Disability Studies Community Blog
Review by Hannah Garibaldi, UC Santa Barbara, Email: firstname.lastname@example.org
Keywords: medicine; Lyme Disease; chronic illness
Abigail Dumes’ Divided Bodies: Lyme Disease, Contested Illness, and Evidence-Based Medicine examines the debate surrounding Lyme disease’s chronicity. Specifically, the dispute over Lyme involves the mainstream medical community’s understanding of Lyme disease as easily diagnosable and treatable, as opposed to “Lyme-literate” standards of care which attest to the persistence of the tick-borne infection, its diagnostic complications, and its need for long-term treatment. Lyme disease drives the plot of the text as Dumes constructs the contested disease’s genealogy, mapping its amorphous shape through medical literature and discussions with scientists, interviews with both mainstream and “Lyme-literate” practitioners, and detailed conversations with Lyme patients. Employing what she terms “quantum ethnography,” Dumes makes sense of this often dense, layered, and labyrinthine information by concurrently occupying multiple perspectives at once—allowing her to connect and relate various participants’ contributions in simultaneous, “productive tension” (14). In doing so, Dumes’ intention is not to end the controversy, nor is it to validate or invalidate the “facts” presented by either side. Rather, her aim is to reveal the facts as the individuals within the debate understand them, showing the “bifurcated trunk” of Lyme (19).
But, Lyme disease is also, to use a Hitchcockian turn of phrase, the MacGuffin of Dumes’ piece. Lyme disease serves as the device through which Dumes investigates something much headier: the epistemological contours of evidence-based medicine. Dumes argues that analyzing the Lyme debate helps explain why controversies over contested illnesses have proliferated within the current biomedical paradigm—paradoxical, given that evidence-based medicine is designed to dispel scientific controversy. According to Dumes, the reason is rooted in medicine’s hierarchical organization of kinds of evidence, which prioritizes objective forms of evidence (e.g., double-blind trials) over forms of subjective evidence (e.g., physician opinion). Drawing on Foucault, Dumes connects this to a fundamental feature of biomedicine and the reading of the body: the significance of signs (objective evidence that is measurable) over symptoms (subjective evaluations of the body that are anecdotal). While symptoms remain central to patients’ experiences and clinical evaluations, signs (e.g., test results, etc.) are clear indicators of “medically explainable” diseases. And, herein rests the issue: when relying on objective signs for conclusive determinations of disease, classifications based on subjective measures of evidence, i.e., symptoms, fall outside the domain of medical legibility and are likely to be considered illnesses. This underlies Dumes’ use of the term “divided bodies:” contested illnesses involve “divided bodies” of thought, and contested illnesses are “bodily conditions that are always experienced as diseases but are often perceived to be illnesses” (7). Considered “medically unexplainable,” contested illnesses like Lyme are delegitimized, prompting groups who remain outside the domain of medical readability to mobilize and use scientific evidence (produced, in fact, through evidence-based medicine) to make their own claims to truth—searching for both “biological legitimacy” and, as Dumes references from Didier Fassin, “epistemo-legitimacy” (7).
In the rhetorical structuring of her project, Dumes does not rank evidence. As she states in her introduction, she avoids “taking a stance” on or hierarchizing the testimony of her interlocutors, demonstrating an interest in how and why they understand Lyme the way they do rather than adjudicating the validity of their assertions (19). Moreover, she places these contributions in textual dialogue with each other, ensuring an equitable attention to different perspectives (19). This is evident throughout the book, including her first chapter, “Mapping the Lyme Disease Controversy,” in which she charts the Lyme debate and evaluates its contours through a winding exploration of its “rhizomatic nodes” instead of constructing a blatant schematic of the arguments of each side (27). Additionally, she methodically breaks down the division between “disease” and “illness” within her writing, focusing on how patients “live” disease (8) and the lived experiences of those who study and treat the disease (19). The second, third, and fourth chapters of Divided Bodies exemplify this approach—as Dumes uses her experience interviewing and interacting with figures within the Lyme debate to analyze Lyme prevention practices, patients’ perspectives, and physicians’ approaches to understanding and treating the disease. This allows her to observe both the “embodied and epistemic dimensions of contested illness’s ‘divided bodies’” (99). And, in her fifth chapter, “Lyme Disease, Evidence-Based Medicine, and the Biopolitics of Truthmaking,” Dumes ties this discussion together, reflecting on the biopolitics of contested illnesses and evidence-based medicine, the ways in which knowledge is structured and hierarchized, and considering mainstream and Lyme-literate physicians’ perspectives of evidence-based medicine within their practices (187-188).
