Chronically Under-Addressed: Considerations for HCI Accessibility Practice with Chronically Ill People
Kelly Mack, Emma J. McDonnell, Leah Findlater, Heather D. Evans · 2022 · Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '22) · doi:10.1145/3517428.3544803
Summary
This paper argues that HCI accessibility research has largely overlooked people with chronic illnesses, typically approaching them through a medical lens focused on symptom tracking and treatment compliance rather than recognizing their broader accessibility needs. The authors — three of whom are chronically ill — present a framework built on three core tenets for designing technology that centers the chronically ill experience. The first tenet, "Beyond Patients," calls for viewing chronically ill people not as medical patients but as individuals with access needs and valuable expertise gained from navigating daily life with their conditions. The second tenet, "Variability of Ability," addresses the fluctuating nature of chronic illness, where a person's capabilities can shift dramatically within a single day due to baseline fluctuations (flares, environmental triggers) and action-determined variability (where performing an action changes one's subsequent abilities). The third tenet, "Include the Body," advocates for a theoretical approach to chronic illness that accounts for both physiological impairments and sociopolitical barriers, moving beyond the limitations of purely social or medical models of disability. The authors demonstrate these tenets through three collaborative autoethnographic case studies drawn from their own experiences as chronically ill technology users, examining TikTok content sharing, text-to-speech use for academic reading, and remote work adaptations.
Key findings
The autoethnographic case studies reveal several important design considerations. In the TikTok case, one author cannot watch videos with shaky camera movement due to motion sickness, so her friend writes motion descriptions before sharing — demonstrating how access is deeply interdependent and social, not purely technical. The text-to-speech case shows how both authors use TTS tools in unconventional ways not anticipated by designers — one uses a screen reader visually to avoid dizziness from reading, while the other uses TTS to work through brain fog while lying on the floor. The remote work case introduces the concept of "internal access conflicts," where a single person's access needs can contradict each other — for example, remote attendance reduces motion sickness triggers but increases exposure to nauseating shaky video feeds. The paper's most significant conceptual contribution is "consequence-based accessibility," which reframes access not as a binary "can or cannot perform a task" but as a cost-benefit calculation accounting for the physiological consequences an action may trigger. This framework, inspired by the chronic illness community's "Spoon Theory," recognizes that chronically ill people constantly weigh whether performing an accessible action is worth its aftereffects.
Relevance
This paper provides a crucial expansion of how accessibility practitioners think about disability and access needs. The framework challenges the common assumption that accessibility is a static property — either a feature is accessible or it is not — and instead proposes that accessibility must account for fluctuating abilities, cumulative physiological costs, and the social contexts in which technology is used. For practitioners, the concept of consequence-based accessibility has immediate implications: interfaces should support customization that adapts to varying energy and capacity levels throughout a day, not just fixed ability profiles. The notion of internal access conflicts — where one accommodation creates a new barrier — is particularly relevant for designers building flexible, multi-modal systems. The paper also raises important methodological considerations for accessibility researchers: study designs must accommodate participants whose abilities may change during the study itself, and recruitment should not narrowly define who counts as a user of accessible technology. The work connects chronic illness to broader disability justice frameworks, making it essential reading for anyone working to make technology more inclusive.
Tags: chronic illness · disability studies · accessibility frameworks · autoethnography · consequence-based accessibility · variable ability · interdependence · crip time