The ethical use of historical medical documentation
Jessica Meyer and Alexia Moncrieff
What are the ethics that shape or should shape engagement with historical
medical data, particularly archives containing patient voices? This question
has come to the fore through the ‘Men, Women and Care’ project, a European
Research Council-funded project creating a database of information drawn
from the PIN 26 personal pension award records from the First World War.
Held by the National Archives, London, these records contain a wealth of
personal information, including potentially sensitive details of medical
conditions and diagnoses, as well as material concerning stigmatising social
situations, such as domestic violence, prostitution and illegitimacy. Using
material drawn from ‘Men, Women and Care’, this chapter considers the
opportunities presented and challenges posed by this material as sources for
historical analysis. It considers issues of both disciplinary practice and
theoretical framing to explore the position of the historian in relation to
analysing and disseminating the historical patient voice. In doing so, it
asks what use historians can and should make of this information and what
steps the historical community might consider taking to articulate a code of
ethics around practice that is sensitive both to family feeling and academic
Since Roy Porter’s pioneering work on the ‘patient’s view’, historians have
taken up the challenge to rewrite medicine’s past ‘from below’. However,
this chapter argues that they have not been radical enough and have
neglected a key part of Porter’s agenda for the new social history of
medicine. He wrote: ‘We should stop seeing the doctor as the agent of
primary care. People took care before they took physick. What we habitually
call primary care is in fact secondary care, once the sufferer has become a
patient, [and] has entered the medical arena.’ In other words, the beliefs,
behaviour and actions of sick people who did not go to the doctor and
remained ‘non-patients’. To explore the ‘non-patient’s view’, we have to
look beyond self-care and the use of proprietary remedies and alternative
medicine. The sociological term of the ‘symptom iceberg’, which refers to
the aches and ailments that never reach the doctor, is used as a guide. In
turn, historical examples to the following responses to symptoms are
discussed: doing nothing; prayer; finding information; looking to family and
friends; over-the-counter medicines. The chapter suggests how historians can
research the ‘non-patient’s view’, by interrogating familiar sources in new
ways and finding novel sources, many of which will have previously been
regarded as non-medical. Finally, the chapter considers the policy
implications of this work in terms of recent attempts to ease pressures on
healthcare systems that encourage people ‘not to see the doctor’ and opt for
Reinventing medieval leprosy for the modern world, 1850–1950
Kathleen Vongsathorn and Magnus Vollset
By the nineteenth century, most Europeans considered leprosy a matter of the
past. When it was ‘rediscovered’ in Europe and the tropical world, people
looked to history to inform contemporary understandings of the disease.
Using medical journals and textbooks, leprosy histories, policy documents,
newspaper articles, and philanthropic publications, this chapter discusses
modern perceptions of medieval leprosy. First, it shows how medieval leprosy
gained and lost relevance as medical and scientific debates changed over
time. The past was reinvented to correspond with the present, in which
leprosy’s contagiousness and the supposed efficacy of segregation in
medieval Europe were cast as models for modern action. Next, the chapter
explores popular conceptions of leprosy. When Europeans began encountering
leprosy again in the nineteenth century, writers and medical practitioners
drew parallels between medieval Europe and the contemporary tropics, while
differentiating them from modern Europe. The contrast drawn between
‘civilised’ modern Europe and its ‘primitive’ medieval past was part of an
attempt to preserve the superior, ‘civilised’ identity of Britain, in
particular. Leprosy has long been a disease of contradictions, and while
modern Europeans were casting medieval Europeans in a negative light, they
were also looking to their ancestors for positive inspiration towards
philanthropy. Overall, this chapter explores the tension between ‘old’ and
‘new’ ideas about leprosy, showing how perceptions of leprosy’s history, if
conflicting, became deeply ingrained in the conceptualisation and management
of leprosy in the modern world.
This chapter introduces the main argument of the book: that animals have been an important part of urban change during the nineteenth century. The chapter situates the book in the historical literature on human–animal relationships, on cities and on nineteenth-century Dublin. The chapter argues that recapturing animal presence in the city is an important means of writing a new history of ordinary life in Dublin and other cities. A synopsis of each chapter is also provided.
