New voices in Iceland young adults with disabilities in Iceland: The importance of relationships and natural supports

Dóra S. Bjarnason

doi:10.1080/15017410209510790

Original Articles

New voices in Iceland young adults with disabilities in Iceland: The importance of relationships and natural supports

Author:

Dóra S. Bjarnason

Icelandic University of Education, GB

About Dóra S.

Associate Professor, A sociologist, educated in the UK

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Abstract

This paper deals with young adults’ perspectives and experiences of growing up with a variety of impairments in Iceland, and how they impact the young disabled adults’ approach to the status of adulthood. The paper is based on a qualitative study that explored perspectives and experiences of 36 young disabled adults (16–24 years old), their parents, friends and teachers. The purpose of this paper is to share themes related to the way that choices made by and for disabled children and young persons, place them within different support systems and social network, which subsequent impact the young people's views of themselves and their prospects as young adults. The paper includes different perspectives on adulthood and the extent to which the young disabled people expect to reach that status or remain as “eternal youth” “for a long time”, enmeshed in segregated services. Findings show that the type, nature and mix of generic and segregated special services is critical for the young adults’ approaching adulthood in mainstream society or expecting to remain (for a long time) in the limbo of “eternal youth” within segregated settings. Earlier choices may, however, be revisited at each subsequent transition point. Further, the disabled young adults who struggled for social inclusion, could obtain full active membership in society, even against social and physical barriers and medically defined disability labels.

How to Cite: Bjarnason, D.S., 2002. New voices in Iceland young adults with disabilities in Iceland: The importance of relationships and natural supports. Scandinavian Journal of Disability Research, 4(2), pp.156–189. DOI: http://doi.org/10.1080/15017410209510790

Published on 02 Jul 2002

Peer Reviewed

CC BY 4.0

References

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[CIT0002] Allan , J. (2001). 7 October 2001. Inclusive Education: Exploring the Possibilities and Practice: Disability Arts and the Performance of Ideology. A lecture at a seminar: Research in Disability, Inclusive Education and Handicap History. , 7 October 2001, DPU in Copenhagen. .

[CIT0003] Arnet , J.J. (1998). . Learning to Stand Alone: The Contemporary American transition to Adulthood in Cultural and Historical Context. . Human Development , 41: : 295.–.

[CIT0004] Barnes , C. (1996). . “Theories of Disability and the Origins of the Oppression of Disabled People in Western Society. ”. In Disability and Society: Emerging Issues and Insights. , Edited by: Barton , L. [city: London]: : Routledge and Kegan Paul. .

[CIT0005] Barnes , C. (1998). . “The Social Model of Disability: A Sociological Phenomenon ignored by Sociologists. ”. In The Disability Reader. Social Science Perspective. , Edited by: Shakespeare , T . : 65.–. [city: London]: : Cassell. .

[CIT0006] Barnes , C. and Mercer , G. (1997). . Doing Disability Research. , Leeds, The Disability Press. .

[CIT0007] Barnes , C. , Mercer , G. and Shakespeare , T. (1999). . Exploring Disability: A Sociological Introduction. , [city: Cambridge]: : Polity Press. .

[CIT0008] Barton , L. (1999). . Struggle, Support and the Politics of Possibility. . Scandinavian Journal of Disability Research , 1: : 13.–.

[CIT0009] Barton , L. and Armstrong , F. (2001). . “Disability, Education and Inclusion: Cross‐cultural Issues and Dilemmas. ”. Edited by: Albrecht , G.L. , Seelman , K.D. and Bury , M.

[CIT0010] Handbook of Disability Studies. , [city: Thousand Oaks]: : Sage Publications. .

[CIT0011] Bates , E. (1976). . Language and Context. , [city: New York]: : Academic Press. .

[CIT0012] Becker , H.S. (1963). . Outsiders: Studies in the Sociology of Deviance. , [city: New York]: : Free Press. .

[CIT0013] Berger , P.L. and Luckman , T. (1967). . The Social Construction of reality: A Treatise in the Sociology of Knowledge. , [city: Garden City], [state: NY]: : Doubleday. .

[CIT0014] Bjarnason , D.S. , Gustavsson , A. , Dyrendahl , G. and Tossebro , J. (1996). . “Iceland: From Institutions to Normalization? Changes in the Policy and Practice of Icelandic Welfare Services for the Intellectually Disabled 1960–1995. ”. In Intellectual Disability, Policy and Practice in the Nordic States. , [city: Kristianssund]: : Hojskole Forlaget. .

[CIT0015] Bjarnason , D.S. (1996 b). . “[Bursting the bubble. The story of Benedikt]. ”. In Undir huliðshjálmi: Sagan af Benedikt. , [city: Reykjavík]: : Mái og menning. .

[CIT0016] Bjarnason , D.S. (2001). . Af sjónarhóli félagsfræði og fötlunarfræða: Er lífið bess virði að lifa því fatlaður? [From the perspectives of sociology and disability studies: Is life worth living if you have an impairment?]. . Lœknabla , 87((Supplement 42)): : 30.–. 2001,.

[CIT0017] 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.–.

