[News] Update on UK "live seizure" performance

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This was my email...

To The Person Who Answers These Enquiries,

I would like to start this enquiry by demanding that this letter be read by a manager, supervisor, or the president/owner of this council. And would like an precise and informative response.

I am deeply offended. I have been notified that the Arts Council is funding £14,000 in the 'name of art' to a woman called Rita Marcola. Are you all mad? Honestly, this is the most dangerous, mindless act I can think of that a person with this disorder can do.

I have epilepsy and I find the allowance of something so dangerous to continue to be mind boggling. Does this woman fully understand the consequences her action will have? Not only on her life, but on the stigma that is placed on everyone with epilepsy by the outside community?

I hope that in the trail of this being forwarded from supervisor to supervisor, that at least one of you will have a loved one with a seizure disorder, and protest this abomination.

She is painting all those with epilepsy with the same brush, for some cheap and masochist vision that she considers art?! This is in no way art, let alone educational or scientific.

I wonder how stupid this council will feel if Ms Marcola went into Status (non stop seizuring) and DIED infront of her audience? How will her family feel knowing that you could have prevented that from happening by refusing her the resources to continue. Who is going to save your ass, when you can't save hers?

Think about that, before decide if "the show must go on"

sincerely
Rae

P.S. This has reached people in Canada and The U.S.A that are equally disappointed in an uneducated council.
 
I guarantee the arts council gets emails like this on a daily basis, because provocative art will invariably offend somebody.

I agree that her chosen method is problematic and you have every right to be angry, and you have every right to protest it, but I wonder why you've chosen to protest through the arts council as opposed to speaking to the artist directly? Does she not have the right to defend her choices, or are you hoping that the backdoor approach will simply shut the performance down without her ever being given the benefit of the doubt.

Marcalo can easily be contacted through the website for the dance-theatre company she runs called Instant Dissidence.
 
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Thanks occb! My email is on the way to her too! But slightly less reserved.
 
I'll send her a post too, good to know.
 
i wanted to say thanks for the email link! I have sent messages to both the council and artist. Here's hoping that the voices of the masses will have an effect on the people on the council and artist. I requested that they join our discussion. I hope they take the time to visit us here @ CWE and try to understand what it is that we face each say.
 
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Well I got mad while writing...

and sent the council and the artist a scathing letter.

Here is part of it:



"I will come straight to the point. Rita Marcalo's upcoming "performance" to induce seizures for the sake of art is just sickening. I have epilepsy and I cannot comprehend that she would place her life in danger, that people would watch this morbid act, and most of all - that you funded this act to the tune of 14,000 pounds of tax payers money.

This is offensive to myself, and many others who deal with our conditions on a daily basis.

First off, she is trivializing epilepsy and the consequences of having seizures.

Second - she is placing her life in danger. She could go into status epilepticus - where the brain is in a state of persistent seizure - and she could die. If she puts herself in a life threatening position and dies, would you be responsible because you funded her act?

Third - people that go to watch this show will be left with misconceptions of the seriousness of epilepsy. This performance makes a mockery of what we deal with every day. This has the potential to take back education and awareness of epilepsy to the days of circus side shows.

The signifcant amount of money the you used to fund this show could have been spent in a much more effective and non-offensive way to promote epilepsy awareness."



I think I could have written it better, I was just mad, wrote it and sent it...
 
Seizingbeauty, I emailed Ms. Marcalo too, and asked if she would like to join the discussion, since I think that's exactly what's needed here -- it's an opportunity to discuss the boundaries of art, creative expression, and to explore why her performance is exploitive, as opposed to, say a documentary series like Intervention. I hope we can also explore the implication on this thread that some people think they understand the boundaries and needs of her body better than Marcalo does -- a woman who is both a thinking adult and a dancer.

I think, if she has the time and inclination, her participation could be interesting and enlightening.
 
I have had status epilepticus 2 times. My first one was in 1979. It was after childbirth. My husband was told to prepare for my funeral because I was definetinly going to die. It i

The second time, I believe was in 1985. Again, my husband was told to prepare for my funeral.

How I survived, I will never know. The doctor's in both cases had a tough time trying to figure out the right combination of medicines to keep me alive.

Bernard is right about how we watch people having seizures on YouTube. The difference is that they are taking their medicines. I would never stop taking my medicines.

I do not believe that they will stop the show, no matter how many e-mails they get.

Have you ever heard of the famous show in Las Vegas, Roy and Seighfreid with their 2 tigers. One night one of the Tigers attacked it's owner, live audience. Children were allowed to be in the audience as well. It was a famous show until that one night.

There was no protection between the tigers and the audience. One or both of the tigers could have easily attacked the audience. Nobody was shocked or saddened by the performance. The only thing the audience was saddended by was that the show was closed down.

Their will be no stopping this show, either. People love this kind of stuff. They liked it in the Roman Coliseurm where people were attacked by wild animals. The more blood, the more people liked it.
 
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That is your story Ruth, not Marcalo's.

I think a lot of people here are having a difficult time viewing epilepsy outside of their own experience, particularly if their own experience has been life-threatening or extremely debilitating.

Not everybody experiences the most extreme kinds of seizures, not everybody struggles keeping their seizures under control, and, above all, Marcalo does not represent everybody with epilepsy.

