Anne R. Hanley, Jessica Meyer, eds. Patient Voices in Britain, 1840–1948 (Social Histories of Medicine, 44). Manchester: Manchester University Press, 2021. xv + 347 pp. $130.00 (cloth), ISBN 978-1-5261-5488-0.
Reviewed by Michael Rembis (University at Buffalo (SUNY))
Published on H-Disability (July, 2022)
Commissioned by Iain C. Hutchison (University of Glasgow)
Patient Voices in Britain, 1840-1948, a collection of new and original scholarship edited by Anne Hanley and Jessica Meyer, is a remarkable achievement. It sets an important benchmark in the social histories of medicine and at the same time offers useful suggestions for moving the field forward. As its title indicates, the book focuses primarily on Britain—with some material coming from Ireland and Germany—in the century before the creation of the National Health Service. The book centers “patient” experiences and voices in nine chapters that explore histories of military medicine, Poor Law medicine, disability, psychiatry, and sexual health. Hanley and Meyer’s introduction provides readers with a powerful overview of efforts made since the mid-1980s to shift the focus of social histories of medicine toward the patient, noting both the significant advancements made in the literature and the places where more work remains to be undertaken.
Patient Voices in Britain is divided into four thematic sections, each of which addresses a central concern of historians who are interested in exploring the social histories of patients. The two chapters in part 1 focus on new approaches to “locating the patient.” Part 2, “Voices from the Institution,” contains three chapters. Part 3, “User-Driven Medicine,” and part 4, “Negotiating Stigma and Shame,” each contain two chapters.
In chapter 1, Michael Worboys brings more than thirty years of experience to bear on a discussion of the importance of examining self-care, or what he refers to as the histories of “non-patients.” Before people placed themselves in the care of a physician, they engaged in a range of behaviors in an attempt to treat their own illnesses. Their actions ranged from prayer to “doing nothing” to seeking out information, relying on family and friends, or taking various “medicines.” By only examining the “clinical encounter,” historians are engaging with only the “tip of the iceberg” when it comes to people’s experiences with illness. Writing histories about self-care both before and after, and sometimes in the absence of, more formal encounters with physicians, Worboys argues, enables historians to better understand a broader range of diseases, including minor and chronic conditions that rarely draw the attention of medical historians. Historians who study non-patients will also be better informed about a wider range of people living in the past and will ultimately be better equipped to provide advice and important context in the formation of policy and the delivery of healthcare in the present.
In chapter 2, Jessica Meyer and Alexia Moncrieff use their creation of a publicly available and searchable database drawn from the 22,829 British Ministry of Pensions files created for soldiers during and after World War I to engage with the ethical challenges that arise with the increased digitization of sensitive archival materials. Making the information contained within the files freely available to a global community of internet users raises questions about the role of medical and state surveillance of historical actors who were not given a choice in the recording and sharing of sometimes intimate and stigmatized details of their lives, and who, because they are dead, cannot be part of the process of creating historical scholarship—even if their descendants may be affected by that scholarship. In the end, Meyer and Moncrieff contend that both complete anonymization—which often is rarely complete—and total transparency, have their drawbacks and concerns, but that naming and identifying marginalized historical actors in ways that are both ethical and responsible is important.
Chapter 3, written by professor of social psychology and health promotion Burkhart Bruckner, analyzes the experiences of former inmates of psychiatric institutions in Britain and Germany. Using both published and archival sources, the chapter highlights the continuities of various types of resistance engaged in by former asylum inmates across European cultures in the decades around the turn of the twentieth century. Bruckner begins by acknowledging the lack of historical scholarship on former inmates who were active before the mid-twentieth century, as well as the relative dearth of comparative studies that focus on the work of users, survivors, and ex-inmates who challenged psychiatric authority and the power of the asylum. Using a detailed analysis of two people, the well-known British spiritualist Louisa Lowe (1820–1901) and the lesser-known German merchant Adolf Gloklen (1861-c. 1935), Bruckner explores what he calls “lunatics’ rights activism” between 1870 and 1920. Lowe and Gloklen were outspoken critics of the asylum and active organizers during their lifetimes.
By revisiting English asylum case notes with an eye toward inmate actions and identities, Sarah Holland shows in chapter 4 how the nineteenth- and early twentieth-century asylum farm functioned as a site of definition and contestation. Holland uses asylum casebooks to “extrapolate” aspects of the patient experience and in some instances the “patient voice” relating to farm work. Holland contends that interpreting asylum casebook entries merely as mediated assessments of treatment and recovery undermines the patient as a person and the active role patients played in making sense of work and the wider institutional environment. The chapter relies on the idea that case notes were co-narrated by patients and physicians and that patients could narrate thoughts and experiences through more than words. Patients’ actions, reactions, behaviors, and “occupational identities” can all be read through casebooks.
