Anomaly: an anthropology of Atypical children
Date
2020
Authors
Blackie, Deirdre Elizabeth
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Abstract
This thesis explores the lived experience of children defined as atypical. The ethnographic focus of the study spans an initial cohort of nine children from private schools in Johannesburg diagnosed variously with learning disabilities, ADHD, developmental delays, speech disabilities, sensory challenges, anxiety, and autism. In-depth observational work was also conducted with autistic children at a boxing programme based in the inner city, from more diverse socio-economic backgrounds. A final level of insight was gained from ‘deep hanging out’ amongst atypical adults in online ‘bio’ social media groups spanning autism, ADHD, learning disabilities and Ehlers Danlos Syndrome. Using the philosophy and methodology of phenomenology, I developed a model that illustrates a cycle of atypical embodied engagement with the world, spanning stages or phenomena of Presence, Perception, Control, Participation, Flow, Communication and Adaptability. While there is much contestation over the homogenisation of ‘neurodiverse’ brains (Ortega 2009), the lived experience of atypical children that I observed during my research had a high degree of consistency.
Using a range of creative interactive methodologies, I collaboratively explored what is understood and misunderstood around each of these stages or phenomena from the perspective of those defined as atypical. Much of the dominant academic and popular discourse surrounding atypicality focusses on either a medical or social model of disability. By mapping medical diagnoses to a social model of engagement, a new holistic perspective was revealed. This traversed the physical, intellectual, emotional, and social motivations, behaviour and agency of the children illustrating their unique and different ways of being in the world. New enabling characteristics were identified in behaviours previously defined and diagnosed as disabilities.
This exploration brings to light the meaning that atypical children derive from their various stages of engagement with their world. A new kind of spectrum emerged that moved beyond disabling biomedical labels to one of enablement. The vectors of this spectrum could travel in either direction, without implying dysfunction or defectiveness. My research revealed a multitude of cultural and social creativity and invention, which the children continue to expand in the ‘biosocial borderland’ that they occupy.
Description
A thesis submitted in fulfilment of the requirements for the Degree of Doctor in Philosophy to the Faculty of Humanities, School of Humanities and Social Science, University of the Witwatersrand, Johannesburg, 2020