Contested Healing: Experiments in Graphic Ethnography of Ankylosing Spondylitis



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Through graphic ethnography, I analyze and represent the way individuals experience, feel, and embody the unique temporality and liminality of Ankylosing Spondylitis (AS) as a chronic, degenerative condition. To do so, I draw on my research of individuals with AS in online public spaces and nine long-form, semi-structured interviews. This work, in all its components, addresses overarching conversations about chronic illness and people’s use of holistic treatments in the face of the biomedical push for pharmaceuticals. AS is a chronic inflammatory autoimmune disease marked by inflammation of the sacroiliac joints, spine, ribs, and eyes, and vertebrae fusion. It often presents in adolescence and throughout early adulthood and manifests in periods of pain and periods of remission. I use digitally-produced graphics to de-center and complicate the overwhelming hold of biomedicine’s normative narratives of the “best” and “correct” modes of treatment and care, evoking an affective response to narratives of AS and experiences of chronic illness embodiment. As a generative form of analysis and representation, graphic ethnography allows me to unearth the way people’s engagements and investments in holistic healing generate newfound control, agency, and power that biomedicine otherwise strips from them in light of an AS diagnosis.



ankylosing spondylitis, chronic illness, disability studies, health humanities, autoimmunity, medical anthropology, biomedicine, chronic pain, holistic healing