Abstract
Moustached, waist-coated, hooked upright by his chin and armpits to a contraption of metal, pulleys, canvas straps and leather, the man – perhaps aged 30 in the 1889 photograph and under treatment for locomotor ataxia – stares, unblinking from the cover; a challenge, then, to produce a book as evocative of the neurological patient. Yet, based on a 2008 workshop, Jacyna and Casper have created a collection alive with provocative ideas, sources and intersections for the history of medicine and modern culture, and have broken fresh ground in amassing disparate work on so mercurial a subject. The papers (eight chapters and two afterwords, paired into five sections) each convey, to paraphrase the introduction, the tensions between the neurological patient as a collective ‘totem’ of modernity, and as an ‘archetype’ and inheritor of any given label.
Casper’s opening chapter presents the British neurologist as semiotician, utilizing diagnostic hardware (including the patient’s body) to read signs of neurological distress. The medical textbook is read for past ways of learning and being with a patient during examination, a source and moment often overlooked. Ellen Dwyer’s paper provides a fascinating overview of charitably-funded experiments involving ‘indigent epileptics’ at the US Northwestern University in the 1930s. Dwyer prompts significant questions about how historians read the language and conventions of laboratory science, and will contribute to wider histories of medical ethics.
Marjorie Perlman Lorch’s valuable chapter examines British public medico-legal discourses surrounding ‘the aphasic’, which redefined traditional concepts of mental competence rooted in language and speech capacity throughout the 1860s–90s. Aside from highlighting the different arenas in which medical definitions are wrought, Lorch considers how medical knowledge develops civil rights. Katrina Gatley’s chapter is a rare examination of domestic care and caregiving, using the experiences of Gwen Raverat (artist and Darwin’s granddaughter) in tending to the multiple sclerosis of her painter husband, Jacques. Gatley’s study of Gwen’s correspondence clarifies the role of personal preference or social class in assessing medical opinion in England, and the psychological influence of a medical condition on those within the patient’s intimate orbit.
The ripple effect of neurological diagnosis, as well as the impact on selfhood, is palpable in the Alzheimer’s autobiographies employed in Jesse F. Ballenger’s US-based paper. Ballenger argues that the post-1970 public path cleared by Alzheimer’s patients, and linked to the disability rights movement, fractured century-old gendered senility stereotypes and promoted wider action. Howard I. Kushner’s US-centred consideration of Tourette’s – albeit including support-group activities – conforms less to the ‘Patient Groups Construct’ pairing. While the chapter reveals how doctor and patient together create a neurological condition, the cursing Tourette’s patient is depicted as the junior, even abused, partner.
Through the letters of psychasthenic poet and World War I survivor Robert Nichols to neurologist Henry Head, Jacyna’s chapter elegantly demonstrates British doctor-patient collaboration in rebuilding the self. Embracing functional and organic neurology, Nichols became patient, convert, researcher, and even therapist and referring ‘physician’. Patients’ reflections on selfhood are also considered in Paul Foley’s chapter on encephalitis lethargica. The weaving together of European doctors’ and sufferers’ ideas produces one of the strongest accounts of what it was actually like to be a neurological patient under active medical treatment. Moreover, Foley emphasizes the value of ‘viewing the brain as an integrated whole’ and not splintered between ‘psychic and neurologic systems’ (p. 207).
A key strength of the collection is that it not only whets the reader’s appetite for more, but also has begun to reintroduce and expand first-hand narratives of illness, and of conditions and patients that are often overlooked or misunderstood – or, as Roger Cooter suggests, a product of shifting historiographies. ‘The patient’ is thus perpetually reincarnated to the point of potentially becoming merely a ‘material neurological reduction’ (p. 219). Max Stadler continues reflecting on such problematic encounters. Like the neurologist, the historian is an organizer and magpie, but, Stadler infers, they are also hamstrung by their sources and current archive and data-protection practices. Even so, Jacyna and Casper’s volume emphatically demonstrates to clinicians and historians at every career stage the rich array of sources and stories that can reveal: different ways of communicating with patients; what specialization can do to effective practice; what disease concepts mean medically, socially, culturally and politically; what it was and is to be a patient or to be disabled at different times and places; and even what it means to be an individual human being.
Twenty-five years after Roy Porter’s clarion call for the patient’s view, the patient is still – to use the editors’ phrase, reflective of Cooter’s afterword – ‘the hole in the middle of the donut’ (p. 12): often reconstituted from descriptions of observers rather than by the patients themselves. The successful rooting of the neurological patient as both distinctive from and representative of all medical patients’ experience and construction – this, the volume’s pivot and organizing principle – could possibly have been enhanced yet further. A firmer anchoring of time and place might have distinguished the nineteenth and twentieth centuries and the (mainly) British and North American milieus covered. It could also have enriched discussions about psychiatry and neurology and acknowledged that, at least for the first part of the period covered, most neurological patients were not cared for by specialists at neurological hospitals, but in asylums or other general institutions, or, as Gatley suggests (p. 81), at home. Contributors ‘were given no explicit instructions’ (p. 12) on focus or length. The collection is therefore best read as an eclectic gathering. The imaginative division into five sections – under the headings ‘medicine’, ‘public and private’, ‘patient groups’, ‘the patient’, and ‘historians’ – at times hampers conversations between papers. This, however, is a unique volume: it is rich in ideas, of interest to clinicians, and a keystone for the wider historiography.