> In an interview with Variety, Davidson said that Bafta had told him and the film’s backers StudioCanal “that any swearing would be edited out of the broadcast”. He said: “I have made four documentaries with the BBC in the past, and feel that they should have been aware of what to expect from Tourette’s and worked harder to prevent anything that I said – which, after all, was some 40 rows back from the stage – from being included in the broadcast.”
>Davidson added: “I remember there was a microphone just in front of me, and with hindsight I have to question whether this was wise, so close to where I was seated.”
vanillablue_ on
I have Tourette’s. This whole thing has been so painful to watch. We can support disabled people and Black people at the same time. So many seem to think its an either or situation.
Funmachine on
I generally think if they’d edited it out there still would have been backlash about BBC covering it up.
PhantomOfTheNopera on
He should sue them. They had two hours to edit it out. If they could remove a pro-Palestine speech and other times he shouted swears, they could have removed this. At best, it looks like they didn’t care about the harm it would cause just so they could get views, at worst it seems malicious.
eminusx on
John did an interview yesterday and said he had also reached out to MBJ and Delroy Lindo, im posting his interview here because I think its incredibly important to learn and understand:
# Many people’s only frame of reference for Tourette’s syndrome comes from stereotypes, particularly the idea that it’s “just swearing” or saying slurs for shock value. How do you describe the condition to someone starting from that place?
Very often, the media focuses on my particular type of Tourette’s, which is called coprolalia — the involuntary use of obscene or offensive language. This symptom affects 10% to 30% of people with the condition and is not a criterion for diagnosis. However, it is one of the hardest tics to manage and can be very distressing for those living with it. Many individuals report discrimination and isolation as a result.
I have been physically beaten to within an inch of my life with an iron bar after ticking a comment to a young woman whose boyfriend and accomplice ambushed me one evening.
The real challenge isn’t the tics themselves, but the misconceptions surrounding them. Understanding the full range of Tourette’s helps reduce stigma and supports everyone living with the condition.
When socially unacceptable words come out, the guilt and shame on the part of the person with the condition is often unbearable and causes enormous distress. I can’t begin to explain how upset and distraught I have been as the impact from Sunday sinks in.
# In the moment before a vocal tic, do you know what’s coming, or does it only become clear after the fact?
Depending on the severity of the condition, people either have an ability to suppress what they are saying for short periods of time, or they don’t. Suppressing can be compared to taking a full bottle of Coca-Cola and shaking it each time you feel the need to tic. Before long, the pressure is so intense it has to be released, and it bursts out — and on occasion, that can lead to a tic attack.
For me personally, my brain works so fast and the tics have always been so aggressive that I have no idea when they are coming or what they will be. I have almost no ability to suppress, and when the situation is stressful, I have absolutely no choice but to tic — it simply bursts out of me like a gunshot.
# When a tic involves a slur or taboo phrase, what’s the single most important thing you want people to understand about the distinction between intent and involuntary neurological response?
I want people to know and understand that my tics have absolutely nothing to do with what I think, feel or believe. It’s an involuntary neurological misfire. My tics are not an intention, not a choice and not a reflection of my values.
Those who have seen “I Swear” will understand this. My tics have said and done things over the years that have caused huge pain and upset — punching Dottie [my second mother] in the face is a prime example. Dottie is someone I love dearly. I would never, ever want to hurt her. I have even punched her in the face when she was driving at speed, almost causing a head-on collision.
Tourette’s can make my body or voice do things I don’t mean, and sometimes those tics land on the worst possible words. I want to be really clear that the intent behind them is zero. What you’re hearing is a symptom — not my character, not my thought, not my belief.
Tourette’s can feel spiteful and searches out the most upsetting tic for me personally and for those around me. What you hear me shouting is literally the last thing in the world I believe; it is the opposite of what I believe. The most offensive word that I ticked at the ceremony, for example, is a word I would never use and would completely condemn if I did not have Tourette’s.
