AMA Journal of Ethics®

Illuminating the art of medicine

Journal of Ethics Header

AMA Journal of Ethics®

Illuminating the art of medicine

AMA Journal of Ethics. August 2017, Volume 19, Number 8: 834-838.
doi: 10.1001/journalofethics.2017.19.08.imhl1-1708.

Images of Healing and Learning

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Performing Pain and Inflammation: Rendering the Invisible Visible

Three images explore an artist’s experience of living with rheumatoid arthritis.

Artwork and captions by Arseli Dokumaci, PhD

Abstract

These drawings represent everyday experiences of an artist who has been living with rheumatoid arthritis since her teenage years. Over the course of 20 years, the disease has damaged a series of joints in her body. Pain and inflammation accompany the most mundane of her movements and gestures. Fatigue and side effects of medications are routine parts of life. None of her impairments are publicly recognized and duly accommodated, as she is not (yet) visibly disabled. Asking for a seat on the bus, for instance, turns into a thorough social negotiation, as does having to constantly remind people that she actually is disabled. Lacking visual signs of disability, she is often accosted for “evidence”—an authentication, a reminder of “her” disability. With these drawings, each of which describes the artist’s daily negotiations with pain, inflammation, and fatigue, she seeks to render visible what remains locked up within the boundaries of her skin.

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Figure 1. The Art of Zipping Up, by Arseli Dokumaci
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Caption

A pencil drawing on a white surface of someone’s upper body seen from the person’s own viewpoint as the person is standing up. The person’s arms and elbows are bent toward the person’s belly, as if the person is about to engage in an action.

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Figure 2. Some Arms Carry Things. Some Arms Are Carried in Pockets, by Arseli Dokumaci
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Caption

A black-and-white drawing in which the body is split in half from the shoulders and the chest is transforming into steps.

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Figure 3. Fighting with Feathery Sheets and Fluffy Duvet, by Arseli Dokumaci
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Caption

A pencil drawing in which a woman’s back is mostly exposed and her legs disappear under a cluttered surface.



Arseli Dokumaci, PhD, is a postdoctoral fellow in the Department of Anthropology at the University of Copenhagen in Denmark. She received her PhD in performance studies from Aberystwyth University in 2012 and completed a Fonds Québécois de Recherche sur la Société et la Culture postdoctoral fellowship at McGill University’s Department of Social Studies of Medicine in 2016. Her research interests include disability, daily living with chronic diseases, quality-of-life measures, everyday performances, affordances theory, and visual methods.

Diagnosing Rheumatoid Arthritis, May 2011

Pain and the Paintbrush: The Life and Art of Frida Kahlo, May 2013

The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.