Movie: The Diving Bell + The Butterfly

I won’t typically be posting movie reviews, but this one is so ‘on topic’ I want to share a bit about my experience seeing this movie.

Brief description: Based on a true story. A French man with a vibrant, exciting life has a massive stroke and becomes completely locked in his body, unable to move except for his left eye. A language specialist works with him to develop a communication system – what we might call an auditory-scanning method, where the partner speaks the options, and the user somehow indicates his choice. In this case, Jean-Do would blink when the therapist spoke the correct letter of the alphabet – he would spell out his thoughts, and in fact, eventually wrote a book using this method.

The point of the movie was to capture his perspective, which it did well. Lots of point-of-view scenes and interesting attempts at dramatizing his fantasies, memories and random thoughts. I was taken with how vividly the movie portrayed his sense of ‘being done to’. He was completely at the mercy of those around him, and suffered big and little frustrations almost continuously.

Of course, I couldn’t help but draw comparisons to my son. Owen is even more vulnerable than Jean-Do as Owen doesn’t hear, and doesn’t have the same language base to understand what is happening. (How horrifying to comprehend the extent of that vulnerability, and yet how life-affirming – Owen is completely unguarded and undefended, which invites protectiveness and loving care in those around him. Owen often brings out the best in people, and he receives it fully.)

Jean-Do was literate. Articulate. Intelligent. Put aside for a minute the unimaginable challenge of losing all voluntary body function – Jean-Do had things relatively easy, from a communication perspective. He only had to learn one thing: how to adapt what he already knew. Brutal reality yes, but not insurmountable. As I contemplate how this relates to Owen, I realize even more how his Deafness limits his potential. And I realize how different it is for one to be born with his disabilities, rather than losing abilities in adulthood.

What made Jean-Do relate-able was capacity for language, memory and perception. And his ability to use one to communicate the others. What about Owen? And others like him? We’ve made great strides in our society in accepting and accommodating both physical and developmental disabilities. People who are non-verbal and with uncertain, unproven intellectual capacities are not so easily assimilated.

Maybe Jean-Do’s story is so compelling because as a society we find him palatable, because he can communicate. (I wonder how many times people have asked if I have seen “My Left Foot”…?) Certainly this movie would not have been made if he couldn’t. So one step further: maybe this drives my desire to give Owen a communication system – to make him more presentable to the world, to be able to say “See? There’s a regular boy in there!”.

I will spend some time wondering to what extent this is supporting or killing Owen’s humanity.


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