I will be presenting Chronically Queer: An autoethnographic approach to the oddities of rare disease (non) diagnosis at Debilitating Queerness, the Sixth Annual DC Queer Studies Symposium. I attend this conference every year, and it is always a great day.
Part academic paper, part auto-ethnography and part graphic diary, Chronically Queer
explores the (non) diagnosis process for a rare progressive disease. Using queer and
classification theories, this paper analyzes medical testing and bodily responses to
medication against the ontological systems for classifying disease, recognizing that the
diagnosis requires significant illness to prove the disease, and is therefore always
already failing actual lives due to baseline quantification requirements.
By performing the experiences of queerly living with chronic illness and unknowing in
relationship to medical categories and the systems that keep us alive, this project
investigates livable lives within the spaces where technologies, systems, and messy,
sick bodies meet.
Data collected, classified, and used for diagnosis and treatment protocols come from
actual people who have stories of success, of failure, of life in-between appointments,
procedures, and prognoses. These queerly lived moments in the spaces in-between are
brought to light through performance, images and sound.
Queerness disturbs these classifications by interrogating the implicit heteronormativity in
disease treatment from the types of medications used (such as those also used as part
of a trans* hormone regimen), to the requirement for pregnancy testing and purchasing
of birth control. Untangling these complications requires a close reading and
interpretation of who is allowed to take these drugs, and for what purposes, considering
what it means for disability and queerness to be always already embedded in the
framework of a reproductive future in order to reformulate the queer sick bodyʼs role
with, in and against the future(s).