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Actor Adam Pearson: ‘I wake up every morning, let the universe kick my arse and then carry on’

His sharp wit helped him take on the bullies as a teenager, now he’s using it to advocate for genuine disability inclusion

Adam Pearson is an actor, documentary maker and disability rights campaigner. He was born in Croydon in 1985, and at the age of five was diagnosed with neurofibromatosis, which causes non-cancerous tumours to grow on nerve tissue. Pearson’s identical twin Neil has the same condition – but it manifests in a completely different way, which the two of them explored in acclaimed BBC documentary Horizon: My Amazing Twin in 2018.

Before he won his first acting role, Pearson worked as a researcher for the BBC and Channel 4 – including helping cast the documentary series The Undateables. He went on to present Channel 4’s Beauty And The Beast: The Ugly Face Of Prejudice on Channel 4 and, after Horizon, also fronted critically acclaimed documentaries Adam Pearson: Freak Show (BBC Three) and The Ugly Face Of Disability Hate Crime (BBC Three).

In 2013, Pearson won a key role in BAFTA-nominated film, Under The Skin, directed by Jonathan Glazer and starring Scarlett Johansson. He went on to play himself in independent feature, DRIB, which premiered at SXSW in 2017 and co-starred in US dark comedy Chained For Life the following year. He now stars with Sebastian Stan in a major new film, A Different Man, which premiered at the Sundance film festival to rave reviews in January 2024.

Adam Pearson is also an ambassador for Jeans For Genes and The Childhood Tumour Trust. Pearson won a RADAR Award and a Diana Award for his campaigning work.Speaking to The Big Issue for his Letter to my Younger Self, Pearson looks back on difficult times at school, an unexpected acting career and making a difference as an advocate for disability inclusion.

At 16, I was just finishing secondary school. And school had been a miserable existence. I think it sort of sucks for everyone, because everyone’s trying to find out who they are and your hormones are running wild. There’s this bizarre economy of popularity that exists – if you want to see Darwin’s theory in perfect motion, go to any secondary school playground and watch how it plays out. That environment was not good for me. I was at the bottom of that ridiculous food chain. And you don’t realise how ridiculous it is until you are years removed from it. Then you look back and think, that was all so dumb.  

I was wildly unpopular at school. But I also handled things badly. Unfortunately, or fortunately depending on how you look at it, I was a lot smarter than the kids bullying me. You try ignoring it for a while, but that can only take you so far. Then I decided the best form of defence is attack, so I was eviscerating people in the playground. I had a wide vocabulary. I’d grown up on quite sharp British humour – we’d always have Only Fools and Horsesor Dad’s Army on – and I had quite a wit to me. That got me in a lot of trouble. If I could go back, I’d do it differently. I’d say, you’re better than this. Grow up and stop insulting people. I needed a bit of tough love. 

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I would love to be able to tell my younger self to hang on in there. All this ends. It does get better and it does get easier. Luckily, I’ve always had a strong family and good support network. With that in place, you are able to find little things that keep you going, your own little quiet places. Like putting on a movie that gives you joy so you don’t have to focus on the bad stuff for a while. One day I’ll be able to watch All Dogs Go to Heaven and not cry. But today is not that day. 

When I was really young I went to see Live and Kicking being filmed at Television Centre. I was so fascinated by the nuts and bolts and mechanics of what happened behind the camera. From that moment, I wanted to do that in some way when I was older.  

Adam Pearson with twin brother Neil
2000: Adam Pearson at home with twin brother Neil

My younger self would lose his mind if I told him that he was going to be an actor and work with Scarlett Johansson. Under The Skin changed my life immeasurably and I’m eternally grateful to the casting director Kahleen Crawford, director Jonathan Glazer and Scarlett Johansson for taking a chance on this unknown kid from Croydon who missed his flight to set on his first day and was seven hours late! Scarlett was hilarious – and doesn’t get enough credit for how kind and warm and funny and patient she is. I wasn’t ready for the response to the film –  I thought it would be in the cinema for a couple of weeks then I would go back to whatever the hell I was doing before. But 10 years on, people still stop me to talk about it, and everyone who has seen it remembers my scene in the van.  

