Human dignity at stake – how parents of disabled children experience the welfare system

Tonje Gundersen

doi:10.1080/15017419.2011.592955

Human dignity at stake – how parents of disabled children experience the welfare system

Scandinavian Journal of Disability Research

Volume 14 (2012): Issue 4

By: Tonje Gundersen

Open Access

|Aug 2012

ASD . 2005 . Strategiplan for familier med barn som har nedsatt funksjonsevne Oslo: Arbeids-ogsosialdepartementet . Plan for families with disabled children .
Search in Google Scholar Back to article
Askheim , O.P. , T. Andersen , and J. Eriksen . 2006 . Sosiale tjenester for familier som har barn med funksjonsnedsettelser [Social services for families of disabled children . Not available in English] Oslo : Gyldendal Akademiske .
Search in Google Scholar Back to article
Berger , P.L. 1966 . Identity as a problem in the sociology of knowledge . European Journal of Sociology 7 , no. 1 : 105 – 15 .
Search in Google Scholar Back to article
Blanche , M.T. and Durrheim , K. 2004 . Research in practice: Applied methods for the social sciences , Cape Town : University of Cape Town Press .
Search in Google Scholar Back to article
Bleiklie , I. 1997 . Service regimes in public welfare administration , Tano Aschehougs .
Search in Google Scholar Back to article
Brett , J. 2002 . The experience of disability from the perspective of parents of children with profound impairments: Is it time for an alternative model of disability . Disability & Society , 17 ( 7 ) : 825 – 43 .
Search in Google Scholar Back to article
Child Welfare Act . LOV - 1981 - 04-08-7 Lov om barn og foreldre .
Search in Google Scholar Back to article
Collins , R. 1994 . Four sociological traditions , New York : Oxford University Press .
Search in Google Scholar Back to article
Fisher , P. 2008 . Wellbeing and empowerment: The importance of recognition . Sociology of Health & Illness , 30 ( 4 ) : 583 – 98 .
Search in Google Scholar Back to article
Fisher , P. and Goodley , D. 2007 . The linear medical model of disability: Mothers of disabled babies resist with counter-narratives . Sociology of Health & Illness , 29 ( 1 ) : 66 – 81 .
Search in Google Scholar Back to article
Giddens , A. 1994 . “ Living in post-traditional society ” . In Reflexive modernization: Politics, tradition, and aesthetics in the modern social order , Edited by: Beck , U. , Giddens , A. and Lash , S. 184 – 97 . Cambridge : Polity Press .
Search in Google Scholar Back to article
Goffman , E. 1980 . “ On cooling the mark out ” . In The pleasures of sociology , Edited by: Coser , L.A. 98 – 120 . New York : A Mentor Book, New American Library .
Search in Google Scholar Back to article
Grue , L. 1998 . På terskelen. En undersøkelse av funksjonshemmede ungdoms sosiale tilhørighet, selvbilde og livskvalitet. [On the threshold. A examination of disabled youth's social belonging, self image and quality of life. Not available in English] Oslo : NOVA .
Search in Google Scholar Back to article
Gundersen , T. 2011 . ‘One wants to know what a chromosome is': The internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder . Sociology of Health & Illness 33 , no. 1 : 81 – 95 .
Search in Google Scholar Back to article
Gustavsson , A. , Tøssebro , J. and Traustadóttir , R. 2005 . “ Introduction: Approaches and perspectives in Nordic disability research ” . In Resistance, reflections and change. Nordic disability research , Edited by: Gustavsson , A. , Sandvin , J. , Traustadóttir , R. and Tøssebro , J. 23 – 44 . Lund : Studentlitteratur .
Search in Google Scholar Back to article
Helgøy , I. , Ravneberg , B. and Solvang , P. 2000 . “ Funksjonshemmede, deres hjelpere og byråkratiske ubehageligheter [Disabled people, their helpers and bureaucracy unpleasantness. Not available in English] ” . In Usynlighetskappen: levekår for funksjonshemmede , Edited by: Romøren , T.I. Oslo : Akribe . 312 s
Search in Google Scholar Back to article
Honneth , A. 2003 . “ Redistribution as recognition: A response to Nancy ” . In Redistribution or recognition? A political philosophical exchange , Edited by: Fraser , N. and Honneth , A. 110 – 97 . London and New York : Verso .
Search in Google Scholar Back to article
Kittay , E.F. 2002 . “ When care is just and justice is caring: Justice and mental retardation ” . In The subject of care. Feminist prespectives on dependency , Edited by: Kittay , E.F. and Feder , E.K. 257 – 77 . Lanham , MD : Rowman & Littlefield Publishers .
Search in Google Scholar Back to article
Kjølsrød , L. 2005 . “ En tjenesteintens velferdsstat [A service intensive welfare state] ” . In Det Norske samfunn [The Norwegian Society. Not available in English] , Edited by: Frønes , I. and Kjølsrød , L. 184 – 210 . Oslo : Gyldendal Akademiske .
Search in Google Scholar Back to article
Kjønstad , A. , J.F. Bernt , A. Kjellevold , and H. Hove . 2000 . Sosial trygghet og rettssikkerhet – under sosialtjenesteloven og barneverntjenesten [Social security and legal protection – under the Social Services Act and the child welfare system. Not available in English] . Bergen : Fagbokforlaget .
Search in Google Scholar Back to article
Kvale , S. 1996 . InterViews: An introduction to qualitative research interviewing , London : Sage .
Search in Google Scholar Back to article
