A Day in a Life: Real Life Invisible Disability Stories from the North East
There were multiple failures on the part of the organisers, and as more and more information came to light it was hard not to feel like Davidson might have been set up to be the centre of a controversy he didn’t choose and had actively sought to avoid. At Difference, we don’t have the capacity or experience to speak to every event involving a disabled person but we were shocked at the level of misinformation, discrimination, lack of empathy, and aggression raised in the discussion and talk around this.
What the BAFTA Discourse revealed
We felt what was missing from the discourse was real disabled people talking about their experiences. And the few times we did find those people, their experiences and wisdom were dismissed or not platformed – meaning they were not given a space or opportunity to speak publicly and be heard. At least as much as other voices. We realised we had Difference’s platform and platforming disabled people’s voices and experiences was a good use of that platform.Too Many ‘Platforms’: Invisible Disability Stories North East
We felt what was missing from the discourse was real disabled people talking about their experiences, and the few times we did find those people, there experiences and wisdom were dismissed or not amplified (shared widely so more people hear it). We realised we had Difference’s platform and we want to use that space to elevate disabled people’s voices and experiences.Divide and Conquer: Invisible Disability Stories North East
The talk around this served as a small example of how society in the whole pitches groups of people who are treated as less important by society against one another. It does this without accepting that someone can be disadvantaged for more than one reason at once. That marginalisations can be “intersectional” meaning disadvatages come from different directions at once. And without looking at the political choices that make not having enough and treating people as outsiders seem normal (this is sometimes described as othering), and that keep people fighting each other At the time, here at Difference, we wished we had a story from one of our members that showed what it was like for them to live in the world with Tourette’s Syndrome. We didn’t want them to explain John’s experience, John should be given the chance to do that in his own time and way. But we did think something missing from the discourse was the variety of experience that those with misunderstood impairments have.What Was Missing: Invisible Disability Stories North East
We felt what was missing from the discussion or discourse was real disabled people talking about their experiences, and the few times we did find those people, there experiences and wisdom were dismissed or not platformed. We realised we had Difference’s platform and platforming disabled people’s voices and experiences was a good use of that platform.View @jhonelle_bean’s TikTok profile (opens in a new tab) Replying to @chunlifuu My two cents as a Black woman with Tourette Syndrome. We need to be looking at who on the BAFTA team okayed that moment to be aired when they had the ability to edit that out. It doesn't give dignity to the man with Tourette's nor to Michael B Jordan or Delroy for the hurt they experienced. That's the problem I feel more people need to talk about. #BAFTA on TikTok (opens in a new tab) #Tourettes on TikTok (opens in a new tab) #MichaelBJordan on TikTok (opens in a new tab) #Delroy on TikTok (opens in a new tab) #Abelism on TikTok (opens in a new tab) Original sound – Jhónelle Bean on TikTok (opens in a new tab)
Watch this video on TikTok (opens in a new tab)
Full text transcript
As a Black woman with Tourette's syndrome, I think I have valuable information to add to the discourse about the BAFTAs incident with John Davidson, Michael B. Jordan, and Delroy. I've made videos about this in the past. This comment is from a video that I made three years ago that is kind of active again because I talked about coprolalia, which is the tic interrupt syndrome that causes people to say obscene things, socially inappropriate things, and culturally inappropriate things. I've seen a lot of discourse and I just kind of want to bring some education and shed some light.
Similarly I guess the top three things that I've repeatedly been seeing that I'd like to give my input about are:
- A lot of people are saying that it seemed like that was the only time that John Davidson ticked, right when it was silent, right when it was perfect for him to say that word. That was the only time he ticked. Obviously I was not there to see if he ticked throughout the rest of the show or not but that doesn't necessarily mean that's true. A lot of times there might be motor ticks that are going on, which is movement that we might not see because, obviously, the camera is elsewhere throughout the show. There might have been other vocal ticks that he had that were a bit more muffled. He might have gotten up and got to the bathroom to let out a bunch of ticks in the bathroom before coming back. I know I've done that and I know a lot of my friends with Tourette's syndrome have done that as well so we don't necessarily know. Sitting there and assuming that that's the only time he ticked is also giving the impression that you're assuming that he did it on purpose, which brings me to my second point.
