Meeting Participants with Intellectual Disabilities during COVID-19 Pandemic: Challenges and Improvisation
Leandro Soares Guedes, Monica Landoni · 2021 · Proceedings of the 23rd International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '21) · doi:10.1145/3441852.3476566
Summary
This short paper (poster) shares lessons learned from conducting participatory design research with adults with intellectual disabilities (ID) during the COVID-19 pandemic, in the context of a project aimed at making museum visits more accessible, rewarding, and memorable through technology. The researchers, based at the University of Italian Switzerland in Lugano, had planned a series of co-design sessions involving people with ID, cultural mediators, and domain experts to understand user needs and develop accessible museum experiences. However, the pandemic introduced cascading disruptions: museums closed, physical exhibitions were cancelled, gathering restrictions were imposed, and — critically — guardians and caregivers of people with intellectual disabilities adopted stricter interpretations of COVID safety measures to protect this high-risk population. The paper documents how the research team adapted through improvisation, defined as "a creative act composed without prior thought." Originally planning for eight participants, two sessions one week apart, and co-design activities in a museum and lab, the team ultimately managed five participants, sessions five months apart, and activities conducted in a museum (with masks) and open-air in a park. The participants were five adults (three female, two male, ages 30-61) with intellectual disabilities who communicate in Italian, accessed through an association providing culture and education activities. A cultural mediator who was part of the research team served as a crucial bridge, having an established relationship with the participants.
Key findings
The paper reports on two sessions that illustrate both the challenges and creative adaptations. Session I (October 2020) was an ethnographic observation of participants visiting a temporary exhibition at a local museum called LAC. Despite COVID restrictions requiring masks and hand sanitiser, the guided tour lasted about 40 minutes, during which the cultural mediator engaged participants in dialogue about the artworks through questions connecting to personal experiences and memories. The researchers observed distinctly different engagement patterns among the five participants, ranging from highly participative to very quiet, highlighting the importance of accommodating diverse communication styles. Session II occurred five months later (March 2021) after numerous cancellations due to participant illness and tightening restrictions. It was split into two parts: a collective open-air meeting in a park where participants recalled their museum visit using an iPad showing the museum's virtual tour, followed by individual 10-minute interviews about preferences and technology use. The researchers demonstrated a prototype called AIMuseum, an augmented reality app using QR codes and text-to-speech for interacting with virtual artworks. Key lessons included that online alternatives were not viable for this population due to lack of access to computers and guidance for online meetings, that the cultural mediator's established relationship was essential for maintaining participant engagement across the long gap, and that open-air settings with familiar social elements (coffee, snacks, chat) helped recreate comfortable conditions.
Relevance
This paper addresses a frequently overlooked intersection: conducting user research with people with intellectual disabilities, who are among the most underrepresented groups in accessibility research. The practical lessons about improvisation during research are valuable beyond the pandemic context — working with people with ID inherently involves unpredictability, and researchers must be prepared to adapt plans while maintaining research rigour. The finding that online alternatives were simply not accessible to these participants challenges the assumption that remote research methods can substitute for in-person engagement with all disability groups. For accessibility practitioners working on museum and cultural institution accessibility, the paper highlights that people with ID benefit from mediated experiences with personal connections to artworks, and that technology solutions like augmented reality with text-to-speech show promise for enhancing engagement. The emphasis on working through established associations and cultural mediators, rather than approaching participants directly, provides a practical model for ethical recruitment and trust-building in ID research.
Tags: intellectual disability · co-design · COVID-19 · museum accessibility · participatory design · improvisation · research methods · cultural accessibility
Standards referenced: Convention on the Rights of Persons with Disabilities