Ten fingers and ten toes: Mothers of children with Down syndrome constructing the sociocultural meaning of disability and motherhood
Item
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Title
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Ten fingers and ten toes: Mothers of children with Down syndrome constructing the sociocultural meaning of disability and motherhood
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Identifier
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d_2009_2013:662f45fb530e:10190
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identifier
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10346
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Creator
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Lalvani, Priya,
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Contributor
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Anna Stetsenko
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Date
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2009
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Language
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English
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Publisher
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City University of New York.
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Subject
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Developmental psychology | Special education | Down Syndrome | Families of children with Disabilities | Inclusive Education | Motherhood | Mothers of children with Down syndrome | Social Construction of Disability
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Abstract
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This qualitative study concerns the lived experiences and negotiated identities of mothers of children with Down syndrome in the context of the meaning of disability and normalcy in society. The study explored mothers' experiences of the birth and diagnosis of their children with Down syndrome, their perceptions of parenthood, their understanding of cultural attitudes towards disability, and their negotiations of the social world on behalf of their families. Additionally, the study examined mothers' beliefs about inclusive education and their support for particular educational programs for their children. Data were collected from 19 mothers of children with Down syndrome through semi-structured interviews, which were audio-recorded, transcribed, coded and analyzed. The findings highlight the existence of oppressive interpersonal and institutional discourses on families of children with disabilities, centered on notions of damage, burden, and stigma. The mothers in this study strongly resisted dominant discourses about families of children with disabilities, rejecting the notion that being the parent of a child with Down syndrome is a negative experience. Instead, they represented their lives and those of their families in terms that emphasized the more normative aspects. Furthermore, they rejected notions of otherness in their descriptions of their children, and defined normative motherhood as encompassing a wide variety of tasks, roles, and challenges. The findings are indicative of transformations in these mothers' understanding of what is like to parent a child with Down syndrome and suggest that they located disability not only in their child, but also in the environment. For a majority of the mothers, the social implications of having Down syndrome were among the most pressing issues, and concerns regarding social acceptance strongly influenced their beliefs about inclusive education. The results of this study strongly support a need for a conceptual shift in understanding the experiences of families of children with Down syndrome; one that shifts its gaze from the "problem" of Down syndrome to the problematic constructions of normative motherhood and of the otherness of children with Down syndrome.
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Type
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dissertation
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Source
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2009_2013.csv
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degree
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Ph.D.
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Program
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Psychology
