A French film, The Diving Bell and The Butterfly (2007), captivated recent audiences at the Irish Film Institute and was retained for a second run.
It’s a biopic about 43-year-old Jean-Dominique Baudy, one-time editor of French Elle, who suffers a massive stroke in his sports car on a country road.
He’s left with what’s called locked-in syndrome, a very rare condition where he’s completely physically paralysed but has perfect mental capabilities.
His only way of communicating is by blinking his left eyelid, with a therapist pointing to a card for him to spell out words, one blink at a time.
Throughout the film, his speech and physical therapists work to help him become as functional as possible to support his dream to write his book.
In a huge effort, he dictates the book to a woman from Elle magazine, and the book is published 10 days before Baudy’s death from pneumonia.
Deafness does not feature in the film, but its key messages are important:
- To see the ability of the person – not the disability – as Baudy’s carers did. They saw his remaining potential and worked to maximise this.
- To sit within a person’s field of vision. Baudy’s vision was limited, so his carers told visitors to place their faces where he could see them.
- To use creative problem-solving. Baudy’s carers improved his quality of life with practical help that set an example for others.
- To use technology when possible. A speaker-phone was ordered for Baudy’s room, but the two servicemen questioned his ability to use it.
- Realising that progress may take time. Baudy and his transcriber had to put in unbelievable effort to write his book but achieved the mission.
- Where possible, to help a disadvantaged person reach their life goal/s as this underpins self-esteem and overall sense of purpose.
- Not to worry about what other people think of teaching methods or occupational therapy: each personal milestone is a great achievement!