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Subject: H-Net Review [H-Disability]:  Rembis on Hanley and  Meyer, 'Patient Voices in Britain, 1840-1948 (Social Histories of Medicine, 44)'
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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

_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.

Citation: 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. July, 2022.
URL: https://www.h-net.org/reviews/showrev.php?id=57235

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