October 22, 2019 - Tracking Autism: Wearable Tech and the Digitization of Disabled Childhoods

Anne McGuire, Assistant Professor, Teaching Stream, Equity Studies, U of T

 

Abstract: Exploreing recent developments and debates in the world of therapeutic wearable technologies; more specifically, turning attention to a range of anxiety-tracking wearables that are being marketed to autism stakeholders, a nebulous group which includes autistic people as well as parents, caregivers, therapists and other service providers. These wearables – which range from ‘smart’ t-shirts to Apple-watch-style arm bands – use digital sensors to continuously measure and track physiological indicators of anxiety in the wearer (the autistic child).

When these devices register rising anxiety levels in the wearer, they notify the child's parents, caregivers or therapist, via a connected app. Armed with this biodata, parents and care providers are thought to be better positioned to intervene: to reduce triggers and, ultimately to stave off a meltdown. To date, most of the critical commentary on wearable tech has focused on technologies of self-tracking. Autism wearables, however, often do the work of tracking others. This opens up a number of unique tensions as well as some urgent ethical concerns. This talk discusses the limits of the use of bioinformatics as a way of knowing and relating to and across disability difference; it raises key questions about surveillance, privacy, and consent, when it comes to collecting and sharing the biodata of (disabled) children; it explores issues around the government and control of disabled children's affect and lastly, it issues a challenge to the presumed good of ongoing, perpetual therapy for disabled/autistic children.

Anne McGuire: Assistant Professor, Teaching Stream, Equity Studies, University of Toronto

Drawing on interpretive perspectives in feminist disability studies, queer/crip theory, cultural studies and critical race theory, her areas of teaching and research engage questions of human vitality and the spectral politics of disability and risk. She is author of War on Autism: On the Cultural Logic of Normative Violence (University of Michigan Press), which was awarded the 2015 Tobin Siebers Prize for Disability Studies. Anne's pedagogical work on access and undergraduate teaching has been recognized with a June Larkin Award and the University of Toronto's Early Career Teaching Award. She is currently collaborating with Kelly Fritsch and Eduardo Trejos on a children’s book focused on disability, community and interdependency.