Seeing past outward appearances

Last year, the mother of a little boy from Texas was the subject of copyright thievery. A photo of her son Jameson was stolen and used without permission within a number of social media forums. While copyright thievery of images, words, art and ideas on the internet is rampant these days, and a murky subject to navigate, Jameson’s story goes much deeper.

Jameson was only 4 years old, and was born with Pfeiffer syndrome, a rare genetic disorder. It is one of a small number of syndromes, known as craniofacial syndromes, which affect the growth of the bones in the skull, hands and feet. While there are of course medical impacts of these conditions, there is a significant other impact – that on the outward appearance of the affected person, and in turn on how he or she is received in the world socially.

When the photo of Jameson was stolen, it was specifically stolen to mock his appearance. A photo of a sweet and innocent 4 year old boy was stolen for an internet meme – a person took the time to download the photo, apply words comparing him to an animal, Tweet and post the image on their Facebook and Instagram pages, and sit back and revel as more than 8000 users engaged in the posts, laughing, liking and sharing, before an effort led by Jameson’s mom had the stolen and altered photo removed from the social media sites. This effort, while possibly successful in the end but with the understanding that images and information on the internet live on in perpetuity, involved varying levels of cooperation by the different social media sites.

What happened to Jameson deeply impacted the community of people living with or affected by craniofacial syndromes and facial differences.

As a photographer, specifically a family and children’s portrait photographer, I specialize in capturing images of the beauty of a child’s personality and their fun and loving connections with their moms and dads, and their brothers and sisters. In my industry, I hear every day about the struggles of fellow photographer’s having copyright of their professional images stolen. To hear about the mother of a little boy having the same happen to her, and specifically with such detestable malicious intent, struck a chord with me. To me, every child is beautiful, and the connection of love and trust between children and their families is paramount. I want to bring the story of children who appear outwardly different, such as Jameson, to the public – I want to help society understand that outwardly different means little – it is what is inside that counts. I want to help counteract an image of a child that has been compared to a dog.

Here in Toronto, Jameson has a tiny counterpart in 2-year old Marshall Ku. Marshall was born with Apert syndrome, a sister syndrome to Pfeiffer and one of the family of craniofacial syndromes. Marshall’s mum and Dad, Bridget and Dennis, agreed to let me into their family for an afternoon to photograph them with Marshall and Marshall’s older brother Quinn. Our goal is to show the world a sweet and loving little boy and his strong, supportive, yet ‘normal, every-day’ family through compelling and emotional photos.

We took these photos last August, just before Marshall had a surgery to release his fingers from the ‘mitts’ they were born with. Photographing him with his family was a pleasure, and you know what? He was just like any other 1 year old. Spirited, sweet, innocent, of his own mind. A little bit mischevious, a little bit determined. Needing of a snack, and a run, and a nap. Just like any other toddler. I can say very cleary, he is not a meme, he is a person.

He is not a meme. He is a person.

While we planned the shoot over a year ago, and photographed last summer, this is just the beginning of this story. As a result of our work together, directly, indirectly or tangentially in different cases, Marshall’s story has been recently featured in the Globe and Mail as well as in Canadian Living Magazine (with the photos we created that day in August!), and the local organization About Face (xxx) has secured space in Metro Hall in September to create a awareness-raising display of images of people living with cranio-facial syndromes. I can’t wait to create and show the world these images, alongside other photographers who will work with us on the project. Also, in November, the amazing young actor Jacob Tremblay will feature alongside Julia Roberts and Owen Wilson in a feature film “Wonder”, based on the book by Raquel J. Palacio. Go see it - I can't wait!

Things are happening and I’m so excited to be just a little bit part of it.

Please share this post to share Marshall and his families’ story.

Help even more directly with a donation to About Face.