Review by Kristen J. Loutensock, Email: ksock3@gmail.com
Keywords: bioethics; medicine; Narrative Studies
In this collection of essays, editors Neil Brooks and Sarah Blanchette approach the difficult and unwieldy task of bringing together two fields that are dense, contested, and completely of this moment: Narrative Studies and the Politics of Art. As their introduction suggests, the collection should be approached less as a complete overview of any single field or methodology, and more as a potentiality–one that helps the reader to see “how seemingly disparate engagements with narratives of health can be productively brought together” opening up “new possibilities for research and analysis” (22). While the introduction brings together key ideas of the function of narrative from fields ranging from Disability Studies, Feminist Bioethics, and Critical Race Theory, to both Medical Humanities and Health Humanities, the animating force of the collection lies in the third term of their title: politics. As they put it, the essays in the collection “challenge the limitations of past and current medical discourse…in order to illustrate how medical institutions can be altered to more equitably benefit all communities” (13-14).
The essays in the collection take up objects that range from novels to multimedia interdisciplinary exhibits, from the legal and medical narratives of ship surgeons to library indexing, and from vaccination conferences to Broadway musicals. The breadth of approaches and objects can sometimes lead to a feeling of disconnect between essays, but the grouping into chapters using the broad topics of institutional narratives, sociocultural narratives, and fictional narratives help to tie each cluster together. Because the focus of the collection as a whole is on health, writ broadly, not every cluster or essay engages directly with either Disability Studies methodology or discourse, yet each section offers a number of provocations that suggest how the collection as a whole is animated by a desire to locate and think through “areas where narrative understanding of health issues must be respected and how the narratives of the marginalized are repressed by dominant Western claims to a scientific objectivity that ignores lived subjectivity” (28).
While the collection as a whole might be more oriented to those interested in health humanities than Disability Studies, a number of essays offer fresh readings of Disability Studies topics like diagnosis, sentimentalism, and narrative prosthesis. The three pieces I will focus on here use a variety of strategies to contend most pointedly with the notion of diagnosis. In particular, Eli Clare’s accessible and personal account of the power of systems of classification and the potency of activism, past and future, to remake and unthink the authority of outside classification, is both intersectional and energizing. His clear call for “collectively questioning the very act of classification and the supposed unassailability of categories and structures of power�? (131) works through how and why narratives of health matter within a narrative that foregrounds resistance. This text also discusses the potential of narrative for active de-pathologizing through a personal account of library classification and the body of the author.
Evadne Kelly, Seika Boye, and Carla Rice’s consideration of a multimedia piece on eugenics within Canadian home economics and teacher training education is similarly clear and accessible, and provides a useful model for thinking through universal design and art about history. They detail the archival work that produced a body of materials used within and across the curriculum at the Macdonald Institute from 1914 to 1948 and how it was used to produce an exhibit that allowed participants to rethink, reframe, and respond to this archive within an inclusive art piece. Their work as a whole challenges the passive systems of pedagogy that were used to uphold and consolidate settler colonial power by asking spectators to be embodied participants within the piece. This included using sticky notes to visibly write back to and on the historical images, inviting participants to inhabit the space as they saw fit, providing written materials in e-reader formats, and committing to producing written work about the piece in accessible and clear language.
Finally, in her reading of the 1931 novel The Chinaberry Tree, Patricia A. Milanes considers how we must pay attention to the cultural specificity of illness narratives rather than seeing them as solely individual accounts. This means not only attending to who wrote and read these narratives, but also to how a focus on the individual bodies in the novel elides the way that community functions within it, arguing that “Fauset breaks firmly with the abundance of fictional models of white women’s psychic distress and its earlier isolationist treatment, including institutionalization, by locating health within her characters’ reach if they receive community support” (239). By reexamining a novel most often read as being about racial uplift as instead a “medicalization of African American women’s struggles” (244), Milanes is able to bring together the pathologizing of the African American body, traditions of self-care, and the segregation of medicine in order to elongate and celebrate a history of Black community-based care.
The other essays in the collection, while less overtly engaged with disability scholarship, offer up tantalizing glimpses of how health humanities can be politically engaged and global in scope. As the editors point out in the introduction, COVID quite radically affected the number and subject of the contributions, with many of the published pieces directly addressing the contemporary moment and some authors forced to drop out. Yet, it is this absence that might most illuminate how health, narrative, and disability are always-already political and allow us to dream of the power of narrative art still to come.
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.