Abstract
The governance of rights is a complex project of exercising ethical discretion in a systemically unethical society. This paper troubles the efficacy of rights as governable by exposing tensions within and between the Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD). Grounded in a critical disability studies perspective, I question the possibility of respecting disability as a natural part of human diversity while simultaneously proposing that disabled children have a right to intervention. Who governs the definition of “health”, of “development”, of “access”, or of “best interests”? I interrogate the function of rights-based discourses in a global culture that has yet to fully abandon the project of eugenics. I present disturbing relations between researcher and subject in case studies of wearable technologies for autism intervention as a challenging site of analysis for the ethics of these interventions. I call us to question who truly benefits when we engage in the production of ‘includable bodies’ rather than the deconstruction of exclusionary environments.
Highlights
On August 2, 2018, NBC News’ Health website published an article praising Google Glass and researchers at Stanford University for the creation of a wearable app that may improve eye contact for children with autism (Scher, 2018).In preschool, [he] struggled socially with other kids
How do we guarantee the right to work when such work may be in conflict with Article 17’s respect for the physical and mental integrity of the disabled person (p. 13)? Does this integrity mean a person’s naturally occurring embodiment? Or is it meant to declare a right to normalization?. These questions emerge from the gaps between the various articles of the CRC and the CRPD, where there is no footnote, no foothold, to give us purchase in this landscape of “semiotic stalemate[s]” (Roscigno, 2019). When it comes to children, disabled people, and especially disabled children, there is no policy in place for grappling with the structural and institutional power differentials at play in determining “best interests,” “healthy development,” and “fulfillment.” Disabled children are defined by an ableist society as already unhealthy, or off track — this disruption in their “healthy development” is seen to threaten their future “fulfillment.” it is in their “best interests” to behabilitated at all costs, regardless of protestation, complaint, advocacy, or testimony to the contrary
Metaeugenics are the discourses of normative purity, reinforced by cultural biases, bigotry, and fear, that drive curative and normative violence in service of a futurity without disability, race, and queerness
Summary
On August 2, 2018, NBC News’ Health website published an article praising Google Glass and researchers at Stanford University for the creation of a wearable app that may improve eye contact for children with autism (Scher, 2018). The rest of the article goes on to describe the project, dubbed “Superpower Glass,” which provided families with a Google Glass device to take home so that their child could practice built-in games for facial expression recognition. This opening story does not tell the tale of a boy who fails to make friends because he cannot interpret others’ emotions. I attempt to disentangle the web of power that undergirds scientific inquiry into assistive technology for autism intervention Caught in this web is the autistic person, whose status as ‘user’ is foreclosed by the production of devices designed for consumption by parents, caregivers, therapists, and teachers. I explore the dialectic between cyborg becoming and cyborgification, drawing on the recent work of Hamraie & Fritsch (2019) and Nelson, Shew, & Stevens (2019) on Crip Technoscience to build an understanding of how assistive technology can and has been used to surveil, control, shape, and warp disabled bodies at the same time it has been embraced by disabled people with the means to choose their augmented embodiments
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