본문 바로가기
KERD
논문KCI 등재

Exploring parental experiences and practices associated with disabled children: From a disability studies perspective

1

조회

0

다운로드

7

인용

0

참고문헌

키워드

주제분류교육학

초록

The aim of this paper is to conduct a critical review of the literature on disabled children and their families, with a focus on the parental experiences of disablement and practices associated with disabled children. Drawing in varying degrees on critical and emancipatory insights developed within disability studies, this paper problematizes the limited notions of disabling conditions of parenting a disabled child and constitutes a direct challenge to the traditional and pathological approaches prevalent in the literature. This paper argues that adopting the social model of disability approaches provides several vantage points in the sense of allowing the broader range of disablement facing families with disabled children to be visible and challenging the orthodox view that the disabled child makes the family disabled. It also argues that parental experiences and practices associated disabled children need to be reinterpreted as social-political matters, not simply psychological ones.

Abstract

The aim of this paper is to conduct a critical review of the literature on disabled children and their families, with a focus on the parental experiences of disablement and practices associated with disabled children. Drawing in varying degrees on critical and emancipatory insights developed within disability studies, this paper problematizes the limited notions of disabling conditions of parenting a disabled child and constitutes a direct challenge to the traditional and pathological approaches prevalent in the literature. This paper argues that adopting the social model of disability approaches provides several vantage points in the sense of allowing the broader range of disablement facing families with disabled children to be visible and challenging the orthodox view that the disabled child makes the family disabled. It also argues that parental experiences and practices associated disabled children need to be reinterpreted as social-political matters, not simply psychological ones.

참고문헌 (96)

