Surrender Your Say
June 20, 2013 11:45 AM Subscribe
Imagine if you Tweeted something embarrassing, offensive, or just plain weird - and you had no control over it. This is an awareness program from the Tourettes Syndrome Foundation of Canada that uses random automated tweets to participants Twitter accounts to simulate the experience of having Tourettes and raise awareness of the Syndrome.
As an added bonus for MeFites, I saw this come up on the Twitter feed of someone I'm following and one of the first random tweets that went out on her feed was "Taters taters".
As an added bonus for MeFites, I saw this come up on the Twitter feed of someone I'm following and one of the first random tweets that went out on her feed was "Taters taters".
As an added bonus for MeFites, I saw this come up on the Twitter feed of someone I'm following and one of the first random tweets that went out on her feed was "Taters taters".
I hope someone replied "What's taters, precious?"
posted by entropicamericana at 11:56 AM on June 20, 2013 [5 favorites]
I hope someone replied "What's taters, precious?"
posted by entropicamericana at 11:56 AM on June 20, 2013 [5 favorites]
Hi! I'm a fairly active Mefite who will be reading this thread, and I have moderate Tourette Syndrome that significantly impacts my life. I don't really have anything else to say, I just thought maybe throwing that into the thread early enough might ward off some dumb easy jokes.
posted by Juliet Banana at 11:58 AM on June 20, 2013 [30 favorites]
posted by Juliet Banana at 11:58 AM on June 20, 2013 [30 favorites]
What a fantastic idea -- I hope lots of people participate!
posted by FelliniBlank at 12:09 PM on June 20, 2013
posted by FelliniBlank at 12:09 PM on June 20, 2013
As someone who have very mild Tourette's (which went undiagnosed until I was in my mid-20s because, thankfully, it doesn't have much impact on my daily life), I'm glad the one of the first things mentioned on the site is this:
posted by asnider at 12:09 PM on June 20, 2013 [2 favorites]
Tics are a lot more complex than just swearing. A tic could be anything - jumping, screaming, sneezing, twitching- and is completely uncontrolled. Many people with Tourette Syndrome compare their tics to a sneeze, because they’re almost impossible to hold in, and the person won’t feel better until they allow themselves to tic.My tics are mostly coughs and grunts (and this weird clicking thing that I do with my throat) and the occasional facial tic. Strangers who notice mostly think I'm kind of weird and sometimes make faces. I know there are people who have it much worse than I do, but I'm glad they're pointing out that Tourette Syndrome isn't just confined to really obvious verbal tics and swearing.
posted by asnider at 12:09 PM on June 20, 2013 [2 favorites]
I hope people don't make stupid jokes, Juliet Banana. I realize volunteering to have your twitter feed hi-jacked is in no way like actually having Tourettes, but I think this is a really interesting, hopefully effective way to use social media.
It reminded me of this Unicef campaign, but it's even more active and engaged.
posted by jacquilynne at 12:10 PM on June 20, 2013
It reminded me of this Unicef campaign, but it's even more active and engaged.
posted by jacquilynne at 12:10 PM on June 20, 2013
This would be completely indistinguishable from my usual tweets.
posted by dr_dank at 12:20 PM on June 20, 2013
posted by dr_dank at 12:20 PM on June 20, 2013
Pony request : A version for comments on metafilter.
posted by jeffburdges at 12:22 PM on June 20, 2013 [1 favorite]
posted by jeffburdges at 12:22 PM on June 20, 2013 [1 favorite]
I made a semi-tourettes joke on twitter once. I tweeted "Can one suffer from adult onset tourettes?" and either I was taken seriously or the joke was ignored and I had someone that suffers from it hit me back with the probabilities and the criteria for determining if this was so. I wasn't actually that serious with the question (I seldom am). In the end I didn't meet the definitions, and it ended up being I was suffering from mild anxiety attacks. I still caught myself having uncontrolled outburst. It wasn't pleasant. Eventually stress went down and the symptoms went nearly away. I did think there was a possibility I was indeed suffering from newly surface tourettes, but while I am still a bit off I don't have this condition.
posted by cjorgensen at 12:23 PM on June 20, 2013
posted by cjorgensen at 12:23 PM on June 20, 2013
Full disclosure: my MeFi account has been set up for years to make random, confusing, inane comments that seem like they are coming from a user with far less intelligence and wit than I actually have.
posted by The 10th Regiment of Foot at 12:28 PM on June 20, 2013 [1 favorite]
posted by The 10th Regiment of Foot at 12:28 PM on June 20, 2013 [1 favorite]
"Can one suffer from adult onset tourettes?"
