Storying disability and impairment: Retrospective accounts of disabled family life

被引:59
作者
Goodley, D [1 ]
Tregaskis, C [1 ]
机构
[1] Univ Sheffield, Ctr Appl Disabil Studies, Sch Educ, Sheffield S10 2TN, S Yorkshire, England
关键词
disabilities; parents; children; narratives; mothers;
D O I
10.1177/1049732305285840
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
Much previous British research on disability and its effects on family life has seen impairment as a personal or family tragedy. In this article, the authors describe current English research that is asking families about their experiences of professional health and social care support since the birth of their disabled child. Interviews with the families uncovered a range of themes that challenged the personal tragedy approach. Far from being passive recipients of care, these are ordinary families seeking appropriate information from professionals to support them in their ordinary parenting role. For them, the professionalized care service should be based on negotiated relationships of equality that give respect to parental perspectives on what is right for their child. The authors conclude that these data are useful in describing ongoing barriers to enabling care provision and in offering a positive view of disabled family life.
引用
收藏
页码:630 / 646
页数:17
相关论文
共 54 条
[21]   'Learning difficulties', the social model of disability and impairment: challenging epistemologies [J].
Goodley, D .
DISABILITY & SOCIETY, 2001, 16 (02) :207-231
[22]  
Goodley D., 2000, SELF ADVOCACY LIVES
[23]  
Goodley D., 2004, Researching life stories: Method, theory and analyses in a biographical age
[24]  
GOODLEY D, IN PRESS DISABILITY
[25]  
GUSKIN S, 1963, HDB MENTAL DEFICIENC, P65
[26]   The social model of disability and the disappearing body: Towards a sociology of impairment [J].
Hughes, B ;
Paterson, K .
DISABILITY & SOCIETY, 1997, 12 (03) :325-340
[27]   Emplotting children's lives: developmental delay vs. disability [J].
Landsman, G .
SOCIAL SCIENCE & MEDICINE, 2003, 56 (09) :1947-1960
[28]   Reframing the meaning of disability to families: The embrace of paradox [J].
Larson, E .
SOCIAL SCIENCE & MEDICINE, 1998, 47 (07) :865-875
[29]  
LINCOLN YS, 1985, NATUREALISTIC INQUIR
[30]  
MCCONACHIE HR, 1999, CHILD CARE HLTH DEV, V26, P309