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In this series, we explore how our online identities intersect with who we really are.
With our first child, we couldn't wait to post pictures of him online and share them with our friends and family. We posted his picture within minutes of his birth.
I didn't post a picture of our second child until he was two months old. Because of his Apert syndrome, a condition that involves early fusion of certain skull bones, I was hesitant about what my friends and family were going to say about my "imperfect" baby. He looked different. His appearance to people who've never seen someone with a craniofacial syndrome can be shocking. So it took a long time for me to want to share his picture.
Part of what made me finally do it was that we had found some Facebook groups of parents of kids with Apert syndrome, as well as adults living with Apert syndrome. These connections were essential to our emotional survival those first few months. We needed them like air and water. When we joined these groups, our news feeds quickly started filling up with pictures of kids who have this syndrome, and soon it started feeling normal. Also, this was was my baby and I wanted to introduce him to the world.
Eventually, I thought "Well, I've got to do this. I was pregnant, and everyone's asking me about the baby." So at some point, you just have to bite the bullet and do it.
Then I happened upon this dark, nasty corner of the Internet.
We had just had our meeting with a geneticist at the hospital who confirmed our son had Apert syndrome. He told me that cognitive developmental delay was a characteristic of the syndrome, that it was inevitable, and if our son could eventually learn to use cooking equipment safely and if he could count money, he might be able to live on his own without having to be in some type of group-assisted living home. That was very difficult for me to hear.
Later that same day, I was on one of the Facebook groups, and saw that someone had posted a picture of their grown daughter with Apert syndrome. She had recently graduated from university with a degree in library sciences and she was standing in front of a library, where she had just gotten her first job. That picture was everything to me. It gave me back all the hope that my child would grow up and have an independent life.
I was so happy and excited, I wanted to share this with my family and friends, who were also learning about this condition, to say, "Hey, look at this! Here's an adult with Apert syndrome, and look what they're doing with their life. This is going to be my son one day – don't you worry." So I shared the young woman's photo on my Facebook page, and didn't really think much of it.
Within a couple hours, my phone started blowing up with notifications, and I realized there was this commotion in the group that "someone" was sharing pictures of people in the group without permission. Thankfully, one of the women in the group messaged me, and gently said, "Hey, just wondering if you got permission to share that photo because there's kind of a general rule where we don't do that kind of thing." So I inquired, and she explained that people have been known to use pictures of the kids in our community and make cruel, viral memes about them.
She pointed me to a group called Lola's Voice, which is an organization dedicated to preventing cyberbullying. It grew from the fact that Lola – who, by the way, is an absolutely beautiful little girl – had her picture used and memed and it went viral. And she has Apert syndrome. So that's how I was introduced to this awful phenomenon.
My reaction was fear. I immediately removed the young woman's picture and posted an apology to the group, saying I'd never post another member's photo without permission again. And then, I went through my Facebook and scrubbed it of all the pictures I could of my son. I went through and changed all my privacy settings. I also went through my list of friends and deleted anyone I did not implicitly trust. I just did not want to take any chances of his picture ending up somewhere I did not want it to be.
That's what it's been like ever since. Just the other week, one of the families in our community had their child's picture used in a meme on an online buy-and-sell site and they couldn't get their picture taken down. I was consumed with it all day. I was totally consumed with who would do such a thing, who they were and why they would do this. I actually contacted a few family members and said, "I'm so sorry, I need to ask you to remove my son's picture from Facebook. You don't need to delete them, but you have to move them to a private folder where only you can see them."
It kind of brings out a bit of neurosis. You're already neurotic as a parent of a kid with special needs, and then this brings it out of you more.
Bridget Ku has two sons and lives in Toronto. Her youngest has Apert Syndrome, a genetic condition that affects the shape of the faces and heads of those born with it. Individuals with the syndrome often have fused fingers and toes, called syndactyly. Ku is a supporter of AboutFace, a Toronto-based charity created to support individuals with facial differences.
– As told to Wency Leung