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Photo of a man with neurofibromatosis.
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How Scarlett Johansson Helped me Challenge Disfigurement Stigma

By Elizabeth Day

Adam Pearson was born with a condition that causes tumours to grow on his face. But acting with Scarlett Johansson in Under the Skin is changing the way people look at him.

Adam Pearson is used to people noticing him. A few weeks ago, he was in a DVD shop near his home in Croydon, south London, and a gaggle of teenage girls starting talking loudly about him and taking photos of his face on their smartphones. “They were saying ‘Oh, look at that man’,” says Pearson. “And all I wanted to do was buy The Hobbit on Blu-Ray.”

Pearson suffers from neurofibromatosis, a condition that affects one in every 2,300 people and which causes non-cancerous tumours to grow on nerve tissue. In his case, the majority of these tumours are on his face although, he adds drily, “I’ve got one on my arse I probably won’t show you”. Throughout his 29 years, he has been bullied, harassed and called everything from Elephant Man to Scarface.

Every time he goes out, people stare. On the way to our interview, Pearson was stopped by a couple of passersby as he got on the train. This time, however, it was not as a result of his condition – it was because he has begun to be recognised. Pearson is currently starring alongside Scarlett Johansson in Under the Skin, a critically acclaimed science fiction film directed by Jonathan Glazer about an alien who roams the streets of Glasgow abducting and killing unsuspecting men. In one of the most poignant scenes, the alien (Johansson) is shown picking up a hooded man at night (Pearson). When the unnamed man reveals his disfigured face, it is a pivotal moment: the alien becomes humanised and conflicted. The two of them have a brief conversation about the nature of ignorance and prejudice. The alien does not remark on the stranger’s face, instead complimenting him on his “beautiful” hands.

To read more, please go to their website where it was originally published in The Guardian on April 13, 2014.

Cover photograph: Richard Saker for the Observer. Adam Pearson at his home in south London. 

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