Privacy and Digital Data of Children with Disabilities: Scenes from Social Media Sharenting

Abstract

Children with disabilities have been an overlooked group in the debates on privacy and data management, and the emergence of discourses on responsibilization. In this article, we offer a preliminary overview, conceptualization, and reflection on children with disabilities, their experiences and perspectives in relation to privacy and data when it comes to existing and emergent digital technology. To give a sense of the issues at play, we provide a brief case study of “sharenting” on social media platform (that is, sharing by parents of images and information about their children with disabilities). We conclude with suggestions for the research and policy agenda in this important yet neglected area.

Understanding Identity and Platform Cultures

“…Or, to bastardise Derrida, is there nothing outside of these digital texts? Such discussions have been taking place in disability studies, with scholarship exploring the ways in which bodies and agency are represented and experienced online by users experiencing disability (Goggin & Ellis 2020), the negations of users not considered visibly disabled (Miller, 2017) of the ways in which platforms further disable users (Trevisan, 2020), and the myriad reasons people with disabilities might go online (Shpigelman & Gill, 2014). Such work is increasingly pushing against optimistic narratives of social media as liberating, and towards intersectional understandings and nuanced discussions of people with disabilities (See Alper 2017, Bitman & John 2019), and a deeper exploration of the ways in which social media acts to frame experiences of disabilities.…”