Abstract
As Kate Seear writes in The Makings of a Modern Epidemic, the disease known as endometriosis has been neglected by social scientists, even though its complex etiology and association with gender constructions make it a fascinating case. Its characterizations have varied widely, from a fertility disease associated with “career women” to a much broader environmentally related disease affecting the immune system. It has also been referred to as a “modern epidemic.” Basing her analysis on the work of Science and Technology Studies (STS) scholars John Law and Annemarie Mol and feminist theorists Judith Butler and Karen Barad, as well as Michel Foucault, Bruno Latour, and related authors, Seear offers an in-depth theoretical look at the making(s) of an epidemic as well as its contestation. She draws on interviews with women, medical articles, and self-help literature to make her case. As a sociologist who has studied endometriosis—although from a different angle and inspired by other intellectual mentors—I welcome what Seear characterizes as the first full-length social scientific study of endometriosis. There is much to appreciate in her book, while there are elements that can be critiqued. Like the author, I hope that it will generate future dialogues that both increase our theoretical and methodological sophistication and improve the situation of those with endometriosis.
Theoretical discussion in Seear’s book is dense, but she handles it skillfully and is willing to embrace difficult questions (and positions). She explains her growing skepticism “about even those most basic ‘facts’ about the disease, or at least, what it means to speak uncritically of ‘facts’” (p. 2). Abandoning an “objectivist realism” that assumes a world “out there,” Seear prefers to focus on how we produce accounts that are always in some way “performance and politics” rather than pure description (p. 16). This view critiques mainstream social science approaches and—following Law and Mol—sees reality as “multiple and enacted,” characterized by “mess, confusion and relative disorder” (p. 17). Not surprisingly, she produces a complex narrative, based in an unconventional method. Drawing on Law’s work, Seear chooses an “experimental qualitative methodology of pinboard-pastiche” (p. 22), where, like “post-it notes” (p. 171), objects are assembled in a purportedly “open-ended” and non-hierarchical way. She suggests that this method is not only consistent with what we can (and cannot) know about our subjects/objects, but is also conducive to discovery. I will say more about this below.
Seear’s book is well organized, and her position and intentions are clearly laid out in each chapter. She begins by discussing how endometriosis is “enacted in medical research and advocacy” (p. 23), focusing especially on its characterization as a modern epidemic. Chapter Two examines how the biomedical literature portrays endometriosis through a variety of theories that “produce and reproduce a set of ideas about gender, nature, culture and agency” (p. 23) while “performing” medicine as “heroic and progressive” (p. 24). This is accomplished, for example, by attributing agency to the disease itself as puzzling or enigmatic, while smoothing away any implications about the limitations of biomedicine.
Chapter Three analyzes endometriosis self-help literature, focusing on how this genre “performs” the disease and constructs women’s agency in an often paradoxical fashion. Chapters Four and Five draw on in-depth interviews with twenty women diagnosed with endometriosis, incorporating their lived experience and exploring its “ethical, political, and ontological” implications. Seear addresses the (erroneous) typical patient profile that doctors still tend to have in mind when diagnosing women with endometriosis (or not diagnosing those who do not fit the typical profile). Inverting the usual assumptions of causality, she traces how two common treatment recommendations, pregnancy and hormonal therapies, “produce and reproduce the ‘typical endometriosis patient’” (p. 108).
Chapter Five explores the negative self-images that many women internalize as they grapple with endometriosis and challenges the idea that women are automatically empowered when they are enjoined to “take charge” of the disease. Using a Foucauldian governmentality approach, Seear critiques women’s individualization and “responsibilisation” in a neoliberal state that does not offer them resources. Throughout the book, she investigates the consequences of the persistent entanglement of endometriosis with traditional constructions of femininity. In her conclusion, she rejects the notion that the disease can be—or should be—”pinned down,” but provides some recommendations, including, importantly, the incorporation of women’s voices and experiences into medical research and practice. While she characterizes her narrative as necessarily limited, selective, and in some ways deliberately inconclusive, she also presents it as a “gesture” and “provocation” (p. 169) to stimulate further discussion. In that spirit, I respond with some comments.
Methodologically, it would be useful to know how Seear’s interview sample was constructed, to shed light on how well they represent women with endometriosis more broadly. A reference to feminist research methods appears in a footnote, but the methodological discussion is mainly confined to the pinboard approach. On that subject, while the pinboard-pastiche method seems particularly suitable for creative brainstorming, its usefulness for public sociology is less clear. To translate “private troubles” into public issues (à la C. Wright Mills), and especially to influence public policy, prioritization is important. Moreover, while Foucaldian and Latourian approaches to power and agency are intriguing and useful up to a point, they often leave a surprisingly empty stage when it comes to identifying actual groups with persistent power. I found this to be the case in Seear’s book, which consistently uses the word “political” but often ignores the political role of specific social groups. This applies both to the corporate world, with its dramatic influence on the practice of medicine, and to grassroots organizations like the Endometriosis Association that challenge the racial, economic, and gender stereotyping of women with the disease (note: the EA is incorrectly referred to in the book as the American Endometriosis Association; although it is headquartered in Milwaukee, it is a global organization). The EA is a noteworthy example of a group that is already accomplishing many of Seear’s recommendations, whether testifying before governmental committees or creating face-to-face support networks for those with endometriosis, where experiences are shared and social change strategies are devised.
Interestingly, Seear critiques my positive assessment of the EA’s reframing of endometriosis as an environmentally related disease and my conclusion that this has been a positive development for women worldwide. She implies that my assertions are not well founded. While my observations are mainly sociological ones, it is true that my experience as an environmental sociologist makes me less skeptical than Seear about environmental impacts on human health, and I welcome the successful accomplishments of citizens’ groups engaged in a decades-long struggle to end the well-documented corporate suppression of evidence of dioxin’s dangers. I am less troubled by Seear’s mistaken belief that I came to my conclusions without interviewing any women (this was indeed not clearly stated in my chapter) than by her characterization of my work as a “glowing endorsement of the dioxin hypothesis.” This “performance” of my work strikes me as out of place on the purportedly non-hierarchical sociological pinboard. Space constraints preclude more elaboration on this and other points, but, on balance, Seear’s thought-provoking book offers up many valuable insights and astute critiques that are well worth exploring. Among other things, it invited me to revisit where I presently stand on the realist-constructionist continuum and to ponder how this shapes my work. I recommend her book to others.