I am sitting in my office waiting to hear a radio NZ inteview with William Fairbank. I met William six years ago, during a visit to NZ shortly after he made the film “Head On” about brain injury. He had his brain injury about 23 years ago and he is a great advocate for occupational therapy. In the early years after his injury he made a series of sculptures on the stations of the cross, which are on permanent exhibition in Lincoln cathedral, England. He calls this his occupational therapy and he is in the business of using his art to educate medical professionals and the rest of the world about what it is like to live with a brain injury.
His latest project is to make another film about the experience of brain states after brain injury. Historical knowledge about brain injury has in the main been produced and known by people without brain injury. William’s work is part of a movement where brain injured people produce their own ways of knowing in order to negotiate the kind of knowledge that is held about them. This project is about gathering together the experiences of talented people with brain injury and putting them on film.
In the disability movement the brain states after brain injury are one of the myriad expressions of ‘Ouch! moments’. These are the moments when a disabled person feels out of place and is made aware of the discordance between their experience and the rest of the world. For the brain injured it is those moments when you put your car keys in the freezer; when the shop assistant gives you very strange looks; when you have told your best friend you don’t want to see them because you are too tired from thinking about making a simple choice; worse, it is the explosion of frustration when you have gone too far past your afternoon nap. “Ouch! moments” are an exploration of the awkwardness brought about by having a brain that is out of synch with the rest of the world. It is about having senses that are somehow not in tune with the common sense of everyone else. It is about living in a different rhythm. For William Fairbank it is about ‘living in the present’. He describes the sense of being on a stage, or having things arrive to his attention and losing all else for that time.
This living in the present sounds very pleasant, and William has learned ways of making it so -though the reality is not always easy. He has learned to invite you into his presence/present as though you are coming into his living room. It is all comfortable and full of lovely small things that delight. He comes to visit in his “Little Puffer” caravan and brings his whole world with him: there are pictures on the wall and books on the bookshelves; repair kits and a sound system. You only realise how caught he is in the present when you want to change the subject and find that William is still caught in this moment, which is also a self absorbed one. This is one of the “Ouch! moments”, but William succeeds in sharing this brain state and making it fascinating, so that there is no wish to escape. Maybe what he manifests is the same self absorption that is supposed to be so pathological in brain injury, but it is the Ouch!, without the ‘Oh dear!’.
Brain injury can be profoundly alienating. It can lead to experiences that are at the boundaries and the edges of what it is to be human. Yet people like William have learned to map out the secret adventures of living with this brain state so that it reflects the secrets and aspirations of everyone; it reflects both pain and the search for a way of living that can mould an identity that feels worth living with. It is not easy to understand, but it is our humanity and all the potential within it that makes us beautiful. William’s work helps us to celebrate those heartbreaking strengths and those glorious disabilities that we all have.
It will be interesting to see what happens following William’s invitation to artists with brain injury to participate in the film he is making. He hopes to include those who can craft their quirkiness into words, phrases and jokes. There are so many ways of expressing the experience of brain states after brain injury: through photos, poems, paintings, jokes, quirky phrases. If you are someone who has learned to do this….or if you know of someone who has the capacity to share a sense of reality that is mediated by a brain injury (and you live in NZ), don’t hesitate to get in touch. I will use this blog to keep you posted on William’s progress.