TORONTO — Vancouver child actor Jacob Tremblay was in Toronto on Monday for a special screening of his new film “Wonder” about a child with facial deformities, sharing it with his muses — a group of young patients who live that reality every day and helped him prepare for his role.
The 11-year-old plays Auggie Pullman, a child with Treacher Collins syndrome, a rare congenital condition in which babies are born with underdeveloped facial bones and often little or no external ears.
Based on R.J. Palacio’s 2012 novel, “Wonder” follows the joys and torments experienced by Auggie as he tries to navigate the fifth grade, his first foray into public schooling after having been taught at home by his parents (played by Julia Roberts and Owen Wilson).
On Monday, Tremblay walked the blue carpet — “Wonder’s official colour” — at Sick Kids Hospital, along with two of his co-stars, 10-year-old Millie Davis of Toronto, who plays his friend Summer, and 12-year-old American actor Kyle Breitkopf, who took on the role of the bully Miles in the film.
Joining the actors on the carpet were the patients whom Tremblay had reached out to while studying for the role of Auggie. For the film, he wore a heavy facial prosthetic, a wig and contact lenses.
“I made friends and I also asked them if they could send me letters of any tips or experiences or stories they had,” Tremblay told The Canadian Press.
One of those patients is Katie Atkinson, who was born with Treacher Collins and has had several surgeries since infancy, including receiving cheekbone and chin implants about a month ago.
The 19-year-old nursing student at Mohawk College in Hamilton recalled being teased and bullied as a child because of her facial differences, including the fact she had “little ears.”
“Yeah, I definitely was and I still struggle,” Atkinson admitted in an interview before the event, saying it can be extremely uncomfortable when strangers stare at her, although that kind of behaviour has lessened somewhat as her surgeries have progressed.
“But when I was a child, my facial differences were a lot more prominent. … So a lot of times kids wouldn’t want to play with me. They would call me weird or ugly or an alien.”
She related one incident in which her father had taken her into a coffee shop and the barista behind the counter — not realizing the child in the stroller was his — exclaimed “Oh, look at that really ugly baby. They should put it out of its misery.”
It was such experiences that Atkinson related in her letter to Tremblay to give him the flavour of everyday life for people whose looks are outside the so-called norm.
“When Jacob reached out to us and asked for our letters and wanted to meet with us, that was just so incredible,” Atkinson said. “It really showed his character and how much he cared about having our stories really come through his acting, to make it the most realistic and the most profound for us.”
Farah Sheikh, a social worker in the Cleft Lip and Palate, and Craniofacial programs at Sick Kids, said the hospital receives about 130 new referrals from across the country each year, most commonly for children with a cleft lip or palate. The hospital currently follows about 5,000 patients with various facial differences.
The programs provide team-based medical and psychosocial support to these children and their families, from diagnosis through to age 22.
Initially, Sheikh works with parents, supporting them as they grapple with the medical challenges their child will face and helping to prepare them psychologically for possibly negative reactions from family and friends — and strangers.
“It can be really overwhelming,” she said.
But a key part of her role is also to support children with facial differences as they bump up against the reality of a society that is often unforgiving of physical anomalies.
“The most important thing is to have them connect with other children with facial differences and build a sense of community and share their experiences,” said Sheikh, who runs a number of programs and workshops aimed at building their self-confidence and self-esteem.
“For most of them, it’s the first time when they attend one of my groups that they’re meeting someone who also has a facial difference. There usually isn’t someone else in their school or classroom that they can look at and be like ‘We look alike’ and have already had like 15 surgeries at the age of 10.”
Having a visible facial difference can be a significant challenge for children growing up and “the theme of this movie is very much focused on bullying because of how this young boy looks,” said reconstructive surgeon Dr. Chris Forrest, medical director of the craniofacial program.
“And it’s very, very unfair that people have to be exposed to that type of behaviour,” he said, adding that “a movie like this is absolutely fantastic” because it desensitizes an important issue and opens up a conversation about acceptance of those who look different.
Looking “different” is something Kariym Joachim, who was also born with Treacher Collins, has had to deal with all his life.
Now 30, Joachim has undergone numerous surgical procedures — “I lost count past 20,” he confided in an interview — from plastic surgery and orthodontics to having sound-induction implants placed in his skull that allow him to hear.
“Then there’s also the psychosocial aspect,” he said, explaining that Sick Kids helped him build his sense of identity and self-worth, along with supportive teachers and a small core group of friends “that stuck it out with me.”
“But that doesn’t mean that I was free of the bullying and teasing.”
While such outright verbal attacks have subsided, he hasn’t been able to escape the stares he gets from people as he goes through daily life.
“There’s something to be said about getting on a subway train and being able to notice that there’s a lot of people staring, from the reflections on the window,” said Joachim, a clinical project research manager at Sick Kids.
“You realize that somebody’s staring at you and you can’t help but think: ‘What are they wondering? Are they saying ‘Oh, this person is a freak?’ or ‘Was there an accident?’
“Or in some cases, some people do believe that this could be something that can be a sin brought on by a parent. Some people feel that having a facial difference is a curse.”
But in his letter to Tremblay, Joachim recounted both positive and negative experiences “to kind of help him to see what people with facial differences go through.”
“I really wanted to convey that hopefully through the film that people would see that somebody with a facial difference is a person, they’re a very layered person with their own hobbies, thoughts, beliefs, and wishes and passions like anybody else.”
Sheryl Ubelacker, The Canadian Press