How Scarlett Johansson helped me challenge disfigurement stigma

From The Guardian:

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.

“One of the main reasons for taking the role was because it was so moving and honest,” says Pearson over a lunch of fish and chips in a south London cafe. “For me, the film is about what the world looks like without knowledge and without prejudice. It’s about seeing the world through alien eyes, I guess.”

Much of the dialogue was improvised. Pearson and Johansson had a conversation beforehand about where it might go – the line about the hands, for instance, came from him. “My mother likes my hands,” he says now, a touch embarrassed. He also had to film a nude scene with Johansson – something even the most experienced actor would be nervous about.

“They just said ‘action’ and you do it,” he says. “I didn’t really think about it … I didn’t broadcast the information [that he was in the film] until quite near the release. I didn’t tell some people at all and just took them to see the film. I mean, my friend Heidi hasn’t made eye contact with me for a week.”

Johansson was “brilliant. She’s really nice, charming, funny and intelligent once you get over the feeling of ‘Oh my God, this is Scarlett Johansson!'”

One of his favourite memories was engaging the actress in a two-way competition to see who could tell the most inappropriate joke. Pearson won, but Johansson put up an excellent fight (and the jokes in question are eye-wateringly unrepeatable).

More importantly, Under the Skin gave Pearson an opportunity to challenge what he sees as the stigma surrounding representations of disfigurement on screen. “There’s a lot of fear around the unknown. If I can try to be as normal as possible and show there’s nothing to fear – either on film or day to day, going round the corner to go shopping for milk – then the more people see it in wider society, the less stigma there is. If I just sit at home and mope, hugging the dog and crying, nothing’s going to change.”

He points out that facial imperfections are often used as shorthand for evil in films, whether it be Blofeld’s eye scar in James Bond or the villain in Disney’s recent adaptation of The Lone Ranger, whose face was severely scarred and who was given what appeared to be a cleft palate in makeup. “It’s always used very lazily,” explains Pearson. “In an ideal world, actors with conditions would play the characters with these same conditions, but that’s a way off. Instead, film-makers tend to get a generic, ‘normal’ actor and use prosthetics. If they’d got Adam Sandler and blacked him up to play Nelson Mandela, there would have been an uproar … but with scars and stuff, it seems like people are cool with that.”

In person, Pearson is both eloquent and extremely funny. He possesses a quiet confidence and a degree of self-awareness that is rare among young men in their 20s. As a child, he had to grow up fairly quickly. He was diagnosed with neurofibromatosis when he was five, after he knocked his head on a windowsill and the resulting bump refused to go away.

His identical twin, Neil, was also diagnosed with the condition, but in him it takes a different form. “He looks normal,” says Pearson, “but he’s got terrible short-term memory.”

Secondary school in Croydon was tough. He was insulted and bullied on a regular basis and no one knew what to do about it. He remembers one occasion when a so-called friend said a teacher wanted to see him in one of the classrooms. When he got there, Pearson was assailed by a group of his peers who had been lying in wait. “I went home with spit all over my blazer,” he says. “That was horrific.”

Throughout all this, Pearson was having operations to “debunk” some of the tumours; to date, he has undergone 30 medical procedures. As a result, he is understandably sceptical about the rising trend in elective cosmetic surgery. “I’m not a fan of cosmetic surgery profiting from people’s insecurities,” he says. “I read somewhere nine out of 10 women don’t like how they look and I think that’s because they’re comparing themselves to the airbrushed images they see in Vogue or FHM. People lack a real literacy in the media. They don’t know what goes into producing these images. Media literacy should be part of education. I think we’ve done beauty a great disservice by quantifying it.”

It was during one of Pearson’s regular visits to Great Ormond Street hospital for treatment that he saw a poster advertising the organisation Changing Faces, which helps people and families who are living with conditions, marks or scars that affect their appearance. Pearson got in touch and asked for help without telling his parents – the first they knew about it was when the literature arrived in the post. The charity gave him coping mechanisms, encouraging Pearson to keep positive and to remember that “they [the bullies] are the ones with the problem, not you”.

