Designing Through Lived Experience: Reflections on Control, Embodiment, and Social Bias in Accessibility Research
Atieh Taheri, Misha Sra, Patrick Carrington, Jeffrey P. Bigham · 2025 · Proceedings of the 27th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS) · doi:10.1145/3663547.3749829
Summary
This paper presents an analytic autoethnography of three accessibility research projects led by the first author, Atieh Taheri, a disabled researcher with Spinal Muscular Atrophy (SMA) who has used a wheelchair her entire life. Each project emerged from personal need and embodied experience rather than external problem identification. MouseClicker addressed the gap between cursor control and the embodied sense of clicking by developing a facial-expression-based, hands-free input system with vibrotactile feedback — born from Taheri's frustration that existing assistive systems offered cursor control but failed to replicate the immediacy and sensory affirmation of a physical click. Virtual Steps explored a question most accessibility research would not ask: what would it feel like to walk, as someone who has never walked? The VR-based walking simulation was not about rehabilitation or functional gain but about emotional and imaginative exploration of bodily experience. Simulated Conversations used LLM-driven agents to help people recognize ableist microaggressions — subtle slights, awkward compliments, and patronizing questions — by placing participants in interactive dialogue scenarios based on Taheri's real experiences. Drawing from feminist HCI, crip technoscience, and design justice, the paper argues that designing through disability is not merely a methodological stance but a form of epistemic resistance — asserting the legitimacy of knowledge that is often dismissed as too specific, too emotional, or too personal for conventional research paradigms.
Key findings
The paper identifies four cross-cutting themes across the three projects. First, reclaiming agency through design: each project originated from personal constraint or curiosity but evolved into a form of expanding what disabled people are allowed to do, feel, and imagine — MouseClicker restored a sense of control, Virtual Steps opened an embodied experience Taheri had never had, and Simulated Conversations created a space to confront ableist microaggressions. Second, emotional labor as design practice: revisiting exclusion, confronting internalized ableism, and translating personal histories into interventions required significant vulnerability, but this labor was integral to the insight and innovation achieved. Third, tension between insider knowledge and research norms: reviewers questioned whether vibrotactile feedback was unnecessarily complicated, hesitated at the idea of simulating walking for wheelchair users, and raised concerns about using LLMs to explore bias — each instance representing epistemic friction where embodied knowledge conflicted with disciplinary expectations around generalizability, simplicity, and abstraction. Fourth, the fragility of inclusion: the projects demonstrate that inclusion is not a stable outcome achieved through guidelines but a contested, iterative process requiring ongoing negotiation and critical reflection. The paper offers five implications: validate lived experience as rigorous knowledge, expand the definition of access beyond functional parity, acknowledge emotional labor in design, interrogate normative frameworks, and design for complexity rather than closure.
Relevance
This paper makes a significant contribution to how the accessibility field thinks about who designs, whose knowledge counts, and what disabled people should want from technology. For accessibility practitioners, it challenges the dominant paradigm of universal, scalable solutions by demonstrating that some of the most meaningful design insights emerge from deeply personal, non-generalizable experiences. The MouseClicker finding — that the gap between technical sufficiency and experiential adequacy is a core tension in assistive technology — has broad implications for AT evaluation: a system can be functionally complete yet fail to provide the embodied sense of control and agency that makes interaction meaningful. The Virtual Steps project pushes back against a narrow interpretation of the social model of disability that would consider simulating walking inherently inappropriate, arguing that accessibility must make room for curiosity, ambiguity, and individual desire. The Simulated Conversations project demonstrates an emerging use of LLMs in accessibility: creating safe spaces to practice recognizing and responding to everyday ableism. Together, the three projects make a compelling case that disability experience is not anecdotal but constitutes rigorous situated knowledge essential to equitable design.
Tags: disability studies · autoethnography · crip technoscience · participatory design · disability justice · embodied cognition · ableism · virtual reality · vibrotactile feedback · artificial intelligence · motor impairment