It’s half four in the morning and I can’t sleep. Two terms nearly over in second year and the course is making demands I hadn’t considered at the start. It has been the strangest day. A lot of our lectures recently have been on various speech disorders, dysarthria, dyspraxia, and this week, cerebral palsy. And the emphasis is on challenging ideas about disability, what in our society creates barriers so that people with disabilities can’t participate fully in life. We were watching some teaching dvds on very young children with cerebral palsy yesterday morning which were hard to watch. And then today the lectures were on AAC systems, augmentative and alternative communications systems.
And I can’t shake some nasty little thoughts. How fragile human beings are. How easily hurt. And how can I believe in human purpose and the indescribable value of each individual person when our afflictions seem so random, inexplicable and at times, so terrible? And how is that huge companies spend billions developing smaller and smaller mobile phones and games consoles and our tv screens get bigger and our i-pods can store thousands of songs that we don’t really listen to and all of this stuff gets cheaper and cheaper and more disposable, but an AAC system, which can make a huge difference to the quality of life of someone who has no speech and may spend most of their time in a wheelchair, costs twenty grand and is heavy and cumbersome and ten times bigger than a mobile phone? Not all talk is cheap.
So given that this was the way I was thinking today, it probably wasn’t the best night to go and see “The Diving Bell and the Butterfly”. There is one point where the speech therapist becomes furious with Bauby. She asks him what he wants and he replies “death”. She berates him but I found myself thinking, “who could blame him?”. But there was another moment where someone tells Bauby to cling to what is human within him. What makes us human? All the anatomy and neuropsychology lectures are confusing me. Are we simply wired a certain way, left hemisphere, right hemisphere, corpus callosum? Evolved creatures, vunerable to the slightest electrical fault? That is true in one sense, but I am choosing to believe there is also something else within us and outside us. I don’t know what that is but the alternative is too bleak to contemplate. “Believing in spite of the evidence and watching the evidence change”.
This is not the happiest or lightest of posts. But important to think about.