The biggest irony here is that many of you are concerned that all people with epilepsy will be viewed the same after seeing her performance, yet you can't see the possibility that Marcalo's condition may be very different from your own.
 
occb said:
Not everybody experiences the most extreme kinds of seizures, not everybody struggles keeping their seizures under control, and, above all, Marcalo does not represent everybody with epilepsy.
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Don't you think that by putting herself onstage she is putting herself in a position that represents all people with E? -The same way people see someone convulse on TV & assume that all epileptics convulse.
 
Hi occb, I agree I do not like it either. It is wrong!! Everyone of us has different types of seizures.

She might not have a seizure at all. I hope she does not. Her seizures might not be bad at all. We do not know what type of seizures she has.

A public display gives the wrong impression. I agree with you that all of us will be viewed as having the same type of epilepsy.

If she has no seizure on the show, she will be embarrassed along with the people who paid to see it. People will then say, Hey people with seizures do not need medicine. They might also believe that she is a fake. Anyway, they look at it, will not be good for our trying to raise the proper kind of awareness of epilepsy. This might set us back several years.

I have a hard time with this also. Status epilepsy was discussed earlier in this discussion. That is why I brought up my own experiences. I will not watch it, if it is shown in the USA.
 
epileric said:
Don't you think that by putting herself onstage she is putting herself in a position that represents all people with E? -The same way people see someone convulse on TV & assume that all epileptics convulse.
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:agree:
 
epileric said:
Don't you think that by putting herself onstage she is putting herself in a position that represents all people with E? -The same way people see someone convulse on TV & assume that all epileptics convulse.
Click to expand...
Having a person represents a social issue is a common advertising technique for advocacy groups to personalize an issue, and yet I rarely hear complaints about those.

For that matter, the TV show Intervention that I mentioned earlier, shows what an addict looks like -- but do they really? They portray the most extreme examples of addiction, missing all the subtlety that can exist with addiction, and yet it has done a lot to raise awareness about the faces of addiction, and the underlying causes of addiction.

What if she doesn't seize? It just goes to show that she has no control over her condition. And what if she does seize? Who knows what form that will take. What if it's absence, atonic, myoclonic or simple partials. In that simple act alone, she'll have destroyed a common misconception about epilepsy.

Or how about the more subtle effects a seizure can have -- the inability to speak properly or remember things. She'll be reciting poetry and dancing during the show. During a post or inter ictal period she may contend with those issues during the 24-hour period, and it would show the wider after-effects of seizures to an audience of people who otherwise would have no access to that information. She's making public what everyone here is already aware of in private. Doesn't that have some value?

The thing is -- we don't know what shape her act may take, since it hasn't even been performed once. I would prefer to reserve my opinion until after I see it for myself.
 
occb said:
Having a person represents a social issue is a common advertising technique for advocacy groups to personalize an issue, and yet I rarely hear complaints about those.
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True but I have yet to see someone representing an issue present it as a sideshow which is how it seems this person is doing it.

occb said:
For that matter, the TV show Intervention that I mentioned earlier, shows what an addict looks like -- but do they really? They portray the most extreme examples of addiction, missing all the subtlety that can exist with addiction, and yet it has done a lot to raise awareness about the faces of addiction, and the underlying causes of addiction.
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True but don't a majority of people now assume that is what all addicts look like?

occb said:
What if she doesn't seize? It just goes to show that she has no control over her condition. And what if she does seize? Who knows what form that will take. What if it's absence, atonic, myoclonic or simple partials. In that simple act alone, she'll have destroyed a common misconception about epilepsy.

The thing is -- we don't know what shape her act may take, since it hasn't even been performed once. I would prefer to reserve my opinion until after I see it for myself.
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The issue is not what finally takes place, it's the fact that she would use this as sort of thing as entertainment or "art". I remember in elementary & high school people asking me to provoke a seizure so that they could watch it. I found that offensive that they would have no caring or concern for what I went through as long as they were entertained. I see this show as justifying and promoting that mentality which we are trying to fight.
 
epileric said:
True but I have yet to see someone representing an issue present it as a sideshow which is how it seems this person is doing it.
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Or is that how the media is presenting it? There seems to be more thought and more aspects to this than just that she's attempting to induce seizures.


epileric said:
True but don't a majority of people now assume that is what all addicts look like?
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I don't know what the majority of people think as a result of that show, and unless a study is done on that, we can't know what the majority think. I only know that I have met a few people whose opinions of addicts have changed -- they no longer see them as lazy good-for-nothings, but as people with genuine problems that need to be addressed.

I also have one friend who is a former addict finds the show offensive and sees no value in it, and another friend who is a former addict who finds it fascinating and self-reflective. Who is right?

epileric said:
The issue is not what finally takes place, it's the fact that she would use this as sort of thing as entertainment or "art". I remember in elementary & high school people asking me to provoke a seizure so that they could watch it. I found that offensive that they would have no caring or concern for what I went through as long as they were entertained. I see this show as justifying and promoting that mentality which we are trying to fight.
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And this is the crux of the issue -- you're right, seizures are not entertainment, which is why her choice of performance is problematic for many people. The difference between your situation and hers, is that nobody, so far as I can tell, is cajoling her into this. She made the decision to present her illness in this way, not the council and not the public. Does that make it okay? I don't know. I would like to hear from her why she thinks it does.
 
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