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What I want the world to know about Tourette Syndrome

A few years ago, my sister was walking with my mom and they saw a parked police car. My sister became visibly nervous. When my mom asked why, my sister explained that she was worried. What would happen to me (her brother with Tourette Syndrome) if I ever encounter a police officer and start tic-ing?

She raised a good point. Tourette is a really misunderstood disorder and the media does not help. Think about what you have heard in the media about Tourette Syndrome. In the absence of factual information and knowledge, a police officer could misinterpret the cues given off by someone experiencing a tic episode. The inability to control parts of our bodies, coupled with the involuntary noises we often make, could really get us in trouble. This is particularly true if we are given specific direction to stop moving or making those noises – a request with which we, because of our Tourette, might not be able to comply.

I immediately reached out to the Mayor of my city, the Commissioner of Public Safety and the Chief of Police. To my surprise, they all replied to my email immediately and within days, I had meetings set up with all three of them. They listened intently and completely understood the concern. They agreed to a plan that would entail me creating training materials so that I could teach the entire White Plains, New York Police Force about Tourette and more broadly, about how officers can more successfully interact with members of the community who have Tourette or other neuro-developmental disorders.

Within a month, I had piloted this training program with the supervisors and leadership within the Police force. And by the end of Spring 2021, all officers in the city of White Plains had been through my training. The training included a video presentation given by me, as well as a follow up question and answer session. The program was so successful that I was asked to attend the Westchester County Training Academy’s new recruit training session. I’m now part of that County-level new recruit training for each incoming class.

Clearly, I am pretty lucky to live in a city (and a county) with such open minded and supportive leadership. So, what is the take-away here and why am I writing about it in this blog? The message I want to impart is that no matter what disability affects you, you too can make an impact on your community. We cannot expect the world at large to know what it is we go through each and every day and so the responsibility falls to us to educate and advocate. If we want to help ensure we are treated the way we want to be treated, we need to provide people with more information and guide them. Not everyone will be as receptive as the White Plains Police Department and the Westchester Police Academy, but that should not deter us from persisting in these efforts.

So what do I want the world to know about Tourette Syndrome?

  • Tourette Syndrome is Neurodevelopmental. Neuro means that it occurs in the brain and nervous system. Developmental means that Tourette Syndrome occurs and changes as the brain and nervous system grow.
  • Tourette Syndrome affects all races, ethnicities, genders, and ages and is a lifelong condition; there is no cure and no medication that works effectively and consistently.
  • Motor and vocal tics are completely involuntary: we cannot control them. Sometimes, we might be able to suppress a tic in the moment, but we cannot always do this and if we ARE successful, there are consequences. Think of suppressing a tic like blowing air into a balloon; if you keep blowing air in, eventually the balloon pops. This is the same thing with our tics: eventually all of the tics we have been suppressing need to come out and they usually are released even stronger and worse than they would have been.
  •  Tourette Syndrome is more common than you think. 1 out of every 100 children between the ages of 5 and 17 in the US has Tourette Syndrome or another Tic Disorder. About half of the children in the US with Tourette Syndrome go undiagnosed.
  • Coprolalia is the involuntary utterance of words or phrases that can be obscene or socially inappropriate and is the part of TS that the media makes fun of the most. In reality, only 1 in 10 individuals present with this type of tic.
  • The most consistent thing about Tourette is that it is completely inconsistent (from one person to the next, but also from one minute to the next for the same person).

And, what would I like the world to do differently when interacting with someone with Tourette Syndrome?

  • Please stop using Tourette Syndrome as a punchline, a slur or a joke. And if you hear someone else doing so, speak up.
  • If you see someone who is tic-ing, please do not stare. Feeling like people are watching is stressful and can make it worse.
  • If you see someone who is having a complex tic episode, kindly ask them if they need help. If they seem unable to respond to you in the moment, tell them you are here to help and would like to try to ask them questions. Start by asking them if they can blink. If they can, tell them that blinking can be the way they say “Yes.” Ask them if they can close their eyes and keep them closed. If they can, tell them that shutting their eyes can be the way they say “No.” You now have found a way to communicate!
  • If someone is trying to speak and their tics are getting in the way of their sentences, let them finish what they have to say without interrupting them.

