Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness

by Molly Margaret Kessler

Overview

In Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness, Molly Margaret Kessler focuses on ostomies and gastrointestinal conditions to show how stigma is nearly as central to living with chronic conditions as the conditions themselves. Drawing on a multi-year study that includes participant observations, interviews, and rhetorical engagement with public health campaigns, blogs, social media posts, and news articles, Stigma Stories advocates for a rhetorical praxiographic approach that is attuned to the rhetorical processes, experiences, and practices in which stigma is enacted or countered.

Engaging interdisciplinary conversations from the rhetoric of health and medicine, disability studies, narrative medicine, and sociology, Kessler takes an innovative look at how stigma functions on individual, interpersonal, and societal levels. In doing so, Kessler reveals how  stories and lived experiences have much to teach us not only about how stigma functions but also about how it can be dismantled.

Product Details

ISBN-13:	9780814282106
Publisher:	Ohio State University Press
Publication date:	05/12/2022
Sold by:	Barnes & Noble
Format:	eBook
Pages:	240
File size:	2 MB

About the Author

Molly Margaret Kessler is Assistant Professor at the University of Minnesota, Twin Cities.

Read an Excerpt

Given the difficulty in defining and studying stigma and its widespread nature, this book aims to chip away at this complex phenomenon by narrowing in on the stigmatization of chronic GI conditions. I am focused on ostomies and chronic GI conditions in this book for a variety of interrelated reasons. Conditions and experiences related to the digestive system are an ideal case for rhetorically theorizing stigma because these conditions sit on the edge of several boundaries. They are invisible, until they become visible (visually, auditorily, or olfactorily). They occupy the junction of the natural (all living things excrete) and the taboo (but what they excrete is unacceptable). And they enable us to consider how some medical technologies, experiences, and interventions fall within the accepted realm of the normal (contact lenses, cardiac implants, appendectomies) while others (excreting waste into a pouch through an opening on the abdomen) are considered abject.

GI-related stigma is not necessarily the most important or far-reaching stigmatization (though some might argue that it is), but the stigma surrounding digestion and related entities, practices, and biomedicalized conditions is as pervasive as it is pernicious. Seven’s story provides an especially painful and severe example of GI-related stigmatization, but stigma is often micro and mundane. I don’t need to look far or try very hard to demonstrate this. Take, for example, how Western society has developed a range of mitigation euphemisms to avoid directly talking about GI-related things and practices. We say things like going to the bathroom, number two, the porcelain throne, doodoo, potty, ladies’/men’s rooms. This is of course just a handful of examples. Most often, when GI topics must be discussed, we find ways to talk around them, buffering our discursive (and sometime material) proximity.

Don’t get me wrong: this book is not an attempt to dismantle stigma by advocating for a complete abandonment of our polite approach to bathroom topics. I imagine I’m not alone in my preference for saying “I have to go to the bathroom” during a meeting rather than getting any more specific or concrete. This book does look, however, at the practices that enable us to avoid, make invisible, and, in turn, stigmatize GI-related conditions. Specifically, I suggest that this inculcated aversion to all things GI evidences widespread fear, shame, and distaste that often leads to, if not precipitates, stigmatization. GI-related stigma no doubt exists, and it inflicts emotional, social, physical, and mental harm across the GI community. Indeed, it is far-reaching and deep-seated. Accordingly, GI conditions and the lived experiences that accompany them are an important and rich site for studying stigma. My hope in narrowing in on GI-related stigmatization is not only that I can deeply examine and theorize stigma in ways that will help address the specifics of GI-related stigma, but also that this specific contribution will motivate and inform additional research into stigma for other conditions, lived experiences, and identities.

Additionally, I focus on GI-related stigma because it is important to me and to the communities in which I live and that I hope to serve. I know Seven’s story because it was shared widely and mournfully within my personal IBD (inflammatory bowel disease) community. In particular, I live with Crohn’s disease, a chronic autoimmune disease that affects the entire GI tract. As much as I write this book from my academic positionality, I write this book from my identity as a person living with Crohn’s disease and, relatedly, as a person who has faced bullying and stigmatization for it. My teenage years, in particular, are scored by experiences with bullying related to my Crohn’s. My own lived experiences and stories serve as compass, counterpoint (and mostly unwanted) companion as I captured, analyzed, and retold the stories you’ll hear in the coming pages. I work throughout this book to make this undeniable positionality present when it is relevant or has something meaningful to add to various discussions.

Table of Contents

Preface

Acknowledgments

Chapter 1        Studying Stigma: A Rhetorical Approach to Stories and Lived Experience

            Rhetoric of Stories, Stigma, Lived Experiences

            Studying Stigma Stories

            Preview of Chapters

Chapter 2        Listening for Stigma: Praxiographic Solutions and Stigma in Practice

            Critiques of Stigma Research

            Praxiographic Solutions

            Stigma in Practice

            An Ethical Case for Engaging Stigma Praxiographically

Chapter 3        Staging Stigma: Ostomies as Worst-Case Scenarios

            Leaks, Stigma, and Visceral Publics

            Worst-Case Scenarios: Ostomies in Public Health Campaigns

            Ostomies on TV: Fear and Disgust in Popular Media

            Staging Stigma through Fear

            Credibility Enhanced through Stigma

            Conclusion

Chapter 4        Protesting Stigma: Disruptive Stories, Temporality, and Ostomies as Lifesavers

            Temporality, Disability, and Progressions of Experience

            Rejecting Compulsory Nostalgia: Disruptive Ostomy Stories as Protest

            Disruptive Stories, Disruptive Timelines

            Complicating a Two-Sided Story

            Conclusion

Chapter 5        Managing Stigma: Visual Acts of Resistance

            Normalcy, Norms, and the Impossibility of Normalization

            Displaying Ostomies and Soliciting Stares

            Visual Rewards and Risks: Sexualizing Disability

            Showing Off Ostomies and Arriving at the Destination of Normal

            Conclusion

Chapter 6        Thinking with Stories: Toward Stigma Interventions

            The Value of a Praxiographic Approach to Stories

            Interventional Insights

            Conducting Entangled Research

References

Index

Editorial Reviews

A welcome addition to a lineage of texts that closely examine stories of individuals living with chronic illnesses and conditions. … I, personally, felt comforted by Kessler's willingness to approach a subject so intimate and so important to many people's lived experience.” —Michelle Cowan, H-Sci-Med-Tech

“Kessler’s highly original praxiography on ostomies and GI conditions traces the concept of stigma through stories of lived experiences that reveal the ways stigma is rhetorically perpetuated and challenged. The thought-provoking insights in Stigma Stories will make an invaluable contribution to interdisciplinary conversations about stigma.” —Lora Arduser, author of Living Chronic: Agency and Expertise in the Rhetoric of Diabetes

“Kessler’s revelations regarding the importance of lived experience to rhetorical studies of health and medicine not only serve the ethical mandate to fight stigmatization but are also significant, insightful, and on the cutting edge of the field.” —Jenell Johnson, author of American Lobotomy: A Rhetorical History

From the Publisher