An Autonomy-Perspective on the Design of Assistive Technology Experiences of People with Multiple Sclerosis

In HCI and Assistive Technology design, autonomy is regularly equated with independence. This is a shortcut and leaves out design opportunities by omitting a more nuanced idea of autonomy. To improve our understanding of how people with severe physical disabilities experience autonomy, particularly in the context of Assistive Technologies, we engaged in in-depth fieldwork with 15 people with Multiple Sclerosis who were used to assistive devices. We constructed a grounded theory from a series of interviews, focus groups and observations, pointing to strategies in which participants sought autonomy either in the short-term (managing their daily energy reserve) or in the long-term (making future plans). The theory shows how factors like enabling technologies, capital (human, social, psychological resources), and compatibility with daily practices facilitated a sense of being in control for our participants. Moreover, we show how over-ambitious or bad design (e.g., paternalism) can lead to opposite results and restrict autonomy.