I know this was posted as a joke but, kind of. It's typically identified as "motor tics" instead, since Tourette Syndrome manifests when you're a kid. That's actually what I was originally diagnosed with because I told the doctor that, no, I didn't experience these tics as a kid. It turns out that I did, I just didn't notice and no one really pointed them out. After I first told my family about it they were all, like, "Uh...yeah...you did do these things as a kid. You always have."
posted by asnider at 12:30 PM on June 20, 2013
I know this was posted as a joke but, kind of. It's typically identified as "motor tics" instead, since Tourette Syndrome manifests when you're a kid. That's actually what I was originally diagnosed with because I told the doctor that, no, I didn't experience these tics as a kid. It turns out that I did, I just didn't notice and no one really pointed them out. After I first told my family about it they were all, like, "Uh...yeah...you did do these things as a kid. You always have."
posted by asnider at 12:30 PM on June 20, 2013
I knew a guy in high school with Tourette's whose tic was winking. Imagine that one episode of Seinfeld where George gets grapefruit pulp in his eye, multiplied times forever.
posted by Sys Rq at 12:31 PM on June 20, 2013 [1 favorite]
posted by Sys Rq at 12:31 PM on June 20, 2013 [1 favorite]
This is an interesting idea, but I'm also kinda giving it the side-eye because it is basically playing Tourette's Syndrome for laughs. Which is kind of the problem in the first place.
Decades of sitcoms have used Tourette's as a punchline, and now here we are.
posted by ErikaB at 12:42 PM on June 20, 2013 [3 favorites]
Decades of sitcoms have used Tourette's as a punchline, and now here we are.
posted by ErikaB at 12:42 PM on June 20, 2013 [3 favorites]
In the end I didn't meet the definitions, and it ended up being I was suffering from mild anxiety attacks. I still caught myself having uncontrolled outburst. It wasn't pleasant. Eventually stress went down and the symptoms went nearly away.
Interesting. I had a period of significant stress not that long ago, and developed a severe eye twitch. It took several months to resolve, much longer than the stress took to resolve. I'd forgotten about it until your comment, and I didn't make any association with Tourette's, but now I realize it is a memory I can draw on to at least get a teensy tiny inkling of what a very mild form of Tourette's might feel like.
posted by davejay at 1:05 PM on June 20, 2013
Interesting. I had a period of significant stress not that long ago, and developed a severe eye twitch. It took several months to resolve, much longer than the stress took to resolve. I'd forgotten about it until your comment, and I didn't make any association with Tourette's, but now I realize it is a memory I can draw on to at least get a teensy tiny inkling of what a very mild form of Tourette's might feel like.
posted by davejay at 1:05 PM on June 20, 2013
Oh, Awareness. You have much to answer for.
posted by Pathos Bill at 1:53 PM on June 20, 2013 [2 favorites]
posted by Pathos Bill at 1:53 PM on June 20, 2013 [2 favorites]
Fascinating little Twitter hack, it's sort of a russian roulette for your social media. I like how there's no samples of what might happen on the cite, just "because there is no censored version of Tourette Syndrome, our Tweets aren’t censored either".
They have some stats under "impact". 8833 people have opted in.
posted by Nelson at 1:59 PM on June 20, 2013
They have some stats under "impact". 8833 people have opted in.
posted by Nelson at 1:59 PM on June 20, 2013
There are samples on the second page, before you agree to it all.
posted by Auz at 2:01 PM on June 20, 2013 [1 favorite]
posted by Auz at 2:01 PM on June 20, 2013 [1 favorite]
A good, and good-humored documentary on Tourette's: Twitch and Shout.
posted by fikri at 2:15 PM on June 20, 2013
posted by fikri at 2:15 PM on June 20, 2013
Hmm. I un-followed a Twitter account over this, not knowing or caring what it was attempting to "teach" me, only aware that somebody whose tweets I was lukewarm on in the first place was cursing a boring, hastagged blue streak. Hope it was worth it.
posted by Scram at 10:06 PM on June 20, 2013
posted by Scram at 10:06 PM on June 20, 2013
I often wonder what it's like to live with a lack of empathy to the level where something like this would be necessary. And then I'm like, "whoa, irony!"
I should probably tweet about this.
posted by Eideteker at 6:23 AM on June 21, 2013
I should probably tweet about this.
posted by Eideteker at 6:23 AM on June 21, 2013
Well, I didn't want to chime in before forming an opinion, but after watching it in practice, I felt like it's well intentioned but does not really help raise awareness of Tourette Syndrome.
Here's the thing; almost everybody knows people with Tourette curse and blurt out random, wack-a-doodle things. It's actually overly publicized, to the point that it stigmatizes people who don't experience coprolalia, or who experience a wide range of symptoms beyond coprolalia (i.e. basically everyone with TS). A pretty common response to "I have Tourette Syndrome" is "So, like, you yell FUCK FUCK FUCK all the time, right?"
No one knows the high comorbidity of OCD and ADHD/ADD, and the likelihood that someone without a dual diagnosis will still experience some obsessive/compulsive and hyperactive behaviors (like Autism, TS is considered a spectrum disorder).
