Epidemic Encephalitis in the Archive

In this post, Kate McAlly discusses her historical approach to a collection of letters written in the 1930s by a patient to her doctor about her chronic illness, epidemic encephalitis. Thinking through how to ethically engage with this material, Mcally analyses the concepts of experience, encounter, exclusion and emotion, and their roles in archival research.

In November 1932, a Professor of Medicine at the University of Sheffield named Arthur Hall received the first in a series of letters written by one of his patients, who we will call Edith. Writing to Hall regularly over the course of the next year, in these letters Edith described the symptoms of an illness she was experiencing called ‘Epidemic Encephalitis’. First identified in England during April 1918 as part of an international epidemic, over the next few years this disease became understood to be caused by a virus which targeted areas of the central nervous system, in particular, the brain. Whilst in 1918, Epidemic Encephalitis was linked to ‘acute’ symptoms of fever, lethargy, mania and unusual eye movements, by the early 1920s this disease was thought to have long-term implications. ‘Chronic’ symptoms were ‘mental’ and ‘physical’, and included ‘eye attacks’, paralysis, tremors, depression or ‘changes in conduct’, which manifested in violent behaviour, suicide attempts or self-mutilation.[1] Collectively these symptoms suggested to doctors, like Hall, that Epidemic Encephalitis could leave people, like Edith, permanently affected ‘in mind, or body, or both.’[2]

Since coming across Edith’s letters during the first year of my PhD, I have been thinking through some of the ways that historical sources which offer such compelling and somewhat seductive evidence of experience, might be approached. In this post, I will interpret experience as a historical category; as something which is identified and shaped, both by individuals in ‘the past’ but also by historians in ‘the present’. By viewing experience in this way, it becomes clear that what we work with and analyse is not only inherently selective but can also be linked to various encounters and instances of exclusion, which are located across the traditional, temporal boundaries that separate us from those we study. Acknowledging this allows us to begin to flesh out and establish genealogies for these fragments of experience, and most importantly, to identify and position ourselves in the histories we write.

Interest in patient voice and experience within the history of medicine has, for want of a better phrase, a long history. Rooted in the 1980s and in criticisms of works written by and focusing on doctors, historians have since analysed the written word, oral testimonies, material technologies and objects, space and ‘embodied’ experience.[3] Inspired by the reflections of Joan Scott, who emphasised the need to avoid interpretations of the ‘evidence of experience’ as ‘transparent’ and unproblematic, such histories rightly exercise caution, care and respect in their approaches and interpretations.[4] The search for experience in the archive has also received attention. In 2012, Leon Antonio Rocha considered the ‘problem of experience’ in the work of Michel Foucault, addressing those who argued that Foucault denied the people he studied the right to ‘speak in their own voice’.[5] Rocha argued that Foucault conceptualised these as ‘fragments’ of experience which were the product of an ‘encounter’. Within these encounters, an individual in the past came up against and interacted with the apparatuses of power, which in turn gave the resulting fragments a ‘passage through time’, carrying them to historians in the present.[6]

Foucault therefore emphasised the need to contextualise these encounters and the conditions which allowed certain individuals to speak, viewing experience as something which was selected, carved out and maintained, which then could be analysed and used in historical research. As Rocha acknowledged, this interpretation should force historians to consider ‘for what reason, under what circumstances, to what ends are these materials from the past generated?’.[7] This question helped me to approach Edith’s letters in two key ways. Firstly, because it demonstrated the need to pay attention to the context of the production of these fragments, and not just their content. Secondly, and perhaps more importantly, in asking how these fragments were produced, shaped and used in the past, it also became necessary to ask these questions of myself in the present; specifically, in relation to the ways in which we, as historians, conceptualise, interpret, analyse and use experience in our own work. When trying to think through how to approach Edith’s letters, directing my focus away from their written content, and instead asking why they existed at all and what they did and continue to do in various encounters, felt like a useful analytical premise upon which to proceed.

