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NewJersey

YouTube Videos of Seizures

Someone may have already raised this topic but, if so, I did not find it.

I was distressed to read an old report in Metro.co.uk about  videos of seizures appearing on YouTube.  http://www.metro.co.uk/news/148242-youtube-s-freak-show-videos-of-epilep...

The report likened the videos to old-fashioned freak shows.

Maybe people want to laugh at epilepsy because they are afraid of it.  Maybe they are genuinely curious to know what a seizure looks like.  Or maybe too much reality television has numbed them into insensitive louts.

But, you know, if I had a seizure on the train, it would be the easiest thing in the world for one of those louts to film it on their cell phone and post it on YouTube.  According to the article, YouTube encourages people to flag videos that invade their privacy.  But if a video of me having a seizure appeared on YouTube I would not know because I don't go there.

First of all, I think that YouTube should not allow anyone to post a video with a tag like "seizure," "fit," or "epileptic."

Second, I think that people with seizure disorders and their loved ones can act as a group.  Any video that mocks seizures invades MY privacy.  I can flag it.  And so can we all.  Even if we don't know the person having the seizure.  If you see a video of me having a seizure, I hope you WILL flag it.

Can we discuss doing that?

 

Comments

Re: YouTube Videos of Seizures

Hi NewJersey,

Recordings of neurological events in public are just that, public.

The abscence of privacy in public places is a double-edged sword, as many misbehaving people and many misbehaving public officials have discovered.

There have been many reports of people having seizures being ignored by the public, to being assaulted by the police. Documentation of such events is extremely important, and in my experiences, the notion of privacy has been exploited more in efforts of others to shield themselves from responsibility by being overly concerned with my privacy in public so as to spread a shield of ignorance when it benefits them in dealing with my legal rights. Otherwise, officials are very sloppy with protecting anyone's privacy, even in extremely private situations.

Once I passed the age where Medicaid can run judgment against my estate, all of the Adult Protective Services have become overly interested in my well being (before this magic dividing line, the same social services wouldn't even return a phone call). Since they could always question my memory because of epilepsy (which they attempted), I decided to continuously record my location and audio whenever I'm in public, and I've already documented public officials being far from pursuing the public good and/or being helpful, and a couple threats of violence from the public for me carrying my GPS unit. Next, that will be illegal while walking because of the threat of "distracted pedestrians" to the public good.

With security cameras being very common, lawsuits over the use of the created video are common, with the video being more freely available when it makes the person of interest look bad, and the video being nearly impossible of access when it makes the entity in control of the video look bad. Right now, it seems like having a seizure at an airport could easily be regarded as evidence of high likelihood of having a weapon of mass destruction or criminal intent with everything, so the more the documentation of the event, the better the actualization of legal rights and protections become possible. The "embarrassment" of having a seizure seems minuscule compared to the level of probable official over-response shortly afterwards in public.

As far as the public poking fun at seizures, or holding people in contempt with seizures, or having a prurient interest in seizures, that never happens unless there is undeniable evidence of it happening, then it is regarded as happening to everyone. I got that line of balderdash from both state and federal bureaucrats, and private employers.

Tadzio

Re: YouTube Videos of Seizures

Tadzio, if I understand you correctly, you embrace ubiquitous video monitoring because it shines a light on people who either a) respond inappropriately or b) fail to respond to someone having a seizure in public. If security cameras everywhere can teach those people and thus make me safer, I agree with you. 

Security cameras are different from insensitive idiots who happen to be holding a video camera at the moment any one of us has a seizure.  If the security cameras at Newark Airport caught me in a seizure, I like to think that the professionals handling them would not upload the footage to YouTube. 

But if you go back to the article I cited

http://www.metro.co.uk/news/148242-youtube-s-freak-show-videos-of-epilep...

people are leaving comments on the videos such as 'Cool! Also known as the idiot dance' and 'Nice. Ten thumbs up. I laughed hard.' When people laugh at me, I want it to be because I told a funny joke, not because I have falllen ill.

My life would be easier if I could comfortably tell the people I work with about my epilepsy (just in case), but how can I do that when genuine idiots are out there on YouTube stigmatizing us?

Best wishes from NewJersey

(ps, sorry, the full URL of the metro.co.uk story is not appearing in the preview.  If it does not appear in the posting, I hope you can google it.  nj)

Re: YouTube Videos of Seizures

Hi NewJersey,

The difference between "insensitive idiots" and "professionals" is often very small. Also, most websites have policies that limit or exclude anything that may be regarded as pornographic, obscene, defamatory, inciting, etc.; metaphorical quicksand is here, because many people regard epileptic seizures as being obscene, inciteful, and, usually in hindsight, defamatory (and, in classical terms, a few pederasts viewed some of my seizures also as pornographic, and then blamed me for their actions from their lust, but professional silence and concerns with my privacy was then the rule against my better interest).

