Human-centred design, disability and bioethics

Abstract

Human-centred design methodologies provide a means to align bioethical advocacy with the needs and desires of disabled people. As a method, human-centred design seeks to locate points of friction in an individual’s experience of everyday interactions, specifically in relation to technologies, but potentially in relation to processes and institutions. By focusing on disabled persons and their experiences of institutional organisation, human-centred design practices serve to create a foundation for a bioethical practice that addresses idiosyncratic needs and desires while providing support for disabled persons and their families. In considering how a design-focused bioethics might operate in this way, I focus on advanced sleep phase syndrome and delayed sleep phase syndrome as a way to show how the temporal ordering of institutions disable the participation of individuals with atypical sleep needs. I then turn to the education of deaf students through the exclusive use of sound, which puts them at a significant disadvantage relative to their hearing peers; this example shows how normative ableism obscures itself in attempts to aid disabled people, but an attention to the experience of deaf students show how exclusively auditory learning can be redesigned. Advocating for flexible institutional organisation and practices situates bioethical advocacy as a means to engage with social organisations in ways that create novel opportunities for able-bodied and disabled people alike.