“ALL TERMS HAVE A NEGATIVE APPENDIX” PARENTS OF OFFSPRING WITH INTELLECTUAL DISABILITY (ID) AND THEIR EXPERIENCES WITH NAMING THIS DIAGNOSIS – AN INTERVIEW STUDY

Authors

  • Carl Chr. Bachke University of Agder

DOI:

https://doi.org/10.17770/ercs2013.2167

Abstract

16 parents with offspring with ID were interviewed, using a guide that asks for their experiences of the naming the ID-diagnosis, of different labels that have been used, of how labels have changed during the last half century, of how they explain label-changes, and of whether some of the explanations might be considered substantial. Generally there is an overlap with findings of similar studies among professionals. However, parents add new nuances and emphasize in a more thorough way the substantiality of two causal explanations of the changes: the impact of ethical training and the influence of users

References

Aspis, S. (2000). Researching our history: Who is in charge? In Crossing boundaries:

Change and continuity in the history of learnings disability, eds. Brigham, L.; Atkinson,

D.; Jackson, M.; Rolph, S. & Walmsley, J.; 1-5. Kidderminster, UK: Bild Publications.

Atkinson, D., Walmsley, J. (2010). History from the inside: towards an inclusive history

of intellectual disability. Scandinavian Journal of Disability Research, 12, 4, pp. 273-

Bachke, C.C. (2006). Utviklingshemming: betegnelser i endring i Norden? En

litteraturstudie i et terminologisk villnis, Spesialpedagogikk 71, 6, pp.18-28.

Bachke, C.C. (2012). Professionals’ naming of intellectual disability, past and present

practice and rationales. Scandinavian Journal of Disability Research, 14, 1, pp. 56-73.

Barnes, C. (2004). Reflections on doing emancipatory disability research. In Swain, J.;

French, S.; Barnes, C. Thomas, C. (2004). Disabling Barriers – Enabling Environments.

London: Sage Publications Ltd., pp. 47-53.

Ben-Zeev, D.; Young, M.A.; Corrigan, P.W. (2010). DSM-V and the stigma of mental

illness, Journal of Mental Health, 19, 4, 318-327.

Chamaz, K. (2006). Constructing grounded theory: A practical guide through

qualitative analysis. London: SAGE.

Christie, N. (1982). Pinens begrensning. Oslo: Universitetsforlaget.

Cresswell, J.W. (2003). Research design: Qualitative, quantitative and mixed methods

approaches. Thousand Oaks CA: SAGE

Eck, O.R. (1998). Funksjonshemmede småbarn i hjem og skole. Oslo: Tano –

Aschehoug.

Ellingsen, K.E. (2007). Hvem sine valg og verdier? I Ellingsen (2007, red.):

Selvbestemmelse. Egne og andres valg og verdier. Oslo: Universitetsforlaget, pp. 25-37.

Enns, H., Neufeldt, H. A. (2003). In pursuit for equal participation, Concord, Ontario:

Captus Press.

Fejes, A., Thornberg, R. (eds., 2009). Handbok i kvalitativ analys. Stockholm: Liber.

Foucault, M. (1973). Madness and civilization. New York: Tandom House.

Goffman, E. (1975). Stigma: om afvigerens sociale identitet. København: Gyldendal.

Grönvik, L. (2007). Definitions of Disability in Social Sciences: Methodological

Perspectives. Doctor Thesis, Uppsala: Acta Universitatis Upsaliensis.

Jørgensen, M. W., Phillips, L. (2008). Diskursanalyse som teori og metode, 6. opl.

Fredriksberg C: Roskilde Universitetsforlag, Samfundslitteratur.

Kittelsaa, A. M. (2008). Et ganske normalt liv: utviklingshemming, dagligliv og

selvforståelse, Doctor Thesis. Trondheim: Fakultet for samfunnsvitenskap og

teknologiledelse, Institutt for sosialt arbeid og helsevitenskap, NTNU.

Kittelsaa, A. M. (2010). En dobbelt utfordring – å intervjue unge med

utviklingshemming. I Gjærum, RG (2010): Usedvanlig kvalitativ forskning.

Metodologiske utfordringer når informantene har utviklingshemming, Oslo:

Universitetsforlaget, pp.162-189

Kvale, S. (2007). Inter Views: an introduction to qualitative research interviewing,

London: Sage.

Lundeberg, I. R. (2008). De urettmessige mindreverdige. Domstolenes maktkritiske

funksjon i saker om spesialundervisning. PhD diss. Universitetet i Bergen:

Rokkansenteret.

Nordic Network of Disability Research Conference, Nyborg, DK (2.-4. April, 2009):

(http://www.dpu.dk/site.aspx?p=11887)

Opdal, L. R., Rognhaug, B. (2004). Utviklingshemming. In Befring, E & Tangen, R.:

Spesialpedagogikk. 3. utg. Oslo: Cappelen Akademiske, pp. 272-289.

Ringdal, K. (2001). Enhet og mangfold, Bergen: Fagbokforlaget.

Rognhaug, B., Gomnæs, U. T. (2008). Utviklingshemning – mangfold og lærehemning.

In Befring & Tangen (red.): Spesialpedagogikk. Oslo: Cappelen Akademisk, pp.299-

Shakespeare, T. (2006). Disability rights and wrongs. London and New York:

Routledge.

Sonnander, K. (2005). Boøogical and social aspects of intellectual disability. In

Resistance, reflection and change. Nordic diability research, eds. A Gustavsson, J

Sandvin, R Traustadottir and J Tøssebro. Lund: Studentlitteratur.

Språkspalten (1998). Hyperkinetiske forstyrrelser – AD/HD, MBD/DAMP – hva skal vi

kalle det? Tidsskrift for Den Norske Lægeforening, 118, 10, 1600-1.

Starrin, B. (2007). Empowerment som forskningsstrategi – eksemplet deltakerbasert

forskning. I Askheim, OP & Starrin, B (2007, red.): Empowerment i teori og praksis.

Oslo: Gyldendal Akademisk, pp.154-164.

Tidemand-Andersen, C. (2008). Elever med utviklingshemming. In Rygvold, A-L &

Ogden T (2008, red.): Innføring i spesialpedagogikk. 4. utg. Oslo: Gyldendal

Akademisk, pp.170-211.

Van Os, J (2010): Are psychiatric diagnoses of psychosis scientific and useful? The

case of schizophrenia, Journal of Mental Health, 19: 4, pp. 305-317

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2013-12-01

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