Well everyone, here is the participatory research bibliography! I apologize
for the length of time it took to compile this. Please note that the list of
publications includes material I reviewed myself and many suggested sources
that others e-mailed to me. Hope this is helpful. Finally, thanks again to
those of you who responded to my initial inquiry. I appreciated your
assistance a great deal. Lilith Finkler
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Participatory Research Involving Persons with Disabilities : A Bibliography
Abu-Habib, Lina. (1997) Gender & Disability: Women’s Experiences in the
Middle East. Oxford, England: Oxfam.
Altman, Barbara M. & Barnartt, Sharon. (2000) Expanding the Scope of Social
Science Research on Disability. Stamford, Connecticut: JAI Press Inc.
Balcazar, F. E., Keys, C. B., Kaplan, D. L., & Suarez-Balcazar, Y. (1998).
Participatory action research and people with disabilities: Principles and
challenges. Canadian Journal of Rehabilitation, 12(2), 105-112.
Barile, M. (1993). Women with disabilities define system-based
discrimination. M.S.W. Monograph. McGill University.
Barnartt, Sharon & Altman, Barbara M. (2001) Exploring Theories and
Expanding Methodologies: Where We Are and Where We Need To Go. London,
England: JAI Press Inc.
Barnes, C., & Mercer, G. (Eds.).(1997). Doing disability research (pp.
1-14). Leeds: The Disability Press, University of Leeds.
Barnes, Colin.(1996) Disability and the Myth of the Independent Researcher.
Disability & Society, 11:1, 107-110.
Barnsley, Jan & Ellis, Diana.(1992) Research for Change: Participatory
Action Research for Community Groups. Vancouver, British Columbia: Women’s
Research Centre
Barton, Len & Oliver, Mike (editors) Disability Studies: Past, Present and
Future. Leeds, England: The Disability Press.
Beaulaurier, R. L., & Taylor, S. H. (1999). Self-determination and consumer
control: Guiding principles in the empowerment model as utilized by the
disability rights movement. In W. Shera & L. Wells(Eds.), Empowerment
practice: Developing richer conceptual foundations (pp. 159-177). Toronto:
Canadian Scholars Press.
Carling, Paul. (1995) Return to Community: Building Support Systems for
People with Psychiatric Disabilities. New York, New York: Guildford Press.
Charlton, James I. (2000) Nothing About Us Without Us; Disability Oppression
and Empowerment. Berkeley, California: University of California Press.
Collins, Anne. (1988) In the Sleep Room. Toronto, Ontario; Lester, Orpen &
Dennys.
Cook, P., Cook, M., Tran, L., & Tu, W. (1997). Children enabling change:a
multicultural, participatory, community-based rehabilitation research
project involving Chinese children with disabilities and their families.
Child and Youth Care Forum, 26(3), 205-219.
Corker, Mairian & French, Sally. (1999) Disability Discourse. Buckingham,
England: Open University Press.
Davis, J M, Watson N, Cunningham-Burley S (2000), Learning the lives of
disabled children: developing a reflexive approach, in Christiensen P
and James A eds., Research With Children, Falmer.
Davis, J M & Corker M (2001 in press) Disability Studies and
Anthropology: Difference Troubles in Academic Paradigms. Anthropology in
Action.
Davis J M (2000) Disability Studies as Ethnographic Research & Text: Can
We Represent cultural diversity whilst promoting social change? Disability
And Society,15: (2).pp191-206
Davis J M, (2001 forthcoming) 'Engaging Children and Disability Through
Ethnography: Negotiating Everyday Identities With Adults And Children'
In Kasnitz, D & Shuttleworth R eds. Engaging Anthropology In Disability
Studies.
Davis, JM & Watson N (2001 in press) Countering Stereotypes of
Disability: Disabled Children and Resistance', In M.Corker and T.Shakespeare
(Eds.) Disability and Postmodernity. London: Continuum
De Jong, Gerben (1979) Independent Living: From Social Movement to Analytic
Paradigm. Archives of Physical & Medical Rehabilitation, 60: 435-446.
DisAbled Women's Network (DAWN) Canada (1991). Research guidelines.
Brandon, Manitoba: Author.
French, S. (1994). Researching disability. In S. French (Ed.), On Equal
Terms: Working with Disabled People (pp. 136-147). Oxford:
Butterworth-Heinemann.
Gilson, S. F., Bricout, J. C., & Baskind, F. R. (1998). Listening to the
voices of individuals with disabilities. Families in Society, 79(2),188-196.
Gray, R., Sinding, C., Ivonoffski, V., Fitch, M., Hampson, A. and
Greenberg, M. (2000). The use of research-based theatre in a project related
to metastatic breast cancer. Health Expectations, Vol 3, pp 137-144.
Hartman, A., DePoy, E., Francis, C. and Gilmer, D. (2000) Adolescents with
special health care needs in transition: Three life histories. Social Work &
Health Care, 31,4,3-58.
Hershey, Laura. (2001) (a) Academics in the Service of Activism:
Scholars/Advocates Engage in Participatory Action Research. Disability
World. #9, July/August. www.disability.org
Hershey, Laura (2001) (b) Tanzania: Researcher Explores Lives of Disabled
Women & Girls.
Disability World. #8, May/June. www.disabilityworld.org
Jones, James H. (1981) Bad Blood : The Tuskegee syphilis experiment. New
York; Free Press.
