“But you don’t…”

“You can’t have Tourette’s, you don’t curse.”

“You can’t have Tourette’s, I never see you tic.”

“You can’t have Tourette’s, you’re normal.”

“You can’t have Tourette’s, you get good grades.”

Or the most popular-

“I never would have guessed you had Tourette’s!”

I hear every one of these phrases all the time. I try not to let them bother me, but they make me a tad bit uncomfortable. Most people with TS have a mild case. I lay closer to the moderate/severe end of the spectrum, just based on frequency of tics. Just because you can’t see me ticcing doesn’t mean I’m not! I probably average about 2-3 tics per minute, but most of mine aren’t very visible. I tense my stomach muscles, crack my knuckles, shrug my shoulder, twitch my eye and blow air out of the right side of my mouth. I’m constantly in pain, so when people downplay my Tourette’s it kind of trivializes that pain. I know people don’t mean to be offensive. In fact, they probably think they’re making me feel better by making me think they don’t notice it. I have long accepted my TS, so telling me it’s not noticeable doesn’t make me feel much better.

But let’s be honest, there’s not exactly a “comfortable” way to talk about Tourette’s, so I’ve come up with a list of things you can say to someone with TS to make the conversation less awkward:

1) I love your shoes! Are those Jordans?

2) what’s your favorite broadway musical?

3) what is your opinion on the current state of the economy?

4) have you ever used Tourette’s as a pick up line?

Ok , maybe not that last one. But all of the previous questions are game. Why? Because they’re questions that make me feel like my personality and opinions come first, and my TS second.

I don’t mind talking about my TS. In fact , I’m quite open about It. But I like to do it in a way that doesn’t victimize me or make me feel inadequate. Yes, I’m in pain most of the time. Yes, I have Tourette’s. The best way you can make me feel comfortable about my TS is by acknowledging that it exists and that it sucks, and then ignoring it altogether.

That might have made more sense in my head…

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The best part about the World Cup

It isn’t often that I get to bring up the World Cup in a socially acceptable manner. Once every four years, to be exact. But when that time comes, I always know what to say:

“Did you know Tim Howard, goalie for the USA World Cup team has Tourette’s? No? Well let me tell you a little bit about Tourette’s!”

And then maybe

“I know you didn’t ask, but I’m going to tell you anyways. Because I’ve been waiting 4 years to bring it up again.”

Hey, no one said advocating was easy!

The time I didn’t say anything

If you ask anyone to describe me in one word, they’ll probably say “she talks a lot.” Yes, I know that’s 4 words, but considering I speak an average of 4 words to everyone else’s 1, I thought I’d take an opportunity to prove my point- I talk a lot! (In case it wasn’t clear) 🙂

As a person with a disability who is very opinionated and talkative, I find that I am often in a position to advocate for others who aren’t able to verbally communicate their thoughts and feelings as easily.

Story:

I have a ton of sensory issues. When I hear certain noises (like chewing, forks scraping on a plate, clicking or vowel blends,) I cannot process them. It is like nails on a chalkboard except 20 times worse. Even after the noise has stopped I will feel the pain and discomfort periodically through the day as I recall the noise. It gets stuck in my head and acts like a song on repeat.

Anyways, one day I was in class. One of the girls in my class was diagnosed with autism and told us at the beginning of the year that we couldn’t clap because she didn’t like clapping. Everyone was generally very accommodating about it.

Fast forward to a couple of weeks later, when we were doing group presentations. At the end of the first presentation, everyone clapped. It was almost a reflex- people are used to clapping after presentations and nobody was doing it intentionally to bother our fellow student. Almost immediately- the girl began screaming and soon was having a full scale meltdown. The teacher kept repeating “it’s okay, nobody’s clapping anymore.”

I knew it wasn’t ok. All it takes is one clap, slurp, vowel blend, Etc. and you’re in sensory torture for the rest of the day. And I’m sure the teacher repeating “it’s ok, it’s ok” and everyone else chattering among themselves was just adding to the overwhelming sensory overload she was experiencing. I felt so bad for her. She was so embarrassed afterwards, even though she wasn’t in control at the time.