When I first encountered these letters, I was visiting the Special Collections archive at the University of Sheffield intending to compile an inventory of Arthur Hall’s records, which were given to the University upon his death in 1951.[8] The contents of these boxes were not indexed, and therefore within my encounter, the letters from Edith were an unexpected find. Nonetheless, although their existence was a surprise to me, making this tangible evidence of experience seem enticing and mysterious, when I later reflected on this it became clear that my response was time and context specific. To put it plainly, although these letters appeared unique to me, it seems they were not to Hall. References in his clinical case notes indicate the existence of other letters from patients or their families regarding their condition or requesting help, although these were not preserved in his manuscripts. Edith’s letters were therefore available to me not simply because of her decision to write to Hall in the 1930s, but also because of one made by Hall prior to his death, to keep these letters and not those written by his other patients or their loved ones, and to archive and maintain his manuscripts. Whilst on this basis it is tempting to infer value, and to suggest that their preservation indicates a broader medical, psychological or neurological usage in the 1930s, the most that I can responsibly say is that, in this particular encounter, the presence of Edith’s letters in the archive reflects the outcome of an administrative decision and a bureaucratic process. Despite sending their letters to Hall, other patients and their families could not speak to me, indicating two points of exclusion warranting contextual analysis; one which would consider the circumstances of the encounter between Edith and Hall in the 1930s, but also, another which focused on the point at which these sources were kept, archived and thus preserved.

There is another moment worth considering here, centring on my encounter with the content of Edith’s letters. The emotional experience of encountering distressing material in the archive is currently receiving attention amongst some historians, who are pushing back against the ideals of objective or dispassionate histories which distance the subjective historian from their analysis and interpretations.[9] These emotional responses are unavoidable in the praxis of historical research, and therefore, positioning oneself helps to acknowledge the processes of exclusion which produce and sustain certain fragments of experience. In November 1932, Edith was suffering from debilitating and recurrent eye attacks where she developed a pain behind her eyes which then turned upwards, leaving her unable to bring them down for hours at a time. Over the course of the next eleven months, she wrote twenty-five separate letters to Hall detailing these attacks, and indicated that they were increasingly accompanied by a stream of ‘harassing words’ in her mind. In one, she asked Hall: ‘Is there no cure for either brain nor pain?’ Reading her letters for the first time, taking in her handwriting, spelling mistakes and meticulous recording of the time and date of her attacks, Edith’s words struck a chord with me. Sitting the archives, in silence except for the click of the microfilm reader, I felt close to Edith. I felt her presence, but also, I felt sadness, futility, pain on her behalf.

Many academic disciplines adopt a ‘worldview’ which relegates such subjectivity to the status of ‘dirty secret’.[10] But my personal and emotional encounter with these letters was powerful; it shaped my response and blurred the lines between identities which I am expected to keep separate when researching, analysing and writing. In this encounter, I was sitting in the archives, accessing and reading Edith’s letters as a historian, but feeling her words as a sister, friend and daughter. Far from understanding this as a personal detour on the road to objective or rational analysis, it is important to acknowledge this response, to ask what it was doing and how it influenced my understanding of this fragment of experience. By doing so, it is possible to pinpoint another moment of exclusion, and to begin to identify and appreciate our potential blank spots. This is not to get rid of or to escape them, but instead to position, historicize and contextualise ourselves and our responses, to assist us in writing histories that recognise the fluidity and immateriality of the temporal distinction between the past and the present, upon which we structure our research.

Sara Ahmed succinctly illustrates why this is important: ‘Introducing ourselves matters; naming yourself, saying who you are, making clear your values, cares, concerns and commitments, matters. Each time you write or you speak you are putting yourself into a world that is shared.’[11] We shouldn’t do this out of a misguided desire to make our research more valuable or more authentic, but to allow us to begin to identify, flesh out and appreciate our emotional responses, their integral role in the work we do and produce, and the ways we identify, shape and write about experience. In acknowledging our emotions, we can question and analyse what they do in these encounters, recognising that we also have an important place and role in the genealogies of these fragments of experience. To return to Ahmed, in her analysis of the use and meaning of ‘diversity’ in institutional life, she traces the ‘documents that give diversity a physical and institutional form’, thereby ‘following the actors who use these forms.’[12] As historians, we can usefully think about our work in these terms, in considering how we follow, use and produce documents which give form to experience. But if we accept this, we equally have to acknowledge our role as actors. We have to accept that in writing about experience in the past, we are shaping it, as well as writing about ourselves, our encounters, and our experience in the present. We cannot put ourselves back into our histories, we can only try to expose our presence and our role, alongside those we study, in developing, defining and thus conceptualising experience.

