Abstract
In recent years, stigma has received increased academic attention in the areas of medical sociology, health communication, narrative medicine, and rhetorical studies (e.g., Bennett, 2019). With a focus on ostomies and gastrointestinal (GI) conditions, Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness by Molly Margaret Kessler aims to reveal the central position of stigma in human life featured by chronic conditions, build and expand our understanding of stigma, and shed light on how to resist stigmatization. An ostomy is a medically necessary, surgically created opening on the abdomen to allow the elimination of bodily waste when a person's GI system can no longer perform this function normally. It often results in a significant alteration of body image due to the need for an external appliance to collect waste. The book shows how stories and lived experiences have much to teach us not only about how stigma functions but also about how it can be dismantled. Throughout the book chapters, the author demonstrates how real and powerful stigma is and how urgently we need to resist it.
In Chapter 1, “Studying stigma: A rhetorical approach to stories and lived experience,” Kessler introduces the groundwork for a rhetorical approach that can facilitate studies on stigma stories and lived experiences. Considering the prevalence of chronic diseases, the author has analyzed the reasons why many people living with a chronic illness may feel stigmatized. As defined by Goffman (1963, p. 3), stigma is most commonly referred to as “an attribute that is deeply discrediting.” Given the undesirable consequences of stigma surrounding chronic illness, such as embarrassment, shame, or even decreased quality of life, it is necessary to examine the phenomenon through stories of people living with chronic conditions. Besides, the author points out that rhetoric, as a study of meaning-making and power, has much to offer in a field often dominated by linguistic approaches. Multiple sources of data were collected in this multi-year study, including participant observations, interviews, and rhetorical engagement with public health campaigns, blogs, social media posts, and news articles. Drawing on these data, a rhetorical praxiographic approach is championed.
Chapter 2, “Listening for stigma: Praxiographic solutions and stigma in practice,” demonstrates how a rhetorical praxiography can be a useful approach for examining stigma stories. The shared stories enable readers to better understand the lived experiences of those people with chronic illness. The author shared her own story as a person with Crohn's disease. In Chapters 3, 4, and 5, Kessler then examines how stigma is enacted and countered, with a particular focus on how ostomies and chronic GI conditions are staged through lived experiences shared in stories. An example in Chapter 3, “Staging stigma: Ostomies as worst-case scenarios,” shows how a most trusted source of health information has utilized stigma to promote its antismoking campaign. Chapter 4, “Protesting stigma: Disruptive stories, temporality, and ostomies as lifesavers,” focuses on empowerment through exploring positive stories people fighting stigma—leaving the hospital, returning to “normal” life, and falling in love.
Chapter 5, “Managing stigma: Visual acts of resistance,” is concerned with how to manage stigma via visual acts of resistance. Kessler has reviewed particular cases on the role of visual practices (e.g., displays) and norms concerning gender and sexuality in stories that stigmatize ostomies as well as those that counter stigma. This chapter argues that visual displays or lack thereof are commonplace for enacting and countering ostomy stigma, as can be shown in a range of stories, including “Too Ugly for Love?” (a show that chronicles people with conditions and medical experiences that have deemed them romantically unlovable) in the UK television series, social media campaigns, and stories of individual ostomates.
Chapter 6, “Thinking with stories: Toward stigma interventions,” concludes the book by pointing out the primary stakeholders in a rhetorical investigation of stigma, namely (a) researchers in the rhetoric of health and medicine (RHM), (b) people living with ostomies and other chronic conditions, (c) healthcare providers, and (d) public institutions. To trace and analyze stigma stories, we should look beyond the experiences of ordinary people in their mundane life and also consider the narratives in nationwide communication at a more macro-institutional level. A rhetorical approach enables us to understand stigma and shed light on how to avoid implicit cultural biases, challenge or utilize stigma related to chronic illness, and in the end achieve good future work in health care and communication. The author points out that many chronic conditions are stigmatized because they are seen as character blemishes, such as those that are viewed as preventable and/or associated with deviant behavior like HIV and sexual promiscuity, diabetes and unhealthy eating, or lung cancer and smoking.
A distinctive feature of the book is its interdisciplinary character. The author draws upon a range of disciplines such as health and medicine, disability studies, narrative medicine, and sociology.
Most of the data used, however, are from the UK and not necessarily applicable beyond the specific cultural context. All in all, this book is indeed a timely and informative addition to the existing literature in rhetorical studies on stigma or health communication studies in general.