I didn’t find out I had Tourette Syndrome from a doctor — I found out from a 20/20 special.
When I was in school, a young Black kid who was constantly speaking out and acting out in class, my mother and I didn’t know what I had until we saw people interviewed about their condition on television, which led to us seeking and getting a formal diagnosis.
Now, my position as the second-ranking elected official in New York City, the highest ranking Black leader in city government, means I’m in a very visible space with a very visible disability.
My first exposure to Tourette Syndrome came through the TV screen, and now, the BAFTA broadcast on the BBC ensured that many more people can say the same.
When I heard the N-word thrown at Michael B. Jordan and Delroy Lindo, it was all too familiar from every side. As a Black government leader, I’ve been called the N-word constantly by trolls. As one of the 20 percent of people with Tourette’s who show coprolalia — the involuntary outburst of obscenities — I’ve said the N-word many times more.
Tourette’s, coprolalia specifically, is not about having a lack of a filter. It’s an involuntary compulsion that forces you to specifically have the most intrusive thought or say the worst intrusive thing, and sometimes the more inappropriate to the setting, the stronger the compulsion. If I were in a library with a sign forbidding shouting, it might specifically trigger me to shout.
It’s like a sneeze. There’s not much you can do to prevent it. Sometimes you can augment your outbursts — say part of the word quietly, modify it to disguise it — but not everyone can do that and not all the time. I find ways to cover my verbal tics, by changing volume or pronunciation. But it’s not easy — there’s a real cost, and it can cause both pain in the moment, and more aggressive outbursts later. The only time my own tics go away, surprisingly, is when I’m engaged in my first love — acting.
My experience is my own, but I hope it helps others. I want people to know more about this condition, I want people with Tourette’s to be able to feel comfortable in public spaces, and I want society to understand. I want kids who are being punished, mocked or excluded because of their condition to be met with empathy, and I hope that’s the result of this BAFTA controversy.
We have to have grace and consideration for the person with the disability — especially someone there as an advocate to share about Tourette’s. We also have to have grace for Michael B. Jordan, Delroy Lindo and all of the people in the room.
All of that doesn’t mean that there was nothing to be done, or that hearing that word, in that moment, didn’t cause immense harm. As a Black man, no matter the reason, that word has power and does real damage, and we can’t minimize it. I think we can recognize that even involuntary impact, devoid of intent, can’t be ignored. Too often, the burden of empathy is placed primarily on the Black community.
Like many Black people in the public eye, I am far too familiar with what Jordan and Lindo were forced to do in that moment — show poise in the face of pain. And BAFTA and the BBC offered no real support or care for that burden.
Just as John Davidson had to approach this high-pressure situation with increased intentional care, so did BAFTA — a mandate they did not meet. They didn’t adequately prepare the room for the specific possibilities of a racial-slur outburst, and they didn’t respond with the care and attention to the people impacted by its use.
I understand anger here — on behalf of the Black artists being hit with that word, on behalf of the disability community feeling villainized and misunderstood. And I think that any anger needs to be directed at BAFTA and the BBC. I don’t know why they didn’t cut this painful moment from the broadcast. I hope it wasn’t just to generate controversy and attention, but the fact that they felt free to edit other moments — like an honoree saying “Free Palestine” — shows that they had editorial discretion and used it to silence voluntary expression, but not involuntary harm.
At the same time, if there is attention to be had, I hope it goes to constructive conversation — about what it’s like to have Tourette’s and manage these compulsions, about what it’s like to be a Black public figure and have hate speech hit you even in your most triumphant moments. And I hope that we can replace toxicity in that conversation with empathy. Because if there’s one thing Tourette’s has done for me, it’s ensured that I’m always moving — and the cultural conversation can too.
Some of my most affecting experiences in office have been when young people come up to me and say that they didn’t think they could get into government because of something about their identity — their race, their background, their disability — things that may cause a negative perception in some of the public. But my experience inspired them, and they inspired me.
I was the first elected official in the country known to have Tourette Syndrome. I’m proud to say I’m no longer the only one. And I want young people like me out there to know that your condition is a part of you, but you are not defined by it, and it doesn’t have to limit what you do — only change how you do it.
I swear.
Jumaane D. Williams, the son of Grenadian immigrants, has served as the Public Advocate of the City of New York since 2019, where he has worked to improve affordable housing, community safety, transparency and accountability. In addition to his role as the second-highest ranking elected leader in city government, he regularly performs onstage through Theater of War.