Jean-Dominique Bauby, or Jean-Do to his friends, suffers a stroke in his 40s that leaves him in a coma for a few weeks. When he awakes, he is in a state of paralysis in which he is unable to speak or move. Jean-Do is diagnosed with locked-in syndrome, a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. Although he cannot move, he is still conscious and can think and reason. The movie focuses his ability to put his thoughts to paper through solely blinking his left eye.
We, as audience members, “see” the world through his left eye, replicated with the camera lens. We hear his train of thought while the other characters in the movie cannot. Jean-Do displays a sarcastic humor as he struggles to adapt to his condition and inability to communicate verbally with those around him. His humor in demonstrated in an early scene in which he is told that his former colleagues think he is a vegetable, to which he replies, “What kind? A carrot? A leek?” To help with his communication, a speech therapist, Henriette, develops a new alphabet where she recites the alphabet as Jean-Do blinks when Henriette says the letter that he wants. Eventually, he and the hospital employees become accustomed to this form of communication and as a result, Jean-Do voices his desire to write and publish a book.
Claude is the ghostwriter who visits Jean-Do everyday to write the book. As they are writing, Jean-Do is able to envision being at any location and being any person. From his hospital bed, for example, he is able to create a world where he is eating with Claude at the famous Le Duc in Paris, eating oysters and drinking white wine. The director seeks to show the audience Jean-Do’s bright mind and imagination in his paralyzed state. The meaning of the title, The Diving Bell and the Butterfly, is explained as the disconnect between his body and his mind. Jean-Do feels that due to his locked-in syndrome, his body is in a diving bell, a rigid chamber used to transport divers to the depth in the ocean. When the diving bell is too oppressive, he transforms into a butterfly with which his imagination is allowed to fly or take him anywhere. When we are shown the first person narrative of Jean-Do, we begin to understand his thoughts. We are crying, laughing and contemplating the world through his eyes. When the audience is shown the third person viewpoint, Jean-Do’s imagination is not apparent. From the outside, we see Jean is physically unable to move, and therefore also see his acquired disability. According to the International Encyclopedia of Rehabilitation, individuals with locked-in syndrome have the “highest level of disability among stroke survivors”.  This shift in viewpoints could be an attempt to shape the way the audience views his disability. At the beginning of the movie, we pity his condition but then rethink why we do so. Bauby initially pities himself, but then decides that this is a waste of time and energy, and this becomes our mindset as well.
Do we redefine what we mean by disability when we see someone who is able to transfer his thoughts to paper, although he is not able to communicate in a traditional manner with others? Do we judge someone else’s success or contribution to society based on our threshold of a physical, moving body? These are all questions the movie sheds light on.
In my opinion, the movie centers on feeling trapped, or in this case having a disability, and how this depends on perspective. Hostage, escape, and entrapment are all themes throughout the movie. Jean-Do could be seen as a “vegetable” to society, but his ability and commitment to write a book tells us otherwise. This film, in some ways, works to change the perception of people with apparent disabilities by highlighting Jean-Do’s imagination and relationships rather than his disabilities. With the focus on Jean-Do’s everyday life, we imagine how his condition fits in context with health. Can someone be healthy and have locked-in syndrome? Does Jean-Do see himself as healthy? For both of these questions, I would answer yes. In the film, we see the world from his perspective, so we are treated to his sarcastic and playful personality. He has highs and lows and we can relate to these emotions. As we see ourselves as healthy, living beings we can connect with Jean-Do through his feelings towards his disability and through his personality. Personally, I was able to expand my definition of a healthy life, as the director sought to focus on Jean-Do’s times of happiness and struggle rather than solely his disability. I would highly recommend The Diving Bell and the Butterfly to those looking to further their understanding of disability and an appreciation for the cinematographic elements in how Jean-Do’s story is told.
1. Beaudoin N, De Serres L. 2010. Locked-in Syndrome. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/303