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Tuesday, 9th February 2010

Epilepsy sufferer planning to induce fit on stage

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Published Date:
19 November 2009
For 20 years Rita Marcalo has endured epileptic seizures in private but she is now preparing to raise the curtain on her condition.

Just over a week ago the professional dance artist stopped taking her medication ahead of a controversial "performance" which has already drawn criticism.

When Ms Marcalo takes to the stage in Bradford next month her audience will join her for 24 hours as she attempts to induce an epileptic seizure they will be invited to film.

Billed as a mix of club night, art showcase, pyjama party and voyeuristic pleasure, Involuntary Dances, claims to "present epilepsy as performance."

But the piece, which has been funded by a £13,889 grant from Arts Council England, has already prompted a complaint to Yorkshire-based national charity Epilepsy Action.

The chief executive at Epilepsy Action, Philip Lee, said he was sure many of the charity's members would consider the performance "inappropriate" and he is concerned about the potential danger of a patient stopping their medication to induce a seizure.

Epilepsy Action senior advice and information officer Kathy Bairstow added: "What kind of example is this to other people?"

During 24 hours at the Bradford Playhouse, the audience will watch as Ms Marcalo tempts her body into a seizure through a catalogue of potential prompts from strobe lights, fasting and raising her temperature to trying out methods used to induce seizures in animal testing. Parallel to this, the audience will be taken through a spectrum of entertainment from arts events to a club night complete with DJ, "chill out" stage complete with sleeping bags and hot chocolate and breakfast – until such a point when they will hear an alarm if a seizure strikes.

Cameras will record Ms Marcalo undergoing a seizure while the audience is encouraged to film it on their mobile phones.

Ms Marcalo, has already stopped taking her epilepsy medication to reduce the level of anticonvulsant drugs in her blood stream.

The artistic director of the Leeds-based dance theatre company she founded, Instant Dissidence, she suffers about two seizures a year, even with medication and usually takes herself somewhere private when she knows one is about to engulf her.

"One of the reasons I am doing this is because epilepsy is an invisible disability," she said.

"Because people deal with it the way I do – they take themselves out of the situation and the seizure happens away from people. I think it's a difficult thing to watch so I take myself away.

"Now I want to raise awareness of it and make it visible."

She added: "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 can make it public.

"If you Google or You Tube '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 artist will undergo a risk assessment on the day of the performance and a first aid team will be on stand-by.

She said her GP was aware she has stopped taking her medication.

The Arts Council England defended its decision to fund the project.

A spokeswoman said: "The grant supports an innovative and regional artist.

"Her project explores a disability issue and is a culmination of extensive research supported by the arts and science industries."

The show is only open to people aged 18 and over and the Bradford Playhouse says it will be carefully managed.

Eleanor Barrett, director of the Bradford Playhouse, said last night: "I think it will shock people. People may not understand why someone would want to do that.

"I think it's her right to express herself and if people find it distasteful they do not have to see it."


Concerns over risk to sufferers

Philip Lee, chief executive at Epilepsy Action, raised concerns over the risks of the 'performance' and is warned other sufferers not to follow suit. "We recognise everyone is free to make choices about their own health. However, we are very concerned that a person with epilepsy would stop taking their anti-epilepsy medication voluntarily in order to induce a seizure. Seizures can bring with them the risk of injury from jerking or falling and, in the worst cases, death.

"At the very least, the performance should carry a health warning advising people that they should not attempt this themselves."

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  • Last Updated: 19 November 2009 10:00 AM
  • Source: n/a
  • Location: Yorkshire
 
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Epilepsy Bereaved,

Oxford 23/11/2009 10:45:04
Epilepsy Bereaved works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) through research, education and awareness and by providing support to people affected by SUDEP and other epilepsy related deaths.

We are deeply concerned that the Arts Council is endorsing Rita Marcalo to stop her anti epileptic medication to induce a seizure on the stage. We understand that Ms Marcalo was asked to complete a risk assessment before embarking on the show.

The best available evidence suggests that abruptly stopping Anti Epileptic medication is a known risk factor as this leads to the possibility of increased seizure activity. Over 1,000 people die each year in the UK from epilepsy, around half from SUDEP.

There are national guidelines on the provision of information on the risks associated with epilepsy however, there is a great deal of divergence in practice.

Ms Marcalo is putting herself at risk and far from promoting the condition, this 'performance' will clearly give the wrong message to people with epilepsy about how they should treat their medication. Epilepsy Bereaved calls on Ms Marcalo and the Arts Council to reconsider their decision to go ahead with the show.

The question the Arts Council should ask itself is whether it would consider itself responsible in funding someone coming off heart medication to induce a heart attack? If the dancer is at risk of SUDEP then the issue is the same.

What is harmful here is the promotion of inducing seizures for entertainment when we know that 3 people die a day from epilepsy. We also know that many people with epilepsy and the general public do not understand that a single seizure can kill suddenly.

www.sudep.org 01235 772 850 information@epilepsybereaved.org.uk
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