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Madness in the Archives: Anonymity, Ethics, and Mental Health History Research
Abstract
Historians have long been vexed by the challenges of using patient records as primary sources. Lurking behind the many methodological and interpretative challenges are ethical questions involving the status and identity of the dead patient. What rights do the deceased maintain over their medical records? What ethical obligations do researchers have in analyzing these historical records and, in particular, to preserving the anonymity of patients? Do professional duties diminish the further back one goes in time? Do patients suffering from mental distress differ from other “medical” patients in the ethical regard owed to them? Now that we know about the care of the mentally ill outside of formal institutions during the era of the asylum, is there something intrinsically different about the status of individuals once they entered formal institutions? Or do the designations of “lunacy” or “idiocy” on extramural death certificates or in census enumerators’ schedules oblige a similar professional discretion? Is the concern over confidentiality giving way to a new emphasis on returning names (and agency) to vulnerable groups in the past? This paper explores these questions, ones that lie at the heart of what we do as historians of disability, medicine, and society.
... Canadian historians Wright and Saucier (2012) have explored the same issues. This particular article surveys the practice of approaching records of 'patients' in the English-speaking literature and analyses the intentions of anonymity as historians have attempted to balance the 'right to research' with a 'duty to protect (confidentiality)'. ...
In South Africa, as elsewhere, museums, archives and other institutions often house large and growing quantities of medically-related records. This paper draws attention to some of the complex issues concerning these materials such as the process of collecting and accessioning the material into public, museum or archive collections. The paper also explores the legal situation of their status within these collections, the lack of appropriate national protocols and guidelines for access to and the use of medical records for research purposes, as well as some of the problems encountered by researchers and historians in using such material. Moreover, the current guidelines used by biomedical professional bodies are seldom of assistance. Some specific problems which need to be considered are elucidated as researchers and historians try to find a balance between the right to privacy and confidentiality on the one hand, and the right of access to information on the other. This challenge is becoming more pressing in the face of the new requirements of the Protection of Personal Information (POPI) Act. We conclude that it is imperative that new guidelines are drawn up regarding medical and related material and suggest that the South African Museums Association should take the initiative in this endeavour.
Inspired by the work of Christine Sleeter and Avril Bell, among others, the articles that comprise this Special Issue seek to respond to questions focused on the relationship between family history and the processes of migration and colonisation and how this might impact on a family’s sense of itself today [...]
This thesis will carry out a historical investigation into aspects of the lives and experiences of deaf people in Ireland during the period 1851 to 1922. It comprehensively explores, using a 'history from below' perspective, the beginnings of deaf education in Ireland, the formation of deaf communities, the relationship between deaf schools and the Poor Law boards, and deaf people's experiences in workhouses, courts of law, and prisons. It adopts a Deaf Studies perspective that recognises the existence of deaf communities and sign languages. Utilising a wide range of sources, it uses the technique of reading `against the grain? when examining sources such as Census of Ireland Reports and manuscript returns, genealogical sources, and institutional records from deaf schools, workhouse indoor relief registers, prison registers, and court files. Particular use will be made of electronic databases of newspapers of the period. The thesis begins with an outline of the beginnings of deaf education in western Europe and North America, with a brief summary of the different philosophies around deaf education throughout the eighteenth and nineteenth centuries. It then describes the rolling out of deaf education through the country. New sign languages arising from the schools were then described; the male and female variants of 'Cabra Sign', ancestors of Irish Sign Language; and the widely-used signed variants of Protestant-run deaf schools, termed 'Claremont Sign' and 'Belfast Sign'. It is shown that the deaf schools fostered the creation of two communities of deaf people of different denominations. These communities are then profiled by population, employment, location, community and cultural development as well as household structure and marriage patterns. The relationship between deaf schools and the Boards of Guardians is then explored, showing that many factors could prevent the Poor Law provisions on deaf education from being implemented, primarily concern on the part of Poor Law Unions about cost. The result of this was a high percentage of deaf children whose education was incomplete. Next, deaf people's usage of and experiences within workhouses is explored via indoor relief registers. It is shown that deaf people made intense use of the workhouse, particularly for reasons of medical care. By the turn of the century, a large proportion of deaf workhouse inmates were inmates of asylum wards; however, others made frequent but short term use of the house for a multitude of reasons. The experiences of deaf people in court is then examined. Various legal issues are explored, including whether deaf defendants were deemed 'fit to plead' (if not, being declared `not sane? and committed), and deaf witnesses? ability to take an oath, as well as the use of various case law precedent in shaping different reactions to deaf defendants and witnesses. A dataset of court newspaper reports mentioning deaf people is assembled and analysed in terms of the sorts of offences charged, use of interpreters and writing. Following this, deaf people's experiences in prison are explored, particularly deaf convicts undergoing penal servitude. It is found that the Crofton system so highly praised by commentators of the time was not immediately accessible to deaf prisoners in practice. Yet despite communication between prisoners and staff being poor in prison, and the environment posing risks to their mental health, they made effective use of memorials and letters to communicate their wish to have their sentences shortened. The dissertation ends with a summary of cross cutting themes across the thesis and some suggestions for future research.
