Do you really need the blue crayon? Medicalization and affective experiences in special needs parenting

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2015
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Haverford College. Department of Anthropology
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eng
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Abstract
In this piece, I attempt to unpack how caretakers of children with special needs experience difference. I argue the affective experience offers an alternative to a medicalized narrative that usually dictates what is best for the child. While medical knowledge constructed as truth, intervention to achieve progress, a distinction between person and disease, and a focus on disease instead of illness serve as markers of medicalized treatment goals, an examination of affective experience complicates essentialized medical notions of what is best for the child. Affective experiences are both produced by and challenge master narratives of normalcy. In this context, it is specifically, wealthy, white, heterosexual normalcy in kinship that is at stake. First, I examine how medicalized notions of development and disorder are interpreted as truth and the necessity of intervention is predetermined. Then, through the lens of caring for a child with an invisible disability, I explain how the affective experience of shame and frustration challenges medicalized progress narratives and a clear distinction between person and disease. Finally, I examine how treatment is understood not only through medicalized goals, but also in how it alters the production and performance of a racialized, classed, and heterosexual kinship script. I aim to complicate master narratives that dictate “what is best” for the child.
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