  1. Abberley, P., "The Concept of oppression and the development of a social theory of disability", Disability, Handicap and Society, 2(1), pp.5~19 (1987)
  2. Atkinson, N., "All in the family: Siblings and disability", pp.1995, National Children’s Home
  3. Baldwin, S., "The costs of caring: Families with disabled children" (1985), Routledge & K. Paul
  4. Baldwin, S., "Living with disability - the experience of parents and children. in: The sociology of the family" (1994), Blackwell Publishing
  5. Ball, M., "Disabled children: Directions for their future care" (1998), Department of Health
  6. Barnes, C., "Disabling imagery and the media. in: An exploration of media representations of disabled people" (1992), British Council of Organizations of Disabled people
  7. Barnes, C., "A legacy of oppression: A history of disability in western culture. in: Disability studies: Past, present and future" (1997), The Disability Press
  8. Barnes, C., "Exploring the divide. in: Illness and disability" (1996), Disability Press
  9. Barnes, C., "Disability" (2003), Polity Press
  10. Barnes, C., "Exploring disability. in: A sociological introduction" (1999), Polity
  11. Begum, N., "Disabled women and the feminist agenda", Feminist Review, 40, pp.70~84 (1992)
  12. Beresford, B., "Positively parents. in: Caring for a severely disabled child" (1994), HMSO
  13. Beresford, B., "Expert opinions. in: A national survey of parents caring for a severely disabled child" (1995), Policy Press
  14. Beresford, B., "What works in services for families with a disabled children" (1996), Barnardo’s
  15. Bérubé, M., "Life as we know it. in: A father, a family, and an exceptional child" (1996), Pantheon Books
  16. Biklen, D., "Framed: Print journalism’s treatment of disability issues. in: Images of the disabled, Disabling images" (1987), Prager
  17. Bower, A. M., "Mothering in families with and without a child with disability", International Journal of Disability, Development and Education, 45(3), pp.313~322 (1998)
  18. Bury, M., "Defining and researching disability: Challenges and responses. in: Exploring the divide: Illness and disability" (1996), The Disability Press
  19. Case, S., "Refocusing on the parents: What are the social issues of concern for parents of disabled children", Disability and Society, 15(2), pp.271~292 (2000)
  20. Curry, R, "The exceptional family: Walking the edge of tragedy and transformation. in: Chronic illness: From experience to policy" (1995), Indiana University Press
  21. Daly, M., "Against all odds. in: Family life on a low income in Ireland" (2002), IPA
  22. Darling, R. B., "Families against society. in: A study of reactions to children with birth defects" (1979), Sage Publications
  23. Darling, R. B., "Parental entrepreneurship: A consumerist response to professional dominance", Journal of Special Issues, 44(1), pp.141~158 (1988)
  24. Darling, R. B., "Children who are different. in: Meeting the challenges of birth defects in society" (1982), C. V. Mosby
  25. Davis, L., "Enforcing Normalcy. in: Disability, deafness and the body" (1995), Verso
  26. Dowling, M., "Families with children with disabilities - inequalities and the social model", Disability and Society, 16(1), pp.21~35 (2001)
  27. Annual monitoring report of media, "DPF", Disabled People First, ~ (2002)
  28. Fawcett, B., "Feminist perspectives on disability" (2000), Pearson Education
  29. Featherstone, H., "A difference in the family. in: Life with a disabled child" (1980), Basic Books
  30. Ferguson, P. M., "Mapping the Family. in: Handbook of disability studies" (2001), Sage
  31. Ferguson, P. M., "Lessons form life: Person and parental perspectives on school, child, and disability. in: Schooling and disability: Eighty-eighth yearbook of the National Society for the study of education" (1989), The University of Chicago Press
  32. Ferguson, P. M., "The experience of disability in families: A synthesis of research and parent narratives. in: Prenatal testing and disability rights" (2000), George University Press
  33. Knowledge, "Power", pp.1980, Foucault, M.
  34. Fraser, N., "A genealogy of dependency: Tracing a keyword of the US welfare state. in: Justice interrupts: Critical reflections on “Postsocialist” Condition" (1997), Routledge
  35. Glendinning, C., "Unshared care: Parents and their disabled children" (1983), Routledge & Kegan Paul
  36. Goodey, C., "Living in the real world: Families speak about Down’s Syndrome" (1991), The Twenty-one Press
  37. Gray, D. E., "High functioning autistic children and the construction of normal family life", Social Science and Medicine, 44(8), pp.1097~1106 (1997)
  38. Green, S. E, "What do you mean “what’s wrong with her?”: Stigma and the lives of families of children with disabilities", Social Science and Medicine, 57(8), pp.1361~1374 (2003)
  39. Greenspan, M., "Exceptional mothering in a “Normal” world. in: Mothering against the odds: Diverse voices of contemporary mothers" (1998), The Guilford Press
  40. Gregory, R. J., "Challenging motherhood: Mothers and their deaf children. in: Motherhood: Meanings, practices and ideologies" (1991), Sage
  41. Hevey, D., "The creatures time forgot. in: Photography and disability imagery" (1993), Routledge
  42. Hillyer, B., "Feminism and disability" (1993), University of Oklahoma Press
  43. Hughes, B., "Medicine and the aesthetic invalidation of disabled people", Disability and Society, 15(4), pp.555~568 (2000)
  44. Jenkins, R., "Questions of competence. in: Culture, classification and intellectual disability" (1998), Cambridge University Press
  45. Kittay, E. F., "Love’s labor. in: Essays on women, equality, and dependency" (1999), Routledge
  46. Landsman, G. H., "Reconstructing motherhood in the age of “perfect” babies: Mothers of infants and toddlers with disabilities", Signs: Journal Women in Culture and Society, 24(1), pp.69~99 (1998)
