Wearable robotic exoskeletons: A socio-philosophical perspective on Duchenne muscular dystrophy research

摘要

Abstract Recently, several research projects in the Netherlands have focused on the development of wearable robotic exoskeletons (WREs) for individuals with Duchenne muscular dystrophy (DMD). Such research on WREs is often treated solely within the disciplines of biomedical and mechanical engineering, overlooking insights from disability studies and philosophy of technology. We argue that mainly two such insights should receive attention: the problematization of the ableism connected to the individual model of disability and the stigmatization by assistive technology. While disability studies have largely rejected the individual model of disability, the engineering sciences seem to still locate disability in an individual’s body, not questioning their own problematization of disability. Additionally, philosophy of technology has argued that technologies are not neutral instruments but shape users’ actions and perceptions. The design of WREs may convey a message about the understanding of disability, which can be comprehended as a challenge and an opportunity: stigmatization needs to be avoided and positive views on disability can be evoked. This article aims to highlight the benefits of considering these socio-philosophical perspectives by examining the case of WREs for people with DMD and proposing design principles for WREs. These principles may enhance acceptability of WREs, not only by individuals with DMD but also by other users, and help engineers to better place their work in the social context.