Designing with and for People with Intellectual Disabilities
Leandro Soares Guedes, Ryan Colin Gibson, Kirsten Ellis, Laurianne Sitbon, Monica Landoni · 2022 · Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '22) · doi:10.1145/3517428.3550406
Summary
This workshop paper proposes a half-day community-building event at ASSETS '22 focused on sharing expertise in designing technologies with and for people with intellectual disabilities. The authors identify that while assistive technologies can significantly support the participation, independence, and wellbeing of people with intellectual disabilities, abandonment rates remain above 50% — largely because end users are rarely involved in the early design stages, resulting in rigid systems that fail to meet their complex and heterogeneous needs. The paper builds on Hendriks et al.'s influential call for researchers to share lessons learned when adapting traditional design methods for participants with cognitive disabilities, acknowledging that no single methodological approach can reflect the diversity of life experiences within this population. The workshop addresses four key topics: adapting design and evaluation methods (since traditional HCI techniques assume speech fluency, fine motor skills, short-term memory, and higher-order cognition that may not match participants' abilities); communication considerations (recognising that participants may use speech, Makaton, augmentative and alternative communication tools like Talking Mats, or mediated communication through trusted support people); the evolving role of people with intellectual disabilities as co-researchers rather than just participants; and enhancing the participation of marginalised sub-populations within the intellectual disability community, including people from Black, Asian, and Minority Ethnic backgrounds who face compounded health inequalities.
Key findings
The paper identifies several critical methodological challenges that emerge when applying standard co-design approaches with people with intellectual disabilities. Traditional methods rely on skills that may not align with participants' abilities: speech-centred methodologies exclude those who communicate non-verbally; hands-on tasks assume fine motor competence; verbal instructions depend on short-term memory capacity; and ideation activities require abstract thinking. Likert scales, commonly used in evaluation, are subject to acquiescence bias where participants with intellectual disabilities tend to select the most positive options regardless of their actual views. The authors also highlight an ongoing debate about caregiver involvement — some researchers argue caregivers' goals differ significantly from those of people they support and should be limited to facilitation, while others find caregivers to be knowledgeable advocates whose direct involvement enhances research quality. The workshop was designed to be maximally inclusive, accepting submissions in multiple formats (text, audio, video, or simple expression of interest form), waiving registration fees where possible, and planning both synchronous and asynchronous activities to accommodate different needs and time zones.
Relevance
This workshop paper addresses a fundamental gap in accessibility research: how to meaningfully include people with intellectual disabilities in the design of technologies intended for them. The 50%+ assistive technology abandonment rate is a stark indicator that designing without this population's input leads to poor outcomes. For accessibility practitioners and researchers, the paper offers a practical framework for thinking about the adjustments needed when working with participants with intellectual disabilities — from flexible communication modalities to individualised design techniques centred on participants' abilities rather than deficits. The emphasis on community building is significant because the field is described as 'thin and disjointed,' with researchers scattered across institutions and disciplines. The paper's inclusive approach to the workshop itself — accepting varied submission formats, planning accessible platforms, and inviting people with intellectual disabilities as participants rather than just subjects — models the principles it advocates. While the paper is a workshop proposal rather than an empirical study, it synthesises important methodological literature and sets a practical agenda for more inclusive accessibility research.
Tags: intellectual disability · co-design · participatory design · assistive technology · inclusive design · cognitive accessibility · research methods · community building
Standards referenced: UN Convention on the Rights of Persons with Disabilities · ADA Title II · Australia's Disability Strategy 2021-2031