I am visiting with my aunt, uncle and cousin in Massachusetts, and last night, after much deliberation, we decided to watch the film "The Diving Bell and the Butterfly". It is a beautiful and moving film, based on a true story (more about that later) about a well-known French journalist who, at 42 years of age, has a massive stroke and is left completely paralyzed, experiencing a rare condition called Locked-In Syndrome. The only part of his body over which he has any control is his left eye, and in the film we see the world as he must see it, through a very small frame.
Eventually, a speech therapist helps him to learn to communicate through eye blinks, and he writes about his experiences. Sadly, shortly after his book is published, he dies of an infection.
The reason I'm blogging about this is that I think it's an excellent teaching tool for those of us who support individuals who are unable to speak and/or who require physical assistance in all aspects of their lives. First, it reminds us that we are all one moment away from severe disability. Second, it invites us to be mindful of our interactions with people who we presume to be lacking in intellect because of their inability to communicate in conventional ways. Third, we are reminded of the power of the human mind.
The film does not present an entirely accurate portrayal of the relational facts- as in, some of the people who are shown as being part of his life in the film were not involved in the way they were depicted. However, for the purposes I'm suggesting- paying attention to his experiences and how people interact with him once he is disabled- I don't think the factual inaccuracies interfere.
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