The things missing from the discussion about Tourette Syndrome

In regards to the BAFTA awards situation where John Davidson ticced the N word (among other types of slurs and offensive phrases) while black people were in attendance and on stage (such as Michael B Jordan and Delroy Lindo) while promoting his film on Tourette's called "I Swear", and as someone who has Tourette's myself, there are some things that need to be talked about. What is missing from every conversation I'm seeing about this is the acknowledgement that Tourette's is one of the most stigmatized disorders, specifically because of things like this, and it leads to people with Tourette's having a much higher rate of suicidal thoughts, suicide attempts, completing suicide, self-hatred, shame, feelings of isolation, feeling like you have to hide from society, and depression than people who don't have Tourette's. People who have Tourette's have always been oppressed, including hundreds of years worth of history of being thrown in insane asylums and given lobotomies because we were assumed to be insane, being given exorcisms because we were assumed to be possessed by demons, and being killed for it. We were killed in eugenics and the Holocaust because people considered us "defective" human beings. 

Even the way Tourette's was first studied shows the systemic oppression we face. In 1825, the first recorded case was a noblewoman named Mme de D (the Marquise de Dampierre), and they only started studying her because they said that her coprolalia tics, "were obviously in stark contrast to the lady's background, intellect, and refined manners". Which means there was most likely a long history of people who were considered unimportant or poor having tics but no one bothered to look into it because it would have been considered expected for the so-called "dregs of society". 

Today, it still results in lots of hate crimes, violence, and murder, because people justify these things so much easier if they claim you were being racist, sexist, homophobic, erratic, weird, on drugs, psychotic etc. The only times anyone talks about Tourette's in movies and scripted TV is to make us the butt of a joke to dehumanize us. We haven't even begun to have a societal awakening where people who don't have Tourette's rally around us to provide us with support and help inform others. There are no marches for us, no protests, and no calls for acceptance from general society. We don't have anything like Black Lives Matter, the Women's March, Pride Parades, or Autism Acceptance Day. Someone can beat up someone who has coprolalia by saying, "Well they were being racist so they deserved it and I was just defending myself." We even have to deal with the anti-vax movement going after us because even though Tourette's is hereditary and caused by specific genes that they have found, mothers who have kids with Tourette's don't want to admit to themselves that they might have been the reason as to why their kid has tics, and so they blame vaccines instead and go on campaigns to try to get rid of them to get rid of people with Tourette's. 

Being told that such a fundamental part of who you are as part of your disability is inherently weird, harmful, offensive, oppressive, racist etc. and that you should apologize for it, be censored, not exist in public spaces, and be escorted out of the room, weighs on someone and directly causes them to hate themselves and kill themselves. Especially given that the way coprolalia works is that it forces you to say things you specifically disagree with, so it hurts someone's heart already that they have to say these things. Tourette's is essentially neurons misfiring in your brain that cross wires. Think of a wire in your brain labelled "these are the things I don't want to do, don't believe, and don't want to say" that should be plugged into an outlet labelled, "this is not what I am going to do or going to say" but is instead plugged into an outlet that is labelled, "this is what I am going to do or going to say." Coprolalia in particular focusses on the taboo and things you fundamentally disagree with. So an anti-racist activist would be far more likely to say racist slurs as a tic specifically because they fundamentally disagree with them. An actual racist wouldn't, because they view them as regular language as opposed to something bad. This is why black people and other people of color often have racist slurs as tics. Anyone claiming "well he said it, so it was in his head, and therefore part of his vocabulary, and therefore he agrees with it" is both fundamentally misunderstanding how coprolalia works and that it's literally the exact opposite, as well as contributing to the societal oppression of people with Tics.

I haven't had exactly coprolalia but I have had related tics. When I was little, one of my first tics was my brain forcing me to say "no" to things when I desperately wanted to say "yes". There are a few things I really wanted to have or do that when asked, my brain forced me to say no, and that hurt me deeply. It feels like your brain is betraying you. Even after all this time, I still remember that and feel hurt by it. That is similar to how coprolalia affects people. Tics are just as involuntary as breathing, hiccupping, and sneezing. The way I describe tic energy is imagine taking the deepest breath you could ever possibly take and holding it for the longest you could ever possibly hold it. In your last few moments when your brain is screaming at you that you absolutely have to breathe or else you would die, that is what it feels like to have to tic. It is literally no different from breathing for us.

