From research participant to co-researcher: Chloe's story on co-designing inclusive technologies with people with intellectual disability
Choe Haidenhofer, Laurianne Sitbon, Chris P Beaumont, Maria Hoogstrate, Jessica L Korte · 2024 · ASSETS 2024: 26th International ACM SIGACCESS Conference on Computers and Accessibility · doi:10.1145/3663548.3688541
Summary
This experience report centers the voice of Chloe Haidenhofer, a woman with intellectual disability who has transitioned from research participant to co-researcher over five years of collaboration with the inclusive design technologies team at Queensland University of Technology in Brisbane, Australia. Chloe works at Endeavour Foundation, a disability support organisation, two days a week in an office role and attends a Learning Hub three days a week. She also volunteers to teach Auslan (Australian Sign Language) to peers. The paper is structured around extensive direct quotes from Chloe drawn from two interviews, with academic co-authors providing contextual framing and literature connections. The research team, led by Laurianne Sitbon, has co-designed with adults with intellectual disability since 2012 through an ongoing partnership with Endeavour Foundation, exploring technologies including mobile applications, augmented reality, communication technologies, information access tools, and social robotics. Their methodology uses contextual interviews in small groups of 2-4 people where participants interact with prototypes, take turns trialing technology, and observe each other. Since 2023, this has been formalized through the QUT Techshop series, where groups from Endeavour Foundation visit the university campus every two weeks for two-hour technology workshops. Chloe has participated in over 10 of these workshops and multiple earlier studies, building substantial expertise in evaluating emerging technologies.
Key findings
Chloe articulates several nuanced perspectives on how social robots like Pepper can serve people with intellectual disability. She identifies robots as engaging social presences that draw people in and build excitement, noting that Pepper became a star attraction at the Endeavour Foundation centre. More significantly, she envisions robots as confidence-building mentors, proposing a graduated support model: people who lack confidence to speak with humans could start with a talking board, progress to interacting with a robot like Pepper, then move to peer conversation, and finally to one-on-one interaction with support workers. She sees robots as health coaches that could monitor behavioral changes, provide gentle non-prescriptive reminders for self-regulation, and alert to health issues before they escalate—emphasizing encouragement over surveillance. She also imagines robots providing physical support as wayfinders for people who are blind and as assistants in hospitals and aged care. The paper reveals how Chloe has built expertise over time through repeated co-design participation, evolving from participant to someone who actively advocates for peers, models participation for non-verbal participants through body language, and derives design insights from observing others’ responses to technology. The discussion highlights that the moral support dimension of social robots—gentle encouragements and social presence—is underexplored in assistive robotics research, which tends to focus on independence and usability.
Relevance
This paper makes a significant methodological contribution by demonstrating what genuine co-research with people with intellectual disability looks like in practice, and the institutional conditions that support it—long-term partnerships, small group formats, regular engagement, easy-read consent processes, and integration with existing support structures. For accessibility practitioners, Chloe’s graduated confidence model for technology interaction offers a practical framework applicable beyond robotics. The paper challenges the field to reconsider how co-designers build expertise over time across projects, rather than treating each study as isolated. It also raises important questions about academic publishing norms: how mixed academic and genuine discourse is received by reviewers, how co-authorship and attribution work when co-designers contribute differently than traditional researchers, and how privacy and anonymity requirements intersect with recognition of co-researcher contributions. The paper is limited to one person’s perspective, but its depth illustrates the value of sustained inclusive research relationships.
Tags: intellectual disability · co-design · social robots · inclusive research · co-researcher · participatory design · museum accessibility · assistive robotics
Standards referenced: NDIS