Epilepsy as live art in the UK

From The Guardian's Theatre blog in the UK:

Thirty years ago I tried to fundraise for Fall Down and Be Counted, a documentary about living with epilepsy, in which I went without sleep and medication in order to induce a fit for the cameras. This puts me in no position to disapprove of performance artist Rita Marcalo, who plans to induce an epileptic seizure as part of Involuntary Dances, a 24-hour event that presents "epilepsy as performance".

Not that I do disapprove. I think what she's doing is terrific – well-conceived, witty and thought-provoking. I love, for example, the idea that if she has a fit during the night the audience will be woken by a siren, so that they can film it on their mobile phones. Marcalo is drawing attention to the fact that on YouTube (and elsewhere) it's easy to find mobile-phone footage of people having fits – mostly taken without their consent. Curious, isn't it, that controversy should arise when a person with epilepsy consents to being filmed?

Rita Marcalo (pictured) is an artist doing what artists are supposed to do: creating work that is surprising, challenging, transgressive and exciting. The point she is making, and her manner of making it, is unfamiliar; she is breaking all the rules: drinking alcohol and coffee, eating dark chocolate, smoking cigarettes, coming off her medication and going without sleep. Things that we epileptics are not supposed to do.

Unsurprisingly, this has epilepsy charities harrumphing into their collecting cans. The suggestion from Philip Lee, chief executive of Epilepsy Action, that the performance "should carry a health warning advising people that they should not attempt this themselves" had me clutching my sides.

Part of the controversy has been about whether the performance is a good way to raise awareness about epilepsy. For disability charities, raising awareness is pretty much synonymous with raising funds. What Marcalo's piece highlights is that adults with epilepsy own their own bodies and have a right to choose what to do with them. It illustrates that we are able to speak for ourselves, and don't need charitable organisations to step in on our behalf. (It's extraordinary that this is still an issue.)

She is also saying that there are worse things than having an epileptic fit. Several hundreds of thousands of us in this country live with epilepsy in one form or another, and our lives are not blighted. But it is nevertheless a feared condition. The ancient idea of possession by demons still lurks beneath the surface of people's awareness. But those who are most afraid of epilepsy are those who don't have it. I've lived with the condition for half a century, and I've lost count of the number of times I've had to calm some gibbering bystander who was distraught at what they saw. Marcalo's performance will implicitly say: "It's just a fit. Get over it." She speaks for us all.