Tuesday, August 28, 2012


In case you were wondering where you insensitive pins on pinterest about Tourette Syndrome go, it was me.  (Similarly, if you were wondering who reported you or your page on facebook, it was me again!)  I have no problem reporting or blocking things I find offensive.

That being said, the extent that people are willing to go to just to harm others really astounds me.

Last week "trolls" got into one of the support groups on facebook.  For those of you not up on the internet lingo; a troll is a person who posts inflammatory things just to provoke a reaction from the people who frequent a forum or page.  And I really hope that there was just one person; because the thought that over 15 people on facebook joined together to harass a group of persons with a disability is unthinkable.  But to think that one person made over 15 facebook accounts under strange names each with profile pictures and the like, just to harass people on a support page is just as unthinkable.

I caught the tail end of what happened; it wasn't a page I am a member on, truthfully because it is not a page that was well monitored.  The pages I belong to all have admin and you have to get approved to be a member.  By looking at my facebook, you can see that I am a real person, I don't just have just one photo up, and that I talk about Tourette's.  Having open groups is asking for trouble; especially when it is a group of people looking for support for a disability with a horrible stigma attached to it.

I did my part though, spending about 30 minutes combing through posts and blocking/reporting people.  By the time I joined in, most of the troll accounts had been blocked, but the things that were still there really disgusted me.  I can't comprehend why somebody would want to say those things; how insecure about your own life you would have to be to make inappropriate jokes about tics in ... "interesting" places (use your imagination), or to harp on coprolalia like swearing uncontrollably is some kind of joke.

And I understand why it happens.  On the internet you can be anonymous, I can say whatever I want to and not get reprimanded.  Especially if I am using a fake account with a fake email address.  Eventually, a line is crossed and some action can be taken, but simply harassing somebody online normally isn't enough.

When I see things like what happened, it doesn't affect me.  I can't imagine how insecure and pathetic somebody must be before they decide to degrade somebody with a disability; why should I let the actions of people like that affect my attitude?  However, when I read horrid things like that, I imagine how I would have felt (and did feel) at 15-years-old when I was just diagnosed and terrified of my own body.  How a kid who is still struggling with their diagnosis would feel if they read those things.  And that makes me mad; you aren't just picking on a group of adults.  They were picking on a group of people with disabilities, many of whom have comorbid conditions that affect their processing abilities and emotions.  A group of parents with children who have a disability from which there is no cure, and a group of people who are trying to find some solace in the internet from the nasty things people say about us in public.

Parents; if you have a child (disability or not) on the internet you need to monitor what they are doing.  People say things on the internet that they would never in a million years say to somebody's face.  When you remove the need to have a face-to-face conversation, people lose control.  You should know what your kids are doing and be vigilant.  In my opinion (take it or leave it), 12/13 years old is too young to be on facebook.  Too young to be on forums that aren't closely monitored by either a parent or an administrator. 

Know what to do if you see bullying going on.  If it is directed towards you (or your child) you can take a screen-shot of the page and then block and report.  If the powers that be decide that what was said isn't bad, nothing will happen.  But if enough people report something, or if what was said was really bad, people can have accounts frozen/revoked.  And if you are abusing the privileges of a community you deserve to have those privileges revoked.  If it is something going on within a school, bring it to the principal's attention (this is why it is important to take a screenshot, because if somebody removes a status you won't be able to find it again).  Schools should have rules and consequences regarding cyber-bullying, and if they don't they need to.

Personally, I think that if somebody is hell-bent on bullying and harassing online, they should have internet service frozen.  Do it enough times, and their contracts should be dropped.  I don't know why we allow things to happen without consequences.  Facebook should be able to see the IP address accounts are being created from, and stop them if it is shown that a certain IP address continually gets reported.

And if it is your child who is saying these things?  They don't need the internet.  Simple as that.  For schoolwork, they can do it with you online.  Things like facebook are a privilege, not a necessity.

If you are the one saying these things, re-pinning these things, whatever, evaluate your own life.  What is so horrible with your life that the only way you can feel better about yourself is to make other people miserable?  Because it must be a doozy if you feel the need to bully a group of disabled people.

