HHH spring meeting 2021: History from below revisited

On February 19, 2021, HHH members and guests from around the world gathered for an afternoon of online discussion about medical history from below. Here you find an impression of what we discussed, video’s of the keynote lectures (forthcoming), and more resources on the subject.

35 years ago, Roy Porter’s programmatic article ‘The patient’s view. Doing medical history from below’ was published. The British historian advocated ‘an alternative history of medicine, largely written from the patient’s point of view’. Historiography, Porter argued, required a historical atlas of disease experiences and subjective interpretations of disease, and how they differed by place, time, age, gender, class, faith, ethnicity and other variables. Is his call for a medical history from below still relevant, or is it outdated, as more and more researchers write not only about people who have sought or been enlisted for medical treatment but also actively with them, to incorporate lived experience? Over fifty participants joined HHH’s spring meeting 2021 to look into this question. Keynote lectures on the topic by Megan Davies, Manon Parry and Leonieke Vermeer were followed by discussions in three groups, each focussing on the approach of one of the speakers.

Megan Davies: How to co-create public history

Megan Davies (associate professor at York University, Toronto, Canada) outlined a model for co-creating public history – or as she prefers: activist history – that values the voices of people with lived experience, in her case of mental health. She based her model on her extensive experience with research projects in which experts-by-experience and experts-by-training work together, and introduced us to two of them: After the Asylum and History in Practice. Such collaborations must be both democratic and interdisciplinary, she argued, involving vulnerable people whose lives have intersected with the mental health system and colleagues from outside the history field. Essential also are two other considerations: equity and flexibility in the research process must be ensured, and research products must be developed or re-thought so that they serve a useful public purpose in the eyes of the group. 

Watch Megan’s keynote here! (Apologies for the Powerpoint trouble in the beginning, it is fixed a minute into the video.)

In her response, Irene Geerts (historian and Phd candidate at the Open University) focussed on how Megan presented herself as an activist researcher and wondered to what extent Dutch academia allows researchers to label themselves that way. That topic was continued in the discussion group. To her, Megan elaborated, activism is in her choice of topics and perspectives. That position not only inspired contemporary historians from below, but also held the solution for the early modernist researchers in the group wondering how they could approach such activism, considering that collaborations with experts-by-experience is no option for them. In addition, it was suggested that the question of what is useful for activists can be a guideline. Fundamental to all history from below, it turned out, is the challenging of assumptions, the questioning of dominant notions of what it means to be (mentally) ill. Part of the aim of cultural-historical research on the experience of (mental) illness, in other words, is to diversify our understanding of what it means to be (mentally) ill.

• Check out the projects that Megan presented:
  After the Asylum: a research project about the history of a revolutionary self-help organisation of former mental patients in Vancouver in the 1970s. This collaboration resulted in the film “The Inmates Are Running the Asylum”, a hit on YouTube.
  History in Practice: a website that offers equitable educational resources on mental health, co-created by academic specialists and community experts with direct experience with mental health services.
• More inspiration from Canada:
  Madness Canada/Folie Canada is an activist site that supports academic-community collaborations.
  Activehistory.ca connects the work of historians with the wider public and the importance of the past to current events.

Manon Parry and Maurits Huijbrechtse: DisPLACE, the digital archive of disability history

Manon Parry (professor of medical history at VU University, Amsterdam) and history student Maurits Huijbrechtse presented DisPLACE, the Dutch collaborative digital archive of disability history. Manon reminded us that (dis)ability is a category like race, class or gender, and as a consequence, medical history misrepresents the past when it does not incorporate the experience of disabled people. Instead of perceiving this idea as a threat, she invited researchers and public historians to embrace it as an interesting way to challenge beliefs that stigmatise and discriminate. Disability history, in Maurits’s view, can be a double-edged sword: on the one hand expanding disability literacy in the able bodied, and on the other hand empowering those who live with a disability. In order to do something about the underrepresentation, scholars with and without disabilities should get together, he suggested, and he invited those who are interested to get in touch.

Watch Manon and Maurits’s contributions here! (Apologies for the sound trouble in the beginning, it is fixed half a minute into the video.)

In his response, Ruben Verwaal (postdoc researcher at Durham University, UK) concluded that although museums, libraries and archives would be the perfect institutions to challenge social injustice, stigma and shame by working together with the communities concerned, a project like DisPLACE highlights that they don’t. The discussion group focussed on the question of why institutions and museums are slow in taking up the challenge of disability studies: first, to make museums better accessible, second to include disability in their exhibitions – not only in temporary, but also in permanent exhibitions. It is important to keep pushing boundaries, to build bridges and to train public historians in disability literacy. In particular for the latter, it is vital that we break down the divide between disabled people and others. History – also long durée history – can help in doing so, because it reveals the cultural roots of perceptions and prejudices.   

