LONDON (Reuters Life!) - An epilepsy sufferer has courted controversy in Britain by creating a public performance in which she will attempt to bring on a seizure and allow the audience to film it on their mobile phones.
Rita Marcalo, who suffers around two seizures a year even on medication, has stopped taking treatment ahead of next month’s production of “Involuntary Dances,” which she claims is to raise awareness of epilepsy, the Telegraph newspaper reported.
But Marcalo, who directs a dance theater company, is facing criticism for putting herself at risk and for the voyeuristic nature of the 24-hour event which is being funded by a 13,889-pound ($22,910) government arts grant.
People will be invited to film her at Bradford Playhouse in northern England’s West Yorkshire region, where she will use strobe lighting, fasting and raise her body temperature in an attempt to bring about a seizure.
“One of the reasons I am doing this is because epilepsy is an invisible disability,” Marcalo told the newspaper. “As an artist I am very interested in this idea of doing something in my art that is the opposite of what I do in my life. In my own life it is private but in art I make it public.”
She said that anyone could see epileptic seizures on Google or YouTube that have been filmed on mobile phones without the consent of the person having the seizure.
“Part of me doing this is to address the voyeurism. I am saying, I am choosing to let you do this,” she said.
Epilepsy organizations have expressed concern about a patient attempting to bring on a seizure for the entertainment of others.
“I am concerned about the potential danger of a patient stopping their medication to induce a seizure,” Epilepsy Action Chief Executive Philip Lee said.
“It is also concerning that the performance could influence others to do something similar.”
The audience, restricted to over-18s, will be provided with sleeping bags and breakfast. They will be awakened by a siren the moment that Marcalo suffers a seizure, which they are permitted to record on their mobile phones.
“I think it will shock people. I think it’s her right to express herself and if people find it distasteful they do not have to see it,” Bradford Playhouse Director Eleanor Barrett said.
National Society for Epilepsy neuropsychologist Sallie Baxendale said it was unlikely that someone would be able to induce a seizure at will even when off medication because they were so unpredictable.
“If a seizure happens in front of an audience it is likely to make them feel very uncomfortable,” she said.
“Will this help reduce the stigma which still surrounds the condition? I doubt it.”
Reporting by Paul Casciato, editing by Patricia Reaney