Designing Through Lived Experience: Reflections on Control, Embodiment, and Social Bias in Accessibility Research

Why this work

Accessibility research tends to prize solutions that are universal, scalable and efficient. That focus can miss the personal and emotional side of access.

Much of the work is also framed from the outside, with non-disabled designers building for a generalized disabled user. Even participatory projects often cast disabled people as testers. Accounts by disabled researchers who are both the designer and the subject of their work are rare.

What I did

I used analytic autoethnography: a structured reflection on my own experience as the designer of all three projects and the user of two of them.

The material was my recollection of key design moments, informal notes, emails and prototype records, and repeated conversations with my co-authors. Where my lived experience and an outside view pulled apart, we gave priority to my interpretation.

What came out of it

MouseClicker. Seeing a click register on screen was not enough for me. The vibration was what built trust and the sense that the action was mine. A reviewer found that feedback needlessly complicated, which shows the tension the paper names: a tool can be technically sufficient and still not feel adequate to the person using it.

Virtual Steps. Some people were uneasy that a wheelchair user wanted to experience walking in VR, out of concern that it conflicts with the social model of disability. We read that unease as a consensus that had been assumed and never examined, one that ends up deciding for disabled people what they may want. We still treat the social model as foundational; applied rigidly, though, it can limit curiosity and imagination.

Simulated conversations. Building a tool that helps people recognize ableist remarks meant writing such remarks from my own and my peers’ experience. That is emotional labor, and it deserves to be counted as part of design work.

Why it matters

The paper draws out four themes: reclaiming agency through design, emotional labor as design practice, the tension between insider knowledge and research norms, and the fragility of inclusion.

Its recommendations follow from them. Treat lived experience as rigorous knowledge. Widen what counts as access to include feeling, agency and imagination. And let disabled researchers help set the field’s questions and standards.