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.
Case, P. (2000). Refocusing on the parent: Whatare the social issues of concern for parents of disabled children?Disability and Society, 15(2), 271-292.
10.
Clandinin, D. J.,& Connelly, F. M. (1994). Personal experience methods. In N. Denzin& Y. Lincoln (Eds.), Handbook of qualitative research(pp. 413-427). Thousand Oaks, CA: Sage.
11.
Corker, M., & Shakespeare, T. (Eds.). (2002). Disability/postmodernity: Embodying disability theory. London: Continuum.
12.
Dexter, L. A. (1956). Towards a sociology of the mentally defective. American Journal of Mental Deficiency, 61, 10-16.
13.
Dexter, L. A. (1957). A social theory of mental deficiency. Journal of Mental Deficiency, 62, 920-928.
14.
Edgerton, R. B. (1967). The cloak of competence: Stigma in the lives of the mentally retarded. Berkeley: University of California Press.
15.
Foucault, M. (1991). Discipline and punish: The birth of the prison. Harmondsworth, UK: Penguin.
16.
Goodley, D. (1997). Locating self-advocacy in models of disability: Understanding disability in the support of self-advocates with learning difficulties. Disability and Society, 12(3), 367-379.
17.
Goodley, D. (2000). Self-advocacy in the lives of people with learning difficulties: The politics of resilience. Buckingham, UK: Open University Press.
18.
Goodley, D. (2001). “Learning difficulties”—The social model of disability and impairment: Challenging epistemologies. Disability and Society, 16(2), 207-231.
19.
Goodley, D., & Lawthom, R. (in press). Disability and psychology: Critical introductions and reflections. London: Palgrave.
20.
Goodley, D., Lawthom, R., Clough, P.,& Moore, M. (2004). Researching life stories: Method, theory and analyses in a biographical age. London: Routledge Falmer.
21.
Guskin, S. (1963). Social psychologies of mental deficiency. In N. R. Ellis (Ed.), Handbook of mental deficiency(pp. 65-77). New York: McGraw-Hill.
22.
Hughes, B., & Paterson, K. (1997). The social model of disability and the disappearing body: Towards a sociology of impairment. Disability and Society, 12, 325-340.
23.
Landsman, G., (2003). Emplotting children's lives: Developmental delay vs. disability. Social Science & Medicine. 56, 1947-1960.
24.
Larson, E. (1998). Reframing the meaning of disability to families: The embrace of paradox. Social Science & Medicine. 47, 865-875.
25.
Leach Scully, J. (2004, July). Normative ethics and non-normative embodiment. Paper presented at the Disability Studies: Putting Theory Into Practice Conference, Lancaster, UK.
26.
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
27.
Lyotard, J. (1979). The postmodern condition. Paris: Minuit.
28.
McConachie, H. R. (1999). Conceptual frameworks in evaluation of multidisciplinary services for children with disabilities. Child: Care, Health and Development, 26(4), 309-322.
29.
McKeever, P.,& Miller, K. L. (2004). Mothering childrenwhohave disabilities: ABourdieusian interpretation of maternal practices. Social Science & Medicine, 59(6), 1177-1191.
30.
Murray, P. (2003). Reflections on living with illness, impairment and death. Disability and Society, 18(4), 523-526.
31.
Oliver, M. (1990). The politics of disablement. Basingstoke, UK: Macmillan.
32.
Oliver, M. (1996). Understanding disability: From theory to practice. Basingstoke, UK: Macmillan.
33.
Parker, T. (1990). Life after life: Interviews with twelve murderers. London: Secker & Warburg.
34.
Paterson, K.,& Hughes, B. (1999) Disability studies and phenomenology: The carnal politics of everyday life. Disability and Society, 14, 597-610.
35.
Phoenix, A. (1991). Young mothers?Cambridge, UK: Polity.
36.
Phoenix, A., Woollett, A.,& Lloyd, E. (Eds.). (1991). Motherhood: Meanings, practices and ideologies. London: Sage.
37.
Plummer, K. (1983). Documents of life: An introduction to the problems and literature of a humanistic method. London: Allen and Unwin.
38.
Read, J. (1991). There was never really any choice—The experience of mothers of disabled children in the United Kingdom. Women's Studies International Forum, 14(6), 561-571.
39.
Read, J. (2000). Disability, the family, and society: Listening to mothers. Buckingham, UK: Open University Press.
40.
Read, J., & Clements, L. (2004). Demonstrably awful: The right to life and the selective non-treatment of disabled babies and young children. Journal of Law and Society, 31(4), 482-509.
41.
Reeve, D. (2002) Negotiating psycho-emotional dimensions of disability and their influence on identity constructions. Disability & Society, 17(5), 493-508.
42.
Ryan, S. (2004, July). “Busy behaviour” in the “Land of the Golden M”: Going out with learning disabled children in public places. Paper presented at the Disability Studies: Putting Theory Into Practice Conference, Lancaster, UK.
43.
Shakespeare, T., (2000). Help. London: Venture.
44.
Sloper, P. (1999). Models of service support for parents of disabled children: What do we know? What do we need to know?Child: Care, Health and Development, 25(2) 85-99.
45.
Smith, L.,& Daughtrey, H. (2000). Weaving the seamless web of care: An analysis of parents’ perceptions of their needs following discharge of their child from hospital. Journal of Advanced Nursing, 31(4), 812-820.
46.
Swain, J.,& French, S. (2000). Towards an affirmation model of disability. Disability and Society, 15(4), 569-582.
47.
Thomas, C. (1997). The baby and the bathwater: Disabledwomenand motherhood in social context. Sociology of Health and Illness, 19(5), 622-643.
48.
Thomas, C. (1999). Female forms: Experiencing and understanding disability. Buckingham, UK: Open University Press.
49.
Thompson, P. (1988). The voice of the past: Oral history(2nd ed.). Oxford, UK: Oxford University Press.
50.
Traustadottir, R. (1991). Mothers who care: Gender, disability, and family life. Journal of Family Issues, 12(2), 211-228.
51.
Tregaskis, C. (2004). Constructions of disability: Researching the interface between disabled and non-disabled people. London: Routledge.
52.
Tregaskis, C., & Goodley, D. (in press). Disability research with non/disabled people: Towards a relational methodology of research production. International Journal of Social Research Methodology.
53.
Union of the Physically Impaired Against Segregation. (1976). Fundamental principles of disability. London: Author.
54.
Watson, N. (2004). The dialectics of disability: Thoughts towards a social model for the 21st century. InC. Barnes (Ed.), Fromtheory to practice: Implementing the social model of disability(pp. 218-221). Leeds, UK: Disability Press.