Things got better when he went to Brighton University to study business management. After graduating, he had jobs in television production for the BBC and Channel 4, where he is still involved in casting for series such as The Undateables and Beauty and the Beast, both of which challenge society’s notions of disability.

It was while he was at Channel 4 in 2011 that he got an email from Changing Faces saying that a film company was looking for a male character for Under the Skin. Pearson replied and got the job. The film has been an overwhelmingly positive experience, and not just because he left with Scarlett Johansson’s personal email address.

Pearson is keen to do more acting. He’d like to get a girlfriend (“I’m currently single”) and, although there’s a 50% chance he could pass his condition on to any children, this doesn’t worry him unduly: “My kids will be genetically awesome anyway.”

At the moment, he is living with his retired parents, Marilyn and Patrick. Are they proud of his recent achievements?

“It’s certainly a good topic of conversation between them and their friends,” he says. “A friend will say: ‘Our daughter just got into Cambridge’ and they’ll go: ‘Adam’s in a film with Scarlett Johansson.'” He polishes off the last of his battered cod. Then he adds: “Booyah! Competition over.”

Under the Skin is directed by Jonathan Glazer (he directed Sexy Beast and Birth, but many will remember him best for the distinctive music video for “Rabbit in Your Headlights” starring Denis Levant). Glazer does not seem to have made an appearance on Metafilter independent of his early music-video work.

Viewers of English television may recognize Pearson from his involvement with and appearances on the Channel 4 documentary program Beauty and the Beast: The Ugly Face of Prejudice. He works in television as a casting and development researcher, specializing in “sensitive or difficult subject material.”

Is John Hawkes in ‘The Sessions’ another able-bodied actor playing a disabled part bound for Oscar?

from Entertainment Weekly Inside Movies:
http://insidemovies.ew.com/2012/10/19/john-hawkes-the-sessions-able-bodied-actor-disabled-part/
Is John Hawkes in ‘The Sessions’ another able-bodied actor playing a disabled part bound for Oscar?
by Solvej Schou
In The Sessions, opening in theaters this weekend, John Hawkes plays late poet Mark O’Brien, who was paralyzed from the neck down due to polio, and sought, in real life, to lose his virginity by working with a therapeutic sex surrogate. Hawkes is beyond emotionally and physically adept as O’Brien, restricted to laying flat in a huge iron lung, or being wheeled around on a portable cot, his face shifted to the side, his arms pinned to his sides. He’s partially nude at times, staring up at his sex therapist, played by distant-then warm Helen Hunt, and by turns funny, sweet, neurotic and moving. Oscar buzz has been swirling around Hawkes, who told EW at Toronto last month that the role was a challenge, like hungry flies to honey.

If Hawkes is nominated for an Oscar, he’ll join a long line of able-bodied actors and actresses who have been nominated or snagged top acting Academy Awards playing physically disabled – or physically challenged, as others say – roles. While real-life deaf actress Marlee Matlin won a best actress Oscar in 1987 for her part as a deaf pupil in Children of a Lesser God, and Harold Russell, whose hands were amputated after an accident in 1944, nabbed a best supporting actor Oscar trophy in 1947 as a World War II vet in The Best Years of Our Lives, they’re less the norm compared to the long line of able-bodied actors inhabiting those kinds of parts.

There’s Jamie Foxx, who won a best actor Oscar in 2005 as piano-playing and blind R&B impresario Ray Charles in the biopic Ray, Al Pacino, who won an Oscar in 1993 as a blind lieutenant colonel in Scent of a Woman, and Patty Duke, who snatched up a best supporting actress Oscar in 1963 as blind and deaf heroine Helen Keller. Audrey Hepburn was nominated for a lead actress Oscar in 1968 as a blind woman terrorized by criminals in Wait Until Dark.