This article traces the case of Hala, a woman chronic patient of the Lebanon Hospital for Mental and Nervous Disorders (LHMND) in late 1950s Lebanon. Her story reveals a conglomeration of actors, expertise and technologies that regulated both her sexuality and mental illness, as she was moved, returned, then moved again, from the care of the family to the care of the psychiatric institution. By reconstructing an ethnographic case of the story of Hala, the article tackles an under-investigated area of research at the intersection of subjectivity, sexuality, psychiatry and family life. The case of Hala illustrates an on-going tension in defining and diagnosing mental illness for women between two forms of care: institutional psychiatry on one hand—promising a quick return of patients to society—and the family on the other, with its own understandings of what constitutes abnormality for women. Having lived at the hospital for more than twenty years, Hala’s voice and experience provide a powerful contribution to the ethnographic history of psychiatry in Lebanon. The article tackles questions on competing psychiatric and social authorities and the formation of psychiatric subjectivities. It also provides methodological and ethical reflections on the use of archives when conducting ethnographic research on psychiatry from the global peripheries. The case of Hala illustrates the patient’s own experience of LHMND’s policies of social rehabilitation in the late 1950s. It adds to a broader understanding of the processes that have led to the pathologizing of sexuality in under-studied societies such as Lebanon and the Middle East.
This article addresses the role of disability and disabled people in the construction of citizenship and nation through the ideologies and practices of charity from the 1870s through the 1940s. These periods of Guatemalan history are generally thought of as distinct: the Liberal triumph over Conservatives, Liberal dictatorship, and democratic revolution. To the contrary, practices of charity reveal the continuity of these political forms. This article explains the three models of charity that characterized modern Guatemala—caridad, beneficencia, and asistencia social—and outlines how they reflected understandings of the relationship between individuals and the state. It also provides a window into the daily lives of patients at the nation's insane asylum, leprosarium, and general hospital, who were not merely objects of charity but also political subjects who engaged charity models to gain access to resources, people, and mobility. In sum, this article integrates disability into broader historical narratives.
Este artículo da cuenta de un trabajo de investigación documental en el Hospital Psiquiátrico El Peral, en Santiago de Chile. Damos a conocer las particularidades de este tipo de archivos, que se relacionan tanto con su contenido como con el acceso a la información. Respecto a lo primero, presentamos los desafíos de trabajar con historias clínicas, fotografías y documentos históricos relativos a las terapias médicas implementadas. Sobre lo segundo, planteamos las dificultades materiales y culturales de acceder a archivos históricamente cerrados para la comunidad, así como las restricciones propias relativas al trabajo con documentos de usuarios con trastornos de salud mental y privados de libertad.
Este artículo da cuenta de un trabajo de investigación documental en el Hospital Psiquiátrico El Peral, en Santiago de Chile. Damos a conocer las particularidades de este tipo de archivos, que se relacionan tanto con su contenido como con el acceso a la información. Respecto a lo primero, presentamos los desafíos de trabajar con historias clínicas, fotografías y documentos históricos relativos a las terapias médicas implementadas. Sobre lo segundo, planteamos las dificultades materiales y culturales de acceder a archivos históricamente cerrados para la comunidad, así como las restricciones propias relativas al trabajo con documentos de usuarios con trastornos de salud mental y privados de libertad.
This chapter takes up the question of the patient case record and its uses by historians. It opens a window into the world of ‘closed’ psychiatric institutions of the past through the prism of the archive, and the stories inside patient cases. In doing so, the chapter seeks to show how we might decolonise the writing of this history. By encountering the archive, the historian also makes an intervention to it; historians are now exploring the divide between historical evidence and personal reflection and are challenging the concept of the neutrality of the archive.
Although much has been written about counterinsurgency, policing, and incarceration under the British mandate in Palestine, little work has been done on those who entered the ambit of the carceral system as ‘criminal lunatics’. Criminal lunatics – the term used at the time to specifically designate those found ‘guilty but insane’ by the mandate’s criminal courts, and retained throughout this article both for the sake of analytic clarity and to avoid misdiagnosing individuals by the retrospective imposition of contemporary medical terms – confounded the mandatory government by potentially falling under the responsibility of both its criminal-legal and medical wings. While the focus in the wider scholarship on psychiatry has often been on its expansionist appetites, the struggle over responsibility for criminal lunatics in mandate Palestine offers a case study in the reverse; an attempt to abdicate, not aggrandise, as the health department staved off repeated efforts to make them take responsibility for these cases. This article traces these disputes, and the development of a distinct institutional landscape attendant on their outcome. But the fate of criminal lunatics was not merely determined by debates internal to government; families were important interlocutors too, who variously sought the release of their incarcerated mentally ill relatives, or – more worryingly for the mandate – exploited the criminal-legal system as a back-door to the overcrowded and underfunded government mental institutions. Far from seeing psychiatry as a tool of social control, the government expressed concern about the potential misuse of psychiatric ideas, processes, and institutions by Palestinian families as a way to escape obligations to mentally ill relatives. Foregrounding these fraught contestations brings into focus the sharp limits of the mandate’s ambitions in the sphere of the intimate, and the attempts of some Palestinians to expand those limits for their own ends.
Ethics committees standardly require that the researchers address questions concerning anonymity and confidentiality. The conventional practice is to ensure that participants’ names and identifying details are expunged from public records of the research and that high levels of confidentiality of data are maintained in the research process. In this introduction, we outline how authors of chapters in this section ask questions concerning these imperatives, including circumstances where participants actively want their identity revealed and their voice heard or when anonymising might not be possible or may further disadvantage marginalised populations. We explore the argument made by authors that the automatic anonymising of data and the imposition of confidentiality can constrain ethical conduct.
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