As you can tell, I take Tourette Advocacy very seriously. I know that I am confident and articulate, with strong writing skills and clear public speaking skills. Not everyone with a neuro-developmental disability has these particular strengths. And so, I do what others often cannot. I have made it my mission to advocate and educate about Tourette Syndrome, so that I can change the way the world views us, teach people how to interact with us and hopefully instill a little more kindness, compassion, and patience when others meet someone with TS.

Your Disability Doesn’t Define You, Or Does It?

Creating a self-identity is very complicated, particularly when you have a disability. How do you embrace and own your disability without letting your disability define you? I seem to be collecting disabilities like they are baseball cards lately. So much of my daily life revolves around having these disabilities and the ensuing medical complications. However, I am not my disabilities. They are a big part of who I am, but they do not define who I am.

There are many parts that affect who I am as a whole, such as school, my friends, and my personal wants, needs, and overall opinions. I work hard to make sure that I am comfortable with how I present myself and how I identify in the outside world. I do not get to choose whether or not I have a disability, or even which disabilities I have, but I do get to choose so many other aspects of my identity. And, I get to choose how I wear my disability. Personally, I wear all of my disabilities with confidence, so that the patchwork quilt of my identity cushions the parts over which I have no control.

When I was younger, I had motor and vocal tics. I made involuntary movements and noises. People would ask me if I was okay and I would respond, “Yes, it’s just this thing I do.” Having Tourette Syndrome as my main disability means that I cannot hide it. As I have gotten older, my motor and vocal tics have become more pronounced. They are often front and center and provide a “preview” of me before I even get a chance to properly introduce myself. So, how do I control the narrative? I choose to be outgoing. In a family of introverts, I am the extrovert. I’m totally fine attending a party where I only know the person who invited me. I put myself out there and am happy to go up to strangers to make conversation in such settings. I have a lot to say and being talkative works to my advantage. Frankly, THAT part of my self-identity allows me to push past the first impression my Tourette gives off. The “tic-ing” guy instead is replaced with the “friendly, affable” guy.

I also choose to be an open-minded, non-judgmental person. I’ve had the same two best friends since I was 5 years old. Of course, we have things in common. But, we are also quite different and we struggle with different things. They have always been supportive of me, despite my disabilities. And, in return, I too accept them for who they are. My mom has an expression she often uses: “It’s not my story to tell.” This is why she is a good confidant. I feel the same way about other people. This is a big piece of my self-identity.

I often struggle with emotional regulation. I feel things deeply – both positive emotions and challenging ones. This is a co-occurring condition that often comes with having Tourette. Part of not letting my disability define me is trying to find the positive side to it. For example, I am an empath. Being so in touch with my own feelings helps me connect with others because I can really feel, understand and have compassion for what others are going through. Would I be an empath if I didn’t have Tourette?  Being someone who can relate to the emotions of others is a really integral part of my self-identity. I didn’t choose TS, but I do choose to embrace this superpower it brought with it.

Can you guess my favorite hobby? It is playing Dungeons & Dragons. I could pontificate for hours about why D&D is so much fun and why I wish it were real. But, at the root of it, I think about what it allows me to do. I get to create, from scratch, the environment, character and identity of this fantasy world. In my real life, I get to mold and shape my self-identity BUT there are pre-existing conditions. It is important for me to keep reminding myself that while I didn’t get to choose the fact that disabilities are part of my identity package, just like in D&D, I DO get to choose the other parts that round me out. And, maybe the positive side effects of my disabilities are as important and integral to my self-identity as the aspects that I get to control.

Self-identity is a journey and my journey to date has me realizing that my disabilities DO define me, but that is okay because they aren’t the only things that define me. And maybe, just maybe, I wouldn’t be the warm, open minded, confident, gregarious person I am today without them.

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