The Neurological Patient in History

From the advent of the new social history, the patient has received extensive attention from historians of medicine. Encouraged by Roy Porter’s cries for a medical ‘history from below’, scholars have produced numerous accounts that detail encounters between practitioners and patients in a variety of different settings and periods.(1) The historiography, however, has overlooked several types of patients, including those seeking assistance and treatment from neurologists. As a doctoral student with interests in modern psychiatry and neurology, I expected to be bombarded with accounts of the neurological patient in history but I was left wanting. Indeed, the history of neurology has yet to receive extensive scholarship with only a few publications detailing the development of the profession, links with other disciplines, and intellectual biographies of the ‘great men’.  Consequently L. Stephen Jacyna’s and Stephen T. Casper’s edited volume, The Neurological Patient in History, can be considered to be an important contribution to the histories of neurology, the patient, and modern medicine, as it gives due attention to a neglected medical profession and its patients.

Jacyna, Director of the UCL Centre for the History of Medicine, and Casper, an assistant professor at Clarkson University, make the purpose of their volume clear: to assess broader questions about the patient in history, and argue that despite extensive scholarship, the patient has been poorly examined, as historians have employed an ‘essentialist; and ‘ahistorical view’. They believe that theoretically informed accounts and attempts at postmodern analysis are few in number and often ignored (p. 6). I would argue, however, that although most works on the patient are not guided by these principles, they have had an enduring impact and a broad readership. Former accounts of the patient were influenced by social history, which remains the dominant historiographical approach. If all accounts were theoretically informed or postmodern in nature, they would likely alienate readers and be very unlikely to achieve the same level of acceptance, on account of their sheer complexity. Jacyna and Casper attempt to justify this bold contention by arguing that questions regarding how the patient has been constituted in the era of modern medicine have largely been ignored – a fair criticism, but I maintain that their critique of the current historiography is too harsh. The essays in this volume cover a wide range of neurological patients and illnesses, with a focus on Western medicine in the modern period. Contributors are drawn from the history of science and medicine, medical science, and linguistics; demonstrating that the history of the neurological patient is not merely the concern of the medical historian. The volume is organised into neat couplets and consists of five separate sections that examine how the neurological patient has been constructed in different settings.

Part one examines how medicine constructed the neurological patient, with contrasting contributions by Stephen Casper and Ellen Dwyer. Casper’s chapter focuses on the history of the British neurological examination from the early modern period to the 1940s, with great emphasis placed on the ‘internal logic’ of the examination and the ways by which practitioners transmitted and interpreted the examination between one generation and another. The strength of this chapter, I believe, lies in his inclusion of how the patient experienced and participated in the examination. Casper argues that during the 19th century, the patient’s narrative was incorporated into the neurological examination and an understanding of the patient’s individuality was considered as important as postmodern pathology (p. 26). This poses a challenge to the traditional belief that the patient was a passive set of quantifiable symptoms and raw material upon which the practitioner could exercise his power, as argued by scholars such as Nicholas Jewson and Michel Foucault.(2) This is a strong chapter, but I do believe that a brief discussion regarding how a sick person became a neurological patient and sought examination in the first instance would have been a beneficial addition. In contrast, Ellen Dwyer emphasises the lack of power and voice that American epileptics had as experimental subjects, with particular reference to the experiments conducted by Northwestern researchers. Her knowledge of the experiments, conducted from the 1920s to the 1950s, is encyclopaedic and her emphasis on the lack of patient autonomy is clear. The purpose of her chapter, however, is to emphasise changing attitudes toward the use of neurological patients in experimental research, and this is not fully achieved. Her article merely assesses the dispassionate, unethical and ambivalent attitudes of the researchers involved, attitudes that prevailed until the 1950s. At this point, they fought against the stereotyping of epileptics but this was included as a mere afterthought (p. 56).

Part two of this volume is concerned with public and private constructions of the neurological patient. Marjorie Perlman Lorch’s chapter gives an example of the public constructions of the neurological patient through a case-study of the medico-legal aspects of aphasia in 19th century Britain. Lorch contends that those living with the condition had their civil identity redefined because of developments in the medical and legal spheres. This was due to the redefinition of aphasia from mere ‘speechlessness’ to a brain illness that affected thought expression, and developments in ideas surrounding the medical term ‘mental defects’ and the legal term ‘unsound mind’ (p. 64). She argues that as soon as aphasia became a medical category, questions were raised regarding whether this was limited to language or was linked to intelligence, memory, and reason, which would then have a bearing on the determination of mental soundness and ability to testify (p. 70). This resulted in considerable debate in medical and legal circles concerning the distinction between speech defects and mental impairment; these discussions were as much about their condition as it was about the need for a refinement of criteria for legal determination of mental capacity. Contrasting this, Katrina Gatley’s chapter focuses on the private sphere and is particularly valuable because it constitutes an attempt to include caregivers and informal care in the historiography – something that has been overlooked due to the all-encompassing nature of the modern welfare state (p. 81). Her chapter examines the private construction of the neurological patient Jacques Raverat by his wife. Gwen Raverat acted as primary caregiver, advocate, and confidante, whilst rarely relying upon professional medical support in the care of her husband. This is a powerful account that clearly shows how the care process can deeply affect the caregiver as well as the patient. The most important matter that these chapters highlight, I believe, is the range of sources that the historian can draw upon in the construction of the neurological patient. Lorch examines a broad range of ‘public’ sources, including medical journals, newspaper articles and court transcripts. In contrast, Gatley examines a collection of ‘private’ sources belonging to Gwen Raverat, which include letters and personal artwork.

