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Dismantling the Disabling Environments of Education

Creating New Cultures and Contexts for Accommodating Difference

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Edited By Peter Smagorinsky, Joseph Tobin and Kyunghwa Lee

Dismantling the Disabling Environments of Education: Creating New Cultures and Contexts for Accommodating Difference challenges assumptions that view people of difference to be "abnormal," that isolate attention to their difference solely in the individual, that treat areas of difference as matters of deficiency, and that separate youth of difference from the mainstream and treat them as pathologized. As outsiders to mainstream special education, the authors of this collection take a more social and cultural perspective that views the surrounding social environment as at least as problematic as any point of difference in any individual. Most of the scholars contributing to this volume work with preservice and inservice teachers and grapple with issues of curriculum and pedagogy. One of the primary audiences we hope to reach with this book is our colleagues and practitioners who have not made special education or disability studies the focus of their careers, but who, like we, are determined to engage with the full range of people who attend schools. Dismantling the Disabling Environments of Education: Creating New Cultures and Contexts for Accommodating Difference can be a valuable text for undergraduate and graduate courses in teacher education, as it addresses key issues of inclusion, diversity, equity, and differentiated approaches to educating the full range of students.

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Chapter Five: “There is nothing to do with these girls”: The Education of Girls with Rett Syndrome (Usree Bhattacharya)

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CHAPTER FIVE

“There is nothing to do with these girls”

The Education of Girls with Rett Syndrome

USREE BHATTACHARYA



“Tape des mains, ne t’arrete pas” [Clap your hands, don’t stop yourself]

My daughter had been moving in beat to this Congolese Francophone number since she was six months old, a song darkly prescient in ways we could never have anticipated. The image of silhouetted, burnt-orange hands swaying in rhythm to earthy African drums flashes across the upbeat YouTube video that she has watched nearly a thousand times in her life. Three months before she was finally diagnosed, she began to clap every waking minute. My husband said: “You know, she heard that line so many times that she really took it to heart.” I cried.

“Clapping” hands are perhaps the most recognizable symptom of Rett Syndrome (RS), a rare neurological disorder. Occurring in about 1 in 10,000 births, the disease is said to be characterized by “profound intellectual and physical disability” (Sigafoos, Woodyatt, Tucker, Roberts-Pennell, & Pittendreigh, 2000, p. 203). In terms of its etiology, it arises as a result of “mutations in the methyl-cytosinephosphate-guanine binding protein 2 (MECP2) gene located on Xq28” (Djukic, McDermott, Mavrommatis, & Martins, 2012, p. 25). After a short period of “normal” development, girls1 with RS will experience “gradual reduction of speech and purposeful hand use, seizures, autistic like behaviour, ataxia, intermittent hyperventilation and stereotypic hand movements...

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