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SAIS-TU QUE B[AUBY] EST TRANSFORMÉ en légume?'"1 With this question ringing in his ears (it having been overheard and subsequently reported back to him by a friend), Jean-Dominique Bauby, sometime editor of French fashion magazine Elle, is apprised of the account circulating via the Parisian rumour mill of the calamity that has befallen him. This episode follows a catastrophic stroke that leaves him quadriplegic, yet fully conscious and cognizant, a survivor living with locked-in syndrome. This incident, featuring in both Bauby's written memoir Le scaphandre et le papillon (1997) and the film adaptation made of it a decade after Bauby's death by American artist and film-director Julian Schnabel, is of signal importance for understanding the project that became Le scaphandre et le papillon (both the book and the film).2 The incident encapsulates what is arguably Bauby's most difficult challenge after his stroke: his quest to retain his status as a complete human being in the eyes of the rest of the world, the quest to assert himself in his locked-in state as a thinking, feeling subject, having agency, opinions, and a right to dignity and respect.3 Through an analysis of Schnabel's film Le scaphandre et le papillon, this article will explore how cinema may provide an appropriate medium for autopathography to pursue such a quest.
Whilst Le scaphandre et le papillon has attracted the attention of several scholars, few studies focus on the filmed version of Bauby's story. When they do, they tend to be critical of Schnabel's work.4 Film historian and critic JeanMichel Frodon criticises Schnabel's film for its stylistic academicism and a mawkish treatment of its subject, accusing the film of peddling "le plus navrant trafic de sentimentalité et d'imagerie."5 Considering the film from the standpoint of disability studies, Tess Jewell criticises it as an able-bodied person's representation of a narrative of disability, arguing that the film's manner of representing Jean-Do denies him agency.6 Tarja Laine's discussion of the film concentrates on how it positions spectators, holding that spectatorship operates here in the mode of "entanglement as a mode of 'being with,'" replicating a more general spectatorial dynamic in cinema.7 Laine's notion of an 'entangled' relation between spectator and protagonist seems to suggest a less antagonistic representation of locked-in syndrome than Jewell finds....