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YouTube Videos of Seizures
Mon, 01/18/2010 - 08:33Someone 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?
Re: YouTube Videos of Seizures
Submitted by pellykate on Mon, 2010-03-22 - 18:21
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.