This chapter begins by showing how the First World War improved the technology used in amplified telephony while simultaneously creating the conditions of mass deafening that made such technology necessary. It then argues that the telephone was used as an arbitrator of normal hearing and that the data used to create apparently normal hearing levels in the British interwar telephone system featured a ‘disability data gap’. This disability data gap was embedded in the British Post Office’s ‘artificial ear’, which represented ideal hearing (eight normal men with good hearing) as normal, to the detriment of those at the outer edges of a more representative average curve. Subsequently, those with less than perfect hearing agitated to demand the Post Office supply telephones that could be used by the majority of the population. The Post Office responded by creating its ‘telephone service for the deaf’, and the subsequent user appropriation and modification of this service vividly demonstrates the fluid categorisation of deafness that the telephone enabled. This history reveals how aspirational users employed a variety of strategies to ensure equitable access to telephony and how users with hearing loss created modified devices so that they could access telephony.
This chapter shows how the standardisation of sound was perfected and pursued in the interwar years as the ‘telephone as audiometer’ was embraced as an objective tool to define noise limits and the thresholds of normal hearing. In this way, the audiometer was elevated as a tool for testing hearing loss and prescribing hearing aids because it provided an objective numerical inscription, which could be used to guard against malingering and to negotiate compensation claims for hearing loss. Simultaneously, the ‘telephone as hearing aid’ exploded into the interwar medical market as hearing aid moderation and prescription were complicated by conflicts over categorisation, the status of hearing aids as medical devices and the question of which institutional bodies were responsible for the ‘problem of hearing loss’. Finally, this chapter ends with analysis of the ending of the Post Office’s amplified telephone service and argues that failure to consider user input or the reality of hearing aid usage from the perspective of the ‘deaf subscriber’ led to failure to provide an NHS adjunct for telephony.
Measuring difference, numbering normal provides a detailed study of the technological construction of disability by examining how the audiometer and spirometer were used to create numerical proxies for invisible and inarticulable experiences. Measurements, and their manipulation, have been underestimated as crucial historical forces motivating and guiding the way we think about disability. Using measurement technology as a lens, this book draws together several existing discussions on disability, healthcare, medical practice, embodiment and emerging medical and scientific technologies at the turn of the twentieth century. As such, this work connects several important and usually separate academic subject areas and historical specialisms. The standards embedded in instrumentation created strict but ultimately arbitrary thresholds of normalcy and abnormalcy. Considering these standards from a long historical perspective reveals how these dividing lines shifted when pushed. The central thesis of this book is that health measurements are given artificial authority if they are particularly amenable to calculability and easy measurement. These measurement processes were perpetuated and perfected in the interwar years in Britain as the previously invisible limits of the body were made visible and measurable. Determination to consider body processes as quantifiable was driven by the need to compensate for disability occasioned by warfare or industry. This focus thus draws attention to the biopower associated with systems, which has emerged as a central area of concern for modern healthcare in the second decade of the twenty-first century.
Chapter 2 first discusses the wider philosophical implications of the book’s historical research to argue that the naturalist position on disease and disability is undermined by consideration of how statistical normalcy is technologically constructed. Second, it argues that this presents a problem of ‘mechanical’ epistemic injustice and explores this concept in relation to the ways in which measurement tools have been prioritised as authoritative and trusted ahead of individual testimony about personal experiences of health. Sustained attention is given to the problem of using group averages and reference classes in relation to normalcy and the ways in which ‘correcting’ for attributes like sex, class and race (or not) impacts on the measurement of normalcy. Finally, research from disability studies and the field of hedonic psychology is explored to argue that the measurement of disability is far more complex than a medical model of disability suggests.
This chapter outlines the ways in which our understanding of normal health can shift according to measurement technologies and explains the historiographical and conceptual background to this research. Moving through an outline of each chapter of the book, this introduction argues that our desire for single numbers and quantifiable data has shaped our understanding of the normal as dichotomous to the abnormal. The idea of normalcy is historicised and explained in the context of an era that was overwhelmingly concerned with degeneration and disability and ways of quantifying these deviant attributes through either direct or indirect measurements. The idea that numerical measurable data has privileged (and powerful) epistemological significance is highlighted through explication of the comparison between hearing and breathing, which is characterised by extreme diversity in personal experience which eludes fixed representation. The impetus behind the reduction of these multidimensional sensorial qualities stemmed from powerful bureaucratic forces for whom numerical classification was especially important, namely, the British Post Office and the Medical Research Council, and this chapter details the importance of these two bodies to British society during the interwar years and explains the drive behind their standardisation of normalcy.