An actress, Rita Marcalo, who has suffered epileptic seizures in private for 20 years is attempting to induce one for a public performance.
By Paul Stokes Published: 6:19PM GMT 19 Nov 2009
Ms Marcalo suffers around two seizures a year even with medicationPhoto: ROSS PARRY
Ms Marcalo has stopped taking medication ahead of next month’s production entitled Involuntary Dances which she claims is to raise awareness of the condition. But she is facing criticism for putting herself at risk and the voyeuristic nature of the 24-hour event which is being funded by a 13,889 Arts Council grant. People will be invited to film her at Bradford Playhouse, West Yorkshire, where she will use strobe lighting, fasting and raising her body temperature to try and bring about a seizure.
She said: “One of the reasons I am doing this is because epilepsy is an invisible disability. 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. If you Google or YouTube `epileptic seizures’ you come up with all kinds of mobile phone footage which has been filmed without the patients' consent. Part of me doing this is to address the voyeurism. I am saying, I am choosing to let you do this.”
The charity Epilepsy Action has expressed concern at the potential danger of a patient stopping medication and a spokesman said: “What kind of example is this to other people?”
Details of the stunt emerged at a time when Auvryn Scarlett, an epileptic, was jailed in the US for killing a British couple with his dustbin lorry after failing to take his medication because it interfered with his enjoyment of alcohol.
Ms Marcalo, who directs the Leeds-based dance theatre company Instant Dissidence, suffers around two seizures a year even with medication. The audience, restricted to over-18s, will be provided with sleeping bags and breakfast - but will be woken by a siren the moment she suffers a seizure and can record it on their mobile phones.
Eleanor Barrett, director of Bradford Playhouse, said: “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.”
Philip Lee, chief executive of Epilepsy Action believed many of the charity’s members would consider the performance “inappropriate”.
“I am concerned about the potential danger of a patient stopping their medication to induce a seizure," he said. “Seizures can bring with them the risk of injury from jerking or falling or in the worst cases, death. It is also concerning that the performance could influence others to do something similar. At the very least, the performance should carry a health warning advising people that they should not attempt this themselves.”
Dr Sallie Baxendale, a neuropsychologist at the National Society for Epilepsy, said because seizures were unpredictable, it was unlikely someone would be able to induce on at will even when off medication. She added: “If a seizure happens in front of an audience it is likely to make them feel very uncomfortable. Will this help reduce the stigma which still surrounds the condition? I doubt it."
""It is so important to keep seizures under control with medication or through surgery. Ms Marcalo is truly dicing with her life by skipping her medication and attempting to induce a seizure in her play. It is my opinion that her intended daredevil and frightful act is extremely distasteful, degrading, disrespectful and embarrassing to people with epilepsy. If she so much wants to be seen in a state of seizure publicly, she can fairly well have some family members record her and post it in YouTube for the purpose of awareness.
I hate to think that her act will be a strong precedent to others. Copycats are everywhere. Epilepsy activists, advocates and epilepsy societies everywhere are preaching tirelessly about the importance of regular medication intake and no thanks to Ms Marcalo who is about to make a public appearance staging herself in a highly revolting act.""