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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?
Comments
Re: YouTube Videos of Seizures
Submitted by NewJersey on Tue, 2010-01-19 - 06:59
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-epileptic-fits
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)
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-epileptic-fits
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
Submitted by 3Hours2Live on Tue, 2010-01-19 - 04:22
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