Up until a few days ago, most people gave little to no thought to Tourette Syndrome. If pressed, they would probably say something like “That’s the disease that makes people swear, right?” Now, suddenly everyone seems to have an opinion about it – what it is, how it works, whether it’s even “real…” Sadly, a large number of these opinions are woefully uninformed, with a distressingly high percentage of them being rooted in toxic, willfully ignorant, ableist bigotry; demonizing a man with a condition they don’t understand without bothering to inform themselves about his condition. The generous opinion I have about his is that it is an unfortunate by-product of a culture dumbed down by social media, resulting in a short attention span society too lazy to inform themselves, and able to share their uninformed opinions without consequence, thanks to the anonymity afforded by said social media. The more cynical opinion I have is that people refuse to inform themselves because they are afraid that actually learning about it will poke holes in their victimhood narrative. The truth, most likely, lies somewhere in between.

I have lived with Tourette Syndrome for 50 years. My first symptoms began to present as mild motor and vocal tics – shaking my head, blinking my eyes, and throat clearing/ grunting) when I was five. My parents took me to a child psychologist, neurologists, and other “experts” to find out what was wrong. My tics became more severe as I got older, and as I progressed through elementary school, they became a source of nearly constant stress and anxiety. One of the cruel ironies of TS is that the tics that are its hallmark are exacerbated by stress – leading to a vicious circle of more intense tics, which lead to more anxiety, which leads to more intense tics, lather, rinse, repeat. TS tics have a nasty habit of flaring up at the worst possible time – giving an oral report in class, talking to person you’re attracted to, a job interview, etc. My childhood tics tended to get particular bad when I was trying to concentrate in class – particularly the vocal, grunting ones. Being elementary school, of course the other kids in class would giggle and whisper. This led, on more than a few occasions, to me being sent out to sit in the hall for “being disruptive.”

When I was thirteen, my mom read an article about a doctor at the City of Hope hospital in Los Angeles named David Comings, who was doing pioneering research into a little-known behavioral disorder called Tourette Syndrome. We lived in Southern California at the time, so she called his office and made an appointment. I went along, sure that this was going to be just one more windmill-chasing expedition to see some quack who would tell us “You need to reduce his stress level.” I couldn’t have been more wrong. That one doctor visit was a life changing experience. For the first time, a doctor listened to me about my tics and explained what they were, rather than dismissing them as “the product of stress.” This guy understood that my tics were the source of my anxiety, not a product of it. . in some ways, my life is divided into “before diagnosis” and “after diagnosis.”

I had no idea just how much stress and anxiety I had been carrying, or just how much of it was from not knowing what my condition was. Finally having a name for it, and an idea of how it worked was indescribably liberating. My parents still sometimes mention the transformation that occurred in me after that diagnosis and how, while my tics didn’t come close to going away, they almost instantly dropped about 50% in intensity and became much less frequent. I year later, I was starting High School, and was able to be much more comfortable in my own skin than I had ever been in an academic setting. I was fortunate enough to have relatively mild tics that, while not invisible, were not anti-social. I still got questions, and the occasional teasing, but nothing like the bullying and judgement like I had in elementary and middle school.

All this to say that, even though I had about as easy a time with Tourette Syndrome as anyone possibly could, it was still incredibly difficult. While most days were fine, I would occasionally have rough days – an outburst in class, accidentally winking at a girl who thought I was being inappropriately flirty, classmates laughing when I had a  particularly intense tic flurry as I approached the lectern to read an essay, etc. These incidents were sometimes so mortifying that they would send me into a shame spiral that made it impossible to engage or concentrate in class. I was one of the smartest kids in school, but got poor grades because I was checked out much of the time.

So I can only imagine what life is like for someone Like John Davidson, the man who shouted the N-word at the BAFTAs. The component of TS that causes those verbal outbursts, known as Coprolalia, is one that I have the good fortune to not count among my symptoms. But even with my relatively mild experience with TS, I can understand an empathize with Mr. Davidson’s situation. I can guarantee that his first reaction, upon realizing what tic he had just had, was to hope against hope that no one had heard it, that it wasn’t to loud, maybe hoped that he had just muttered it under his breath; that’s not an illusion one can maintain in that situation for more than a few seconds. Then comes the panic-induced trauma response. I’m sure all Mr. Davidson could think of at the moment was how to shrink down to an invisible size, or find a hole to fall into and disappear.

Mr. Davidson has been criticized for not immediately apologizing to Michael B Jordan and Delroy Lindo. And now that it has come to light that he is working to apologize to them in person, the criticism is that he waited too long to do so. That’s horseshit. Someone feeling that sort of trauma is going to take a bit of time to get back to a place where they can even begin to express an apology. And it took almost no time for a ridiculous media outrage circus to grow up around the situation, with clueless celebrities like Jamie Foxx insisting that the word was not the result of TS, but what Davidson felt in his heart. While I can totally understand that the people involved would be horrified, shocked, and offended in the moment by the use of that word; after the moment was over, and the shock of it had worn off, there is no excuse for demonizing a disabled person and claiming to know what was in his heart instead of trying to understand why it happened. Grown-ass adults, with no idea what they’re talking about have made a toxic soup of this situation that could have been a teachable moment about both Tourette Syndrome and racism; how can someone be expected to make a real, meaningful apology in that environment? It totally makes sense that he would want to reach out to the actual affected people and make his apology personally to them, rather than make a performative one in the press for ignorant, ableist bigots to rip apart.

If you need a villain for this story, let’s talk about the BBC production. Davidson was seated in the 40^th row, where he placed himself to be far from the stage and avoid disrupting the show; for some reason, the BBC production staff placed a microphone near him. The show was broadcast on a delay, and many other offensive words, including “free Palestine” were bleeped out, but not this one. How many people, who just last week didn’t even know the BAFTAs existed, now have it as their primary topic of conversation? What makes this so infuriating for me is that there is, unfortunately, so much actual racism in the world that needs to be addressed, but people are opting instead for performative outrage; punching down at another marginalized person to create the illusion of real activism. The response to requests for people to educate themselves about Tourette Syndrome and better understand the situation has been a resounding “Nah…” I can only assume that the reason for people’s refusal to learn is that they are worried doing so will spoil the narrative they’ve built for themselves; it’s much easier, and gets more clicks, to just stay ignorant and keep hating…