Chapter 5, written by Paul Carter and Steve King, uses letters and other documents to take readers beyond the immediate medical encounter, complicating readings of the patient as a relational status centered upon the doctor-patient dyad. Carter and King examine the health-related experiences of poor people in England after the creation of the New Poor Law in 1834. They draw upon some of the more than six thousand letters and other documents held in the Central Archives of the New Poor Law. Although not all of the material contained in the archive was produced by or is about sick people, many of the documents reveal important insights into the health maintenance and treatment seeking activities of England’s poor population. Carter and King rely on advocate letters, witness statements, and pauper or poor people’s letters to explore the role of time and distance in determining health-related behaviors, as well as the more specific moments when poor people and their allies claimed their rights and contested exclusion from expanding health care settings. Finally, Carter and King consider the multiple, intersectional forces that shaped the lives of poor people living with minor ailments and chronic conditions.
In chapter 6, Coreen McGuire, Jaipreet Virdi, and Jenny Hutton discuss the important role of user-inventors and DIY enthusiasts in the creation and modification of various breathing apparatuses over the course of the long twentieth century. The chapter crucially embeds the creation of breathing technologies in the everyday lived experiences and family dynamics of users of those technologies. It shows the important role that gender and class played in the creation, modification, and use of sometimes cumbersome and expensive breathing apparatuses. This chapter, like the other chapters in the volume, centers disabled people’s experiences and voices.
Using personal diaries, letters, and oral histories produced by British Great War soldiers, chapter 7, written by Georgia McWhinney, also challenges the notion of a patient-practitioner binary and suggests that patients were more than merely “mirrors to biomedicine.” Patients functioned as “complementary practitioners.” Individually and communally, soldiers established their own “vernacular” medical systems. McWhinney defines “vernacular medicine” as not simply a catchall descriptor for practices outside biomedicine, but as medicine and medical practices initiated by individuals, spread by word of mouth or through unpublished texts and others shared practices. Soldiers developed their own ways of dealing with everything from trench foot to the debilitating effects of exposure to toxic chemicals.
In chapter 8, Lloyd (Meadhbh) Houston addresses the “archival vacuum” surrounding the voices of venereal disease (VD) sufferers during the interwar period by examining the personal correspondence of Ireland’s Dr. Thomas Percy Claude Kirkpatrick. Kirkpatrick’s archived papers contain 120 letters written between 1924 and 1947. People suffering from VD, patients, and service users are often absent from studies of the 1913-16 Royal Commission on Venereal Disease and the state-funded Venereal Disease Service to which the findings of the study gave rise. In this wide-ranging chapter, Houston explores the gendered politics of patienthood; the stigmatizing of illness and confession; divorce and separation; the role of fees, charity, and welfare in experiences of illness and treatment; and the demographics of VD. He provides important context for Kirkpatrick’s correspondence by taking a “four nations” (Ireland, England, Scotland, Wales) approach to thinking about people’s experiences with VD during the interwar years. Among other contributions, this chapter shows how medical encounters did not necessarily define people negatively and could, in fact, be used by VD sufferers to address wider social problems.
In chapter 9, the book’s final chapter, Anne Hanley makes the case for using fiction as a source for “patient-centered” social histories of medicine. She relies on a methodology that combines fictional and more traditional sources in a study of patient experiences, which she describes as a “mapping” of the “emotional worlds” of British VD patients. Hanley argues that fiction should not be a “last resort” that historians turn to only when traditional archival materials are unavailable. Rather, Hanley contends, fiction’s “creative reconstructions of real-life struggles and emotional worlds makes it an important source to be considered alongside traditional sources. When used thoughtfully, fiction enables historians to access complex and colourful lives otherwise obscured by the clinical nature of patient case notes” (p. 302, emphasis in original). Shame and stigma became powerful and pernicious factors in the social construction of disease and experiences of illness in Victorian and Edwardian England. One way to explore these emotions is through the use of fiction.
Noteworthy is this volume’s commitment to displaying the ways in which well-documented and carefully argued history can be used to inform current, sometimes pressing, conversations about healthcare and about the lived experiences of sick people. Without devolving into presentism or the broad, almost meaningless, generalizations that can be found in some other work, each of the contributors makes the case for the timely and measured intervention of historians and other humanists into contemporary concerns and debates. As Hanley and Meyer note in their introduction, history, and the humanities more broadly, have an important role to play in the development of healthcare systems and cultures in the present. History, moreover, can provide a “long view” of various interventions and experiences that otherwise would not be readily visible or easily accessible to people outside the academy.
One of the critiques of the turn to “patient-centered” histories that has taken place in the social histories of medicine since the 1980s is that histories “from below” do little more than provide interesting or colorful anecdotes—they do not provide methodological, analytical, or theoretical innovations. That can no longer be said with the publication of Patient Voices in Britain, 1840-1948. Historians and other scholars researching the social histories of medicine in other parts of the world should use this volume as a basis from which to engage in their own work.
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Michael Rembis. Review of Hanley, Anne R.; Meyer, Jessica, eds., Patient Voices in Britain, 1840–1948 (Social Histories of Medicine, 44).
H-Disability, H-Net Reviews.
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