I am often triggered by what I see and/or what I hear, and this part of the condition is called echolalia. For example, when the chair of BAFTA started speaking on Sunday, I shouted, “Boring.” On Sunday, Alan Cumming joked about his own sexuality and, when referencing Paddington Bear, said, “Maybe you would like to come home with me, Paddington. It wouldn’t be the first time I have taken a hairy Peruvian bear home with me.” This resulted in homophobic tics from me and led to a shout of “pedophile” that was likely triggered because Paddington Bear is a children’s character.
I would appreciate reports of the event explaining that I ticked perhaps 10 different offensive words on the night of the awards. The N-word was one of these, and I completely understand its significance in history and in the modern world, but most articles are giving the impression I shouted one single slur on Sunday.
# What went into the decision to attend in person, and what conversations, if any, did you have with BAFTA or the BBC in advance about how to support you and other guests?
This was an awards ceremony that featured six nominations connected to a film that told the story of my life living with Tourette’s. This has been a three-year project for me, working with the writer, director, production and cast. I am also an active executive producer on the film. I had as much right to attend as anyone.
I also knew that as voting members, most people in the audience would have seen “I Swear” and would be well prepared, well educated and well informed about my condition.
After living with Tourette’s for almost 40 years, I was aware of how physically and mentally difficult it would be for me to attend. I also had a serious heart operation only five weeks ago. I put every ounce of energy and concentration into being able to attend.
I was thrilled to see that on the night, everyone — including some of the most well-respected and famous people from the film world — cheered at my name and applauded. I stood and waved to show my appreciation and acknowledged that this was a significant moment in my life, finally being accepted. It started as one of the most memorable experiences of my life.
StudioCanal were working closely with BAFTA, and BAFTA had made us all aware that any swearing would be edited out of the broadcast. I have made four documentaries with the BBC in the past, and feel that they should have been aware of what to expect from Tourette’s and worked harder to prevent anything that I said — which, after all, was some 40 rows back from the stage — from being included in the broadcast.
As I reflect on the auditorium, I remember there was a microphone just in front of me, and with hindsight I have to question whether this was wise, so close to where I was seated, knowing I would tic.
# What was going through your mind in the moment you realized the room could clearly hear your tics?
Initially, my tics were noises and movements, but the more nervous I got, the more my tics ramped up. When my coprolalia tics came out, my stomach just dropped. As always, I felt a wave of shame and embarrassment hit me all at once. You want the floor to swallow you up. I wanted to disappear. I wanted to hide — just get away from all the eyes.
I was hoping people would understand. My mind was saying: These people have seen the film. They will know I can’t help this. They will know it’s not me. This is exactly why we are here. I was saying in my head, “Please don’t judge me. Please understand this isn’t who I am.”
I was trying to calm myself down, to breathe, but ultimately, I made the decision to leave to not cause any more upset. BAFTA found a private room with a monitor where I watched the rest of the awards.
The awards were, in all honesty, just a heightened version of my everyday life and are the reason why, for many periods in my life, I have been fearful of leaving the house — because I am so anxious and nervous about what I might tic and what people’s reaction might be.
# You’ve spent years educating and campaigning around Tourette syndrome. Where have you seen real progress — and where does misunderstanding persist most stubbornly?
Sometimes you feel like you are making real progress in educating people on the condition, but there is so much more needed. Comments following the BAFTAs where people have said things like, “I need to stay inside,” “I wouldn’t say these things unless I thought them,” and “I am racist deep down” are deeply upsetting for me, and show there is still so much to do.
The negative responses only go to show the importance of people seeing the film and understanding more about an incredibly complex neurological condition. I had an expectation that the BBC would physically control the sound at the awards on Sunday. I was so far from the stage. From the lack of response from the early presenters to my tics, and with no one turning around to look at me, I assumed, like everyone else, that I could not be heard on the stage.
The only time I became aware that my tic had reached the stage was when Delroy and Michael B. Jordan appeared to look up from their role as presenters, and soon after that I decided to leave the auditorium.
# Finally, is there any language you’d ask us to avoid — words like “outburst” or “uncontrollable” — in favor of something more accurate?