Kiernan, C (1999) Participation research by People with Learning Disability:
Origins and Issues. British Journal of Learning Disabilities Vol. 27.
Knox, M. & Hickson, F. (2001). The meaning of close friendships: the views
of four people with intellectual disability. Journal of Applied Research in
Intellectual Disabilities, Vol. 14, pp. 276-291.
Kroese, B, Gillott, A and Atkinson, V (1998) Consumers with Intellectual
Disabilities as Service Evaluators. Journal of Applied Research in
Intellectual Disabilities Vol.11, No. 2, pp. 116-128
Lloyd, M., Preston-Shoot, M., Temple, B., with Wuu, R. (1996). Whose project
is it anyway? Sharing and shaping the research and development agenda.
Disability and Society, 11(3), 301-315.
Mactavish, J., Mahon, M. & Lutfiyya, Z. (2000). I can speak for myself:
involving individuals with intellectual disabilities as research
participants. Mental Retardation,
Vol. 38, pp. 216-227.
Moore, Michelle, Beazley, Sarah, Maelzer, June. (1998) Researching
Disability Issues. Buckingham, England: Open University Press.
Moreno, Jonathan D. (2000) Undue Risks: Secret State Experiments on Humans.
New York, New York: W.H. Freeman and Company.
Naiman, Sandy.(1999) Stigmatizing Mental Illness. Toronto Sun. May 8.
Nisbet, Jan & Hagner, David. (2000) Part of the Community: Strategies for
Including Everyone. Baltimore, Maryland: Paul H. Brookes Publishing.
Northway, R (1998) Engaging in participatory research: some personal
reflections. Journal of Learning Disabilities for Nursing, Health and Social
Care (1998) 2(3), 144-149
O’Brien, John & Connie. (1996) Members of Each Other: Building Community in
Company with People with Developmental Disabilities. Toronto, Ontario:
Inclusion Press.
Oliver, Michael.(1992) Changing the Social Relations of Research Production.
Disability & Society, 7:2, 101-114.
Patterson, Debbie.(1999) Encouraging Ethical and Non-Discriminatory Research
With Mental Health Consumers. Wellington, New Zealand: Mental Health
Commission.
Priestly, Mark. (2001) Disability and the Life Course: Global Perspectives.
Cambridge, England: Cambridge University Press.
Rahder, Barbara L. (1999) Victims No Longer: Participatory Planning with a
Diversity of Women at Risk of Abuse. Journal of Planning Education &
Research, 18:221-232.
Reaume, Geoff.(2000). "The 'Lunatics' Have Taken Over the Classroom:
Activism and the Teaching of History from Psychiatric Patients'
Perspectives." Unpublished paper. Society for Disability Studies annual
conference, Chicago, Illinois.
Rier, David. 2000. "The missing voice of the critically ill: a Medical
sociologist's first-person account." Sociology of Health and Illness
22(1):68-93.
Rioux, M. H. & Bach, M. (Eds.). (1994). Disability is not measles: New
research paradigms in disability. North York, Ontario: Roeher Institute.
Roeher Insitute. (1996) Partnerships in Community Living: Community Based
Research. Toronto, Ontario; Canadian Association for Community Living.
Rozen, Shahar. (1999) Liebe Perla. (film) Keshet Broadcasting.
Sanford, Jon, Story, Molly, Ringholz, David. (1998) Consumer participation
to inform universal design. Technology & Disability, 9: 149-162.
Shakespeare, Tom. (1998) The Disability Reader: Social Science Perpectives.
London, England: Cassell.
Stalker, K (1998) Some Ethical and Methodological Issues in Research with
People with Learning Difficulties. Disability & Society, Vol. 13, No. 1,
1998, pp. 5-19
Taylor, Steven J., Bogdan, Robert & Racino, Julia Ann. (1991) Life in the
Community: Case Studies of Organizations Supporting People with
Disabilities. Baltimore, Maryland: Paul H.Brookes Publishing.
Tewey, B. (1997). Building participatory action research partnerships in
disability and rehabilitation research. Washington, DC: The National
Institute on Disability and Rehabilitation Research.
Walmsley, Jan. (2001) Normalization, Emancipatory Research and Inclusive
Research in Learning Disability. Disability and Society. 16:2, 187-205.
Ward, L (1998) Practising Partnership: Involving People with Learning
Difficulties in Research. British Journal of Learning Disabilities Vol. 26
Ward, Linda & Flynn, Margaret. (1994) What Matters Most: Disability,
Research and Empowerment. In Rioux, M. (editor) Disability is Not Measles;
New Research Paradigms in Disability. Toronto, Ontario: Roeher Institute.
Wight-Felske, Aileen. (1990) Research From the Margins: Issues In Research
For and With Women With Disabilities. Toronto, Ontario: Roeher Institute.
Wiseman, Frederick. (1967) Titicutt Follies. (film)
Woodill, G. (1992). Independent living and participation in research: A
critical analysis. Discussion paper. Toronto: Centre for Independent
Living.
Zarb, Gerry. (1997) Researching Disabling Barriers in Barnes, Colin &
Mercer, Geoff . (editors) Doing Disability Research. Leeds, England: The
Disability Press.
Zarb, Gerry. (1992) On the Road to Damascus: first steps towards changing
the relations of disability research production. Disability & Society, 7:2,
125-138.
Irving Kenneth Zola (1982)Missing Pieces: A Chronicle of Living with a
Disability. Philadelphia: Temple University Press
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