  47. Landsman, G. H., "Does god give special kids to special parents?: Personhood and the child with disabilities as gift and as giver. in: Transformative motherhood: On giving and getting in a consumer culture" (1999), New York university press
  48. Lawton, D., "Complex numbers. in: Families with more than one disabled child" (1998), University of York: Social Policy Research Unit
  49. Linton, S., "Claiming disability. in: Knowledge and identity" (1998), New York University Press
  50. Lloyd, M., "Does she boil eggs? Towards a feminist model of disability", Disability, Handicap and Society, 7(3), pp.207~221 (1992)
  51. McKeever, P., "Mothering children who have disabilities: A Bourdieusian interpretation of maternal practices", Social Science and Medicine, 59, pp.1177~1191 (2004)
  52. Middleton, L., "Making a difference. in: Social work with disabled children" (1996), Venture Press
  53. Middleton, L., "Disabled children. in: Challenging social exclusion" (1999), Blackwell Science
  54. Morris, J., "Pride against prejudice. in: Transforming attitudes to disability" (1991), Women’s Press
  55. Morris, J., "Independent lives? Community care and disabled people" (1993), Macmillan
  56. Murray, P., "Disabled children, parents and professionals: Partnership on whose terms", Disability and Society, 15(4), pp.683~698 (2000)
  57. Murray, P., "Let our children be. in: A collection of stories" (2000), Parents with Attitude
  58. Oldman, C., "Homes unfit for children. in: Housing, disabled children and their families", pp.1998, The Policy Press
  59. Oliver, M., "Disability and dependency: A creation of industrialised societies. in: Disability and dependency" (1989), Falmer Press
  60. Oliver, M., "The politics of disablement. in: A sociological approach" (1990), St. Martin’s Press.
  61. Oliver, M., "Disabled people and social policy. in: From exclusion to inclusion" (1998), Longman
  62. Oliver, M., "Social work with disabled people" (2006), Palgrave Macmillan
  63. Parsons, T., "The social system" (1951), Free Press
  64. Philip, M., "Children with disabilities and their families. in: A review of research" (1982), NFER-Nelson Publishing Company Ltd
  65. Priestley, M., "Disability politics and community care" (1999), Jessica Kingsley Publishers
  66. Priestley, M., "Disability. in: A life course approach" (2003), Polity
  67. Read, J., "Disability, the family, and society. in: Listening to mothers" (2000), Open University Press
  68. Read, J., "Disabled children and the law. in: Research and good practice" (2001), Jessica Kingsley
  69. Reinders, H. S., "The future of the disabled in liberal society. in: An ethical analysis" (2000), University of Notre Dame Press
  70. Scorgie, K., "From devastation to transformation: Managing life when a child is disabled", 박사, pp.1996
  71. Scorgie, K., "Transformational outcomes associated with parenting children who have disabilities", Mental Retardation, 38(3), pp.195~206 (2000)
  72. Seligman, M., "Ordinary families, special children. in: A systems approach to childhood disability" (1997), Guilford Press
  73. Sevenhuijsen, S., "Citizenship and the ethics of care. in: Feminist considerations on justice, morality and politics" (1998), Routledge
  74. Shakespeare, T., "Cultural representation of disabled people: Dustbins for disavowal", Disability and Society, 9(3), pp.283~301 (1994)
  75. Shakespeare, T., "Help" (2002), Venture Press
  76. Shakespeare, T., "Theoretical perspectives on research with disabled children. in: Growing up with disability" (1998), Jessica Kingsley Publishers
  77. Shilling, C., "The body and social theory" (1993), Sage
  78. Sloper, O., "Factors related to stress and satisfaction with life in families of children with Down’s Syndrome", Journal of Child Psychology and Psychiatry, 32(4), pp.655~676 (1991)
  79. Sloper, P., "Service needs of families of children with severe physical disability", Child: Care, Health and Development, 18, pp.259~282 (1992)
  80. Swain, J., "Disabling barriers - Enabling environments" (1993), Sage
  81. Thomas, C., "Female forms. in: Experiencing and understanding disability" (1999), Open University Press
  82. Thomas, D., "The experience of handicap" (1982), Methuen
  83. Thomson, R. G., "Extraordinary bodies. in: Figuring physical disability in American culture and literature" (1997), Columbia University Press
  84. Todd, S., "Mum’s the world!: Maternal accounts of dealing with the professional world", Journal of Applied Research in Intellectual Disabilities, 16, pp.224~229 (2003)
  85. Tozer, R., "At the double. in: Supporting families with two or more severely disabled children", pp.1999, National Children’s Bureau
  86. Traustadottir, R., "Mothers who care: Gender, disability and family life", Journal of Family Issues, 12(2), pp.211~228 (1991)
  87. Traustadottir, R., "Disability reform and women’s caring work. in: Care work: Gender, labor and the welfare state" (2000), Routledge
  88. Tronto, J. C., "Moral boundaries. in: A political argument for an ethic of care" (1993), Routledge
  89. Turner, B. S., "Regulating bodies. in: Essays in medical sociology" (1992), Routledge
  90. Twigg, J., "Carers perceived. in: Policy and practice in informal care" (1994), Open University Press
  91. Wendell, S., "The rejected body. in: Feminist philosophical reflections on disability" (1996), Routledge
  92. Wickham-Searl, P., "Careers in caring: Mothers of children with disabilities", Disability, Handicap and Society, 7(1), pp.5~17 (1992)
  93. Wickham-Searl, P., "Mothers with a mission. in: Interpreting disability: A Qualitative reader" (1992), Teachers College Press
  94. Media: Making distorted imagery of disabled people. In 2001 annual report of news media, "Yi, I. Y.", DPF(Disabled People First), ~ (2001)
  95. Young, I. M., "Justice and the politics of difference" (1990), Princeton University Press
  96. Young, I. M., "Mothers, citizenship and independence: A critique of pure family values", Ethics, 105(3), pp.535~556 (1995)

관련 논문AI추천

이 간행물의 다른 논문 (19건)