I could have said something. I could have used the opportunity to educate the class on how she was feeling, that she wasn’t “overreacting,” and help them see what they could do to help her.

I could have talked to her afterwards and let her know that she wasn’t alone, that I knew how she felt, and that she didn’t have to be embarrassed.

But I didn’t. The girl who talks a mile a minute didn’t say anything. And I regret that more than anything.

Tourette’s camp

Ahhh, Tourette’s camp. The greatest invention in the history of the world. Whoever invented it definitely deserves a Nobel prize, or at the very least some sort of medal from oriental trading magazine.

I have been to a camp for kids with Tourette’s and had a blast. Even as a person with Tourette’s, it was an eye opening experience. They often say “if you’ve met one kid with autism, you’ve met one kid with autism.” The same thing goes for Tourette’s! It was so interesting to see all of the different tics. Everyone would compare tics, and it was really cool to see that they weren’t seen as embarrassing, but as some sort of street cred. The camp favorite was the girl who’d scream “ITALIAN PASTA SALAD” at the top of her lungs. (Plot twist- it was me.)

I picked up several new tics at TS camp, and I wasn’t even mad! I personally think if every person on this earth spent one day at Tourette’s camp, we’d have a much more awesome, accepting world.

Anyways, I’m off to a different TS camp this summer and am counting down the days. I can’t wait to be with “my people!”

The controversial cure

That’s right, I went there.

The cure. The one thing that has the power to sever the close bond between members of the disability community. It doesn’t matter if it’s autism, Down syndrome, ADHD, Tourette’s, or a genetic disorder- everyone has an opinion on whether a cure should be available.

For those of you unfamiliar with the controversy, I will attempt to explain.

I have never met a person with a disability and thought, “poor them, their life must suck and have no purpose whatsoever.”Because it’s just not true! Having a disability is not the end of the world, and everyone has strengths and weaknesses, disability or not.

Many people take pride in their disability, as it is what makes them unique, and is a part of who they are. It does not define who they are, but it is certainly a part of them. When people start talking about a cure, it begs the questions “if my disability is taken away, will it change who I am at the core?”

Tourette’s has given me a keen sense of other peoples sensitivities and needs. I am able to advocate for others with special needs because I know what it’s like. If I didn’t have Tourette’s, I am pretty confident I wouldn’t have that ability. And the ability to be empathetic and understanding is one of the things I like best about myself.

At the same time, Tourette’s sucks. It hurts. It’s frustrating when I’m trying to do something but I can’t stop ticcing.

Is the ability to empathize and be a good advocate worth the pain of TS? For me the answer is yes. I wouldn’t cure my TS if I had the opportunity.

However, I understand where others are coming from. Although I wouldn’t cure myself, I wouldn’t be against other people doing it for themselves. It is a highly personal decision and I recognize it isn’t my place to tell anyone that a cure is or isn’t right for them.

So, when it comes down to it, I wouldn’t cure my TS.

…But my OCD is a COMPLETELY different story 🙂

The dreaded comment section

I’m lucky enough to live in a community that’s very diverse and accepting. As a result, I tend to wear rose colored glasses when it comes to the amount of ignorance that still exists in our country, specifically related to disability rights.

Luckily, the internet comment section exists , and never ceases to pull me back into the reality of how far we’ve really come.

First, let me reiterate how far we actually HAVE come . The answer is pretty darn far. Kids with special needs are by law required to be accommodated in schools. The ADA (Americans with disabilities act) has provided long deserved accessibility for Americans with disabilities. People are generally more accepting of those with disabilities, and institutions are considered archaic places of the past (not everywhere, unfortunately.)

THANK YOU, KENNEDY FAMILY!

Laws are in place. But many people still are in the dark about people with disabilities. So when I read an article about Autism and read comments such as “autism isn’t real,” “autism is rare” or “just don’t vaccinate your children,” I can’t help but weep for humanity.

There can be all the laws in the world, but how do we make the jump from being legally entitled to something and being truly accepted by society?

Just a philosophical thought for the day.