webs of knowledge

On May 2, 2001, user Erdem Tuzen, a physician from Istanbul, Turkey, created the myasthenia gravis Wikipedia page. It was written as a simple paragraph describing the disease’s main symptoms, how the disease works, and how it is treated. Zooming through time shows that it has been edited 1023 times by 521 users. It has 10 main sections, with another 15 subsections. There are 14 links to other Wikipedia pages in the introductory paragraph alone. The amount of ‘information’ has multiplied over time. What does it mean to be an embodied being within systems of data? What happens when standards and practices rely on particular forms of information as being more worthy than others, causing gaps in the sharing of knowledge?
When people want to gain knowledge about their health, a majority go online for information, resulting in almost 200 million medical articles being viewed on Wikipedia per month; yet Wikipedia is designed so that instead of providing useful, accessible information, it is actually a barrier to knowledge. This is due to a number of reasons, first, that the writing itself is above the recommended guidelines for average US literacy, second, that this happens partially because of Wiki: projectMedicine, an international group of health professionals dedicated to making sure the medical information on Wikipedia is technically correct, and third, that the ‘Five Pillars’ for creating, editing, and maintaining Wikipedia are themselves ideologies that reinforce a particular white, Western, Christian set of already-established knowledges.
‘Webs of knowledge’ is an ‘ethnography’ of the myasthenia gravis Wikipedia page that explores how already embedded knowledge practices and assumptions structurally co-create the environment for ways of knowing to be present and absent. Because medicine is known to be historically racist, ableist, and discriminatory, the reliable sources, neutrality, and verifiability Wikipedia claims as foundational reproduce the very same ideologies that crowd sourcing promised to fix. By making structures visible, from user edits and Talk pages, to the Five Pillars guidelines, I query the policies, guidelines and structures of Wikipedia itself as content, coming to terms with the ways bodies are directed through a combination of histories and the (current, online) practices of ‘access’ in knowledge production.

Related Publications

Designing the Sick Body: Structuring Illness in the Techno-Material Age
Dissertation submitted to the Faculty of the Graduate School of the University of Maryland, College Park, 2016