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

Abstract

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.