It’s important not to use the word “disability.” This is considered a “condition” by the Tourette’s community. I would prefer phrasing such as: “I have lived with the condition …”
Kevin2355 on
You got set up my guy. They were betting on this happening
6 Comments
> In an interview with Variety, Davidson said that Bafta had told him and the film’s backers StudioCanal “that any swearing would be edited out of the broadcast”. He said: “I have made four documentaries with the BBC in the past, and feel that they should have been aware of what to expect from Tourette’s and worked harder to prevent anything that I said – which, after all, was some 40 rows back from the stage – from being included in the broadcast.”
>Davidson added: “I remember there was a microphone just in front of me, and with hindsight I have to question whether this was wise, so close to where I was seated.”
I have Tourette’s. This whole thing has been so painful to watch. We can support disabled people and Black people at the same time. So many seem to think its an either or situation.
I generally think if they’d edited it out there still would have been backlash about BBC covering it up.
He should sue them. They had two hours to edit it out. If they could remove a pro-Palestine speech and other times he shouted swears, they could have removed this. At best, it looks like they didn’t care about the harm it would cause just so they could get views, at worst it seems malicious.
John did an interview yesterday and said he had also reached out to MBJ and Delroy Lindo, im posting his interview here because I think its incredibly important to learn and understand:
# Many people’s only frame of reference for Tourette’s syndrome comes from stereotypes, particularly the idea that it’s “just swearing” or saying slurs for shock value. How do you describe the condition to someone starting from that place?
Very often, the media focuses on my particular type of Tourette’s, which is called coprolalia — the involuntary use of obscene or offensive language. This symptom affects 10% to 30% of people with the condition and is not a criterion for diagnosis. However, it is one of the hardest tics to manage and can be very distressing for those living with it. Many individuals report discrimination and isolation as a result.
I have been physically beaten to within an inch of my life with an iron bar after ticking a comment to a young woman whose boyfriend and accomplice ambushed me one evening.
The real challenge isn’t the tics themselves, but the misconceptions surrounding them. Understanding the full range of Tourette’s helps reduce stigma and supports everyone living with the condition.
When socially unacceptable words come out, the guilt and shame on the part of the person with the condition is often unbearable and causes enormous distress. I can’t begin to explain how upset and distraught I have been as the impact from Sunday sinks in.
# In the moment before a vocal tic, do you know what’s coming, or does it only become clear after the fact?
Depending on the severity of the condition, people either have an ability to suppress what they are saying for short periods of time, or they don’t. Suppressing can be compared to taking a full bottle of Coca-Cola and shaking it each time you feel the need to tic. Before long, the pressure is so intense it has to be released, and it bursts out — and on occasion, that can lead to a tic attack.
For me personally, my brain works so fast and the tics have always been so aggressive that I have no idea when they are coming or what they will be. I have almost no ability to suppress, and when the situation is stressful, I have absolutely no choice but to tic — it simply bursts out of me like a gunshot.
# When a tic involves a slur or taboo phrase, what’s the single most important thing you want people to understand about the distinction between intent and involuntary neurological response?
I want people to know and understand that my tics have absolutely nothing to do with what I think, feel or believe. It’s an involuntary neurological misfire. My tics are not an intention, not a choice and not a reflection of my values.
Those who have seen “I Swear” will understand this. My tics have said and done things over the years that have caused huge pain and upset — punching Dottie [my second mother] in the face is a prime example. Dottie is someone I love dearly. I would never, ever want to hurt her. I have even punched her in the face when she was driving at speed, almost causing a head-on collision.
Tourette’s can make my body or voice do things I don’t mean, and sometimes those tics land on the worst possible words. I want to be really clear that the intent behind them is zero. What you’re hearing is a symptom — not my character, not my thought, not my belief.
Tourette’s can feel spiteful and searches out the most upsetting tic for me personally and for those around me. What you hear me shouting is literally the last thing in the world I believe; it is the opposite of what I believe. The most offensive word that I ticked at the ceremony, for example, is a word I would never use and would completely condemn if I did not have Tourette’s.