While this post has navigated through various encounters, it has also referenced points of exclusion. Such moments play out in various contextual circumstances. For Edith, they enabled her letters to appear in the historical record and for her experience to be shaped and used in research like my own, excluding and therefore existing at the expense of others. By extolling this fragment, we risk perpetuating such omissions. I have drawn out the close relationship of these encounters with apparently mundane administrative, bureaucratic practices, as well as personal, emotional responses, and hope to have offered a framework which reveals the value of analysing the range of moments of exclusion which relate to the historical category of experience, and which play out across divides between the past and the present. This methodological stance facilitates a contextual understanding of ‘experience’, specifically, the multiple moments of exclusion associated with and underpinning this category. By adopting this approach, we can begin to grasp how and why forms of experience might become bound up with racist, classist or ableist inequalities, but also, to position ourselves and take responsibility for this in our own historical analyses.

[1] For discussions of both acute and chronic symptoms, see Arthur Hall, ‘Epidemic Encephalitis’, British Medical Journal, October 1918, pp. 461-462; Arthur Hall, ‘The Schorstein Memorial Lecture on Chronic Epidemic Encephalitis with especial reference to ocular attacks’, British Medical Journal, November 1931, pp. 833-837; F.C. Shrubsall, ‘The After-History of some cases of Epidemic Encephalitis, with especial reference to changes in conduct’, Journal of Neurology and Psychopathology, November 1923, pp. 236-241

[2] A.C. Parsons, Reports on Public Health and Medical Subjects, No 49: Report of an Inquiry into the After-Histories of Persons attacked by Encephalitis Lethargica, (1928), iv

[3] The Patient’s Turn in the history of medicine is largely attributed to the work of Roy Porter, see Porter, ‘The Patient’s View: doing medical history from below’, Theory and Society, March 1985, pp.175-183

[4] Joan Scott, ‘The Evidence of Experience’, Critical Inquiry, Summer 1991, pp.773-797

[5] Leon Antonio Rocha, ‘’That Dazzling, Momentary Wake” of the lettre de cachet: the problem of experience in Foucault’s Practice of History’, in Robbie Duschinsky and Leon Antonio Rocha (eds), Foucault, the Family and Politics, (2012), p.207

[6] Ibid., p.207

[7] Ibid., p.211

[8] Special Collections Archive, University of Sheffield: MS 82, Hall Manuscripts, 1883-1951

[9] My own thoughts on this were stimulated by a blog published by Beatriz Pichel on ‘Crying in the Archives’. Tracey Loughran and Dawn Mannay have also published an edited collection which has helped me begin to work through these issues. See https://beatrizpichel.wordpress.com/2019/09/12/crying-in-the-archives/, Tracey Loughran and Dawn Mannay, (eds), Emotion and the Researcher: Sites, Subjectivities, and Relationships, (2018)

[10] Tracey Loughran and Dawn Mannay, ‘Introduction: Why Emotion Matters’, in Loughran and Mannay, (eds), Emotion and the Researcher, p.3

[11] Sara Ahmed, ‘Introduction’, in Audre Lorde, Your Silence Will Not Protect You, (2017), v

[12] Sara Ahmed, On Being Included: Racism and Diversity in Institutional Life, (2012), p.12

Kate McAllister is a Wellcome Trust funded second year PhD student in History at the University of Sheffield. Her doctoral project traces and contextualises the emergence, fragmentation and disappearance of Epidemic Encephalitis (Lethargica) in British medicine and psychiatry, across the period 1918 to 1959.


She is on Twitter @KateMcAlly

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