Landsman , H.G. 2009 . Reconstructing motherhood and disability in the age of “perfect” babies , New York : Routledge .
Search in Google Scholar Back to article
Lipsky , M. 1980 . Street-level bureaucracy. Dilemmas of the individual in public services , New York : Russel Sage Foundation .
Search in Google Scholar Back to article
Lundeby , H. , and J. Tøssebro . 2006 . Kampen og tilfredsheten [Fighting and satisfaction]. In Sosiale tjenester for familier som har barn med funksjonsnedsettelser [Social services for families of disabled children. Not available in English] , ed. O.P. Askheim , T. Andersen and J. Eriksen , 27 – 47 . Lillehammer/Oslo : Gyldendal Akademiske .
Search in Google Scholar Back to article
Lundeby , H. , and J. Tøssebro . 2008 . Exploring the experiences of “not being listened to” from the perspective of parents with disabled children . Scandinavian Journal of Disability Research 10 , no. 4 : 258 – 74 .
Search in Google Scholar Back to article
McLaughlin , J. 2005 . Exploring diagnostic prosesses: Social science perspectives . Archives of Desease in Childhood , 90 ( 3 ) : 284 – 87 .
Search in Google Scholar Back to article
Ministry of Children, Equality and Social Inclusion . 2011 . http://www.regjeringen.no/en/dep/bld/Topics/disabled-people.html?id=987
Search in Google Scholar Back to article
Mitchell , W. and Sloper , P. 2001 . Quality in services for disabled children and their families . Children & Society , 15 ( 4 ) : 237 – 52 .
Search in Google Scholar Back to article
National Insurance Act. Lov 1997 -02-28-19 Lov om folketrygd .
Search in Google Scholar Back to article
NOU 2005:06 . Samspill og tillit [Interaction and trust]. Official Norwegian Reports . Oslo : Kommunal og regionaldepartementet
Search in Google Scholar Back to article
Nussbaum , M.C. 2002 . Capabilities and social justice . International Studies Review , 4 ( 2 ) : 123 – 35 .
Search in Google Scholar Back to article
Nussbaum , M.C. 2006 . Frontiers of justice: Disability, nationality, species membership , Cambridge , MA and London : The Belknap Press of Harvard University Press .
Search in Google Scholar Back to article
Nussbaum , M.C. and Sen , A. 1993 . The quality of life , Oxford : Clarendon Press .
Search in Google Scholar Back to article
Ot.prp.nr.44 2007–2008 . Diskriminerings – og tilgjengelighetsloven. Oslo: Barne-, likestillings – og inkluderingsdepartementet . Discrimination and accessability law .
Search in Google Scholar Back to article
Olsen , B.C.R. 2001 . Med barnet i hverdagen. Omsorgserfaringer til foreldre til barn med cerebral parese [Living with a disabled child, Parents caregiving experiences when their child has cerebral palsy. Not available in English] . HiO-rapport 2001 nr 4 . Oslo : Høgskolen i Oslo .
Search in Google Scholar Back to article
Olsen , B.C.R. 2006 . Avlastning-et tilbud med mange fasetter [Assistance – an offer with many apects. Not available in English] . In Sosiale tjenester; for familier som har barn med funksjonsnedsettelser [Social services for families of disabled children. Not available in English] , O.P. Askheim , T. Andersen and J. Eriksen , 78 – 93 . Oslo : Gyldendal Akademiske .
Search in Google Scholar Back to article
Read , J. 2000 . Disability, the family, and society: Listening to mothers , Buckingham : Open University Press .
Search in Google Scholar Back to article
Runswick-Cole , K. 2007 . The tribunal was the most stressful thing: More stressful than my son's diagnosis or behaviour . Disability & Society , 22 ( 3 ) : 315 – 29 .
Search in Google Scholar Back to article
Sen , A. 2005 . “ Capabilities, lists, and public reason: Continuing the conversation ” . In Amartya Sen's work and ideas: A gender perspective , Edited by: Agarwal , B. , Humphries , J. and Robeyns , I. 335 – 38 . London : Routledge .
Search in Google Scholar Back to article
Social Services Act. Lov 1991 -12-13-81 Lov om sosiale tjenester mv .
Search in Google Scholar Back to article
St.meld.40 2002–2003 . Nedbygging av funksjonshemmende barrierer (White paper. Dismantelig disabeling barrieres).
Search in Google Scholar Back to article
Strauss , A. and Corbin , J. 1998 . Basics of quaitative research , Thousand Oaks , CA : SAGE .
Search in Google Scholar Back to article
Terum , L.I. 2003 . Portvakt i velferdsstaten. Om skjønn og beslutninger i sosialtjenesten [Gatekeepers of the welfare state. Not available in English] , Oslo : Kommuneforlaget AS .
Search in Google Scholar Back to article
Todd , S. , and S. Jones . 2003 . ‘Mum's the Word!': Maternal accounts of dealing with the professional world . Journal of Applied Research in Intellectual Disabilities 16 , no. 3 : 229 – 24 .
Search in Google Scholar Back to article
Turner , R.H. 1976 . The real self: From institutions to impulse . The American Journal of Sociology , 81 ( 5 ) : 989 – 1016 .
Search in Google Scholar Back to article
Tøssebro , J. and Lundeby , H. 2002 . Å vokse opp med funksjonshemming – de første årene. [Growing up with disabilities – the first years. Not available in English] , Oslo : Gyldendal Akademiske .
Search in Google Scholar Back to article
Working Environment Act. Lov 1977 -02-04-4. Lov om arbeidsvern og arbeidsmiljø mv .
Search in Google Scholar Back to article
Yar , M. 2001 . Recognition and the politics of human(e) desire. Theory . Culture and Society , 18 : 57 – 76 .
Search in Google Scholar Back to article