Disability advocacy has become a passion of mine within the past few years, especially after I finally got diagnosed with Tourette’s.
July is Disability Pride Month, so I’m going to be a little bold today and list common things I hear/experience when I tell people I have TS.
Before I get further into this, the most important thing to understand is that every case of Tourette’s is different, as are the opinions of each person who has it. I’m not the Ambassador of Tourette’s (yet). Here we go:
I didn’t know you had Tourette’s!
Now you do!
I’ve never met someone with Tourette’s.
You probably have and just didn’t realize it. We’re everywhere, you know. Always watching.
I didn’t even notice your tics!
I pretended they didn’t exist for over a decade, so there might be a reason for that.
I knew you had Tourette’s because I noticed [insert tic or quirk here].
Congrats, you did better than my childhood neurologist. No, really.
That’s what makes you special!
If you’ve known me for a while, I’ll take the ego boost. I will also take a tiara. However, if you’ve known someone for five minutes, a lot of people feel awkward or infantilized, especially if you don’t have a tiara to give us.
Here are some neutral responses that should be dandy for anyone:
Gotcha, thanks for letting me know!
I’ve never met someone with Tourette’s. Is there anything I need to know that could be helpful?
It’s not as bad as other people’s TS or as bad as having [insert other disability/condition here].
That may be true, but I didn’t tell you I have TS to get an assessment of how severe is severe enough to count as TS or a disability in the first place. I’m telling you to give you a heads up that if I make a face at you or twitch while I’m listening to you, it’s nothing personal. I can’t tell you how many people I’ve come across that also have TS that you wouldn’t guess (including myself) would have it because they’re able to keep their tics under control, but still need support in same way or another. This also perpetuates the idea that a Tourette’s diagnosis only applies to those with more frequent or severe tics. It is much more common than you would think, and playing gatekeeper with what a disability is “supposed” to look like harms everyone and makes them reluctant to get the help they need.
Can I see your tics?
Sure, whenever they decide to make an appearance. You can preorder tickets for $5 each.
In all seriousness, some people don’t want to tic in front of others, and we’re not zoo animals, so don’t try to force anyone to tic in front of you.
*Intense staring, waiting for me to tic*
I feel like every animal featured on Tiger King when you do this. They didn’t have a good time, and I’m not either.
Do people/students make fun of you?
I mean, maybe. But that’s not really my problem. For the most part, people are just interested in knowing more about it and I’m always happy to answer questions. I will also say being upfront with it has been very beneficial when it comes to students’ trust, especially if they have disabilities, because they know that I understand what it’s like to experience similar challenges.
As for the more negative things, I tend to hear lazy jokes or stereotypes from people in casual conversation, both from younger kids to adults. They may flail around, shake, or do something else ridiculous and go “HaHa i HaVe ToUrEtTe’s teeHEE!!!!” as I stand perfectly still and quiet right next to them, not suspecting that someone with Tourette’s could look like me. I like to pretend I’m on The Office and smirk or raise an eyebrow at the camera.
Wow I wish I had Tourette’s so I could cuss and scream all of the time with no consequences!
If you look up any story of someone with coprophilia or copropraxia, they’re often misunderstood and berated in public, so the idea that there aren’t any consequences is incredibly ignorant. If South Park can explain this accurately, you really don’t have much of an excuse.
Why can’t you just get it cured?
There is currently no cure for Tourette’s. Plenty of treatments like regular exercise and a diet that is mindful of tic triggers make things perfectly manageable for the rest of your life, but no, the sketchy smoothie recipe you found online isn’t a cure.
Sometimes my eye twitches, do I have Tourette’s?
I don’t know, I’m not a doctor.
You shouldn’t be telling people that you have Tourette’s because it’s none of their business.
It’s not really your business to tell me how I should experience or talk about Tourette’s. People are allowed to be as quiet or as open about their experiences with disability as they want to be. I do this because I find more benefit in being open about it than not. This is not true for everyone, so be respectful of people’s boundaries.
I had a question about my family member’s/friend’s disability and they seemed offended/angry that I asked them a question. But it’s just a question! Why can’t they be like you?
Refer to the answer above. Boundary pushing isn’t okay. If they want to share it with you, let them. Otherwise if they decline to answer those kinds of questions, let it be. This applies to a lot of situations, by the way.
You don’t actually have Tourette’s, you’re just lazy and want to be able to use it as an excuse to not do anything!
Some of the hardest working and successful people I know have documented disabilities, and make ZERO excuses, so I hardly see how reasonable accommodations are an attack on your own perceived superior personal work ethic.
Just because you think asking for help makes someone freeloader or that it’s a “Get Out of Jail Free” card doesn’t mean it actually is. Sometimes my tics or comorbid conditions make things difficult, and I’ve had to learn the hard way that I sometimes need help. So don’t make it harder for others like me to ask for help or to try and face a challenging condition alone.
Also, I got a graduate degree at 22. I had to do a lot for that, including relearning 6th grade math for a test to even get into graduate school.
Wanna learn more about Tourette Syndrome or want to donate to further research the condition? Check out the Tourette Association of America website.