Why Do You Ask Why?: A Critical Phenomenology of Disability and the Burden of Justification

This paper examines how asking “why” may function as a form of censorship that regulates the actions and desires of disabled people. We describe how one author’s life was transformed by 24 h personal assistance, which let her pursue activities “unnecessary for sustaining life” and “be picky about her daily routines.” Building on phenomenological research, we argue that the lack of discretion in homemaking alienates disabled people. While Independent Living with a personal assistant enables homemaking that reflects personal preferences, pursuing “unnecessary activities” or “pickiness” can be difficult because of the pressure to explain reasons to caregivers. The author developed a habit of explaining her reasons—often initially or excessively—from a lifetime of interactions with non-disabled people who constantly demanded justification. This demand for explanation places a burden of justification on disabled people, censoring their “pickiness” or comfort by dismissing it as an “unnecessary luxury.” This “censorship of reasons” maintains the fluid flow of actions conducted by non-disabled people within an ableist society. The recognition of this creates a space for reexamining able-bodied normalcy and the excessive fluidity expected within ableist social structures.