Wednesday, March 28, 2012


Last night I was quite shocked and truthfully offended by an offhand comment made on NCIS. In my opinion, it was completely unnecessary for CBS to have chosen to make a joke about Tourette’s during the show and unless you are keyed in to listen for things like that you would not have even noticed it. Here is the link to last night’s episode; the remark happens right around 1:50.

And here was my reaction.

My email to CBS: “On tonight’s NCIS episode, a character made an offhand remark about Tourette’s in the opening scene. As a person living with Tourette Syndrome, I was offended by the callous nature of the comment. I know most people don’t even realize that something like that can be offensive, but it is. It is socially unacceptable to make fun of a person in a wheelchair or somebody who is blind, but society views making fun of somebody like me as acceptable. I am a person with a disability; I will have a disability for the rest of my life. And every day of my life I am faced with the challenges that other people with disabilities face, and the some. Tourette’s does not mean I run my mouth all the time and say every thought that pops into my head; it means I do and say repetitive things, over and over again. Tourette Syndrome means I lose control of my body; it is excruciatingly humiliating and painful. Every day of my life. Just because I have Tourette’s doesn’t mean I am, or give me an excuse to be, rude. And every day I am forced to face the stereotypes and misconceptions held by the public due to offhand ignorant comments made on television and in movies. In doing so, you are doing a sector of the disabled population a disservice, because when the media pokes fun at a neurological disability, suddenly it is okay for everyone else to do it too. And by perpetrating things that are not true about Tourette’s and by presenting it in the wrong light, the media continues to fuel the ignorance surrounding Tourette’s and the multitude of challenges that we face daily that are not helped by ignorant comments and jokes.”

Now truthfully, was I really all that offended last night? Not really. Was I super upset? No. I was however shocked and frustrated; there is a reason I face stereotyping and discrimination on the basis of my disability and last night was a perfect example. So what made last night different than other shows that I’ve posted on my facebook page in humor? The nature of the remark. Let’s look at the Big Bang Theory for a minute. In this clip (which I find hysterical) one of the characters makes a joke about Tourette Syndrome.

Clearly someone has done their homework. A lot of my tics sound like that. :) And it’s humor that isn’t used in a way to exploit a disability, to misrepresent a disability. I thought a lot about this last night; why this clip doesn’t offend me in the slightest, and why I was moved to complain to CBS last night. It could come down to the fact that the characters who have made Tourette’s references on Big Bang Theory should be classified themselves as being on the Autism spectrum. But truthfully, what I think it is, is that when they joke about Tourette’s on the Big Bang Theory, what they are saying is 100% truthful.

And what CBS decided to joke about was not.

I am not somebody who gets offended easily; you really have to work hard if you want to upset me. I have a very thick skin, due mostly to all of the nasty ignorant things that have been said to me or about me over the last 6+ years. You learn how to develop a thick skin, or you don’t go out in public at all. I have a good sense of humor about what I live with; I have to. My life would be miserable if I let every little thing anybody said upset me or if I let every tic I had that made my life difficult, reduce me to tears.

Not to say that there aren’t days where that happens; I have been known to scream and cry and stomp my feet and throw things that are close to me when I have bad bad days. But those are few and far between. But if I got frustrated every time I cleared my throat unintentionally or every time I struggled feeding myself because my head and hands would not cooperate with my brain, I would spend every minute of every day frustrated. And I have chosen not to live that way.

Does that mean I’m okay if people laugh at me? Not at all. Why don’t I take the one thing that you are humiliated and embarrassed about and poke fun at it. Not so fun all of a sudden. But, if I am laughing or if I realize that the situation is so absurd that there is no appropriate reaction but to laugh, I’m okay with it. My friends understand that there are times it’s okay to laugh and times where it’s not (and typically my facial expressions are a good indicator of this!).

What happened last night upset me for two reasons. First, it was unnecessary. There was no comedic value to be gained by throwing the word “Tourette’s” out there. There was no reason related to the plot of last night’s show and as soon as it was said, the show moved on. Why then, make an unfunny offensive joke? It simply wasn’t warranted or needed.

Secondly, and more importantly, the joke was WRONG. That joke is the reason that people don’t understand Tourette Syndrome. The reason that people think it is okay to make fun of something they don’t understand. Tourette’s doesn’t make me run my mouth; I don’t have tics that make me say whatever I’m thinking. The verbal tics I do have are repetitive. I cannot say that loud enough. A tic is something that happens over and over and over. I have palalia, which in truth (unless I’m really really agitated) sounds like a stutter. I REPEAT words or syllables that I was already planning on saying. Sometimes if I’m really upset over something and I’m not paying attention, I get stuck on a phrase. So yes, with palalia it’s never the same words twice, but it’s a repetitive stutter. I don’t say something once and then move on.

With coprolalia, it was the same swear word over and over again. It is NOT saying something rude that in the situation is appropriate and then moving on. (Which on a completely unrelated note is why I hate those damn “Tourette’s Guy” videos so much.)

Just because I have Tourette’s doesn’t give me a “Get out of Jail Free” card when I’m rude. It explains some behaviors I have; if I’m not paying attention to you, I promise I’m not trying to be rude. It’s because I’m having a battle between my brain and my body and I don’t have enough concentration to spend on a conversation. When I hit people, and I do, it’s because of an errant tic; not on purpose. I would be horrified if somebody ever caught me blaming something on my Tourette’s that I was in control of. So last night, when they decided to blame a character’s excessive talking and off-topic comments on Tourette’s, I think it’s easy to see why I was prompted to act.

Did it really offend me? No, not really. Do I think it’s doing Tourette’s awareness a disservice? HECK YES. If things like that are okay to see on primetime television and in movies, then what is to stop anybody in public for making jokes about themselves or a friend having Tourette’s when they do or say something stupid and inappropriate or from making fun of somebody who is truly living with Tourette Syndrome. Now me? I have a thick hide. The worst thing anybody ever said about me was that I used my disability as an excuse to not work, and that I really wasn’t that disabled. My reaction when this got back to me through the grapevine (this was in a work setting) was – truthfully – that I had wished he had the balls to say it to my face, because I would have had him written up or fired for harassment. Did I go home and cry about it? No… Did I tell all my friends I worked with? You better believe it. We all had a good laugh about it that night.

But what happens when a kid, maybe even who has just been diagnosed, hears things like that? When they are made fun of or bullied in school? When they are made to feel ashamed of something they have no way of controlling? I can handle it now; the first time I caught somebody imitating me behind my back in high school I did go home and cry about it. It blows my mind that we can have come so far in some respects with acceptance, but that kids still throw around the words “retarded” and “gay” with callous disrespect for what it actually means to be those things. We know that it is socially unacceptable to make fun of somebody who is in a wheelchair or who uses a guide dog. We don’t make fun of individuals who are developmentally disabled; heck, even my 3rd graders know that. Why then is it okay to joke about what I live with? To make fun of me? I am just as disabled as any other disabled person; the Americans with Disabilities Act defines a disability by its impact on your life, not the diagnosis. Jokes about Tourette Syndrome are just as offensive and ignorant as jokes about any other minority group; but, because we don’t know much about it – as a society – it’s okay.

And yes, I will scream until I’m blue in the face. Until I talk everybody’s ears off. Because I truly believe that if I send enough emails and reach enough people, that maybe I can start making waves. And maybe, just maybe, this could be something that changes in my lifetime. After all, that’s how the R-word movement got started.

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