Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

YouTube Videos of Seizures

Mon, 01/18/2010 - 08:33

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-epileptic-fits

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

Submitted by NewJersey on Wed, 2010-01-20 - 19:13

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.

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

Submitted by drowsydreamer on Tue, 2010-01-19 - 11:55

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.

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

Submitted by NewJersey on Wed, 2010-01-20 - 19:08
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.

 

 

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.

 

 

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.