Artist to have an epileptic fit live on stage

Sufferers' charities express concern over deliberately voyeuristic project that has received an Arts Council grant

Jonathan Brown
Friday 20 November 2009 01:00

A performance artist who suffers from epilepsy was facing growing criticism last night over her "dangerous" plans to induce a seizure in front of an audience live on stage.

Rita Marcalo, who was born in Portugal, has been affected by the potentially fatal condition for 20 years but has stopped taking her medication and plans to bring on a fit as part of an Arts Council-backed project exploring the relationship between epilepsy and dance.

The audience at the Bradford Playhouse next month will be invited to film her convulsions, which she intends to bring on by a variety of methods including alcohol and staring at strobe lights. She said she will also deploy techniques common in animal testing.

But the piece, entitled Involuntary Dances, has been condemned by the charity Epilepsy Action which called for the performance to carry a health warning because it is feared others could be hurt if they were inspired to copy. Yesterday Marcalo, 37, defended the project, for which she received a £13,889 grant from the Arts Council England and a £7,000 commission, saying she wanted to educate people about epilepsy because sufferers normally fitted in private.

The award-winning choreographer, who is artistic director of her own company, Instant Dissidence, based in Leeds, said: "As someone with epilepsy the threat of seizure is something I deal with every day of my life. It is an invisible disability but most of us know someone with it. My intention is to raise awareness of the condition by making it visible. People will have their own opinion but I am doing this from an artistic perspective."

She denied what she was doing was dangerous and said: "I am interested in creating work that makes people consider certain things they don't normally think about. It raises questions. I knew it could be controversial but I am doing this because it is personal to me."

The audience at the 24-hour event which includes other artists and a DJ, will be alerted to her seizure by the sound of an alarm which will trigger the music to stop and two cameras to roll. She said she was shocked to see "voyeuristic" footage of people having fits downloaded on to the internet, recorded without the sufferers' consent. "I am inviting the audience to be voyeuristic of me," she said.

Organisers said a first aid team would be on hand for the duration of the event.

But Philip Lee, chief executive of Epilepsy Action, said he was deeply concerned. "This is potentially very dangerous and something we would strongly urge this person not to do. Seizures can bring with them the risk of injury from jerking or falling and, in the worst cases, death," he said.

Epilepsy is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the message-passing between brain cells. Some 456,000 people in Britain suffer from the condition, though of those 70 per cent are free of seizures with the appropriate medication.

Describing what it felt like to experience a fit, the artist, who has been living in Britain for 15 years and is currently performing in Lithuania, said: "It begins by feeling like an aura which is very disorientating. It feels like all the senses you take for granted are changed – your visual perception, how your body feels, your skin, your intestines – everything is altered. It feels very painful and disturbing. That is the most difficult part. When I am unconscious I feel nothing and afterwards you just feel very tired."

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