If anything is gratuitous or icky or reinforces stereotypes, it goes straight in the bin. We are getting there slowly, but it’s time Hollywood put its money where its mouth is when it comes to representation. I can’t tell you the amount of panels I’ve sat on where we talk about diversity and inclusion and the need for change. And it just doesn’t come. When it comes to proper inclusion of disability, it is a long time coming.

I didn’t choose advocacy. Advocacy chose me. Because if you can’t see it, you can’t achieve it. And the stories we see play out affect the stories we live out. Growing up I didn’t have any role models or people who looked like me that I could look to and think, that person understands me. So if I can break that cycle and be that with someone else, that can only be a good thing.  

I would tell my younger self don’t get into a relationship just because everyone else is and also don’t settle. Just because you’re disabled or your circumstances are what they are, that doesn’t mean you can’t also be a little bit picky. Don’t be shallow, don’t be superficial but also it is OK to wait for the person. And when it happens, you’ll know. Because love is awful, right? It makes you do and say things you thought you’d never do. It makes you crazy, it makes you anxious, it makes you selfish – and that’s why you don’t do it alone!  

Adam Pearson at a gala dinner in London
2014: Adam Pearson attending the Changing Faces Gala Dinner, London. Image: Karwai Tang / WireImage

My younger self would be surprised that people know who I am. I get asked my opinion on things and I’m just stunned that people care. I’m amazed at the level of influence I have. But it’s something I am very cautious about. I’m super diligent to not set myself or other people up for failure. I’m open and honest on social media.  It’s important to acknowledge that we all have bad days. People need to know that it’s OK not to be OK.  

Growing up, any documentary I saw about difference and disfigurement was sensationalist and tonally a bit wack. It was all, ‘The Boy with a Shark for an Arm’. But the feeling of being seen and acknowledged and humanised would have been gamechanging. And that’s what we tried to do with Horizon [Adam and his twin brother Neil made a documentary called My Amazing Twin]. I had weeks of messages from people with NF [Neurofibromatosis] saying thank you, or I feel seen for the first time in my life. It’s a heavy responsibility to carry, but if it helps people, I’ll gladly carry it.   

The two easiest ways to lose your anonymity in society are to have a disfigurement or to become famous. So I’ve shot myself in both feet on this one. When I was talking to Sebastian Stan about his role in A Different Man, I said he would never get the level of invasiveness I get from people pointing and staring and taking photos in a gratuitous manner. But what he does understand is people thinking they own you after seeing you in films. So lean into that. I genuinely don’t care what Funkybadger38 on Instagram with his eight followers has to say about me. I’ll read it, laugh, then I will forget you for the rest of my life. I wake up every morning, let the universe kick my arse and then carry on.  

Whilst me being here and doing this is all well and good, there are other people with disfigurements and visual differences who aren’t getting the opportunities they deserve. I’m not talking about box ticking. But there are other talented actors, singers and performers, and there are also really good accountants who aren’t getting the work and the credit they should, simply because of how they look. We really need to start cutting through that nonsense. If this film doesn’t help with that, I’ll get back on my soapbox, pick up my megaphone, put on my suit of armour and keep having these conversations until we make positive change.  

Adam Pearson with co-stars Sebastian Stan and Renate Reinsve in A Different Man
2024: Adam Pearson with co-stars (l-r) Sebastian Stan and Renate Reinsve in A Different Man.
Image: Matt Infante. Courtesy of A24

This new film asks a lot of questions about identity, about who we are on the outside and the inside. How people see one another and themselves. And what is and isn’t exploitation. Aaron Schimberg, who wrote and directed it, was born with a bilateral cleft palette. So he understands the arena of disfigurement and difference and othering more than most. And while in Under the Skin I played a very shy and retiring character, this one is me turned up to 11, trying on my inner Elton John.  

I reckon my teenage self would be mad proud of this film. It’s the kind of thing where you look back at all the barriers and hurdles you faced and it makes sense of it all. We’re all products of our environment. The experiences we have growing up shape us. And if they don’t make us, they break us, right? It all makes sense now. So if I could go back and talk to my younger self, I’d just say, it gets better. Hang on in there. This ends well.   

A Different Man starring Adam Pearson is in cinemas from 4 October. 

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