ABSTRACT

Dissertation Abstract

Cubbison, Laurie B. Ph.D., Purdue University, May 2000. Validating Illness: Internet Activism in Response to Institutional Discourse. Major Professor: James Porter/ Patricia Harkin.

The purpose of the present study was to investigate the role played by activism in Internet support groups for people with chronic fatigue syndrome and/or fibromyalgia syndrome. Given that discussion taking place on the support groups indicated that participants often need to engage rhetorically with representatives of a wide variety of social institutions (such as government agencies, medical clinics, insurance companies and the news media), the study examined these various rhetorical situations, the role of institutions in structuring them, and the efforts of support group participants to develop productive rhetorical strategies for dealing with them. The study found that support group members with previous experience with these situations, whether as professionals working within these institutions or as patients negotiating with them, described their experiences and the resulting knowledge gained to other group members in a manner of knowledge-making known as lore, a form of knowledge-making that was facilitated in this study by computer-mediated communication.

In studying these various rhetorical situations, this dissertation spans a number of fields of rhetorical studies that might otherwise be considered distinct. By examining the role played by medical researchers in naming and defining diseases, it partakes in the rhetoric of science, but by following these definitions into the doctor-patient relationship, it also addresses the concerns of health communication. The rhetorical implications extend into the sphere of public policy when the disease definitions become the basis for social welfare debates such as the availability of disability benefits and the right to die, debates carried out via the mass media, and which become the province of media studies and cultural studies.