Living with a facial difference
As a social worker in the Cleft Lip and Palate and Craniofacial Programs at SickKids, I have the privilege of working with many families from the moment their child is born into adulthood. One of the programs we offer for teens and young adults is a film workshop that offers a platform for self-expression and helps them to connect with other youth in the program, increase their self-esteem, and enhance social and communication skills.
In Spring 2016, I received a voice message from Christina Tremblay, the mother of the young Canadian actor, Jacob Tremblay. She introduced herself and said that her son, who was nine years old at the time, would be playing the role of Auggie Pullman in the movie Wonder, based on the book about a young boy with a facial difference by R.J. Palacio. Christina and Jacob had been searching the internet to learn about facial differences and had come across my contact information while looking at some information about the Film Workshop I facilitate at SickKids for our teens and young adults with facial differences. I called her back and learned that Jacob was doing research for this new role and was interested in hearing from our current and past patients about their own personal experiences living with a facial difference.
I invited all the participants from the Film Workshop to write letters to Jacob. This was a big ask, as it’s hard to share something so personal, in writing, with a complete stranger. And yet, eight amazing young men and women did just that: they shared what it was like to be stared at, to be teased and to be bullied because of their facial difference.
They shared their experiences in letters and hoped that they would be meaningful and impactful. Many participants have told me that this experience has changed how they feel about themselves for the better. That writing their story was cathartic, and gave them a voice.
We were all thrilled to hear that the letters helped Jacob to better understand Auggie, and that he read and re-read them to prepare for difficult scenes.
Those of us who work in the craniofacial community make it our life’s work to not only help our patients address their physical challenges, but also to support them with the emotional and social challenges they face at school, in the community, and in their everyday lives. Opportunities like this one do wonders for our children, teens and young adults who are genuinely beautiful people inside and out, and deserve to be seen and heard.
Below are excerpts from the eight letters to Jacob:
"Some days, I feel like every stare in my direction is a sign that I’m different – that I don’t belong. Sometimes, it’s easy to ignore the stares, especially when I am feeling happy. I tell myself that people are just curious, or that their stares don’t matter. When I’m with friends or family, it’s easier to ignore the stares because it’s like you’re surrounded by a big shield of positive energy. Other days, it’s more difficult to ignore. Sometimes I might feel unhappy, and when that happens, I might feel vulnerable – like an open book. I end up thinking that the stares have ill intentions – like they’re not curious, but that they’re mocking me instead. At times like those, I just want nothing more than to just fade into the background like everyone else seems to be able to do… My mood usually changes how I respond to staring. When I’m happier, I prefer to respond positively, for example, giving a smile to someone to remind them that I am a person too. Other times, I stare them directly in the eyes firmly to let them know that their staring isn’t appreciated. Sometimes, more than anything else though, I just wish that they would just connect with me – talk to me, or just give me a smile. Connect with me like a human being rather than eyeing me as an object of curiosity. At still other times, I wish that I could yell at them to let the negative emotions inside out. Instead of doing any of those things, though, it’s easy to feel a little powerless and just freeze in place."
"Kids can be cruel and I’m sure no matter how much we educate them, there will always be a select few who think bullying others is okay. Looking back, I would tell my younger self to stand up to those people and not let their words engrave into my brain but, I was young and being told this everyday made me believe what they were saying was true…My facial difference won’t stop me and that’s why I always try to educate others, because for us there should be no difference living with a facial difference."
"When you look different, you are well-noticed by the people around you. You feel like an animal in the zoo. Imagine that every day feeling like you’re under a microscope. That is what having a Cleft Lip and Palate made me feel like for the first 16 years of my life… When I understood how other people saw me, I understood that other people just don’t understand me. They picked on me because they didn’t know how else to act. So, I started educating people about why my face was different. Most people understood and those that didn’t continued to bully me. I just knew that the bullies had something they had to deal with. My close group of friends are the only people who mattered to me after that."