Situating Divided Bodies within Disability Studies is tricky. Illness has, to say the least, a complex relationship to disability, and Disability Studies has in the past been hesitant to embrace illness because of, among other reasons, the affiliation of illness with contagion, its medicalization, and its relationship to cure. As Susan Wendell notes, illness is often associated with impairment, and hence related to the medical model and its determinations of normality (164). This has shifted with more recent work (from scholars like Wendell) that attends to the issue of unhealthy disability and chronic illness. Dumes’ discussion with Lyme patients reveals that these individuals often blame the disease—rather than society—for the majority of their suffering, but social hardship does impact those with contested illnesses through the persistent delegitimization of their distress. And, while Dumes uses detailed reports of medical professionals’ readings of the Lyme body to frame the disease as something that is contractible and treatable, she also complicates the medical understanding of the illness with extensive narrations of the patient’s experiential perspectives. For this reason, Dumes is able to illuminate the ways in which Lyme patients frame both their disease and body, often in distinction from the mainstream medical community. This attention towards how the disease is “lived” and how patients make meaning from their experiences allows for a more intricate exploration of the embodied components of illness. This focus in part mirrors the increasing consideration of impairment within Disability Studies—particularly from scholars like Tom Shakespeare who has demonstrated a renewed attention towards impairments as bodily circumstances that are not themselves “neutral” (33).
While Disability Studies clearly avoids the perspective of the medical model, Dumes’ text is a useful study of how medicine participates in the construction and prioritization of certain kinds of knowledge and evidence. Lyme serves as an especially fruitful case study because of the degree to which its two contentious camps—mainstream and Lyme-literate—differ in the ways they organize information about the body. Moreover, Dumes relates this evaluation of the ways in which knowledge of the body is produced and privileged to more pervasive systems of power. She demonstrates that the Lyme debate reveals how evidence-based medicine acts as a tool of biopower and a form of biolegitimacy, evident in its management of bodies and its “hierarchization of bodily conditions, some of which are deemed to matter more, and some of which are deemed to matter less” (217). Divided Bodies thus serves as a useful primer for those interested in the nuances of the controversy, and for those desirous of more detailed examinations of the hierarchies and epistemological limitations within the current biomedical paradigm.
As a way of concluding this review, it is worth reflecting on the question of subjectivity, which clearly haunts Dumes’ text, and its own relationship to my review. In her introduction, Dumes recalls receiving a curious warning from one of the scientists she interviewed: “‘Well, you better not get Lyme…You’ll ruin the credibility of your project’” (14). While Dumes never contracted the disease herself, this does compel me to state my position: I am someone who has dealt with Lyme disease and has faced similar experiences to those described by the patients Dumes interviewed. And, as someone already familiar with the many prongs of the debate, the patience by which Dumes relayed the story of Lyme—as it is explained by both patients and practitioners—reveals both the seriousness by which she approached her subject matter and her strong attention to detail. Within mainstream and Lyme-literate groups, the sense of frustration and, at times, animus directed towards those on the opposite side is tangibly relayed throughout her text. While the debate over Lyme remains entrenched and the battle lines are still drawn, some of the clues which might lead to “harmonious resolution” (234) may very well exist in Dumes’ carefully crafted intervention. Becoming aware of how each side thinks and the underlying ways in which each group’s knowledge is structured (and, perhaps, is limited), Dumes’ construction of a textual dialogue between Lyme’s competing camps points to the potential for greater understanding and, perhaps in the future, more compassionate communication.
Shakespeare, Tom. Disability Rights and Wrongs Revisited. 2nd ed., Routledge, 2014.
Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” The Disability Studies Reader, edited by Lennard J. Davis, 4th ed., Routledge, 2013, pp. 160–72.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.