Why I didn’t need amask to play a mon­ster op­po­site Scar­lett Jo­hans­son

He­has a con­di­tion that has left him dis­fig­ured but Adam Pear­son, 29, hasn’t let that stop him from be­com­ing an ac­tor. Star­ring along­side Scar­lett Jo­hans­son, he’s hop­ing his ap­pear­ance will counter prej­u­dice and chal­lenge pre­con­cep­tions in cast­ing. Anthea

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‘With main­stream me­dia throw­ing out im­ages of unattain­able per­fec­tion, it’s the be-all and end-all’

Adam Pear­son can’t help but stand out in a crowd; he turns heads, gar­ners whis­pers and stops peo­ple in their tracks. They look, they point and they smile, and nowa­days it’s all for the right rea­sons.

For de­spite suf­fer­ing from type 1 neu­rofi­bro­mato­sis (NF-1), a rare ge­netic dis­fig­ure­ment that has caused be­nign tumours to spread across his face, the 29-year-old ac­tor has be­come a bit of a dar­ling amongst cin­ema au­di­ences, star­ring op­po­site Scar­lett Jo­hans­son in the crit­i­cally ac­claimed sci-fi thriller Un­der the Skin.

That he has act­ing skills is ob­vi­ous but Adam is also us­ing his tal­ent to fight for fa­cial equal­ity, and change the face of film for­ever.

“We live in such a me­dia-heavy cul­ture now,” Adam says from his home in Croy­don, UK.

“Peo­ple are con­stantly bom­barded by air­brushed im­ages and we put celebri­ties on pedestals. I think we have done beauty a mas­sive dis­ser­vice by quan­ti­fy­ing it and giv­ing it bound­aries. Rais­ing aware­ness around the arena of dis­fig­ure­ment is im­por­tant. With the main­stream me­dia throw­ing out im­ages of unattain­able per­fec­tion, image has be­come the be-all and end-all to our cur­rent gen­er­a­tion.”

As for his co-star Jo­hans­son, who plays an alien se­duc­tress in the film, Adam says, “Scar­lett has a re­ally in­ter­est­ing role. She’s an alien who sees the world with­out knowl­edge, and there­fore, prej­u­dice. She doesn’t no­tice my ap­pear­ance when our char­ac­ters ini­tially meet and that’s a real jux­ta­po­si­tion to what the real world would be like.”

His fierce re­solve to change such per­cep­tions has seen Adam star in doc­u­men­taries and fea­ture on morn­ing chat shows across the UK. With his dry wit and warm na­ture, he has slowly but surely pushed his de­sire for fa­cial equal­ity in a time when younger gen­er­a­tions are seek­ing ex­treme mea­sures to ob­tain aes­thetic per­fec­tion.

He wants to change the way peo­ple with dis­fig­ure­ment are treated, so that other chil­dren won’t have to suf­fer the way he did as a child. For Adam is only too aware of how the real world re­gards peo­ple who are ‘dif­fer­ent’, as ex­em­pli­fied by the years of cruel teenage taunts that saw him called Scar­face and Quasi­modo.

“Pri­mary school was fine be­cause at that age life is much eas­ier,” he says. “I have had a friend for 25 years and we bonded over the fact we both liked the colour red.”

But se­condary school was dif­fi­cult. “It was re­ally tough,” Adam admits. “I didn’t han­dle it very well and peo­ple at that time just told me to ig­nore it. There’s that aw­ful phrase: ‘sticks and stones will break your bones but words will never hurt you’. But all I can say about that is [who­ever cre­ated it] ob­vi­ously didn’t have to go through se­condary school.”

It was a try­ing time for Adam, whose con­di­tion had started to worsen since dis­cov­er­ing his ill­ness by ac­ci­dent. “I got the di­ag­no­sis when I was six years old,’’ he says. “I was mess­ing about in my room, prob­a­bly try­ing to be Hulk Ho­gan, and I hit my head on the win­dowsill. It came up in a big bump and at the time my par­ents just thought ‘boys will be boys’ and waited for it to go down, but when it didn’t, that’s when we started ask­ing ques­tions.”