- A lot of people are saying they understand that Tourette's syndrome is involuntary and he can't control it but he shouldn't have said that. That's conflicting. You are now saying that you don't understand what involuntary and uncontrollable means because it's in "you cannot control it." Now I completely understand the complexity and duality of the situation of John Davidson having this tic. Even though it was unintentional, involuntary, it's still being harmful. Obviously as a Black woman I get it, especially in the time we are in, politically and just in our world today. 100% understand that the intention doesn't mean that the harm or the hurt wasn't there. 100% understand that concept, which is why I feel that we should be focusing on the BAFTA's editing team as to why that was kept. I learned that they are prerecorded earlier in the day and then they look at every single second and choose what to keep and what to cut out. People said that there were other statements, such as political statements that people voluntarily made, that were cut out. Yet they chose to take a moment that was probably incredibly embarrassing for the person with Tourette's syndrome, and as everybody is agreeing, incredibly hurtful for Michael Jordan and Delroy, and probably shocking to everybody in the room. They said, "We're going to keep that even though there was a pause before he ticked that and a pause after he ticked that." Between when Michael Jordan spoke and when Delroy spoke, that would have been perfect to just cut and edit there but they chose to keep that in. That was intentional, that was voluntary, and that was controllable. I feel all the comments on "Where's his?" He was intentional but he needs to apologise. The editing team that chose to keep that in and say, "Yah it's actually broadcasted to everybody. Let's just show that pain and hurt. The experience to everybody. Let's just show his most embarrassing moment to everybody." That's where I feel that we need to focus our discourse on, because what do you mean? Why would you keep that? That was intentional.
- The last misconception I wanted to talk about is people saying that it must be in his vocabulary if he said it, which is not how coprolalia works. The filter is removed and you can just say whatever you want to say or that you've been holding back. There are different situations that might trigger the thing that you know and have been taught socially: this would be the worst time to say XYZ. That is where the disability comes in and that's where it will say, "I don't care. This is what you're going to say" and you unfortunately say it. That is part of coprolalia.
Though only about 10% to 15% of people with Tourette's syndrome have coprolalia, can you imagine how incredibly hard that is? Especially if that, again, is not "Oh this is my filter's off. I can say what I want to say." It's "I'm just trying to get through this airport and unfortunately the last thing I want to say right now is my coprolalia making me say, 'I have a weapon' and listing off the weapons you have." Or someone that you love truly and dearly, whether it's the colour of their skin, the size of their body, their sexuality, and the thing that you want to say the least is forcing you to say that.
Do you know how incredibly hurtful and awful that is and how awful that makes the person feel that they have no control to stop themselves from doing that when they don't want to do that and it is most likely not in their vocabulary? Obviously they know words exist. In terms of words I know exist that I don't have in my vocabulary, I don't necessarily have coprolalia. I have Tourette's syndrome but I don't have coprolalia. I've seen friends with Tourette's syndrome that have coprolalia and see how incredibly hard it is for them: getting kicked out of movie theatres, kicked out of restaurants, getting in trouble in school and at work when they're just trying to live and function in society like us.
I don't think it's helpful to think and say, "Oh that must have been part of his vocabulary. He's just been dying to say it." I also don't think it's helpful for you to say, "Two people with disabilities, well then y'all just don't need to be out and about if you couldn't say that." Because what we're not going to do is go back in time to the ugly laws, where they had people with disabilities locked away and had a rule that they couldn't be out and about. That's real history so we're not about to go back and do that. We're not.
The A Day in a Life project was born: a series of invisible disability stories sharing lived experience from our members in the North East.
We dived into the search engine analytics to find which conditions and impairments were searched for the most and which search terms suggested they were likely to be dismissed. What we found was unsurprising: invisible disabilities – particularly Myalgic Encephalomyeliti or chronic fatigue syndrome (ME/CFS), fibromyalgia, Post-traumatic stress disorder (PTSD), autism and Attention deficit hyperactivity disorder (ADHD) – had the most negative online presence and the most searches questioning their validity.Invisible Disability Stories North East: Conditions we’re covering: ME/CFS, fibromyalgia, PTSD, autism, and ADHD!
That’s where we chose to start. We asked members living with these conditions to share their lived experience as disabled writers, giving them a platform to reach others and build understanding in the wider community. We wanted to support those disabled writers, hopefully giving them a new opportunity, whilst also allowing them to feel connected to other disabled people and hopefully see their experiences help other people and lead to more understanding in the wider community.Invisible Disability Stories North East: When the stories launch
We’re launching these stories in November 2026 alongside our Disability History Month programme. We would love you to read, engage and add your voice. We are also looking for funding to expand the project to engage with more of our members and create more of these resources.Invisible Disability Stories North East: How to support disabled writers and fund the project.
If you can donate or help fund future invisible disability stories, please get in touch.- Sign up as a member or ally for launch updates (What is an ally? definition here!)
- Share your experience
- Get in touch about funding
Invisible Disability Stories North East: Read more!
