‘Welcoming Different Voices’ Hosted by Disability Studies Program, Eastern Washington University May 17-18, 2019 EWU Spokane, Spokane Washington
Our goal is to provide scholars, researchers, advocates and other community members a platform to work together to improve opportunities available for disabled people as a matter of social justice.
At the age of 40 I was diagnosed with Ehlers-Danlos Syndrome. People with rare diseases, like EDS, are called zebras because doctors are taught "When you hear hoof beats, think horses not zebras." As a result, many zebras are misdiagnosed. Many doctors expect patients with EDS to present like nineteenth-century sideshow acts such as the India Rubber Man, when those symptoms are not characteristic of the most common type of EDS. Patient advocate, Jan Groh, argues that only the "grossest signs of the rarest types" of EDS are typically recognized. However, as a fat zebra, I had very little hope of ever being seen as a horse, let alone a zebra. Instead, my lifelong pain, fatigue, and poor mobility were attributed to my fatness—the “elephant” in the exam room. In this paper, using autoethnography, I theorize the intersections of fatness, disability, and rare diseases. Following scholars like Amy Erdman Farrell and Rosemarie Garland Thompson, I develop the concept of “medical grotesquerie.” I argue that for fat people with rare diseases—Fat Zebras—the competing grotesqueries of fatness and disability lead to medical neglect.