Even the things that are meant to be "funny" (i.e. "How are you disabled? Tourette Syndrome you b*tch."), I don't find funny.   The T-shirt that says "What do we want? A cure for Tourette's! When do we want it? C*nt." is vile and offensive.  Seriously, who is going to wear something like that out in public?  Here's your clue, not a person with Tourette's.  I have stayed away from this topic for a long time now, but I'm jumping in and I will try my hardest to not be on my soap box for very long.

Tourette's Guy.

He was a YouTube "sensation" when I was in high school.  This man does not have Tourette's.  And if he does, shame on him.  I have less respect for him if he actually has Tourette Syndrome than if he is just an asshole trying to be funny.  Nobody, with this disability would knowingly and willingly make fun of Tourette's in such a disgusting, blatant way.  I've only seen bits and pieces of a few videos (because I couldn't stomach more than that).  But, I've seen enough.  In my opinion, this man is one of the main reasons (if not the reason) that we have so much trouble with the "image" of Tourette's.  He made it okay to laugh at and poke fun at.  He perpetrated the stereotype that Tourette Syndrome is the "swearing disease", making everyone who does has Tourette Syndrome, coprolalia or not, embarrassed to say what they have (newsflash: only 10% of Touretters have coprolalia).

And this disgusts me.  I have to fight every minute of everyday to have a semblance of normalcy in my life.  Yesterday, I woke up and I couldn't walk because my calf muscle charlie-horsed all night.  I am limping around campus today because it still hurts to walk.  This is my life; random injuries that I can't even place what they are from anymore.  It wasn't until I started turning my foot to the inside (pigeon toed) last night instead of the outside (club foot) (both are dystonic tics), that I realized how I injured myself in the first place.  This is my life; I have so many tics that unless they cause actual, acute physical pain, I don't even register them anymore.  And that somebody spent time degrading this disability, turning it into a joke, is really disheartening.

And yes; I do report the "Tourette's Guy" pages; not that anything gets done.  I just want somebody to know that people are not content with allowing his filth to be spewed out onto the internet.

Now... That's not to say I can't laugh at what I have.  I seriously just laughed out loud when I found this on pinterest in the computer lab. 

Enjoy! :)

Cartoon Stock

UPDATE: I posted this on facebook after this post went live and I realized that if somebody didn't see it they might think I am normally this angry and "rant-y".  So, here it goes:

This week has been the week of TS injuries. Started the week with severe cramping in my lower calf muscle (due to a new dystonic tic). Finally got that worked out in time to give my self a (mild) concussion yesterday afternoon. I realize that my blog post on Tuesday [this one] wasn't in my typical style or tone of voice; I think that's partially due to the fact that I've been in pain for a prolonged period of time. I've debated editing the post or removing it because I'm not thrilled with the way it sounds, but I stand by the thoughts behind it. I wouldn't be "true" to this life if I didn't leave posts up that were influenced by frustration and pain; they are influencing factors in my life. Bullying of anybody, especially children with disabilities, is a huge hot-button issue for me. When I am a teacher, I want to work towards creating a school community where I work where the students in my class are just as accepted as their able-bodied peers. If I can stop just one student with a disability from experiencing what I did, I'll be happy. Being ridiculed and bullied for something that is 100% out of your control is unbearable, and I'm hoping I can help change the attitudes towards invisible disabilities (including Tourette's). So, I'm leaving it up and maybe one day I'll revisit the issue of bullying people with disabilities with a slightly less... frustrated point of view.  (8/30/12)


  1. ahhahaha at the comic. It reminded me of being at auctions as a kid. We used to rescue our lesson ponies from last chance auctions, and my mom made me sit on my hands so that I wouldn't accidentally bid on a pony by twitching! (She didn't know I had tourette's, just that I was REALLY fidgety..)

    1. I'm a horse rider too! :D

      I would be terrible at a horse auction; once I get healthy again, I am going to seriously look at getting a horse. Though, no auctions for me - I'd manage to tic my way into owning every horse there!