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Emplotting children's lives: developmental delay vs. disability


  • Landsman, Gail


While it is increasingly possible to envision "perfect" babies, it is not always the case that reproduction actually proceeds according to individual will; for example, there has been no recent reduction in rates of childhood disability. Nevertheless, in most studies of new reproductive technologies, the birth of those children whom few would actively choose--"defective" or disabled infants--is presented only in hypothetical terms. This paper argues for expanding the domain of reproduction to include research on the parenting of children with disabilities. Based on a qualitative research project carried out at a hospital-based newborn follow-up program that serves as an evaluation site determining eligibility for early intervention services for infants and young children with disabilities, this paper focuses on a particular part of women's experience of acquiring new knowledge about personhood and disability, that is, on the period of time when a woman has recently had confirmed that reproduction has, in her case, gone awry. Disability in many cultures, including the United States, diminishes personhood. I suggest that American mothers' narratives, by utilizing the concept of developmental delay, can assert personhood, or rather, the potential for its future attainment; in doing so, they justify ongoing nurturance of a disabled child in spite of negative attitudes about disability. A particular case of one mother's emplotment of her child's life within a story of developmental delay, in competition with the physician's story of disability, is analyzed. The paper concludes with reflections on how stories of developmental delay told by mothers just encountering a diagnosis of disability may differ from the stories told by those who have experienced mothering a disabled child over time, and on the implications of these differences for the cultural construction of personhood in the United States.

Suggested Citation

  • Landsman, Gail, 2003. "Emplotting children's lives: developmental delay vs. disability," Social Science & Medicine, Elsevier, vol. 56(9), pages 1947-1960, May.
  • Handle: RePEc:eee:socmed:v:56:y:2003:i:9:p:1947-1960

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    Cited by:

    1. Raspberry, Kelly Amanda & Skinner, Debra, 2011. "Negotiating desires and options: How mothers who carry the fragile X gene experience reproductive decisions," Social Science & Medicine, Elsevier, vol. 72(6), pages 992-998, March.
    2. Green, Sara Eleanor, 2007. ""We're tired, not sad": Benefits and burdens of mothering a child with a disability," Social Science & Medicine, Elsevier, vol. 64(1), pages 150-163, January.
    3. Shaked, Michal, 2005. "The social trajectory of illness: Autism in the ultraorthodox community in Israel," Social Science & Medicine, Elsevier, vol. 61(10), pages 2190-2200, November.
    4. Prussing, Erica & Sobo, Elisa J. & Walker, Elizabeth & Kurtin, Paul S., 2005. "Between 'desperation' and disability rights: a narrative analysis of complementary/alternative medicine use by parents for children with Down syndrome," Social Science & Medicine, Elsevier, vol. 60(3), pages 587-598, February.
    5. Landsman, Gail H., 2006. "What evidence, whose evidence?: Physical therapy in New York State's clinical practice guideline and in the lives of mothers of disabled children," Social Science & Medicine, Elsevier, vol. 62(11), pages 2670-2680, June.


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