This volume addresses what has become in recent years an important subject in the history of medicine: the patient. A quarter of a century after Roy Porter’s plea for a medical ‘history from below’ focusing on patients, the editors tackle this ‘curiously underwritten’ (p. 6) history. The value of this volume for illuminating this topic is in part due to the fact that it takes as its subject the neurological patient. In their introduction, which offers a nuanced discussion of the scholarship on the patient in medical history and will be useful in graduate and advanced undergraduate courses on the history of medicine, Casper and Jacyna suggest that the neurological patient is not only ‘highly representative of all medical patients’ (p. 10), but also seems to magnify certain central aspects of patienthood. But while ‘neurological’, the emphasis is clearly on ‘patient’; the volume is marked by the absence of brain talk which, as Max Stadler notes in his intelligent commentary, opens up the space to think about patients and the medical encounter in all their historical richness, to emphasise ‘bodily expression and performance… of the theatrical and ritualistic in the lives of the neurological patient’ (p. 228).
Any work dealing with the ‘patient’ has to address questions of epistemology, and Roger Cooter, in his illuminating essay, argues that the concept of the patient has not yet been sufficiently problematised. Porter himself deployed the ‘patient’ as a self-evident and natural category, ironically at a time when it was undergoing a transformation; further, doctors and historians (those assembled in the volume included) remain caught in ideology, their histories embedded in broader narratives and frameworks, which determine their accounts of the patient. Cooter’s remarks are important and to the point. Yet he gives perhaps too much credence to the solidity and all-encompassing nature of these ideologies. For it is the great merit of this volume that it shows how different concepts of the patient, what we could call different forms of ‘patienthood’, molded in various ways the relationships between doctor, patient and historian. The concept of the patient is not necessarily an ideological screen that eclipses the patient, but rather what offers and shapes our access to them.
The concept of patienthood that is most effective at silencing the patient is the one portrayed in Ellen Dwyers’ essay on epilepsy research in 1920/30s America: the patients Dwyers presents are rendered passive in at times invasive epilepsy experiments. These patients never disrupt or burst through to the medical discourse about them. Howard Kushner’s essay, written in a comparably activist tone to Dwyer, makes a similar point about the limits to the physician’s empathy and therapeutic possibilities. But through the vivid portrayals of historical and present patients with Tourette’s syndrome, Kushner aims to bypass the doctor’s often dismissive attitude and open up the possibility of hearing the patient’s voice. In contrast to Dwyer and Kushner, Stephen Casper shows how certain concepts of patienthood allowed, even required, the patient to speak. In his reconstruction of the neurological exam, creatively using the neglected medical literature of the textbook, Casper shows how it led the doctor to listen closely to the patient’s narrative and observe rigorously the patient’s body, in order to account for the illness.
Katrina Gatley’s and Paul Foley’s chapters demonstrate the value of neurological disease for understanding particular constructions of the patient. For Gatley, neurological patienthood becomes enabling through the way in which it allowed a patient with disseminated sclerosis in late nineteenth century Cambridge to recruit his spouse as a neurological caregiver and advocate. The disease provided explanations and excuses for behaviour that was otherwise not intelligible. Similarly, Paul Foley, in his historical study of the encephalitis lethargica (EL) patient, shows how the coexistence of neurological and psychiatric symptoms in the condition raised the status of the patients. EL patients were considered an opportunity to study human psychology and its impairments because their introspective reports were valued more highly than those by psychiatric patients.
The remaining essays show how despite and sometimes because of their patienthood, patients were able to find spaces for self-expression. The new disease entity of aphasia in Marjorie Perlman Lorch’s study, at least in principle, gave agency to the patients by introducing the distinction between mental soundness and speech disorder, a distinction that contributed to debates about testamentary capacity to the patients’ benefit. Similarly, we witness how neurological disease facilitated the construction of self-image in Stephen Jacyna’s perceptive essay. The ‘psychasthenic’ English poet Robert Nichols was able to use his patienthood to develop a knowledge of psychology and rehearse a vocabulary of inwardness that had a marked influence on his self-understanding. Jacyna shows how a particular neurological disorder provided resources for Nichols to construct a concept of the patient as an aesthetic subject. Far from being determined by patienthood here we see how patient experience could help constitute it.
A similar reconstruction of patienthood can be seen in Jesse Ballenger’s contribution. Discussing the politics of Alzheimer’s Disease, Ballenger’s patients emerge perhaps as the most unstable and unpredictable in the volume. His patients take up public roles, speaking up for themselves and other patients with the condition as authors of autobiographies or in advocacy roles. As Ballenger beautifully shows, these patients found ways to assert their compromised rationality in a culture that remained wedded to narrow concepts of reason.
The variety of patient concepts on offer in this volume, the different ways in which they function both for mediating the relationship between doctor and patient and for shaping the patient’s profile in the world, marks it as a particularly important contribution to the field; it is a must-read for any scholar interested in the history of medicine, the mind sciences and subjectivity.
