Sorry for Being Sorry: The cultural production of sorrow in the birth of a baby with Down syndrome

This dissertation attends to the cultural production of sorrow that surrounds representations of lives with Down syndrome in a North American context. Working at the intersections of interpretive disability studies and childhood studies, this work explores “wraps of sorrow” that are represented before, at, and following the birth of a baby with Down syndrome. Each chapter addresses the following research question: How might historical and present-day representations of Down syndrome reflect the cultural production of Down syndrome as a source of sorrow? I address prenatal diagnoses of Down syndrome and how medical/scientific prenatal testing may generate a sense of sorrow before the birth of a baby with Down syndrome. I also address sorrow expressed in media representations of Down syndrome. This includes an analysis of parenting books, as well as a discussion of the relationship between a mother and her son on the iconic children’s television show, Sesame Street. I do so to show how sorrow may also be generated following birth. Additionally, my analysis of the institutionalization of babies and young children with Down syndrome demonstrates how sorrow came (and continues to come) from the horrors of institutionalization following birth. More than Down syndrome understood as the genesis of sorrow and parental grief, this dissertation’s abiding concern is how sorrow has and continues to be culturally produced and re-produced – that is, I examine the ways in which Down syndrome is wrapped in misrecognitions of sorrow. Still, sorrow and grief are not phenomena to be simply dismissed. They are not feelings that should be eliminated when we think about parents, children, and the relation between the two. Instead, a critical analysis of the production of sorrow as it is expressed between parents and children demonstrates the affirmative and transformative possibilities of disability studies and childhood studies within education, within medicine, and within one of the most intimate relationships – those between parents and their children. Additionally, this thesis offers a way of building a relation to what we experience – and this includes sorrow.

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