• Check out the project that Manon and Maurits presented:
  DisPLACE: a Dutch digital archive that collects stories of living with a disability, built on the principle “nothing about us without us”.
• Read more in Manon S. Parry, Corrie Tijsseling and Paul van Trigt, ‘Slow, Uncomfortable, and Badly Paid’: The Benefits of Doing Disability History’, in Adele Chynoweth et al. (eds.), Museums and Social Change. Challenging the Unhelpful Museum (London: Routledge, 2020).

Leonieke Vermeer: The quantified self in diaries

Leonieke Vermeer (assistant professor in modern history at Groningen University) talked about the use of ego documents as a source for medical history – as according to Roy Porter, diaries and letters are the ultimate sources for the study of the patient’s perspective. Autobiographical documents have indeed turned out to be rich sources for the social and cultural history of medicine and health, but also very complicated ones. Insights from life writing and autobiographical studies, for example about narrativity and subjectivity, are therefore indispensable. As an example, Leonieke analysed a selection of Dutch diaries from the 19^th and early 20^th century as precursors of present-day self-tracking with activity trackers (such as the Fitbit) and the ‘Quantified Self’ movement. In any period, one of her conclusions was, self-tracking is about ableism. Ability as a norm takes shape in the long nineteenth century with the diary as a key ‘technology of the self’ in which the responsible, self-governing individual monitors his or her own health and wellbeing.

In her response, Tinne Claes (postdoc researcher at KU Leuven) challenged that conclusion. Women tracking their fertility cycle, for example, do not do that from the expectation that they can change or control their bodies. In that context, tracking can also be associated with the opposite of ableism, namely with feelings of powerlessness, for instance in women who want to get pregnant, but can’t.

• Read more about Leonieke’s work on the subject in:
  Leonieke Vermeer, From Diaries to Data Doubles. Self-Tracking in Dutch Diaries (1780–1940) (2021)

HHH library: History from below revisited

• Roy Porter, The patient’s view, Doing medical history from below (1985)
• Alexandra Bacopoulos-Viau and Aude Fauvel, The Patient’s Turn. Roy Porter and Psychiatry’s Tales, Thirty Years on (2016)
  The authors review history from below research since Porter’s article and conclude that there is still a lot of work to do.
• John C. Burnham, The Death of the Sick Role (2012)
  When we use the concept ‘history from below’ we tend to look first and foremost to the relationship between doctor and patient and the patient as care consumer. The concept of the ‘sick role’, by contrast, zooms in on the ‘social experience of being ill’. 
• G. Thomas Couser, What Disability Studies Has to Offer Medical Education (2011)
  Disability studies can be of great value to medical education first, by placing the medical paradigm in the broad context of a sequence of ways of understanding and responding to disability that have emerged in the last two thousand years or so; second, by reminding medical professionals that people with disabilities have suffered as well as profited from medical treatment in the last two hundred years; finally, by providing access to a distinctive point of view from which the experience of disability looks very different than it may from the outside.
• Catherine Kudlick, ‘Comment: On the Borderland of Medical and Disability History’, Bulletin of the History of Medicine Vol. 87, No. 4 (Winter 2013), 540-559.
  Medical history misrepresents the past, when it does not incorporate the experience of disabled people.
• Flurin Condrau, The Patient’s View Meets the Clinical Gaze (2007)
  This article gains its inspiration from the fact that to the present day, the history of patients as an intellectual project has not found much reflection. Old categories, such as patient, knowledge and disease, all need to be revisited and rethought. It sketches out several arenas where this debate will have to take place and contrasts Porter’s patient’s view with David Armstrong’s writings on the constructed patient.
• Allan Brandt, ‘From analysis to advocacy. Crossing boundaries as a historian of health policy’, in: Frank Huisman and John Harley Warner (eds.), Locating medical history. The stories and their meanings (Baltimore: Johns Hopkins University Press, 2004), 460-484.
  Brandt raises the question what the task of the historian is or should be. According to temperament, civic inclination and political conviction, he distinguishes between three options: description, analysis and activism. Building on his own experience when writing his seminal The Cigarette Century, he shows how he has moved between positions.