Disability Pride Month: Common Things I Hear When I Tell People I Have Tourette’s

Photo by Gretchen Dyson on Pexels.com. Also, teal is the official color of Tourette Syndrome Awareness and I thought this was really pretty.

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.


Disability Activism: Why Using Identity-First Language Empowers Me (But Doesn’t Have to Empower You)

A picture of me, a white woman with dark brown hair, a jean jacket, and white blouse posed next to a white fence with trees in the background.
Hi, it’s me! I figured putting a stock image on something sort of about me would be silly. But now I feel self-absorbed. There is no winning in this situation.

*An earlier version of this Op-Ed appeared in Quail Bell Magazine on December 21st, 2020.

Before I begin, I think it’s good to distinguish identity-first and person-first language…

What is the difference between identity-first language and person-first language?

Identity-first language refers to a person as disabled or some other direct way of acknowledging a disability of some sort. Person-first language is normally phrased as “person with Tourette’s” or “person who has a disability”. There are many reasons why people would choose one or the other. The main criticism of identity-first language is that it is dehumanizing or puts the disability at the front as opposed to the human with the disability. The main criticism of person-first language is that it fails to acknowledge the difficulties or realities of those with disabilities at all.

A pitfall I see with many well-meaning but nondisabled advocates is speaking on behalf of others without taking their opinions into consideration or researching what language might be best for them. For those who identify as neurodivergent (ADHD, autism, sometimes Tourette’s, etc.), many choose identity-first language to take pride in their differences. For those with more visible disabilities, they may want person-first. It truly depends on many factors since 26% of the US population has some sort of disability and the circumstances or stigmas behind them differ.

With Tourette Syndrome, I see a lot of people using person-first language, especially in posts from the Tourette Association of America. I think a lot of this has to do with the severity and visibility of people’s tics being quite visible. Because the disorder is so stigmatized, it is already hard to be treated as human beings as opposed to slapstick comedy routines or unfortunately, demon-possessed.

My Roadblock using identity-first language

Early last year, I published an article about an inclusive art center using identity-first language. When my article went live and was posted to various social media platforms, I expected at least a few negative comments. One commenter mentioned an interviewee’s tie was too short. For a while, I was pleasantly surprised that was the sole complaint. 

But that’s when I saw it.

“The one thing I will insist on is the person is an artist, who just happens to have a disability, never a disabled artist,” commented an older gentleman, who was involved with an inclusive arts center as well. To what capacity, I wasn’t certain, but I felt compelled to respond to him — politely of course — as to why I chose the language.

“I’m the writer of this piece. I am actually disabled as well, and many of us prefer identity-first language as opposed to person-first language because it is a core part of our identity. This isn’t true for everyone, but many of my disabled friends would also insist upon the same name.”

Others who identified with the language also chimed in to agree and share their own thoughts about how it felt right for them. His response?

“Sorry, but I too have a disability and my fellow artists share my thoughts. You create art, you are an artist. An artist who just happens to be what we are. If you want to make money off of pity, then by all means, do it.” 

I was taken aback by his statement. When I discovered more about disability rights, reading about identity-first language helped me to reclaim something about myself I had to keep hidden for so long. The idea that my use of identity-first language is strictly for pity is not only blatantly false, but hurtful. Finding identity-first language empowered me after years of being told to hide a big part of myself: my Tourette Syndrome. 

Why tourette syndrome is an important part of my identity

Approximately 50% of Touretters are not diagnosed until adulthood. I was one of them, wondering what exactly was “wrong” was me. 

I challenged his thinking. “I understand to an extent, but as a movement, we don’t see identity-first language as pity, but for understanding the normal differences between us, not a profit gimmick.” 

Though he never responded to my follow-up, I questioned my own reasons for using identity-first language. Was I really seeking pity? Not a chance — ever since I was a kid, pity has made me feel uncomfortable. When I tell people I have Tourette’s and they respond by shifting uncomfortably and muttering “Aw, I’m sorry,” it makes me feel icky. Identity-first language allows me to own my identity the way I wish after years of being denied the opportunity.

