Rita Marcolo, a dancer in the UK who has been epileptic since the age of 17, is planning a 24-hour performance which will include strobe lights and sleep deprivation. Prior to the performance, she has ceased to take her epilepsy medication. She received a grant of £13,889 from the Arts Council England for the performance. Notes the November Times Online:
Epilepsy charities said that the event turned a much misunderstood condition into a freak show and warned of the potentially severe dangers of coming off epilepsy drugs. Marcalo said that she wanted to raise awareness of epilepsy as “an invisible disability” and would use next month’s adults-only show at Bradford Playhouse to explore “my ‘other’ identity as a disabled person”. Marcalo, the artistic director of a Leeds-based dance theatre company, Instant Dissidence, has been epileptic since the age of 17. She stopped taking her anti-convulsant drugs last week and for 24 hours, from 1pm on December 11, a paying audience will watch her attempts to bring on a fit. These will involve the use of strobe lights, fasting, sleep deprivation and specially designed computer programmes, plus raising her body temperature and taking brain stimulants including alcohol and tobacco. Performances from other dance and installation artists will keep the viewers entertained as they wait. The Playhouse says: “At any point in the event Marcalo might have an epileptic seizure. Whenever this happens, a loud alarm will sound, lights will brighten, music will stop and a series of cameras will start recording her seizure. Audience members will be encouraged to record it on their mobile phones.”A neuropsychologist from the National Society for Epilepsy, Sallie Baxendale, comments that:
“The upside is that it gets people talking about epilepsy, but the downside is that it’s being presented as a freaky type of entertainment as opposed to teaching people about seizures. “The danger of coming off medication is that sometimes when you go back to the same level as before your seizures are not controlled any more. You play about with your medication at your peril.”From the Times Online article, it's not clear if medical personnel will be on hand during Marcolo's performance. One can't help but wonder if the dancer might be risking health too much in the service of art, with such a performance? Or is Marcolo's performance rather a novel way to increase understanding and awareness about epilepsy, about what it is to have a seizure? As a parent of a child who seems prone to some sort of neurological activity that we can't seem to figure out, I'd say that we make it a point to avoid or at least think of how to ease Charlie through any situations that might cause said activity, and seek out environments that are more likely to be soothing and not over-stimulating. And, Charlie takes various medication some of which are anti-seizure meds, and you can be sure we make sure not to miss a dose. What I'm wondering is, what's to be gained for public knowledge about epilepsy, to witness someone, it seems, deliberately creating the circumstances for herself to have a seizure? Are audience members allowed or expected to aid Marcolo should she require such? Is she making of herself a literal "freak show"? Often enough, Charlie being Charlie gets attention---stares and uncomfortable glances---of an uncomfortable sort. Wanting to celebrate Charlie's good first week at his new school (Friday was good), we had gone to his favorite diner last night for an early dinner. Two couples, one quite elderly, were seated in his preferred booth. They all seemed to be ordering complete Early Bird Special dinners and Charlie eyed their food and them---smiling a lot---while waiting for his burger. (He also asked a few times to try my soup.) There were some perplexed, if not apprehensive looks, at Charlie's mannerisms and his speech and vocalizations. After he had finished eating and was pulling on his coat, there was a new round of stares and questions from two boys who were dining with their grandparents, and all the more when Charlie paused between the booths, put his head down, and paused. Sometimes we say something; last night, we didn't. Charlie eats quite a bit at this diner and he wasn't doing anything particularly unusual or exciting. Any "freakishness" was in the eye of those looking. And perhaps that's the mindset that might be useful in considering Marcolo's performance. Freakshowness is in the eye of the beholder?