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A History of the Locked-In-Syndrome: Ethics in the Making of Neurological Consciousness, 1880-Present

  • Stephen T. Casper
Original Paper


Extensive scholarship has described the historical and ethical imperatives shaping the emergence of the brain death criteria in the 1960s and 1970s. This essay explores the longer intellectual history that shaped theories of neurological consciousness from the late-nineteenth century to that period, and argues that a significant transformation occurred in the elaboration of those theories in the 1960s and after, the period when various disturbances of consciousness were discovered or thoroughly elaborated. Numerous historical conditions can be identified and attributed to the production of the new theories that emerged from that period-on, not least in the broader social and cultural transformations that occurred with decolonialization, pro-democracy movements, and civil and disability rights advocacy, all contexts which exerted pressures on the institutions and professions of medicine. In this telling, the discovery of the locked-in patient is thus the exploration of a transformed vision of medical patients – one that moved them from a liminal indefinite space into a firmly grounded epistemological existence – in a backdrop in which medical professionals in particular and society in general was beginning to see the body differently. With this new vision, came a relational theory of consciousness to, a reading of a body and it signs, that shifted consciousness from an internally-derived state into a relationally-constructed object. The ontology of consciousness, whatever it was, thereby became entangled with the social condition of consciousness, one that bridged the worlds of close relationship with the social movements and anxieties about personhood that emanated out of that fraught period.


Disturbances of consciousness Ethics and medicine History of neurology History of neuroscience History of patients Minimal conscious states 



Several groups have contributed to the creation of this paper. Fernando Vidal in particular stimulated its creation through his generous invitation to the ICREA Workshop “Personhood and the Locked-In Syndrome” at the Autonomous University of Barcelona. Equally several scholars at the Richardson Seminar in the History of Psychiatry at Weil-Cornell Medical School offered generous critical observations, including Joseph J. Fins and Nicholas Schiff. Finally, scholars at the Institute for the History of Medicine at Johns Hopkins University read a complete draft of the paper and offered extensive feedback. To all, I express my appreciation.

Compliance with Ethical Standards

Stephen T Casper is currently serving as an expert witness in class action litigation. He receives book royalties from Manchester University Press and the University of Rochester Press. He has been an invited speaker at professional meetings of clinicians and historians.

Conflicts of Interest

Stephen T Casper is currently serving as an expert witness in concussion litigation.


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© Springer Nature B.V. 2018

Authors and Affiliations

  1. 1.Clarkson Honors ProgramClarkson UniversityPotsdamUSA

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