So while I think it's always good to have discussions on the history of racist slurs and empathy for people who feel harmed by them whenever they hear them no matter why they are said, I see it as one sided in that a lot of people are having those discussions now yet I'm not seeing that happen the other way with acknowledgement of the history of the oppression of people with Tourette's as a whole plus acknowledgement of the harm being done in regards to expecting someone to see an inherent part of who they are as inherently harmful which directly leads to suicide. There is a long history of that stigmatization causing harm. Especially given that tics tend to happen all throughout the day and every day throughout someone's life. Having to constantly be told that you are harming someone and need to apologize even if it is unintentional and is just a reflex, is dehumanizing, exhausting, and mind-numbing. 

Imagine if people told a black person 10 times a day for the rest of their life that their blackness was so harmful to white people, and so offensive to everyone around them, that they needed to apologize for the harm they have caused even if it was unintentional, and they couldn't escape being told that 10 times a day, 3,650 times a year, 36,500 times a decade. If that happened, people today would say that the fact that the white person felt harmed was a microaggression and a form of bigotry because it clearly meant that they didn't understand black people well enough or carried with them some sort of internal bias against them even if they didn't mean to or weren't aware of it. Well the same goes for this. People feel hurt because they haven't done the work to fully learn about and understand Tourette's, why and how it happens, and the deep and harmful impact it has on the person themselves.

And if that situation did happen, that would cause them to feel like a burden on society and that society would be better off if they were dead. That is the feeling that causes people to attempt suicide. If someone is told they are always harmful, they will start to feel that it is for the greater good that they no longer exist, because they don’t want to be harming people and clearly their existence causes so much harm to everyone around them. The shame runs so deep because of the stigma from society. If society learned to not tell us we are inherently harmful and weird freaks, and instead gave us support every time we said or did something, so much harm could be avoided.

Because of how extremely repetitive Tourette's is, it has a greater impact than many other things. You *constantly* have to live with it, *constantly* have to feel like a burden on society, *constantly* have people say your existence is triggering to them and you should apologize and that intent doesn't matter because you still have to apologize for the harm caused. So anyone telling someone these things in regards to this situation is adding to the systemic oppression that people with Tourette's face. And while unintentional, that is some very real and deep harm caused. But the difference is that people have a choice to do that. They can learn better and they can do better. People with Tourette's can't, because it is something our brains force us to do. So people need to understand the difference between unintentionally causing harm because of something you can't control, and unintentionally causing harm because of something you can control through learning.

Feeling harmed by Tourette's can go away if you learn and accept why it happens. As someone who is a part of various minority groups, I don't feel harmed by coprolalia because I so thoroughly understand what it means and how it happens. For instance, as a female and a feminist, I strongly believe that no one should say any of the dozens of sexist slurs no matter their sex or gender, and they should be abolished and considered on the same level as every other type of slur. I have long noticed that people feel so much more comfortable saying sexist slurs than anything else that is harmful and I think it's good evidence of the extreme systemic misogyny in society. They have been said to me endless times, and used to justify harming me in endless ways including dangerous ways. But, if a male with Tourette's said a string of sexist slurs toward me and told me he was going to rape and kill me, I would only feel offended until the moment I found out he had Tourette's. If I didn't know, I not only would feel extremely offended, but also terrified and would probably run away in fear of my life. But if I did know, I would feel nothing, because I understand that it is no different than breathing to him and that he is more likely to be a genuine feminist than other people because of it, since Tourette's latches on to the things you don't believe in or want to do or say.

So the only real answer here to help both sides is for people who don't have Tourette Syndrome or coprolalia to watch as many documentaries and Tourette's influencers and read as many books and articles as they can, to see if they can fully understand it well enough that they don't feel harmed by it and don't demand apologies or censorship or excommunication from society from people because of it and thereby add to that stigma, oppression, and high suicide rate. The harm caused to the Tourette's community as a whole and especially to John Davidson has been so extreme the last few days and there do need to be apologies because of it. But this situation is the best example of how people with Tourette's are looked at as extreme outcasts and hated, and how no one wants to meet our needs, so I don't think that will happen any time soon. I hope at the very least, people become more educated on the condition and learn to do better for the future.