[CIT0018] Bourdieu , P. (1977). . Outline of a Theory of Practice. , [city: Cambridge]: : Cambridge University Press. .

[CIT0019] Bogdan , R.C and Biklen , S.N. (1992). . Qualitative Research for Education. An Introduction to Theory and Methods. , 2 edition , [city: Boston]: : Allyn and Bacon. .

[CIT0020] Clegg , S. (1999). . Professional Education, Reflective Practices and Feminism. . International Journal of Inclusive Education , 3: : 167.–.

[CIT0021] Corker , M. (1999). . Difference, Conflations and Foundations: The Limits to “Accurate” Theoretical Representation of Disabled People's Experience?. . Disability and Society , 14: : 627.–.

[CIT0022] Danforth , S. (1997). . On what basis Hope? Modern Progress and Postmodern Possibilities. . Journal of Mental Retardation , 35: : 93.–.

[CIT0023] Danforth , S. (1999). . Pragmatism and the Scientific Validation of Professional Practices in American Special Education. . Disability and Society , 14: : 733.–.

[CIT0024] Denzin , N.K. (1989). . The Research Act. , 3^rdedition , [city: Engelwood Cliffs], [state: New Jersey]: : Prentice Hall. .

[CIT0025] Devlieger , P. (1999). . Frames of Reference in African Proverbs. . International Journal of Disability, Development and Education , 25: : 439.–.

[CIT0026] Epp , T. (2000). . “Disability: Discourse, Experience and Identity.”. . Disability Studies Quarterly, , : : 20.

[CIT0027] Ervelles , N. (2000). . Educating Unruly Bodies: Critical Pedagogy, Disability Studies, and the politics of Schooling. . Educational Theory , 50: : 25.–.

[CIT0028] Ferguson , D.L (1995). . . The real Challenge of Inclusion. Confessions of a “rabid inclusionist”. . Phi Delta Kappan , 77: : 281.–.

[CIT0029] Ferguson , D.L. (1996). . “Is it Inclusion Yet? Bursting the Bubbles. ”. In Creating Tomorrow's Schools Today. Stories of Inclusion, Change and Renewal. , Edited by: Berres , M.S. , Ferguson , D.L. , Knowblock , P. and Woods , K. [city: New York]: : Teachers College Press. .

[CIT0030] Ferguson , P.M. (2001). . Winks, Blinks, Squints and Twitches: Looking for Disability and Culture through my Son's left Eye. . Scandinavian Journal of Disability Research , 3((no.2))

[CIT0031] Ferguson , D.L. and Ferguson , P.M. (1993). . “The Promise of Adulthood. ”. In Instruction of Students with Severe Disabilities. , Edited by: Snell , M . [city: Columbus], [state: OH]: : Macmillan. .

[CIT0032] Ferguson , P.M. and Ferguson , D.L. (1995). . “The Interpretivist View of Special Education and Disability: The value of telling Stories. ”. In Disability and Democracy: Reconstructing (special) Education for Postmodernity. , Edited by: Skrtic , T.M. [city: New York]: : Teachers College Press. .

[CIT0033] Ferguson , P.M. and Ferguson , D.L. (1996). . Communicating Adulthood. . Topics in Language Disorders , 16((3)): : 52.–.

[CIT0034] Ferguson , P.M. , Ferguson , D.L. and Taylor , S.J. (1991). , eds. . Interpreting Disability: A Qualitative Reader. , [city: New York]: : Teachers College Press. .

[CIT0035] Frönes , I. (1995). . Among Peers: On the Meaning of Peers in the Process of Socialization. , [city: Oslo]: : Scandinavian University Press. .

[CIT0036] Gabel , S. (). What is Disability Study? [unpublished paper/handout]. . Proceedings of the AERA Congress 2001, . [city: Seattle], [state: Washington]:

[CIT0037] Garfinkel , H. (1967). . Studies in Ethnomethodology. , [city: Englewood Cliffs], [state: NJ]: : Prentice‐Hall. .

[CIT0038] Geertz , C. (1973). . The Interpretation of Cultures. , [city: New York]: : Basic Books. .

[CIT0039] Glaser , B.G. and Strauss , A.L (1967). . . The Discovery of Grounded Theory: Strategies for Qualitative Research. , [city: New York]: : Aldine Publishing Company. .

[CIT0040] Goffman , E. (1963). . Stigma: Notes on the Management of Spoiled Identity. , [city: Englewood Cliffs], [state: NJ]: : Prentice Hall. .

[CIT0041] Grue , L. (1998). . Paa Tersklen [On the threshold]. , Rapport 6/1998[city: Oslo]: : Nova. .

[CIT0042] Grue , L. (1999). . “[Disabled Youth and the Quality of Life]. ”. In Funksjonshemmet Ungdom og Livskvalitet. , [city: Oslo], [state: Noyam]: : Gyldendahl. .

[CIT0043] Gustavsson , A. (1999). . “[Inside the outsiders’ group. On being different and participating]. ”. In Inifrån Utanförskapet. Om at vara Annorlunda och Delaktig. , [city: Stockholm]: : Johansson and Skyttmo förlag. .