"If a magical fairy walked up to me today and asked if I’d like her to take away my cleft and live a ‘normal’ life, I’d tell her to turn around and find someone else! Yes, surgery is hard. Yes, being stared at sucks, but… there are so many positive things that were brought to my life solely because I was born ‘different.’ Because of my cleft, I learned to be my most authentic self. I learned that not everyone is going to like me, and that’s perfectly fine, because the ones that do, truly mean it. Because of my cleft, I have learned to be compassionate and accepting. I am always doing my best not to judge others based on their appearance or their abilities. Because of my cleft, I am empathetic. I understand that everybody has their own journey and not everybody’s struggles are visible to the human eye."
"I have come to notice there are things about me that I never realized were not the same for others. I have never been able to blow up balloons, I make a habit of avoiding hard or chewy foods for fear of choking or damaging my teeth and I cannot touch the bottom of pools because of the pressure in my ears. Also, when making new friends the conversation usually doesn’t start off with the question of ‘what’s wrong with your face?’ or ‘why do you look that way?’. Living with a facial difference, I’ve had negative experiences, but I’ve also had a lot of positives ones. I feel my experiences have taught me to give everything a chance; how something appears on the outside is not the full picture. I might look different from you on the outside but I am the same on the inside. How someone looks does not define them as a person."
"My life has been a continuum of people making judgements about me. I was called an “ugly baby” before I even knew what the word “ugly” meant. I was excluded from games at summer camp. Kids didn’t want to talk to me because I looked weird. I didn’t really understand what the big deal about my face was; as far as I was concerned, I was a pretty awesome kid. I loved running around playing sports, drawing, and animals. I was extremely friendly and at times sassy. My friends at the time thought that I was really funny too. At first it made me sad that some kids would stare and point at me, but then I began to realize that it was their loss, not mine. They were the ones missing out on a pretty cool friend… I think having a facial difference makes you see the world from a different perspective. It challenges you to adapt to situations and your surroundings differently from the majority of the population. It makes you more empathic to all kinds of differences. I would not be the person I am today without my facial difference. Even though I loathe my ears (I only just started wearing a ponytail at home), I also love them too. They have made my stronger, and I want to celebrate that. I am done with apologizing for how I look. I am done with the stares and the negativity. I have come to realize my strengths, and to acknowledge that my weaknesses aren’t fatal."
"My facial difference is Apert Syndrome. What this means is that bones in my skull fused together earlier than they should have, which affected the growth of my head; my hands and feet were also fused together, and I have had many surgeries in my lifetime. Despite the challenge of having a smaller hand than someone who does not have Apert Syndrome, I have played the piano for the past 14 years, and completed my grade 8 practical exam in the summer of 2016. That is the equivalent of a grade 12 university level credit, and it was hard work to prepare for the exam. Despite the challenges that come with a smaller hand, such as not being able to play most solid chords, I have still managed to bring my piano-playing to a level where I can play a piece such as Mozart's Sonata K545 from memory!"
"Having a facial difference is very challenging, and it affects our everyday life, especially when it comes to socializing, making friends, and even dealing with relationships and getting a job. When I was younger, I was teased and bullied for the way I looked. In elementary school, I wasn’t exactly ‘in’ with the popular crowd, but I did have friends who had my back no matter what. The thing was, even though the bullying wasn’t obvious, it still did hurt my feelings. I would always be picked last in gym class; I would sometimes notice people looking at me and whispering to their friends; I would notice people staring at me for periods of time, and it would make me uncomfortable, etc. It was especially anxious for me when I had to go somewhere new, a place where I did not know anybody and had to introduce myself and explain the reason for why I look the way I do, that is if they asked (which was every now and then). On top of that, I was pretty shy so it took me a while to connect with others and make friends. Even nowadays, I still get stared at on the subway, on buses or even just on the street, mostly by younger kids. Yes, there may be negative things associated with living with a facial difference, and yes, life does suck sometimes, but there are a lot more positive things associated with having a facial difference. My facial difference really contributed to my positive character, and has definitely taught me a lot. Most importantly, it taught me to never judge a book by its cover. Rather, instead of judging a person for how they look, try and get to know them. You may just find you connected with an amazing person."