I hardly speak for every disabled person about what they should be called. Person-first or identity-first language are both valid ways of regarding someone with a disability…as long as they are comfortable with it. Different people will want to be addressed and referred to in different ways. A common mistake that does more harm than good is to speak for another person as opposed to honoring their wishes, and that includes anyone, including those with disabilities. 

More Information about identity-first and person-first language

One Thing to Keep from the Pandemic for an Accessible World? Virtual Events, of Course!

Photo by Julia M Cameron on Pexels.com

As someone with Tourette’s and several other comorbid conditions, I was finally able to attend the Tourette Syndrome conference in both 2020 and 2021. Normally it is only held in Minneapolis, but thanks to efforts and sponsorships to have the event completely online, I could attend from the comfort of my own home. I could hear and watch a variety of presenters on any topic I wanted. No plane tickets, no conference fees, and plenty of panels to choose from that pertained to my specific experiences. 

While the pandemic made traditional travel impossible for many, it opened a new world for me thanks to an increase in virtual events. The pandemic has also made it possible to not have to come up with excuses for why traveling is so difficult for me. Very frankly, I rarely tell people about my agoraphobia. For one thing, many people don’t understand the concept of being deathly afraid of being in an environment out of your control (such as most of the planet). I also don’t like recalling the incident that first made me agoraphobic: a trip to New York City in 8th grade involving a traumatic, severe panic attack lasting over 6 hours. 

Growing up, I at least could use the default excuse of “my parents won’t let me.” As an adult, my go-to option is normally being too busy and not having the money to travel. Both are technically true: as an educator I need to put in a good deal of work into ensuring my students are understanding the content they need and as a writer I devote a good deal of time to my projects. Neither of these pursuits leave much room for spare cash, especially if I might be spending money on a trip that may end up being a distressing, awful experience. 

As an agoraphobe, I always consider the following: 

  1. Am I allowed to have a trusted person come with me? As a follow-up, will they be able to come with me so I have someone who can bring me back to reality if I’m having a panic, anxiety, or tic attack?
  2. Is there a place to escape to at the event or other location if it is overwhelmingly crowded? 
  3. Do I have to buy a plane ticket?
  4. If I have to buy a plane ticket, will I have to pay a copay just to get my doctor to give me stronger anti-anxiety medication to avoid an embarrassing and terrifying display on the plane?
  5. If my anxiety at my destination is unbearable, will I need to go to the ER and pay for that too? 

While I have made significant progress to overcome my phobia, it doesn’t mean that I’ve totally recovered. Like many with phobias and mental illness, I sometimes “relapse”. Part of this is the pressure to travel as much as I can, or I’ll “limit myself”. This was further perpetuated by a distant family member who told me I, at age 16, was limiting my potential because I admitted how deathly afraid I am of planes. This only made my anxiety worse, as it placed the blame solely on my weaknesses and fears; I was limiting myself, I was already a failure for not “overcoming” my struggles as opposed to giving myself grace and patience to recover from an experience that was traumatic for me. 

When society puts travel on a pedestal as the ultimate sign of a successful life and shuns those who do not actively pursue it, it ignores the realities of citizens who have many legitimate reasons to not travel, especially those with disabilities. Around 25.5 million people in the US alone are reported to have travel-limiting disabilities. Whether a disability is mental, physical, or both, it shouldn’t be seen as unreasonable to allow disabled people to have accommodations or alternatives, especially when it is to access information about their own condition.

That isn’t to say that every person who wants to travel in order to have a fulfilling life is ableist, but looking down on others for not being able to travel due to mental or physical illness most certainly is. While virtual events also need significant improvements to give a fully accessible experience, even having the option to attend an event virtually is an opportunity for someone to engage with something or someone they never could before.