Session Information
04 SES 07 A, Social Capital and Justice
Paper Session
Contribution
Abstract:
The paper is based on one researchers experiences; personal, methodological and theoretical, while working on a five year extensive qualitative research into how Icelandic parents perceived of formal and informal support to a disabled child over 33 years, a period of significant socio-economic and social policy changes, and how these affect family life and choices. The main focus was disability studies and the theoretical frame of the study was social constructionism, but poststructuralism and social capital theories were also applied. The study involved 75 families with disabled children, youth and young adults, borne 1974 to 2007. Data was collected ( 2005-2008) by interviews with parents (126 interviews), document analysis and additional interviews with 5 couples that had chosen abortion because of expected foetal impairment (10 interviews), 3 focus group interviews with service staff, and 12 interviews with professionals and bureaucrats in health, education and social services. The research focused on the perspectives and experiences of parents of children labelled significantly disabled (with intellectual, physical, or sensory impairment) in an era of significant changes in Icelandic policy and practice. The parents came from different locations, and from different educational, economic, cultural and religious backgrounds. The findings suggest a amongst other things, that parents access to type and quality of support, affects their identity construction and self image, and their sense of quality of life. Fathers and mothers have different stories to tell. Further the growing maize of service and support options and choices provide obstacles and frustration to the parents, particularly the younger parents.
This paper will include the insiders story of the research in progress, its methodological, theoretical and personal dilemmas and the challenges it brought the researcher who is both an insider (a parent of a disabled young man) and an outsider university professor of disability studies and inclusive (special -) education.
Method
Expected Outcomes
References
References Berger, P. L. and T. Luckman (1967). The social construction of reality: A treatise in the sociology of knowledge. London, Penguin Pub. Bjarnason, D. S. (2010). Social policy and social capital. Parents and exceptionality 1974-2007. New York: Nova Science Publishers Inc. p. 1-187. Bjarnason, D.S. (2008). Private troubles or public issues? The social construction of “the disabled baby” in the context of social policy and social and technological changes. In S. Gabel og S. Danforth (edt.), Disability & the politics of education. New York: Peter Lang Publishing Inc. p. 251-274. Bjarnason, D.S. (2008). Parents and professionals: an uneasy partnership? In J. Allan, J Ozga og G. Smyth (edt.) Social capital, professionalism and diversity. Rotterdam, Sense. p. 123-138. Bjarnason, D.S. (2003). School inclusion in Iceland; The Cloak of Invisibility. In Education; Emerging Goals in a New Millennium, B. T. Peck (editor), New York, Nova Science Publishers. Bogdan, R. C. and Biklen, S.K.( 2003). Qualitative Research for Education. An Introductionto Theory and Methods. 4th ed. New York, Pearson Education grp. Christians, C. G. (2000). Ethics and politics in qualitative research. In Denzin, N.K. and Lincoln, Y.S. (edt.) Handbook of qualitative research. 2nd edition. Thousand Oaks. Sage publications: 133-155. De Laine, M. (2000). Fieldwork, participation and practice. Ethics and dilemmas in qualitative research. London, Sage publications. Disability and society. A Review Symposium. 22,2:230-234. Ferguson, P. (2001). Mapping the Family. Disability studies and the exploration of parental responses to disability. In G. L. Albrect, K. D. Seelman and M. Bury (Eds.) Handbook of Disability Studies.Thousand Oaks: Sage Publications: 373-395. Foucault M. (1975). The Birth of the Clinic: An Archaeology of Medical Perception (A. M. S. Smith, Trans.). New York: Vintage Books. Wolcott, H.F. (1995). The Art of Fieldwork. Walnut Creek, Alta Mira Press.
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