Over the last couple of weeks, a few people have mentioned the film ‘the fundamentals of caring’ to us. So we decided to give it a go last night. Whilst Duchenne is not something to joke about, this film is a light comedy. It’s about the newly formed relationship between a young man with Duchenne and his Carer. They embark on a road trip and together face some fears and new experiences. It’s truly heartwarming and filled with hilarious jokes. I won’t mention what Trevor asks the ‘Wish Foundation’ to grant him!
Trevor, the main character with Duchenne, is of course physically disabled but has a witty, sharp mind. Trevor enjoys playing practical jokes related to his condition. His mock choking fit really convinced his Carer he was about to die. Jokes aside, this is the reality of Duchenne. Once a Duchenne boy reaches adulthood, death really is imminent and can happen suddenly at anytime.
Trevor’s jokes seemed to be a way of him asserting control over his condition. It allowed him to have a more relaxed attitude to Duchenne. Whilst it is only a film, it did give me a feeling of hope towards the future. If Hugo can tackle his condition with a ‘can do’ attitude, then there is nothing stopping him from doing what he wants to do.
I am finding the term ‘disabled’ difficult to accept at the moment. Not because I am in denial of Hugo’s condition, but because he will never be ‘disabled’ to me. He will inevitably be confined to a wheelchair at some point but in this day and age, does that really ‘disable’ someone? Luckily, Duchenne doesn’t affect the brain. Yes there are learning difficulties associated with the condition, but Hugo will always be able to communicate with us. He will always be able to tell us exactly what he wants. With that in mind, I will now be seeing Duchenne as a ‘physical difficulty’, not a disability. It is my job to ensure his condition does not disable him and I will do whatever it takes to allow him to have the exact same opportunities as his brothers and friends. Everyone must watch this film!