Ethics and Health
Time: 2025-09-17 14:30 - 16:30
Location: Medium Hall A at Auditorium Maximum
Chairman: Lavinia Snejana Costea
Events within this Session
Rethinking ‘Oral’ History Ethics from a Deaf and Disabled Perspective
Type: session | Language: English
Time: 14:30 - 16:30
Abstract
In the field of ‘oral’ history, many of us are entrusted with personal stories and private memories. ‘Oral’ history’s roots as an emancipatory field of research, offering socially and politically marginalised communities tools to record their own histories, require additional ethical sensitivity and consideration. This often clashes against barriers within institutional frameworks for ethical approval as well as the legacies of academic research cultures that have historically been exploitative and extractive, especially towards Deaf and disabled communities. Yet, over the past decades, grassroots ‘oral’ history projects have captured the histories of disabled individuals, communities, and organisations. This development is not only vital for capturing the history of disability and disabled people, but also for recognising disability as an analytical lens. Just like race and gender, the category of disability sheds light on overt and implicit power structures in society. However, as a Deaf ‘oral’ historian and as a disabled ‘oral’ historian both researching disability histories from academic positions, we have encountered similar difficulties linked to underdeveloped oral history ethics. In our paper, we will: ● Outline obstacles in current ‘oral’ history ethics that hamper accessibility and inclusivity; ● Explore potential strategies to navigate these obstacles; ● Point out areas in ‘oral’ history ethics that require further development from Deaf and disabled perspectives.
Speakers
Deaf Memories - How to Study?
Type: session | Language: English
Time: 14:30 - 16:30
Abstract
Voices of a Silent People - Renovated Bodies is a three-year research project combining science and art at the University of Oulu and the Humak University of Applied Sciences, funded by the Kone Foundation, focusing on deafness and the history of the deaf. My research focuses on the earliest childhood memories of deaf boarding schools from both a community and individual perspective. Deaf referenced memories have been collected in 2022-2023 from all over Finland. Our Oral history Research is based on interviews with 70 deaf people of different ages in Finnish and Finnish-Swedish sign language. The memories were analysed using categorical content analysis. Based on the sign language data, it can be concluded that sign language plays an important role in the childhood memories and residential experiences of marginalized deaf people. Our research shows that learning spoken language was important in the education of the deaf, and the importance of sign language was given less attention. My research invites us to discuss what kind of traumatic memories and experiences deaf people of different ages still have today. My presentation will focus on the memories of 55-75 year olds.
Speakers
Resistance and Agency in a Medical Multiverse: Intersubjectivity and Oral Histories of Ilness
Type: session | Language: English
Time: 14:30 - 16:30
Abstract
Intersubjectivity in the context of medical oral histories is an insightful concept. My paper considers the implications of intersubjectivity while conducting oral histories with people who navigate between traditional Indian medicines and western (Indianized) biomedicine. The paper focuses on the lives of people with chronic illnesses who follow more than one system of medicine at the same time. This is based on my doctoral research on integrative practices in medicine using oral histories of doctors, ayurvedic practitioners and patients. I argue that oral history can reveal the multi epistemic terrain in which medicine operates by following how people navigate through plural medical systems. By listening ‘intersubjectively and dialogically’[1], the oral historian validates the agency shown by the individuals in seeking their cure. In contemporary biomedical practice in India, this agency in self-seeking cure through systems other than biomedicine is often admonished by doctors. Patients therefore fear speaking to their doctors about following Ayurveda, or other alternative practices while undergoing treatment through biomedicine. Oral history interviews become helpful in providing an essential space for not only listening to illness but also disclosures evaluating different systems of medicine. The paper suggests that overcoming illness is an act of agency and resistance, which also transforms the medical perceptions of the interviewer and that we need such ‘listenings’ which break free of the binaries. Key words: Intersubjectivity; Medical Oral History; Agency, Resistance
[1] Katherine Borland, Alessandra Dellios
Speakers
The (Re)Discovery of Lost Archives of the People’s Democratic Republic of Yemen (1970–1990): Oral History as an Ethnography of the Archive
Type: session | Language: English
Time: 14:30 - 16:30
Abstract