While "insensitive idiots" will use less than diplomatic words to describe their viewpoint of another person's seizure, the professional will often express their even more negative viewpoint with diplomatic words judging the effects of another person's seizure. Professionals have found me humorous, more in the way of Petronius, and one wanted lectured in the manner of Rabelais, and judged my Geschwind Syndrome as Rimbaud incarnate, but still found my more disrupting seizures from epilepsy as a laughing matter of no other concern.

The Rehabilitation Act, and the Americans with Disabilities Act, gave me a couple tons of documentation on the requirements of documentation to meet the status of a Prima Facie case in Federal Court for discrimination by a professional official. In brief summary, the official will simply destroy adverse documentation and will maintain, or create, propitious documentation, while the "insensitive idiots" inadvertent documentation may be the only challenge that offers frustration to the less than honorable conduct of the professional official exploiting the law.

It is much worse to be stigmatized by a prejudiced professional official than stigmatized by a prejudiced "insensitive idiot," though they might be the one and the same individual at times.

Then, most of Federal and State Court cases are also posted on the internet. Sometimes, diametrical videos of the subject matter, also posted on the internet, disrupts the smooth flow of injustice.

Tadzio

Re: YouTube Videos of Seizures

From time to time, I have been astonished by the judgmental commentary of physicians--unfortunately they're only human.  But it was usually in books, where most people would never find it. 

YouTube is much more accessible to anyone looking for a crude joke at someone else's expense.

Re: YouTube Videos of Seizures

I fully understand that posting a video of someone else having a seizure is invasive, rude, and inappropriate. However, that's not the only kind of video posted on Youtube. I have seen several videos on Youtube of people filming themselves having seizures, and then posting on youtube voluntarily. In fact, I found this very helpful because it's one of very few places where you can see a real seizure and what it's like. I had no idea what my tonic-clonics could look like (obviously I'm not conscious for them), but watching someone in a video made me empathize more with what my family goes through when this happens. TV and other media depictions of seizures are rarely or never accurate, so from one perspective, it's helpful to have videos like this out there.

That being said, Yes, filming strangers and posting in public domain is unacceptable and I agree with flagging it as inappropriate, but be sure to read the poster's opinion about it first. Some videos are there by choice, to educate others, and not just to label or make fun of people with epilepsy.

Re: YouTube Videos of Seizures

Good point, drowsy.  One of the top videos on YouTube today was posted by the Epilepsy Therapy Project, and it directed viewers to epilepsy.com.  I saw another with a preface by the patient herself.  (Perhaps she could have said "My name is Karen and I approve this message.")

Videos that educate people about epilepsy, aiming to remove the stigma, are good and should not be flagged.   

Still, I am unnerved by the idea that people could use YouTube to poke fun at people having seizures.  What if my co-workers, whom I have not told, found a video like that and decided that epilepsy was funny?  People are always looking for an out-group to ridicule.  For example, when I was a child we thought it was the height of hilarity to tell "Polack jokes."  For obvious reasons, people of Polish descent protested.  We don't tell those jokes anymore.

It's getting harder to find out-groups to mock.  But it's still relatively easy to make jokes about unconscious people--they can't defend themselves.  So I say, even if the video is not about the person watching the video, if it ridicules seizures, it ridicules each of us and it deserves to be flagged.

 

 

Re: YouTube Videos of Seizures

People seeing someone having a seizure out in public may react differently to someone surfing YouTube for something to make fun of. Yes, and that sucks. That said,

When I first suspected epilepsy as an explanation for some of the weirdness going on with me, YouTube was one of the first places I looked, after, of course, here. I had never witnessed any type of real seizure, only dramatizations on TV, and those were just the full-tilt-boogie gran mal variety. I needed to see if what my body was doing could possibly be classified as a seizure, and also to compare what I had felt (that may have been a big one before sleep) to anything I may see. You know how you watch something and say, "I know what that feels like..." Also it was helpful when I searched for "child sleep seizure" because of an incident with my son at night. There were a couple of videos that were almost identical to what he did. So now I feel more confident that when I hear noises from his room I need to check rather than assume it's normal sleep behavior and nothing. The serious videos posted with the subject's consent are beneficial in such cases as mine. Filming someone having a medical emergency without their consent, in public or not, and displaying it in an environment that is prone to ridicule and insensitivity, is wrong. It may be legal, but that doesn't make it right.

Re: YouTube Videos of Seizures

In recent years I've seen more and more fictional stories, whether on TV or in the theater, at least mention epilepsy or include someone in the cast who has it. In all cases I've witnessed, no fun has been made of him or her. Let's get realistic. If the public could see a "proper" definition and example of what many of us live with physically and socially, fewer sly comments just might be made. I've been interviewed several times on TV, just describing the fact that I have epilepsy and what my challenges have been over the years. And yes, my full name has been used. But to make fun of it--or me--would be just improper. Even by me!