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Secrets

Secret

Today I am going to tell you something. Most people in marginalized populations know it to be true, but I think it needs to be made clear for everyone. So I’m going to clue you in. Only this secret is something you should share with everyone: your bank teller, your estranged friend in New Zealand, the friend you eat pesto pasta with every Tuesday afternoon, even your chinchilla Fred.

The secret is: the hostility towards me, and the people like me, is not going to get anyone anyplace. I know the rationale. I have a disability, and the disability I have is labeled “The Swearing Disorder.” The jokes about it have been virtually left alone by the social justice movement. Online and in pop culture, people are free to say the most offensive, uneducated statements about it. The influence of TV and social media paves the way for these thoughts to come into real-world situations, where they are turned to words and actions. We all have to feel like we are better than someone, right? And I’m right here.

In the past years, months, and weeks, people have mocked my tics, told me my ambitions were laughable, tried to derail my career path, and just been overtly rude. My very being here is a joke or an offense to them. But the thing is–these people are not going to get ahead by showing their prejudice towards me. As the world moves forward, this way of thinking is going to fall by the wayside. Soon, these thoughts and actions will be unacceptable–even in the case of Tourettes. We’ve seen it with movements like “Spread the Word to End the Word,” which lead to the passing of Rosa’s Law in 2010. Rosa’s Law was unanimously passed in both the US House and Senate, by the way. The legislation removes the words “mental retardation” and “mentally retarded” from federal laws. Additionally, the movement greatly removed the “r” word from the American vocabulary. A google trend search on the term “mentally retarded” results in the following graph, where 100 means peak interest, 50 means 50% as popular as the peak, and 0 means less than 1% as popular as the peak:

 

m r word

Of course, this movement has not ended discrimination towards individuals with different abilities, but I think it is certainly a start. The way we speak affects the way we think and create culture (see WSJ, Mental Floss, etc. for more details). The movement also made popular the idea that it is unacceptable to use the “r” word as an insult or a descriptor, which is a huge victory for respect and compassion.

The path to end the hostility towards people with Tourette’s will look different, for a couple of reasons. For starters, there is no one word to rally against which can be the backbone of the movement. We are pushing against a host of insults and untrue claims; it is hard to choose what to focus in on. Secondly, Tourette Syndrome is, for lack of a better term, distilled down compared to fight to end the “r” word. It is a specific disorder, affecting only 1 out of 360 children in the US (CDC). And as those kids get older, the number gets fewer, as many “outgrow” the disorder. For us, the path towards kindness and understanding is likely going to include lots of re-education and re-defining the social norm. Our journey will be different and long, but that does not mean we should not have it.

Personally, I hurt thinking about when I was told I would never make it at a big university, that I could never live in a town far away, and that I was not beautiful. I resent being put on drugs that stole away two years of my life, and getting unsatisfactory care because doctors choose to experiment with my meds. My heart aches at the memory of being mocked for years by someone I trusted.

I am tired of being told that I am less than a full human because I tic.

Welcome to Tic Tock, where whether it is just me, or a hundred people, there is a movement. A movement to spread the message that no one needs to be superior to be happy. A movement to love each other for who we are, not for what our bodies do. And here, that is not a secret.

–KMJ

 

 

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My Advocates

Sorry.jpgUpdate on MedChange2017 for those interested: I am trying out the “new-and-improved” version of the medication that I like, so the Great Olanzapine Lessening has been postponed a week or so (it is not the best idea to do two things at once). So far, no major changes to speak of, which I think is to be expected (and is welcomed).

Today I want to speak about the importance of advocates, and for those who know me, my favorite way to talk about anything is through the lens of a story.

When I was 5 (give or take, I’m really unsure of the timeline here), my family was having their annual Thanksgiving Day dinner (again, I think it was Thanksgiving, the exact details about the actual event are fuzzy). For those who have never been to a Thanksgiving Day dinner hosted by my family, there is usually lots of grown-up food, football, and loud talking. None of which I was particularly interested in at 5. And certain members of my family who were similar in age agreed. So we ran off to the computer-room-to-be (there was no computer there yet…oof I’m old) to play a board game. We chose Sorry!, perhaps the meanest child’s game the world has ever invented. Like come on, the name of the game is a sarcastic Sorry! Ugh.

Anyways, we began playing the game, and for those of you who do not remember the game, in order to put your piece on the playing board, you have to roll a certain number on the dice. We went around a few turns and my family members respectively rolled the number and got on the board. But I did not. Turn after turn after turn I did not roll the number, and so I could not start playing the game. And yes, I started feeling really left out as my family members played Sorry! and had fun while I sat on the sidelines, unable to join in because of a rule that I could not change.

I obviously did not realize how incredibly metaphoric this situation was until I was much older. The idea of an arbitrary rule allowing some to participate in activities, but not others. The idea that those who could not participate would try again and again to live up to the rule, but that they would ultimately fail. How do people in the differently-abled community ever get past social rules that they themselves are unable to change? A more real example: How do I, as a person with Tourette’s, make “Tourette’s Guy” and all of the other Tourette’s jokes on the internet go away?

I certainly do not want to devalue my own empowerment. This blog itself is a way for me to speak. And there are many, many other outlets! But after I was playing Sorry! for quite some time, stuck at the beginning and feeling very sad (and admittedly getting upset, as 5-year olds do), an advocate came into the room. She suggested that I be allowed to start the game, that I be allowed a level playing field with my other family members. This was met with some resistance, but my advocate stood firm, and eventually I was allowed to play.

Advocates allow us to move forward when we are stuck in a place where the rules are unfair, or the people are harsh. When we have done everything we can, but the situation is not one that is respectful of those who are like us. When we need an outsider.

We have all had advocates, whether it be our parents, teachers, friends, or other people in our lives. This particular entry is dedicated to all of those individuals who have advocated for me. Thank you for seeing past the tics, and seeing the person that I am.

–KMJ