This paper explores the political agency of the older cohort of archivists in the courts of Aden, Yemen, with whom I conducted oral history interviews in 2022, and the therapeutic prospects of that experience. For my study of the General Union of Yemeni Women, a former state socialist women’s organization, and its role in the protection of women who filed for a divorce on the grounds of domestic violence, I was looking for divorce files from the 1970s–1980s. Upon my discovery of the unavailability of any pre–1994 documents in the courts’ official archives, archivists who worked at the time of the People’s Democratic Republic of Yemen (PDRY) recalled the possibility of finding some surviving files in unconventional locations they used to store documents that were deemed insignificant by the post–1990 regime. They also requested conducting oral history interviews with them for two purposes. First, to situate their personal experiences of loss in the broader political violence that led to the destruction of the archives of the PDRY, the Yemeni socialist state (1970–1990). Second, to document moments of healing that they experienced through a younger historian’s recognition of the significance of long-forgotten archival documents. This experience led to an intergenerational (re)discovery of both lost and surviving PDRY’s court files. The journey of searching in those locations was accompanied by an “ethnography of the archives”, a concept that Ann Stoler and Frederick Cooper (1996) developed, urging historians to pay attention to the politics of the archival order. Instead of the historian, I argue that in this specific case, it was the archivists who became ethnographers of the archive, actively demanding and constructing an oral history of the loss of the PDRY’s archives which, at the same time, unpacks their experiences with grief and healing in that intergenerational (re)discovery of files.
Speakers
Participatory Oral History for Social Change: Collaborative Approaches to Mental Health Research
Type: session | Language: English
Time: 14:30 - 16:00
Abstract
People with psychiatric disabilities remain under-served throughout the long history of mental healthcare in the Western world, albeit in different ways. While research into psychiatry’s past may still be a very long way from becoming fully equitable, the inadequacies of treatment and care in mental health in the UK and elsewhere remain a constant. This paper aims to explore how a participatory oral history project that embraced the arts enabled people with long-term psychiatric disabilities to improve their capabilities while also learning new skills. The co-produced outputs, including an exhibition and a film documentary, have helped to bring about positive behaviour change, not only by improving the wellbeing of participants with lived experience of mental illness but also by changing perceptions of mental health in the wider public. Findings show that through participatory oral history research, people with psychiatric disabilities took ownership of the research by actively shaping the content and nature of the outputs that led to significant impact, including challenging dominant public perceptions of mental health services and reducing stigma towards people with long-term mental health needs that rely on the services. The project has helped to shed light on the uneven and often slow developments and transformations in mental health treatment, ultimately contributing to reshaping contemporary understandings of mental health and care. The research indicates that participatory approaches to doing oral history work with people with psychiatric disabilities can increase capabilities, promote critical dialogue and change public behaviour. The paper argues for consciously rethinking the theory and practice of oral history beyond the interview encounter by embracing a participatory action research approach to oral history to improve practices and social outcomes and reduce inequalities in health and social care.
Speakers
Healing or opening wounds? Oral History and Ethics in Emergency Medical Services Research (1974–2003)
Type: session | Language: English
Time: 14:30 - 16:30
Abstract
This paper focuses on ethical issues connected with oral-historical research on the history of emergency medical services in the Czech lands (1974–2003). The oral history method often used to elicit highly personal and emotionally charged testimonies, can have a dual effect in emergency medical service research. On the one hand, it can provide valuable and authentic information about the experiences of doctors and paramedics, thus contributing to a deeper understanding of their identity, experiences, and needs. On the other hand, however, it can also open up several very problematic topics - e.g., traumatic memories from intervention and the role of secondary traumatization, questionable indications and non-compliance with medical procedures (lege artis) in the field, unethical and inaproppriate behavioral towards patients, moral failure, etc. The researcher is thus confronted with confidential and ethically questionable information, and in many cases, he becomes a kind of psychotherapist for which he is not competent. Therefore, similar research opens up a wide range of questions from procedural and applied ethics, making it challenging to find the correct answer. Based on reflection from ongoing research, the paper deals with the challenges and limitations brought by collecting such sensitive data in the context of intersubjectivity (i.e., the interviewer-narrator relationship), but above all, at the level of analysis, interpretation, and publication of the information.