Parent voices: Intergenerational changes in parents’ capacity to reinvent their parental roles and identities when disability occurs in the family .

Author(s):

Dóra Sigríður BjarnasonDóra Sigríður Bjarnason

Conference:

ECER 2008

Network:

4. Inclusive Education

Format:

Paper

Session Information

04 SES 05C, Parent Narratives and Family Support

Paper Session

Time:

2008-09-11

08:30-10:00

Room:

AK2 138

Chair:

Ingemar Emanuelsson

Contribution

The paper is based on an extensive research into how Icelandic parents perceive of formal and informal support to a disabled child over a 35 years, a period of significant socio-economic and social policy changes, and how these affect family life and choices. The main theoretical frame is social constructionism, but poststructuralism and social capital theories are also applied. The study is qualitative, involving 65 families with disabled children, youth and young adults, borne 1974 to 2007. Data is collected (1999-2003 and 2006-2008) by interviews with parents (96 interviews), document analysis and additional interviews (10) and focus group interviews (4) with professionals and bureaucrats in health, education and social services. The research focuses 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 come from different geographical 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. The research is supported by the Icelandic Science Fund.

Expected Outcomes

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. 2002 New Voices in Iceland: Parents and adult children. Juggling supports and choices in time and space. Disability and society 17 (3):307-327. 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. Bjarnason, D. S. (2004). New Voices from Iceland: Disability and Young Adulthood. NY, NOVA Science Publishers Bjarnason, D.S. (forth comming). Parents and Professionals. An uneasy partnership? In J. Allan, J. Ozga and G. Smyth Social Capital, Professionalism and Diversity: New Relations in Urban Schools. Rotterdam: Sense Publishers. 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. Ferguson, D.L. and Ferguson P.M. (1993). The promise of Adulthood. M. SnellColumbus OH, Macmillan. Ferguson, D. L. and Ferguson P. M. (1995). The interpretivist view of special education and disability: The value of telling stories. In T. M. Skrtic (ed.) Disability and democracy: Reconstructing special education for postmodernity. New York, Teachers College Press: 104-122. Ferguson, Ferguson, and Taylor 1992. Interpreting Disability: A Qualitative Reader. New York, Teachers College Press Foucault M. (1975). The Birth of the Clinic: An Archaeology of Medical Perception (A. M. S. Smith, Trans.). New York: Vintage Books.

Author Information

Dóra Sigríður Bjarnason

Iceland University of Education

Special education in inclusive settings/sociology

Reykjavík

103

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