Sarah Singer is an Assistant Professor of Technical Communication and core faculty member in the Texts and Technology Ph.D. program at the University of Central Florida. Her research uses rhetoric as an analytical tool for understanding public and professional scientific, technological, and medical discourses. Sarah’s current project, The Empowerment Paradox: Rhetorics of Lyme Disease and the Future of Chronic Illness, examines how patients are forced to navigate the digital deluge of online health information and reveals that they are both forced to be empowered and harmed by their empowerment practices. Sarah’s work appears in journals such as Peitho, College English, Technical Communication Quarterly, and Journal of Medical Humanities.
Chronic and Contested Illnesses at the Intersections
Microtalk
As feminist rhetoricians imagine the next generation of intersectionality research, chronic and contested illness should be at the forefront. Ranging from well-understood, sometimes manageable conditions such as Type 1 Diabetes, to misunderstood, often unmanageable conditions like Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS), chronic illnesses impact 33 million Americans each year, or about 45% of the U.S. population. As Susan Wendell puts it, chronic illnesses fall on a spectrum between “healthy disability” and “unhealthy disability,” and an individual’s condition is likely to shift over time. Many chronic illnesses are contested because they involve ambiguous, so-called “subjective symptoms,” such as pain, fatigue, and mental fogginess, posing a challenge for healthcare providers who aim to identify a specific diagnosis and appropriate treatment plan.
Recent popular and scholarly articles argue that chronic and contested illnesses are a feminist issue: they are inherently raced and classed, disproportionately affect women, and shift our understanding of what counts as disability.1 Research suggests that individuals who identify as LGBTQ+, especially LGBTQ+ people of color, may face extraordinary barriers in their efforts to seek care (Miller). Bioethicists and clinicians have noted that an intersectional approach can help healthcare providers understand how “multiple dimensions of social inequities affect patient-clinician relationships within institutional contexts” (Grzanka and Brian 22), especially as they seek to understand the complex relationship between race and health outcomes (Byeon, Sellers, and Bonham 20).
Accordingly, chronic illnesses present significant ethical challenges for feminist scholars, including recruiting vulnerable participants, using public/private research sites, and interpreting other people’s stories. In what follows, I offer four considerations for CFSHRC members as they approach research, teaching, and service:
- Consider illnesses historically with an eye towards intersections. Chronic and contested illnesses are specific to time periods, spaces, and locations. To take one example, “hysteria” was once a commonly diagnosed illness that was given primarily to white, upper-class women who suffered from chronic exhaustion and anxiety. Today, “hysteria” has been replaced by new conditions such as fibromyalgia, ME/CFS, multiple chemical sensitivity, and rheumatoid arthritis. As they trace the history of such illnesses, scholars might draw on work by Rachel Bloom-Pojar and Jordynn Jack, which examine how race, gender, and class impact diagnosis and treatment.
- Consider your research selection criteria and quotation practices as you plan new projects. As ProPublica recently reported, Black mothers are 3-4 times more likely to die from childbirth. In an article about their data collection methods, the journalists at ProPublica argued that researchers must “[w]ork extra hard to include women of color—and allow extra time to elicit and incorporate their stories.” Feminist historiographers must ask: What does this mean in practice? How can we elicit stories without creating additional burdens or, worse, harm, for human subjects? Feminist rhetoricians must create alternative solutions, make space for alternative narratives, offer alternative recruitment methods, and consider new ways of thinking and knowing and knowledge producing.
- Consider the micro and the macro. Jessica Enoch and Jean Bessette, Pamela VanHaitsma, David Gold, and others have documented the relationship between feminist historiography and the digital humanities. As part of this work, they consider “big data” repositories, which create opportunities to study both individual and collective health experiences. Feminist recovery work has focused primarily on identifying exceptional women. But as Sarah Hallenbeck argues, the collective aspect is important because it draws on ordinary, unexceptional people who are otherwise missed, yet collectively their efforts create significant rhetorical velocity (xv). To consider the micro and the macro, we might adopt research methods such as Tarez Graban’s metadata mapping, which can help “account for all dimensions of recovery—unfinished and undetermined, discursive and imagined, demonstrative and generative, methodological and epistemological” (188).
- Consider how chronic and contested illnesses are being exploited for monetary gain. To demonstrate how these ideas come together in practice, scholars might explore how chronic and contested illnesses are portrayed on television and the internet, searching across platforms to discover which people, corporations, and organizations stand to benefit from the diagnosis and treatment of a particular condition. This commercial for SpeakEndo.com, for instance, would be an effective class activity or thought exercise to inspire new research. In it, a distressed white woman debates about whether or not to discuss her endometriosis symptoms with her doctor. A quick search reveals that SpeakEndo.com is a product of AbbVie Inc., a pharmaceutical company that produces endometriosis drugs. As feminist rhetoricians, we must discern the origins of the artifacts we analyze and work to contextualize them fully. Following Rebecca Dingo’s work on empowerment, we must remain wary of how patient empowerment rhetorics are levied to collect private health data, sell medical tools or devices, and/or deepen the asymmetrical power relations between healthcare providers, institutions, and patients. In this case, taking an intersectional approach to the analysis highlights the raced, gendered, and classed aspects of endometriosis.
As I hope this microtalk has demonstrated, chronic and contested illnesses are areas in which sexism and racism—Kimberlé Crenshaw’s original intersections—compound and can lead to significant consequences. As rhetoricians take up issues of illness in their research and teaching, crossing into fields such as disability studies and the medical/health humanities, it is integral that scholars situate illness as a key dimension of intersectional identity. Together, we can generate innovative methods for applying intersectionality theory to practice in feminist rhetorical historiography and beyond.
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1For instance, see bitchmedia’s “In Sickness” series as well as articles from interdisciplinary journals, such as Social Science and Medicine and the Journal of Literary and Cultural Disability Studies.
Response
References
To cite this page:
Singer, Sarah. “Chronic and Contested Illnesses at the Intersections: A Micro-Talk.” Peitho digital insert, Vol. 22, No. 1, Fall/Winter 2019. https://actionhour2019.cfshrc.org/sarah-singer/