The volume then moves to examine how patient groups have constructed the neurological patient, highlighting and contrasting two very different neurological conditions. Jesse F. Ballenger’s chapter concerns the rising public role of people with dementia in the meaning and politics of Alzheimers in modern America. Ballenger argues that the public role of dementia sufferers lent support to the goals of medical research and policy-making through raising public awareness and money for research. Later, however, public speakers also spoke critically about the shortcomings of research and policy, and the stigma attached to dementia.  This chapter highlights how the use of autobiography and the testimony of ‘exemplary disease victims’, such as Rita Hayworth and Ronald Reagan, were employed to assert that this disease was a cruel killer that caused great suffering for its victims and their families, and to clearly distinguish it from senility (pp. 116–17). By doing so, this patient group had made dementia a household word and more visible than ever before. Ballenger clearly shows how this patient group constructed itself as a specific neurological patient but the chapter seems unfinished. It does not assess the impact that the public roles of dementia patients had on subsequent policy-making and research, which would have provided a firm conclusion. In contrast, Howard I. Kushner’s chapter attempts to examine the patient group construction of Tourette syndrome sufferers, but does not manage to do so as effectively as Ballenger. This chapter suffers from a significant balance problem:  the author spends too much time outlining the initial research conducted into the nature and symptomatology of Tourette syndrome before moving to assess the aims and activities of the Tourette Syndrome Association. Kushner’s knowledge of the historical aspects of Tourette syndrome is excellent, but could be better placed in a separate chapter in a different book or a journal article. Furthermore, he does not outline a specific research question, making this chapter very difficult to analyse. If the purpose of this section of the volume was not laid down by the editors, it would be difficult for the reader to understand its relevance or focus.

The fourth part of this volume assesses constructions of the neurological patient by the patients themselves and is, in my opinion, the strongest section. L. Stephen Jacyna’s chapter examines the construction of the neurological patient by poet, dramatist and neurasthenic Robert Nichols in the early 20th century. His use of correspondence between this patient and eminent neurologist Henry Head is both analytical and fascinating. Jacyna clearly shows that Nichols’ construction of himself as a patient was multi-layered: he had a strong emotional relationship with his neurologists, made a real effort to self-analyse his condition, and gained as much information about his neurological complaint as possible, particularly favouring the work of Pierre Janet. Jacyna argues that Nichols can be viewed as representative of the functional cases treated by neurologists in the early 20th century (p. 167). I, however, question this statement as Nichols’ occupational background and correspondence show him to be a very articulate and ‘dramatic’ person with a real talent for words and observation, and he enjoyed a very strong emotional relationship with his neurologist. Perhaps Jacyna could elaborate upon his statement further, as it would be useful to know if other neurological patients enjoyed the same strong relationship and had the same tendency for self-analysis. This is a very strong chapter but it is unfortunate that Head’s responses to Nichols’ letters have gone missing, as it would be interesting to see if Head invested the same amount of time and effort in this relationship and if he approved of Nichols’ self-constructions. Paul Foley’s chapter concerns the condition encephalitis lethargica and particularly, the reports of the condition by patients ‘from within’ during the early 20th century (p. 187). Foley argues that the patients reporting of their condition laid bare the interdependencies of neurological and psychological functions in the brain, which meant that certain psychiatric nosologic entities should be regarded as syndromes (p. 207). This is also a strong chapter, as the patient’s construction of the neurological patient shines throughout.

The final section of this book examines how historians have constructed the neurological patient, with two chapters critiquing the contributions in this volume. Roger Cooter’s article critically assesses scholarship on the patient in ‘historyland’ and argues that ‘it is a shifting product of its historical times. It moves with its historiography’ (p. 215). He draws examples from the chapters of Casper and Ballenger, which are modernist and structuralist, and post-modernist and post-structuralist in nature respectively. Cooter’s main argument is that representations and constructions of the neurological patient by historians are always embedded in the dominant discourse of the historian’s time, which clearly poses a challenge to the editors’ assertion that theoretically informed accounts are important but ignored (p. 6). Essentially, it could be argued that even though the editors have avoided being ‘essentialist’ or ‘ahistorical’, this volume has the same impact as the older accounts because they are reflecting the author’s approach and beliefs, and adding to the same historiography. Max Stadler’s contribution is largely complimentary and states that this volume has made it clear that the historiography requires more complex studies of the neurological patient and makes great advances in this respect (p. 229). Both of these chapters make excellent points and should give the editors and contributors food for thought. More edited volumes should include these critical commentaries. I would be interested to hear how Jacyna and Casper intend to respond to these critiques, particularly the arguments made by Cooter.

Overall, Jacyna and Casper’s edited volume The Neurological Patient in History is a valuable and welcome addition to the historiography. It not only places the neurological patient firmly in the spotlight, it also encourages readers to re-examine the patient using fresh and thought-provoking lines of enquiry. Any criticisms I have made have been levelled at style and structure. The inclusion of chapters by ‘non-historians’ with interests in the neurological patient has largely been successful and is important in the current climate, where funding councils encourage historians to work with scholars from other disciplines. As my first review assignment, this has been an absolute pleasure to read and I firmly believe that this volume will be used as a reference text for years to come and will encourage historians to examine the history of neurology and its patients further. I would encourage historians, students and lay-readers to engage with this volume and I look forward to similar works and, I hope, a follow-up volume in the near future.

Notes

1. Roy Porter, ‘The patient’s view: doing medical history from below’, Theory and Society, 14, (1985), 175–98Back to (1)
2. Nicholas D. Jewson, ‘The disappearance of the sick-man from medical cosmology, 1770–1870’, Sociology, 10, (1976), 225–44; M. Foucault, The Birth of the Clinic (London, 1976).Back to (2)