Freaky or No?

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”?
Charlie trying my soup at the diner

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?

7 Responses to “Freaky or No?”
  1. navi says:

    um, scary. but then maybe more awareness is needed…

  2. Bonnie says:

    Oh man, you just hit things on the head for me, freakishness is in the eye of the beholder, and I find that those who choose to stare way beyond their limit, are just well, freaks themselves. Anyone in their right mind who sees Charlie, or Casey ( or anyone else with a “disability”-hate that word)and sees how they might be acting should know they are different. And thusly, they stop staring. But it’s those adults that sit and gawk, or look irritated or disgusted that really get me angry. My sister is always telling me I should hand them a friendly business card with an explanation printed on it and a smile. I however, don’t feel like I should cater to their idiocy. Irrational? Maybe, but, so is their stupid staring. Can you tell I feel strongly about this?
    Glad Charlie had a great week!
    I really don’t understand this woman’s experiment, but it must be meaningful to her and others if she’s getting funded.
    I wonder if letting a bunch of kids with Autism stand on a stage andj move and dance would bring more understanding. I doubt it……

  3. autismvox says:

    I have to say, Larry, your boxing reference is telling—-not to mention what goes on in any other number of sports. Charlie and I often walk in a field where 8-10 year old are in a “pop [American] football league,” and the main thing they seem to be learning is how to run headfirst into each other.

  4. Jill says:

    I think Ms. Marcolo is attempting something potentially dangerous to her health. There are better ways to increase awareness of epilepsy than to provoke a seizure in public.
    When Mary Tyler Moore announced that she had diabetes it increased public awareness of her medical condition. She didn’t have to provoke a diabetic coma.
    I have severe migraine headaches and there is no way I would deliberately give myself a migraine so people could see what it “looks like” to be in severe pain.
    I’m reminded of the performance artist (I don’t recall his name) who had himself crucified as part of his “art.” He didn’t die but he suffered tremendously.
    I don’t see that sort of thing as art; it’s more like watching a sideshow of the sort that used to feature enormously obese women and guys who stuck pins in their faces. That’s not art.
    As for people gaping at Charlie, it’s very rude. I guess people are wondering why a boy his age isn’t behaving like other pre-teens. He was probably better able to slip under the radar when he was younger. Just ignore those rude folks. Charlie has a right to be out in public like anyone else.

  5. Steve says:

    Hmmmmmm. Sounds like a real thrill seeker!!

  6. Dwight F says:

    Oops, the first line of the last post was suppose to be marked as a quote from Jill’s post above.

  7. Hala says:

    I’m thrilled and fascinated by the idea of this performance. I’ve been thinking a lot lately about the stigma of epilepsy and the language used to describe it: the standard terminology, for instance, designates a person taking anti-seizure meds as a “controlled” epileptic, versus an “uncontrolled” epileptic. Despite their serious and often life-altering side effects, forgoing anti-seizure meds is often not presented as a choice. In my case, it however, it was a choice: college or seizure control, since we were unable to find any med or cocktail that didn’t inhibit my ability to cognitively function to the point where I simply couldn’t be in school. That I made a cost-benefit analysis and chose certain things (my ability to process information, write, and think) over others (driving, swimming alone, a certain degree of peace of mind) is seen by many as the height of irresponsibility. I applaud Ms. Marcolo for, if nothing else, making it very clear that whether she chooses to take anti-seizure medications is nobody’s choice but her own.

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