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

Published: 02 May 2019 Publication History

Abstract

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.

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    cover image ACM Conferences
    CHI '19: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems
    May 2019
    9077 pages
    ISBN:9781450359702
    DOI:10.1145/3290605
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    Published: 02 May 2019

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    Author Tags

    1. active and assisted living
    2. ambient assisted living
    3. autonomy
    4. grounded theory
    5. multiple sclerosis
    6. robotic toilet

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    • (2023)How does HCI Understand Human Agency and Autonomy?Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems10.1145/3544548.3580651(1-18)Online publication date: 19-Apr-2023
    • (2023)Building User-Centered ASL Communication Technologies for Parent-Child Interactions2023 IEEE MIT Undergraduate Research Technology Conference (URTC)10.1109/URTC60662.2023.10534918(1-5)Online publication date: 6-Oct-2023
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