Melbourne]: : Cambridge University Press. .
Kaplan , SJ and Alsup , R (1995). . . Participatory action research: a creative response to AIDS prevention in diverse communities. . Convergence , 28((1)): : 38.–.
Kitchen , R (2000). . . The researched opinions on research: disabled people and disability research. . Disability and Society , 15((1)): : 25.–.
McCarthy (1999). . . Sexuality and Women with Learning Disabilities. , [city: London]: : Jessica Kingsley Publishers. .
McCarthy (2000). . . “Consent and choices: women with intellectual disabilities and sexuality. ”. In Women with Intellectual Disabilities. Finding a Place in the World. , Edited by: Traustadottir , R. and Johnson , K. [city: London]: : Jessica Kingsley Publishers. .
McTaggart , R (1997). . . “Guiding principles for participatory action research. ”. In Participatory Action Research: International Contexts and Consequences. , Edited by: McTaggart , R . [city: Albany]: : State University of New York Press. .
Rahman , MA (). . Globalization and people's empowerment. . Keynote Address at the Fourth International Workshop on the Evaluation of Social Development. . April3–7, , [city: Oxford].
Rioux , M and Richler , D (1995). . . “Count us in: lessons from Canada on strategies for social change. ”. In Values and Visions: changing Ideas in Services for People with Learning Difficulties. , Edited by: Philpot , T and Ward , L . [city: Oxford]: : Butterworth Heinemann Ltd.. .
Shakespeare , T (1996). . . Rules of engagement: doing disability research. . Disability and Society , 11((1)): : 115.–.
Tandon , R (1988). . . Social transformation and participatory research. . Convergence , 21((2/3)): : 5.–.

[CIT0001] Alder , C and Sandor , D (1990). . . Youth researching youth. . Youth Studies , 9((4)): : 38.–.

[CIT0002] Barnes , C (1996). . . Disability and the myth of the independent researcher. . Disability and Society , 11((1)): : 107.–.

[CIT0003] Barton , L (1998). . . “Developing an emancipatory research agenda: possibilities and dilemmas. ”. In Articulating with Difficulty: Research Voices in Inclusive Education. , Edited by: Clough , P and Barton , L . [city: London]: : Paul Chapman Publishing Ltd.. .

[CIT0004] Clough , P and Barton , L (). , eds. Articulating with Difficulty: Research Voices in Inclusive Education. , [city: London]: : Paul Chapman Publishing Ltd.. .

[CIT0005] Fals Borda , A (). . Participatory action research and real life processes: beyond the ritual of analysis. . Faculty of Education seminar series. . September19, , [city: Geelong]. Deakin University. .

[CIT0006] Foster , M (1972). . . An introduction to the theory and practice of action research in work organizations. . Human Relations , 25((6)): : 529.–.

[CIT0007] Goodson , IF (1997). . . “Action research and ‘the reflexive project of selves’. ”. In International Action Research: A Casebook for Educational Reform. , Edited by: Hollingsworth , S . [city: London]: : The Falmer Press. .

[CIT0008] Grundy , S and Kemmis , S (1981). . Educational action research in Australia: the state of the art (an overview). . Paper presented at the Annual Conference of the Australian Association for Research in Education. . November1981, , [city: Adelaide].

[CIT0009] Hall , BL (1979). . . Knowledge as a commodity and participatory research. . Prospects , 9((4)): : 393.–.

[CIT0010] Hollingsworth , S , Dadds , M and Miller , J (1997). . . “The examined experience of action research: the person within the process. ”. In International Action Research: A Casebook for Educational Reform. , Edited by: Hollingsworth , S . [city: London]: : The Falmer Press. .

[CIT0011] Johnson , K (1998). . . Deinstitutionalising Women. An Ethnographic Study of Institutional Closure. , [city: Melbourne]: : Cambridge University Press. .

[CIT0012] Kaplan , SJ and Alsup , R (1995). . . Participatory action research: a creative response to AIDS prevention in diverse communities. . Convergence , 28((1)): : 38.–.

[CIT0013] Kitchen , R (2000). . . The researched opinions on research: disabled people and disability research. . Disability and Society , 15((1)): : 25.–.

[CIT0014] McCarthy (1999). . . Sexuality and Women with Learning Disabilities. , [city: London]: : Jessica Kingsley Publishers. .

[CIT0015] McCarthy (2000). . . “Consent and choices: women with intellectual disabilities and sexuality. ”. In Women with Intellectual Disabilities. Finding a Place in the World. , Edited by: Traustadottir , R. and Johnson , K. [city: London]: : Jessica Kingsley Publishers. .

[CIT0016] McTaggart , R (1997). . . “Guiding principles for participatory action research. ”. In Participatory Action Research: International Contexts and Consequences. , Edited by: McTaggart , R . [city: Albany]: : State University of New York Press. .

[CIT0017] Rahman , MA (). . Globalization and people's empowerment. . Keynote Address at the Fourth International Workshop on the Evaluation of Social Development. . April3–7, , [city: Oxford].

[CIT0018] Rioux , M and Richler , D (1995). . . “Count us in: lessons from Canada on strategies for social change. ”. In Values and Visions: changing Ideas in Services for People with Learning Difficulties. , Edited by: Philpot , T and Ward , L . [city: Oxford]: : Butterworth Heinemann Ltd.. .

[CIT0019] Shakespeare , T (1996). . . Rules of engagement: doing disability research. . Disability and Society , 11((1)): : 115.–.

[CIT0020] Tandon , R (1988). . . Social transformation and participatory research. . Convergence , 21((2/3)): : 5.–.

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Research

“Nothing about us without us”: The ideals and realities of participatory action research with people with an intellectual disability

Authors:

Lyn Harrison ,

Faculty of Education at Deakin University, Geelong, Victoria, Australia, AU

About Lyn

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Kelley Johnson,

About Kelley

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Lynne Hillier,

Australian Research Centre in Sex, Health and Society at La Trobe University, Carlton, Victoria, Australia, AU

About Lynne

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Ria Strong

About Ria

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Abstract

References