I am often triggered by what I see and/or what I hear, and this part of the condition is called echolalia. For example, when the chair of BAFTA started speaking on Sunday, I shouted, “Boring.” On Sunday, Alan Cumming joked about his own sexuality and, when referencing Paddington Bear, said, “Maybe you would like to come home with me, Paddington. It wouldn’t be the first time I have taken a hairy Peruvian bear home with me.” This resulted in homophobic tics from me and led to a shout of “pedophile” that was likely triggered because Paddington Bear is a children’s character.
I would appreciate reports of the event explaining that I ticked perhaps 10 different offensive words on the night of the awards. The N-word was one of these, and I completely understand its significance in history and in the modern world, but most articles are giving the impression I shouted one single slur on Sunday.
# What went into the decision to attend in person, and what conversations, if any, did you have with BAFTA or the BBC in advance about how to support you and other guests?
This was an awards ceremony that featured six nominations connected to a film that told the story of my life living with Tourette’s. This has been a three-year project for me, working with the writer, director, production and cast. I am also an active executive producer on the film. I had as much right to attend as anyone.
I also knew that as voting members, most people in the audience would have seen “I Swear” and would be well prepared, well educated and well informed about my condition.
After living with Tourette’s for almost 40 years, I was aware of how physically and mentally difficult it would be for me to attend. I also had a serious heart operation only five weeks ago. I put every ounce of energy and concentration into being able to attend.
I was thrilled to see that on the night, everyone — including some of the most well-respected and famous people from the film world — cheered at my name and applauded. I stood and waved to show my appreciation and acknowledged that this was a significant moment in my life, finally being accepted. It started as one of the most memorable experiences of my life.
StudioCanal were working closely with BAFTA, and BAFTA had made us all aware that any swearing would be edited out of the broadcast. I have made four documentaries with the BBC in the past, and feel that they should have been aware of what to expect from Tourette’s and worked harder to prevent anything that I said — which, after all, was some 40 rows back from the stage — from being included in the broadcast.
As I reflect on the auditorium, I remember there was a microphone just in front of me, and with hindsight I have to question whether this was wise, so close to where I was seated, knowing I would tic.
# What was going through your mind in the moment you realized the room could clearly hear your tics?
Initially, my tics were noises and movements, but the more nervous I got, the more my tics ramped up. When my coprolalia tics came out, my stomach just dropped. As always, I felt a wave of shame and embarrassment hit me all at once. You want the floor to swallow you up. I wanted to disappear. I wanted to hide — just get away from all the eyes.
I was hoping people would understand. My mind was saying: These people have seen the film. They will know I can’t help this. They will know it’s not me. This is exactly why we are here. I was saying in my head, “Please don’t judge me. Please understand this isn’t who I am.”
I was trying to calm myself down, to breathe, but ultimately, I made the decision to leave to not cause any more upset. BAFTA found a private room with a monitor where I watched the rest of the awards.
The awards were, in all honesty, just a heightened version of my everyday life and are the reason why, for many periods in my life, I have been fearful of leaving the house — because I am so anxious and nervous about what I might tic and what people’s reaction might be.
# You’ve spent years educating and campaigning around Tourette syndrome. Where have you seen real progress — and where does misunderstanding persist most stubbornly?
Sometimes you feel like you are making real progress in educating people on the condition, but there is so much more needed. Comments following the BAFTAs where people have said things like, “I need to stay inside,” “I wouldn’t say these things unless I thought them,” and “I am racist deep down” are deeply upsetting for me, and show there is still so much to do.
The negative responses only go to show the importance of people seeing the film and understanding more about an incredibly complex neurological condition. I had an expectation that the BBC would physically control the sound at the awards on Sunday. I was so far from the stage. From the lack of response from the early presenters to my tics, and with no one turning around to look at me, I assumed, like everyone else, that I could not be heard on the stage.
The only time I became aware that my tic had reached the stage was when Delroy and Michael B. Jordan appeared to look up from their role as presenters, and soon after that I decided to leave the auditorium.
# Finally, is there any language you’d ask us to avoid — words like “outburst” or “uncontrollable” — in favor of something more accurate?
It’s important not to use the word “disability.” This is considered a “condition” by the Tourette’s community. I would prefer phrasing such as: “I have lived with the condition …”
You got set up my guy. They were betting on this happening