Unlocked: A Review of "The Diving Bell and the Butterfly A recent Oscar-nominated film, The Diving Bell and the Butterfly, tells of the ordeal of Jean Dominique Bauby, a Parisian and former editor-in-chief of Elle magazine. Bauby had a severe stroke that left only hearing, cognition, and one eye intact. A speech-language pathologist, one of several therapists working with Bauby, ... Features
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Features  |   May 01, 2008
Unlocked: A Review of "The Diving Bell and the Butterfly
Author Notes
  • Leigh Deussing, associate director of Special Interest Divisions, can be reached at ldeussing@asha.org.
    Leigh Deussing, associate director of Special Interest Divisions, can be reached at ldeussing@asha.org.×
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Speech, Voice & Prosodic Disorders / Hearing & Speech Perception / Special Populations / Cultural & Linguistic Diversity / Healthcare Settings / Professional Issues & Training / ASHA News & Member Stories / Attention, Memory & Executive Functions / Features
Features   |   May 01, 2008
Unlocked: A Review of "The Diving Bell and the Butterfly
The ASHA Leader, May 2008, Vol. 13, 18. doi:10.1044/leader.FTR3.13062008.18
The ASHA Leader, May 2008, Vol. 13, 18. doi:10.1044/leader.FTR3.13062008.18
A recent Oscar-nominated film, The Diving Bell and the Butterfly, tells of the ordeal of Jean Dominique Bauby, a Parisian and former editor-in-chief of Elle magazine. Bauby had a severe stroke that left only hearing, cognition, and one eye intact. A speech-language pathologist, one of several therapists working with Bauby, is portrayed undertaking the arduous task of restoring communication to him. Director Julian Schnabel shoots the first half of the film literally from Bauby’s perspective—through his left eye—and gives viewers a sense of the physical and emotional devastation of his rare condition: locked-in syndrome. French actor Mathieu Amalric plays the character of Bauby in the film, which is based upon Bauby’s autobiography.
Building upon Bauby’s remaining motor output, SLP Sandrine Fichou—played by actor Marie-Josee Croze—unlocks Bauby’s inner world by training him to use a communication system. Without this system, Bauby says, “I would be cut off from the world.”
At first Bauby is inhibited by the tedium of using this new communication system, but after extensive use of it, he critiques the system and those who dare to use it in an intriguing chapter, “The Alphabet,” of his memoir. “I am fond of my alphabet letters,” says Bauby. “The jumbled appearance of my chorus line stems not from chance but from cunning calculation. More than an alphabet, it is a hit parade in which each letter is placed according to the frequency of its use in the French language.”
Not only does Bauby understand the purpose of his alphabet—“to make it easier for those who wish to communicate with me”—but he praises speech-language pathology in his memoir as “an art that deserves to be more widely known.”
In his memoir, Bauby says that twice-daily visits from his SLP, Sandrine, would “send all gloomy thoughts packing. The invisible and eternally imprisoning diving bell seems less oppressive.” With blinks of his single functioning eye, Bauby chooses each letter to form words and sentences for his book, and also uses this system to communicate with attentive hospital staff, close friends, estranged family, and visitors.
Many times, Sandrine would take phone calls from family and friends and hold the phone to Bauby’s ear. “How I would have loved to have responded with something other than silence to these tender calls,” says Bauby. Nonetheless, through his SLP, Bauby was able “to be in touch with loved ones, to intercept and catch passing fragments of life, the way you catch a butterfly.”
Although severely impaired, Bauby dictates—through marathon blinking of his left eye—a gripping poetic memoir. He draws sharp contrasts between scenes of his present condition and memories of his former fast-paced life. As an SLP, I was roused by one scene in particular—when Bauby intently watches a soccer game on television, a hospital staffer switches it off mid-game and leaves the room without seeking Bauby’s preference! The audience at my viewing of the film gasped at this point. Bauby’s internal protest is expressed in the film and, with a note of indignation, in his memoir.
Bauby’s right to communicate was ignored in this situation. The scene reminded me of two important concepts:
  • SLPs play a critical role in advocating for patients through interdisciplinary education

  • A patient’s right to communicate is essential to his or her humanity, and violation of this right dehumanizes a patient

This compelling film reinforces the importance of ASHA’s new vision statement—“Making effective communication, a human right, accessible and achievable for all.”
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FROM THIS ISSUE
May 2008
Volume 13, Issue 6