It was sev­eral months be­fore Adam was di­ag­nosed with NF-1, a pro­gres­sive and di­verse con­di­tion that man­i­fests vari­ably amongst suf­fer­ers from cof­fee­coloured birth­marks to epilepsy.

In Adam’s case his face be­came “con­sumed” with tumours. “It de­vel­oped rather quickly,” he says. “But there is no one-size-fits-all for the con­di­tion; there’s a broad spec­trum of how se­verely some­one can or can­not be af­fected. My [twin] brother Neil also suf­fers from the con­di­tion but he has short-term mem­ory loss as a con­se­quence so he has to con­stantly make notes and get into good rou­tines.”

For Adam it was less about be­hav­iour and more about ap­pear­ance, which is what led him to seek sup­port from Chang­ing Faces, a char­ity for peo­ple and

‘Since the film came out I’m recog­nised al­most ev­ery day for the right rea­sons. I feel good’

fam­i­lies liv­ing with con­di­tions, marks or scars that af­fect their ap­pear­ance.

“I first came across them when I was eight,” he says. “I had a lot to cope with and they helped me deal with my bag­gage. Af­ter that I went off and tried to get on with my life but when I was 21 they set up a group called the Young Peo­ple’s Coun­cil and that’s when I re­ally got in­volved.”

The coun­cil is a group of 13- to 25-year-old en­dusers of the foun­da­tion’s ser­vices, who through per­sonal ex­pe­ri­ences of liv­ing with un­usual ap­pear­ances help to pro­vide a voice for the younger gen­er­a­tion. Adam didn’t hes­i­tate to get on board and from that time be­came an am­bas­sador rep­re­sent­ing the or­gan­i­sa­tion, at­tend­ing events and giv­ing talks so that he could, as he says, “cam­paign by ex­am­ple”.

In 2012 Chang­ing Faces launched the Face Equal­ity on Film cam­paign calling for bal­anced por­tray­als of peo­ple with dis­fig­ure­ments. It came af­ter the Bri­tish govern­ment ran a sur­vey that showed peo­ple as­so­ci­ated evil char­ac­ters with scars, burns and other fa­cial con­di­tions.

“We trawled through hun­dreds of films look­ing for on-screen rep­re­sen­ta­tions of dis­fig­ure­ment,” Adam says. “And it be­came ob­vi­ous that scars are used as short­hand for evil. If you look at the bad char­ac­ters in James Bond movies or Cap­tain Hook for ex­am­ple, their malev­o­lence is por­trayed through scars.”

And as for us­ing pros­thet­ics to por­tray the ‘bad­dies’, Adam makes a valid point. “You wouldn’t ‘black up’ some­one to play the role of a black person so why put ac­tors in pros­the­sis and have them play evil char­ac­ters?”

He adds, “Our aim was to chal­lenge per­cep­tion, we didn’t want to stand on a soapbox and tell peo­ple they were wrong; we wanted to raise aware­ness and spark de­bate around the is­sue. At no point how­ever did we in­tend to vil­lainise the film in­dus­try.”

Which is why when direc­tor Jonathan Glazer chose to cast Adam in Un­der the Skin it was such a turn­ing point for the film in­dus­try.

Adam says, “It sparks de­bate from a psy­cho-so­cial per­spec­tive, but also from an in­dus­try per­spec­tive; that peo­ple are out there with dis­fig­ure­ments and scars who can act.”

As for Adam, the movie has helped him be recog­nised for who he is – a young man with a witty sense of hu­mour, a def­i­nite charm, and a pas­sion to fight for a cause, not just a guy on the street to be stared and pointed at with dis­dain be­cause his con­di­tion makes him look dif­fer­ent. “Now I am the guy from Un­der the

Skin,” he says. “Since the film came out I’m recog­nised al­most ev­ery day. It makes me feel good; at least peo­ple are notic­ing me for the right rea­sons.”

Twins Neil and Adam are both af­fected by the con­di­tion

In 2013’s Un­der the Skin Adam is chal­leng­ing pre­con­cep­tions

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