Among the best known able-bodied performers inhabiting physically disabled starring roles is Daniel Day-Lewis in My Left Foot as true life writer and painter Christy Brown, a smart, creative quadriplegic man born with cerebral palsy, and only able to control his left foot. Day-Lewis was fiercely realistic in the movie, and won a best actor Oscar for it in 1990. That same year, in 1990, Tom Cruise grabbed an Oscar nomination for Born On the Fourth of July, playing real-life Vietnam vet Ron Kovic, who used a wheelchair after becoming paralyzed from the chest down while wounded during the war. Jon Voight also touched on a political and emotional nerve playing a paraplegic Vietnam vet in Coming Home, which won him an Oscar in 1979.

What do actors and actresses within the physically challenged community think about this longtime trend, including the possibility of Hawkes also being in line for an Oscar nod? The response ranges from support of able-bodied performers taking on challenging roles, to the need for more acting opportunities for actually disabled people. The Sessions director Ben Lewin is himself a polio survivor, and did hire some physically disabled actors for the film.

“I do not speak for all performers with disabilities – I’m a double leg amputee for 35 years, after my accident – but John Hawkes’ performance is astounding, and Helen Hunt’s as well. Of the movies I’ve seen so far this year, I think he’s in Oscar contention, and her as well,” CSI: Crime Scene Investigation actor Robert David Hall, chairman of acting union SAG-AFTRA’s Performers with Disabilities Committee, told EW.com. “This is a truthful and moving movie. Ben is a post polio person, and that’s pretty important. I know Ben thought about this when he was beginning to cast the movie. I just ask that people with disabilities are interviewed and auditioned. … There’s always an Oscar buzz if you play a physically disabled person. Thing is, you have to do it well, and affect people. Jon Voight’s portrayal in Coming Home opened people’s eyes for those with disabilities. It’s also a two-edged sword. On one hand I want portrayals to be accurate and honest, whether by a disabled or able-bodied actor, and on the other hand, I want people with disabilities to have more opportunities.”

Hall pointed out that 20 percent of Americans are identified as physically disabled compared to a minute percentage of actors working in the business.

“There’s a huge disconnect. There are a lot of talented people with disabilities trying to make it in the business,” he said. “I like to think of The Sessions as something that will increase awareness. Would it be better without John Hawkes? I don’t think so. It’s a tough business for anyone out there, really. I’m just proud as a human being to say this is a great movie. … There’s not a lot of fake emotion. There’s not a lot of pity. The thing that gets me the most when I see someone disabled in a movie is that they’re portrayed as either super strong or super weak. The humanity is drained out of them. We care about the same things as other people. Having a good time, sexuality. When I worked in radio, nobody cared I had artificial legs.”

For Cindy Allen, who was born with cerebral palsy, uses a wheelchair, and has been a working actress for 30 years, appearing on shows such as ER and Chicago Hope, as well as in movies, it’s also a matter of opportunities, access and talent. Allen’s a longtime member of California’s Media Access Office, which was established in 1980 in part by the California Governor’s Committee on Employment of People with Disabilities to provide a liaison between performers with disabilities and the media and entertainment industry. However, the office was temporarily discontinued this past week, and folded into the larger umbrella of California’s Employment Development Department, putting more strain on physically disabled actors having help finding jobs, Allen said.

“Playing a disabled role is not about getting an Oscar, it’s about dealing with a disability. Someone without a disability, no matter how much time training, it won’t be the same,” said Allen. “I’m not taking anything away from his [John Hawkes’] acting ability, but there are thousands of equally qualified disabled actors out there who can bring more authenticity to the role. I have been on so many auditions, but people say, ‘You look too disabled.’ What does that mean? Either you want authenticity, or you don’t. … To me, it’s like, there’s no way today, in 2012, that any role that was written for someone who is African-American would be played by a person in black face. It’s the same thing. We’re just going through it 30 years later than Sidney Poitier. There are equally talented people, who just don’t have the same star power. … All I’m asking for as a disabled actor is to have the opportunity first.”