Exploring literacy engagement in a significant disability context

Abstract

This study tackles the question: how is literacy engagement enacted in the context of significant disability? We delve into the complex literacy practices of Kalika, a three-year-old child with Rett syndrome, a rare neurodevelopmental disorder, to elucidate how she engages with printed text. Rett syndrome leads to near total loss of verbal communication and limited functional hand use, making it particularly challenging to participate in traditionally recognized forms of literacy engagement. Using in-depth qualitative data from both in- and out-of-school settings, we conduct a micro-level analysis of Kalika’s behaviours during story time rituals. In order to bring analytic coherence to the data, we classified her modalities of literacy engagement under two broad categories: 1) kinesics, which included a) corporal (entailing full body positioning and motion), b) oral (involving contact with mouth or expression), c) oculesics (relating to eye gaze), and d) haptic (relating to hands) elements as well as 2) vocalics (pertaining to vocal tone and vocalisation). Our analysis elucidates the sophisticated, complex multimodal practices that Kalika enacts to engage with texts. For far too long, students with significant disabilities have been viewed from deficit perspectives, neglected within the literature as well as in the classroom, and thought to require additional instruction to learn how to engage with texts. We suggest that perhaps it is a question, instead, of educators and scholars learning to expand their own frames of reference.