Living Disability Theory: Reflections on Access, Research, and Design
Megan Hofmann, Devva Kasnitz, Jennifer Mankoff, Cynthia L. Bennett · 2020 · Proceedings of the 22nd International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS) · doi:10.1145/3373625.3416996
Summary
This paper presents a reflexive autoethnographic analysis by three accessibility researchers (Hofmann, Mankoff, Bennett) and one disability studies scholar (Kasnitz), all of whom are disabled, examining how their lived experiences of disability intersect with and challenge accessibility research practices. Using duoethnography — paired semi-structured interviews and iterative narrative reflection over an extended period — the authors share deeply personal accounts of navigating disability in academic and research contexts. Hofmann experiences syncope (fainting), migraines, anxiety, and PTSD with no formal diagnosis, making her disability largely invisible and frequently disbelieved. Kasnitz has familial idiopathic generalized torsion dystonia resembling cerebral palsy, uses a revoicer, and brings decades of disability studies expertise. Mankoff claimed disability identity through chronic illness, navigating the distinction between illness and disability identity. Bennett, blind since childhood, has experienced a journey from resisting to proudly claiming disability identity. The paper argues that accessibility research and disability studies, though intertwined, have a fundamental tension: accessibility research focuses on building technology related to impairment, while disability studies centers on understanding disability as a socially constructed experience and advocating against ableist systems. The authors call for deeper integration of these fields.
Key findings
The paper identifies three core themes. First, ableism pervades accessibility research itself — not just as overt discrimination but as structural assumptions. Internalized ableism affects disabled researchers who question whether they are "disabled enough." The field assumes disability requires clear diagnostic categories, excluding people with invisible, chronic, or undiagnosed conditions. Academic conferences remain largely inaccessible despite the field's mission, and remote participation was only broadly adopted after COVID-19 made it necessary for everyone. Second, accessibility research oversimplifies disability by treating it as discrete, stable categories of impairment. In reality, disability is fluid — people transition between states of visibility and invisibility, manage multiple co-occurring conditions, and negotiate conflicting access needs when disabled people co-exist in the same space. The authors illustrate this vividly: Hofmann hides her cane from bus drivers to avoid triggering an alarm that causes her to faint, while Bennett cannot hide her white cane. When they ride buses together, they must strategize whose needs to prioritize. Third, human connections and relationships are central to disability experience and access work. Technology exists within relationships — canes become symbols of identity, care, and pride rather than mere mobility aids. The authors call on researchers to (1) commit to recognizing and repairing ableism, (2) study disability beyond diagnosis, (3) incorporate disability studies perspectives that center disabled voices, and (4) use reflexive, interpretivist methods as regular practice.
Relevance
This is a landmark paper for accessibility practitioners because it challenges the field's foundational assumptions from the inside. The authors — all disabled researchers working in accessibility — demonstrate that the field inadvertently perpetuates ableism through its focus on discrete impairment categories, its reliance on medical diagnosis as a gatekeeper, and its tendency to study disabled people as subjects rather than collaborating with them as experts. For practitioners, the key insight is that accessibility work must move beyond technical accommodation to understand disability as a complex, fluid, socially situated experience. The paper's recommendations are concrete: engage with disability studies literature, diversify the populations studied beyond the "big five" impairment categories (blindness, cognitive, motor, Deaf, mobility), recognize that access needs can conflict and require negotiation rather than universal solutions, and build genuine alliances with disability communities rather than treating them solely as research subjects. The personal narratives make abstract concepts tangible and are powerful tools for building empathy and understanding in teams.
Tags: disability studies · ableism · autoethnography · disability theory · accessibility research · chronic illness · invisible disability · intersectionality · critical theory
Standards referenced: ADA