Designing the Sick Body: Structuring Illness in the Techno-Material Age

Abstract

How might we pivot and turn towards outsider bodily knowledges to learn how bodies come to matter within and through the extended medical industrial complex? Using the concept of the embodied constellation, I examine what it means to know as and through our sick bodies -- in relationship to data, information, knowledge -- and what it means to claim that these kinds of knowing matter. Embodied constellations enable us to recognize that what we perceive as flattened constructs and single systems are instead a multiplicity of pathways and systems that may or may not interact with each other, thus knowing them in one way rather than another. Using a methodology I call AutoEthnoGraphics I put the researcher’s embodiment at the center of the research as analysis itself. Such analysis demonstrates the chemical, biological, and organic processes of the sick body, and includes poetry, images, and drawings from 30 years of my personal graphic journal. AutoEthnoGraphics thus draws our attention to just how we are implicated in the thinking, molding, structuring of end results. I speak to and share methods from ranging forms of trans-disciplinary scholarship. Grounded in my own work as an artist, I add American studies methods of ethnography and discourse analysis, mix in women of color feminisms' narrative storytelling; queer theory's analysis of outsider status, time, and failure; critical race theory's unpacking of institutionalized structures; science and technology studies' questioning of categories and their risks and credibility; and finally, media studies' deconstruction of images and sound. These tools, methods, and concerns come together in Queer Justice Design, my set of counter-practices for pivoting towards the outsider while making these embodied knowledges central to communities of care. The central tenets and values inform how we move through and co-create these practices with others to shape more livable lives. Those who would benefit from a practice of Queer Justice Design are those scholars and community organizers working towards universal or participatory design, and towards feminist and queer justice. Those I invite into these conversations work in such fields as disability studies, digital humanities, queer theory, feminist praxis, and cultural studies.