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
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.
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.
It was a privilege to participate in the 2019 Coalition event, and I learned a great deal from Heather, Lana, and Jenny’s microtalks as well as from engaging with the attendees. While my talk focused broadly on chronic and contested illnesses and how they are an emergent location of intersectional identity, listening to the other microtalks challenged me to think about the connections between aging and illness, representations of chronic illness in digital spaces, and the white, cis-, western female-ness of contested illnesses.
For me, a few common threads appeared in the puzzle pieces. Since the event, I have been mulling over two points in particular:
- The ethics of publicly identifying as chronically ill. Scholarship in feminist standpoint theory has supported the idea that we publicly acknowledge the aspects of our identities around which we are privileged and/or marginalized. Such work prompts us to return to the idea of intersectionality as not simply the confluence of multiple identities but as a theory of how those identities generate “intersecting oppressions” that “work together in producing injustice” (Collins 18). Since many illnesses are invisible, and since ill people often face discrimination, scholars face a difficult choice: to share or not to share their standpoints. Ultimately, many questions emerge: Should feminist scholars who work on chronic and contested illness—or health and medical issues more broadly—publicly claim their personal connection(s) to them? How might situating ourselves create opportunities for reducing shame or stigma? How might this affect white-identifying and white-passing women differently from Black, Latinx, Asian, Native, and other women of color? How might the opportunity to offer our standpoints change as we age and/or as our illnesses progress?
- The public uptake and circulation of intersectionality. Since the Coalition event, which was held around the same time as International Women’s Day, the Harvard Business Review, Forbes, Time Magazine, and other widely read popular sources have published articles about intersectionality. As excited as we may be about intersectionality entering the national conversation, we must be wary of how it is happening and who is mobilizing the term. I remain deeply concerned that intersectionality is being corporatized and taken up in ways that may harm people with multiply marginalized identities. Questions that especially worry me include: How is intersectional feminism being co-opted as a tool for disempowerment? How are corporations capitalizing on self- care and other feminist practices (and rhetorics)? Whether it is the release of the Disney Pride Collection or advertisements for ThirdLove “bras and underwear for everyone,” we must be critical of how intersectionality rhetoric is occupying our time, money, and attention. Building on Jane Coatson’s Vox article, in which she considers the burgeoning “intersectionality wars,” we must be particularly concerned about how intersectionality is being used as a buzzword in higher education. Here, we must tread even more cautiously, speaking up and taking action when our colleagues of color, in particular, are tasked with the intellectual and emotional labor of carrying out these initiatives.
But what does it look like to “take action” as we encounter the misuse of intersectionality rhetorics? Drawing on terms occurring across the puzzle pieces, I echo Heather, Lana, and Jenny’s work as we chart new paths forward:
Individuals in positions of power and privilege should use public platforms to articulate the complexities of intersectionality as a theory, method, and practice. Write and speak publicly about how intersectionality works and its origins. Medium and The Atlantic, to take just two examples, are public-facing venues that are publishing about intersectionality and may be open to additional public scholarship about the topic.
As intersectionality permeates new discourse communities, we must remain mindful when we call others out about their use of the term. At times, it can be tempting to perform allyship, arguing over jargon instead doing the deep intellectual work of disturbing white, male, cis-, hetero, upper-class, and abled privilege.
Following campaigns such as #CiteBlackWomen, we must make careful choices about who we cite—even in casual conversation—when we discuss intersectionality. When opportunities to engage intersectionality come up, we must make ethical decisions about “adding” intersectionality as a theory, method, and/or practice, considering if it would create additional labor for multiply marginalized scholars, teachers, and students.
From the Microtalk
- “About ME/CFS.” National Institutes of Health, 6 February 2017.
- Bloom-Pojar, Rachel. Translanguaging Outside the Academy: Negotiating Rhetoric and Healthcare in the Spanish Caribbean. Conference on College Composition and Communication, National Council of Teachers of English, 2018.
- Byeon, Yen Ji Julia, Sherrill L. Sellers, and Vence L. Bonham. “Intersectionality and Clinical Decision Making: The Role of Race.” The American Journal of Bioethics, vol. 19, no. 2, 2019, pp. 20-22.
- “Diabetes.” MedlinePlus, 1 July 2019.
- Dingo, Rebecca. Networking Arguments: Rhetoric, Transnational Feminism, and Public Policy Writing. University of Pittsburgh Press, 2012.
- Grzanka, Patrick Ryan, and Jenny Dyck Brian. “Clinical Encounters: The Social Justice Question in Intersectional Medicine.” The American Journal of Bioethics, vol. 19, no. 2, 2019, pp. 22-24.
- Enoch, Jessica, and Jean Bessette. “Meaningful Engagements: Feminist Historiography and the Digital Humanities.” College Composition and Communication, vol. 64, no. 4, 2013, pp. 634-660.
- Enoch, Jessica, and David Gold. “Introduction: Seizing the Methodological Moment: The Digital Humanities and Historiography in Rhetoric and Composition.” College English, vol. 76, no. 2, 2013, pp. 105-114.
- Enoch, Jessica, and Pamela VanHaitsma. “Archival Literacy: Reading the Rhetoric of Digital Archives in the Undergraduate Classroom.” College Composition and Communication, vol. 67, no. 2, 2015,pp. 216-242.
- Gallardo, Adriana. “Lost Mothers: How We Collected Nearly 5,000 Stories of Maternal Harm.”Propublica, 20 Mach 2018. Accessed 10 July 2019.
- Graban, Tarez Samra. “From Location (s) to Locatability: Mapping Feminist Recovery and Archival Activity Through Metadata.” College English, vol. 76, no. 2, 2013, pp. 171-193.
- Hallenbeck, Sarah. Claiming the Bicycle: Women, Rhetoric, and Technology in Nineteenth-Century America. SIU Press, 2015.
- Jack, Jordynn. Autism and Gender: From Refrigerator Mothers to Computer Geeks. University of Illinois Press, 2014.
- Koerber, Amy. From Hysteria to Hormones: A Rhetorical History. Penn State Press, 2018.
- Miller, Ryan A. “Toward Intersectional Identity Perspectives on Disability and LGBTQ Identities in Higher Education.” Journal of College Student Development, vol. 59, no. 3, 2018, pp. 327-346.
- Raghupathi, Wullianallur, and Viju Raghupathi. “An Empirical Study of Chronic Diseases in the United States: A Visual Analytics Approach to Public Health.” International Journal of Environmental Research and Public Health, vol. 15, no. 3, 2018, pp. 431.
- Stayton, Amanda, and Bridget Keown. “Golden Girls, Chronic Fatigue Syndrome, and the Legacies of Hysteria.” NursingClio, 25 September 2018. Accessed 10 July 2019.
- Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” Hypatia, vol. 16, no. 4. 2001, pp. 17-33.
- Wilson, Yolonda, et al. “Intersectionality in Clinical Medicine: The Need for a Conceptual Framework.” The American Journal of Bioethics, vol. 19, no. 2, 2019, pp. 8-19.
From the Response
- Collins, Patricia Hill. Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment. Routledge, 2002.
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/