[CIT0044] Hirch , J. (1999). . “A Poor Crippled Woman: Disability Identity in a Southern Mill Village.”. . Disability Studies Quarterly , 19: : 113.–.

[CIT0045] Högsbro , K. , Kirkebæk , B. , Blom , S.V. and Danö , E. (1999). . “[Youth, Development and Disability]. ”. In Ungdom, Udvikling og Handicap. , [city: Copenhagen]: : Samfundsliteratur. .

[CIT0046] Jóhannesson , Í (1993). . . Principles of legitimation in Educational Discourses. . Journal of Educational Policy , 8((4)): : 339.–.

[CIT0047] Kirkebæk , B. (2002). . Det Onde og de Gode: Om Forholdet mellem Paternalisme og Ligegyldighed. (in press). Sætersdal, B and Heggen, K. I den beste hensikt? “Ondskap” i behandlingssamfundet. , [city: Oslo]: : Akribe forlag. .

[CIT0048] Kvale , S. (1996). . InterView: An Introduction to Qualitative Research Interviewing. , [city: London]: : SAGE Publications Ldt. .

[CIT0057] Lutfyya , Z.M. (1991). . A feeling of being connected: Friendships between People with and without Learning Difficulties. . Disability Handicap and Society , 6: : 233.–.

[CIT0058] Margeirsdóttir , M. (1976). . Könnun á fjölda vangefinna og skiftingu þeirra eftir landshlutum [A report on the number of intellectually handicapped and their division between the different parts of Iceland]. , [city: Iceland]: : A report for the Minister of Health and Social Insurance. .

[CIT0059] Marks (1999). . . Dimensions of Oppression: Theorising the Embodied subject. . Disability and Society , 15: : 235.–.

[CIT0060] Mead , G.H. (1934). . Mind, Self, and Society. , [city: Chicago]: : University of Chicago Press. .

[CIT0061] Miles , M. (1992). . Concepts of Mental Retardation in Pakistan: Towards Cross‐cultural and Historical Perspectives. . Disability, Handicap, and Society , 7: : 235.–.

[CIT0062] Miles , M. (2001). . Studying Responses to Disability in South‐Asian histories: Approaches Personal, Practical and Pragmatic. . Disability and Society , 16: : 143.–.

[CIT0063] Mills , C.W. (1959). . The Sociologica Imagination. , [city: New York]: : Oxford University Press. .

[CIT0064] Oliver , M. (1990). . The politics of Disablement. , [city: Basingstoke]: : Macmillan. .

[CIT0065] Omanssky‐Gordon , Rosenblum, B. and Rosenblum , K. . (2001). . Bringing Disability into the Sociological Frame: A Comparison of Disability with Race, Sex and Sexual Orientation Statuses. . Disability and Society , 16: : 5.–.

[CIT0066] Ólafsson , S. , Hálfdánarson , G. and Kristjánsson , S. (1993). . “þróun velferðarríkisins [The Development of the Welfare State]. ”. In Íslensk þjóðfélagsþróun 1880–1990. , [city: Reykjavik]: : Háskólaútgáfan. .

[CIT0067] Peters , S. (1996). . “The Politics of Disability Identity. ”. In Disability and Society: Emerging Issues and Insights. , Edited by: Barton , L. : 215.–. [city: New York]: : Longman. .

[CIT0068] Priestley , M. , Corker , M. and Watson , N. (1995). . Unfinished Business: Disabled Children and Disability Identity. . Disability Studies Quarterly , 19: : 90.–.

[CIT0069] Punch , K.F. (1998). . Introduction to Social Research: Quantitative and Qualitative Approaches. , [city: London]: : Sage Publications. .

[CIT0070] Reglugerðir um framhaldsskóla 1996 og 1998 (). . “(Statutory regulations on Upper‐Secondary schools 1996 and 1998). ”. [city: Reykjavik]: : Ministry of Education. .

[CIT0071] Schlegel , A. (1998). . The Social Criteria of Adulthood. . Human Development , 41: : 323.–.

[CIT0072] Schutz , A. (1972). . The Phenomenology of the Social World. , [city: London]: : Heinemann Educational. .

[CIT0073] Shakespeare , T. , Gillespie‐Sells , K. and Davies , D. (1996). . The Sexual Politics of Disability, [city: Cassell], [state: London]:

[CIT0074] Sheldon , A. (1999). . Personal and Perplexing: Feminist Disability Politics evaluated. . Disability and Society , 2: : 93.–.

[CIT0075] Skýrsla Rannveigar Guðmundsdóttir, félagsmálaráðherra til Alþingis (1994). . . “[Report of R. Guðmundsdóttir, the Minister of Social Services, to Alþing, on Politics related to Disabled Icelanders]. ”.

[CIT0076] Smith , R. (2000). . Mystery or Typical Teen? The Social Construction of Academic Engagement and Disability. . Disability and Society , 15: : 909.–.

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Reading: New voices in Iceland young adults with disabilities in Iceland: The importance of relations...

Original Articles

New voices in Iceland young adults with disabilities in Iceland: The importance of relationships and natural supports

Author:

Dóra S. Bjarnason

Icelandic University of Education, GB

About Dóra S.

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