Frequently asked questions - Invisible Disability Stories North East
What is A Day in a Life? Invisible Disability Stories North East
A Day in a Life is a Difference North East project First-person stories of invisible disability and lived experience. Members describe what a day actually looks like for them, in their own words.
Which conditions will the project cover?
We're starting with the conditions our research showed are most likely to have their validity questioned: ME (myalgic encephalomyelitis, also known as CFS), fibromyalgia, PTSD, autism and ADHD.
When will the stories be published?
The first A Day in a Life stories will be published in November 2026, alongside our Disability History Month programme.
Who can contribute a story?
Difference North East members living with ME, fibromyalgia, PTSD, autism, ADHD or another misunderstood condition. If you're not yet a member, get in touch to join before writing.
How can I support or fund the project?
You can get in touch to discuss funding, share your own experience, or sign up as a member or ally for launch updates.
Invisible Disability Stories North East - What the words mean
- ADHD
- ADHD is a condition that makes it hard to focus and sit still. Back to ADHD
- Aggression
- Aggression is angry or hurtful behaviour. Back to Aggression
- Ally
- An ally is a person who supports a group they are not part of. Back to Ally
- Amplified
- Amplified means shared widely so more people hear it. Back to Amplified
- Analytics
- Analytics is information made from data. Back to Analytics
- Attendance
- Attendance is being at an event. Back to Attendance
- Autism
- Autism is a condition that affects how you talk and understand people. Back to Autism
- BAFTA
- BAFTA is a big film award ceremony in the UK. Back to BAFTA
- British Academy Film Awards
- The British Academy Film Awards is the full name of the BAFTAs. Back to British Academy Film Awards
- Capacity
- Capacity is the ability or time to do something. Back to Capacity
- Chronic fatigue syndrome
- Chronic fatigue syndrome is another name for ME/CFS. Back to Chronic fatigue syndrome
- Condition
- A condition is a health issue or disability. In the Social Model this is referred to as an impairment Back to Condition
- Contribute
- To contribute is to give, write, or share something. Back to Contribute
- Controversy
- Controversy is a public argument. Back to Controversy
- Difference North East
- Difference North East is a group that supports disabled people.
- Disabled person
- A disabled person is a person who has a disability. Back to Disabled person
- Discrimination
- Discrimination is unfair treatment because of who someone is. Back to Discrimination
- Dismissed
- Dismissed means ignored or not taken seriously. Back to Dismissed
- Discourse
- Discourse is talk, discussion, or debate. Back to Discourse
- Donate
- To donate is to give money. Back to Donate
- Elevate
- To elevate is to raise up or make more visible. Back to Elevate
- Empathy
- Empathy is understanding how someone feels. Back to Empathy
- Fibromyalgia
- Fibromyalgia is a condition that causes pain in your body. Back to Fibromyalgia
- First-person stories
- First-person stories are stories told by the person themselves. Back to First-person stories
- Impairment
- An impairment is a condition or difference in how a person’s body or mind works. Back to Impairment
- Incident
- An incident is something that happened, often upsetting. Back to Incident
- Intersectional
- Intersectional means when someone faces more than one kind of unfair treatment at the same time. Back to Intersectional
- Invisible disability
- Invisible disability is a disability you cannot always see. Back to Invisible disability
- Lack
- Lack is not having enough. Back to Lack
- Launch
- To launch is to start or release something. Back to Launch
- Lived experience
- Lived experience is what someone knows from living through something. Back to Lived experience
- Marginalisation
- Marginalisation is when a group is treated as less important and pushed to the edges of society. Back to Marginalisation
- ME/CFS
- ME/CFS is a health condition that makes you very tired and causes other problems. Back to ME/CFS
- Member
- A member is a person who joins a group. Back to Member
- Misinformation
- Misinformation is wrong information. Back to Misinformation
- Myalgic encephalomyelitis
- Myalgic encephalomyelitis is the full name for ME. Back to Myalgic encephalomyelitis
- Othering
- Othering is treating people as different or as outsiders. Back to Othering
- Platform/Platformed/Platforming
- A platform is a space or chance to speak. Platformed means given a space or chance to speak and be heard. Platforming is giving someone a space or chance to speak.Back to Platform
- Political choices
- Political choices are decisions made by people in power. Back to Political choices
- Post-traumatic stress disorder
- Post-traumatic stress disorder is the full name for PTSD. Back to Post-traumatic stress disorder
- Search engine
- A search engine is a website that helps you find things online. Back to Search engine
- Search engine analytics
- Search engine analytics is data about what people search for online. Back to Search engine analytics
- Validity
- Validity is whether people believe something is real or true. Back to Validity