Everybody knows I say weird stuff. No one knows I struggle with intrusive thoughts. No one knows that sometimes while I'm at work, the image of a razor wound in my flesh appears in my head and the fully formed thought YOU SHOULD CUT YOURSELF TODAY appears in my head unbidden, for no reason. No one knows that if I shake it off, it appears over, and over, and over.
No one knows my knees and ankles hurt from jumping. No one knows that I had to teach myself to set down the knife I'm cooking with if I feel a tic coming on so I don't accidentally hurt myself. No one knows that my friends have gotten used to me leaving a restaurant abruptly in the middle of dinner and coming back two minutes later out of breath and sweaty. No one knows sometimes my heart races and my chest tightens until I sneak to my room to scratch red lines into a hidden thigh with a key or sharp pencil (I don't let myself keep woodcutting blades, which are really similar to scalpels and my preferred self-harm instrument, in the house anymore) at which point my entire body relaxes and I can go pretend to be normal again. No one knows sometimes my heart races and my chest tightens and I drink and drink to try to make it go away and it doesn't. No one knows I go rigid sometimes, that I go limp othertimes, that my eyes squeeze shut* and I stop breathing and I force myself to slowly sink, swaying, to the ground so I don't fall. No one knows that I've been on almost every major antipsychotic developed since the sixties because there's no money in making medications for such a rare disorder.
This kind of sounds like a giant pity party, which I'm not trying to make it be. My TS fluctuates so wildly in severity, lately I barely think about it. But it's an incredibly complex disorder often given short shrift in the popular conscious. The underlying brain dysfunction - the compulsions, the bursts of dopamine, the links to everything from OCD to Trichotillomania - will always be more fascinating to me than the vocal outbursts. I hope someday everyone else feels the same way.
*One of my all time favorite words is "blepharospasm," the uncontrollable closing of the eyes. TS has totally expanded my vocabulary.
posted by Juliet Banana at 8:04 AM on June 21, 2013 [12 favorites]
Here's the thing; almost everybody knows people with Tourette curse and blurt out random, wack-a-doodle things. It's actually overly publicized, to the point that it stigmatizes people who don't experience coprolalia, or who experience a wide range of symptoms beyond coprolalia (i.e. basically everyone with TS). A pretty common response to "I have Tourette Syndrome" is "So, like, you yell FUCK FUCK FUCK all the time, right?"
No one knows the high comorbidity of OCD and ADHD/ADD, and the likelihood that someone without a dual diagnosis will still experience some obsessive/compulsive and hyperactive behaviors (like Autism, TS is considered a spectrum disorder).
Everybody knows I say weird stuff. No one knows I struggle with intrusive thoughts. No one knows that sometimes while I'm at work, the image of a razor wound in my flesh appears in my head and the fully formed thought YOU SHOULD CUT YOURSELF TODAY appears in my head unbidden, for no reason. No one knows that if I shake it off, it appears over, and over, and over.
No one knows my knees and ankles hurt from jumping. No one knows that I had to teach myself to set down the knife I'm cooking with if I feel a tic coming on so I don't accidentally hurt myself. No one knows that my friends have gotten used to me leaving a restaurant abruptly in the middle of dinner and coming back two minutes later out of breath and sweaty. No one knows sometimes my heart races and my chest tightens until I sneak to my room to scratch red lines into a hidden thigh with a key or sharp pencil (I don't let myself keep woodcutting blades, which are really similar to scalpels and my preferred self-harm instrument, in the house anymore) at which point my entire body relaxes and I can go pretend to be normal again. No one knows sometimes my heart races and my chest tightens and I drink and drink to try to make it go away and it doesn't. No one knows I go rigid sometimes, that I go limp othertimes, that my eyes squeeze shut* and I stop breathing and I force myself to slowly sink, swaying, to the ground so I don't fall. No one knows that I've been on almost every major antipsychotic developed since the sixties because there's no money in making medications for such a rare disorder.
This kind of sounds like a giant pity party, which I'm not trying to make it be. My TS fluctuates so wildly in severity, lately I barely think about it. But it's an incredibly complex disorder often given short shrift in the popular conscious. The underlying brain dysfunction - the compulsions, the bursts of dopamine, the links to everything from OCD to Trichotillomania - will always be more fascinating to me than the vocal outbursts. I hope someday everyone else feels the same way.
*One of my all time favorite words is "blepharospasm," the uncontrollable closing of the eyes. TS has totally expanded my vocabulary.
posted by Juliet Banana at 8:04 AM on June 21, 2013 [12 favorites]
BUT YES, SHITCOCK LOL
posted by Juliet Banana at 8:12 AM on June 21, 2013 [3 favorites]
posted by Juliet Banana at 8:12 AM on June 21, 2013 [3 favorites]
The thing about Tourette's is that everyone is already so fully convinced that they know what it is that there's no convincing them they don't.
posted by DoctorFedora at 2:47 PM on June 21, 2013
posted by DoctorFedora at 2:47 PM on June 21, 2013
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