'A Different Man' Star Adam Pearson Says His Facial Disfigurement 'Opened Doors' (Exclusive)

The British actor, 39, who lives with neurofibromatosis type 1, wants to hold the door open for others — and he's challenging Hollywood to do better at telling stories about disability

When Adam Pearson visits a new town or city, he knows the obvious can’t be ignored.

He anticipates the stares and curiosity — and, at times, the cruelty — when people first see his face, covered with tumors due to neurofibromatosis.

Pearson's approach is to confront it boldly. “You go in and go for it,” the 39-year-old actor tells PEOPLE in this week's issue. “Like, ‘Hi, my name’s Adam. I’m new here. We’re going to be friends.’ ”

That confident charm inspired director Aaron Schimberg to write A Different Man, a dark comedy opening Sept. 20 that stars Pearson and Sebastian Stan, who praises his costar’s “charisma and bravery.”

Pearson previously appeared in the 2014 thriller Under the Skin with Scarlett Johansson, as well as in Schimberg’s 2019 film Chained for Life. In A Different Man, he plays Oswald, a rakish hero whose facial disfigurement is a mere footnote to his magnetism.

“I wrote the part of Oswald to show off Adam’s range as an actor, and as a sort of tribute to his personality,” says Schimberg. “I have a cleft palate, and that’s shaped my perception of myself. But Adam, whose disability is even more visible, doesn’t let that define him. I was in awe of that.”

In Pearson’s hometown of Croydon, just south of London, his is known for his numerous appearances in British documentaries and on reality shows — and his occasional gigs DJing at his local pub, Riff Raffs.

“I’m liked, and luckily people seem to get on board with what I do,” says Pearson, who has jokingly referred to himself as “God’s favorite disabled guy.” He adds of the outlandish claim, “I think I can prove it!”

But cheeky optimism wasn’t easy to muster growing up in Croydon with his twin brother, Neil. As babies, the brothers were nearly indistinguishable.

But when Pearson was 5, he bumped his head in his bedroom, and the bump never healed. After trips to specialist after specialist, he was diagnosed with neurofibromatosis type 1, an incurable neurogenetic disorder that can cause tumors.

By the time Pearson was 8, the tumors had progressed, and his face was noticeably disfigured.

The taunting began. “Anytime The Elephant Man or The Hunchback of Notre Dame was on TV, the next day I’d hear that nickname,” he recalls. Secondary school was particularly painful: “I’d take a deep breath before walking through the gates and try to hang on.”

His brother, meanwhile, was also diagnosed with NF1 but showed no outward signs of the disorder.

Despite his situation, Pearson, who’s undergone 39 surgeries to remove excess tumors (“It slowly grows back, so it’s a constant cycle”), doesn’t recall feeling sorry for himself. “You can get bogged down in, ‘It’s not fair. Why is life so cruel?’ It doesn’t solve anything,” says Pearson, who’s lost all vision in one eye as a result of the tumors.

Related: This Woman Has Had 75 MRIs, 11 Surgeries and Has 100 Tumors, Including 3 in Her Brain — Here’s Why (Exclusive)

His brother, who works as a medical librarian, eventually developed short-term memory loss and epilepsy as a result of NF1. Yet Pearson says, “My brother and I were raised to live the life we’ve got and not mourn the one we don’t have.”

Acting happened by accident. Pearson was working in TV production when he got a call from a charity for facial differences saying a film needed an actor with disfigurement. It was the casting call for Under the Skin. “My disability has opened way more doors than it’s closed,” he notes.

"Anything I can do to destigmatize disability is a good thing"

Adam Pearson

But, he says, Hollywood largely relies on “lazy writing” when it comes to disabilities: “I don’t think there are enough disabled voices feeding into the creative process. I get frustrated when people pretend they can’t find them. Granted you don’t have to, but then don’t be surprised when what you make is garbage.”

Stan says collaborating with Pearson enriched his portrayal of a man who lives with disfigurement until he's able to transform his appearance. "Adam is a truth-teller and he’s incredibly honest. We clicked right away," says Stan. "He was kind in being open with me about his childhood and what he encountered in his life. All of it was vital towards me being able to construct a past for my character."

And Schimberg says he hopes to cast Pearson in future films. “He deserves to be in other movies, movies that aren’t specifically about disability,” Schimberg says. “He has what it takes.”

Related: Sebastian Stan Is Totally Unrecognizable via Prosthetic Transformation in A Different Man Trailer

On-screen or off, the actor says he’ll continue to be a voice for — and a face of — change.

That can mean not hiding from uncomfortable stares — or probing questions. "I think an honest conversation goes a long way," says Pearson. "Curiosity should be answered with kindness. All people want is to know that you're okay and that they're going to be okay. After that, it's plain sailing."

That's the approach he used when he spent several weeks living in New York while filming A Different Man . "I had a Dunkin' Donuts next to my apartment block, so I went there every day and got to know the staff by name," he says. "They were giving me free donuts by the end of it. I go into everything with a clear head and a full heart. If people want to talk, let's talk. I know some in the disabled community say, 'It's not my job to educate you about disability.' But we're the experts. I think if I'm not educating, I'm being reckless and irresponsible."

Instead, he wants to live his life “trying to add value where I can," he says. "If what I’m doing now means that younger Adam Pearsons don’t have to walk through hell in school, or that someone who looks like me can walk into a pub and it isn't a big deal, then I've accomplished my goal."

What is Neurofibromatosis Type 1?

Neurofibromatosis Type 1 is an incurable, genetic disorder involving the entire nervous system (brain, spinal cord and peripheral nerves) that is relatively common, affecting about 1 in 2,500 people. (Two other neurofibromatosis conditions, NF2 and schwannomatosis, each caused by different gene mutations, are more rare.)

As seen in Adam Pearson and his brother Neil's cases, NF1 has "variable manifestations,” says Dr. Jaishri Blakeley, director of the Johns Hopkins Comprehensive Neurofibromatosis Center. “You can inherit the gene and have very few problems, or you can have an overwhelming burden.” Among the most common presentations of the condition are cognitive challenges and tumors, either in deep nerves or in nerves that go to the skin.

“Facial overgrowth,” like Pearson’s, is more rare, says Dr. Blakeley. While surgery can be done to "debulk" or reduce the size of tumors like his, attempting to completely remove such tumors can cause nerve or structural damage. "If there's too much effort to 'clear' the tumor, you will lose all the cranial nerves which are required for moving your eyes, swallowing, chewing, talking," she says.

People who live with NF "face a lot of stigmatization by society," Dr Blakeley says. "They'll report when they go to hand money to a store clerk, the clerk won't take it because they're afraid they're contagious."

What Pearson is doing by speaking out and being a visible example of the condition "is so, so important," she says. "He's setting an example for anyone who has a physical manifestation that doesn't match whatever 'the norm' is. He's challenging the idea that there is a norm, and is saying, 'We are all normal. Your form is your form and it should be celebrated.'"

For more on Adam Pearson, pick up the new issue of PEOPLE, available on stands nationwide on Friday, Sept. 20.

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