“Oh, they built the ship Titanic, to sail the ocean blue, and they thought they had a ship, that the water would never go through…” I looked
around and instantly knew I was going to like this place. The counselors kept belting out one after the other crazy camp songs while we waited for our macaroni and cheese, apples and milk to be served. My parents had learned about Farm Lake day camp, run by the Dessen family, from our next-door neighbors, William and Melissa. They had attended the prior summer and now that I was eight, my parents decided to send both Peter and me together. On our first day and Peter was sitting on a wooden bench across the room with other boys including William. Melissa was on my side of the room but, because she was five years older, we were at separate tables.
All morning before we got dropped off, I had felt quite nervous about the prospect of going to yet another environment where I hardly knew anyone. Strategically, I decided to wear shorts with pockets and also brought a jacket that I tied around my waist. “Oh it was sad….so sad….it was sad….too bad…it was sad when the great ship went down…” now that even the campers had joined in, the singing was so loud I didn’t hear the girl next to me. “Hey, didn’t you hear me? Pass the macaroni!” I hesitated. So far I had been able to hide my hands in my pockets and had spent most of the morning visiting the chicken coup, gathering eggs making sure my sleeves were purposefully extended past my one-fingered hands and shortened forearms. I hesitated, carefully slipping on my jacket so that when I held the bowl, the only thing exposed was my jacket. After lunch, I turned around to a familiar voice. “Meg, aren’t you hot?” It was Peter, who had come over to see me. Ignoring the question, I got up. The best part of the camp was the incredible freedom we had to wander around the grounds. “Hey, do you want to go see Red and Snowflake with me?”
Red was a large reddish brown horse who spent most of his days giving kids rides around camp. Red was a favorite among the kids. Once up in his saddle, you felt incredibly tall. When I got there, Red was taken already so instead I decided to ride Snowflake, a much smaller, white horse. I approached the counselor in charge who was extremely friendly. “Why sure! Let me help you up. First, put your shoe into this stirrup and swing your body over until you’re seated in the saddle….” Excited to ride a horse for the first time, I followed instructions, at least initially. “Okay, now take your hands and grab the reigns.” At this point, a group of kids had gathered around to get their chance of riding. Nervous and self-conscious, I tried my best to grip the reigns with my jacket once again covering my hands to make sure the other kids didn’t notice my deformity. Sure, I knew discovery was inevitable but I wasn’t ready to deal with it yet. However, as Snowflake began to move forward, it was impossible to make a tight grip. Within a few seconds I felt my body slip off the saddle and fall backwards off the pony. “Hey! Are you okay?” The counselor rushed with Peter to my rescue. I was startled by the fall but, thanks to Snowflake’s small size, I had only a few bruises to show for it. However, as I lay there on the grass, my mind was consumed with only one thought. “Had anyone seen my hands?”
It would take several weeks before I felt comfortable amongst my new peers.
This past month, John and I clearly over-programmed our lives so much that I could hardly sit down to write a new blog post. Despite having a wonderful period traveling a lot, last week we
picked up our kids from a month at sleep-away camp. While I was beyond excited to get our three children back, it was equally clear that they were happy where they were and could’ve stayed longer.
But the month didn’t start off that way—at least not from the view we got looking at the photos posted online daily by the camp. We could write letters back and forth and scan the website for an occasional photo, but the camp forbid telephone calls so there was always a bit of speculation as to how they were really doing. While this was Ethan’s fourth summer at camp and he appeared perfectly at home, it was Charlie and Savanna’s first summer away and we were a bit anxious to get some glimpses of them. The first shots of Savanna showed her playing naturally with new friends and clearly happy. My stomach churned a bit, however, when I noted the early photos of Charlie. At first he was smiling among a group at the camp’s Opening Ceremony and carrying the Torah around. But then I saw he had purposefully worn his jacket in such a way that his sleeves covered his two-fingered hands. Another photo of Charlie playing Gaga (a form of Dodgeball) again showed him wearing his sleeves stretched to hide his hands. And he was doing that even though Savanna was in the game, too. Thinking back to my own childhood experiences encountering new kids, I could instantly relate. I wanted to call him and encourage him to be a “flaunter” or something other than hide his hands. But there was that No Phone Calls policy. I called John over. Staring at the pictures, my husband, always the pragmatic one, looked at his son and said matter-of-factly, “He’ll get used to things. Just give him time.”
And he was right.
As the summer progressed, we began to notice a shift. Pictures of Charlie smiling with short-sleeves, driving a bumper car with a new buddy, holding an enlarged frame with another new friend,
and even participating in an arts and crafts event where a girl was wrapping yarn around his hands. I was thrilled at the transformation and reminded myself of how hard it can be to be the new, different-looking kid. The tendency to hide, at first, is quite natural. Knowing that, I have often reassured both my boys that the adult-world is generally different. That once you grow up, the harshness subsides and people generally don’t feel the need to focus in the same way on your difference.
But I was wrong.
Recently, I published a new Guest Flaunt on behalf of a woman named Carly Findlay. A resident of Australia, Carly has a genetic condition called Ichthyosis, which causes her skin to appear red and also has other related physical impacts. According to Carly in her post, “It was so hard being different. I wasn’t disabled enough to get the assistance I needed at school (which was a private space to apply my creams and to be able to sit indoors and read or do craft while the other students swam or played sport). But I was just disabled enough for my peers to call me names, leave me out of activities and avoid sitting on the seat I’d just sat on.”
Actually, I had read about Carly at the end of December 2013 and even blogged about her when strangers mocked her appearance on Reddit by posting an unauthorized picture of her with the comment, “WTF?” As horrible as the original post was, the follow-up comments were worse, such as “What does your vagina look like?” and “WTF is that? Looks like something that was partially digested by my dog,”
Then even more recently, I learned about Balpreet Kaur and shared her story on my Don’t Hide It Flaunt It Facebook page. The article was titled, “Bearded Sikh Woman teaches Reddit a lesson in Tolerance.” Kauer, an Ohio State University neuroscience major, was unaware that her image was starting to go viral until a fellow student mentioned it was going around on Facebook. Just as I felt with Carly, I was repulsed by how cruel strangers can be to people that look different. The first post on Reddit started with, “I’m not sure what to conclude from this.” I came from a person with the handle Europeandouchebag who posted to Reddit’s “Funny Section” a photo of Kaur standing on line at an airport. The repulsive comments piled on, such as: “Beards are now in. Yes!” and “Are you a dwarf woman? Transgender woman?”
As a parent of children who share my blatant genetic difference and who are growing up in the age of the Internet, I’ve realized that my role in guiding them doesn’t stop the day they finally and freely display their hands to other kids. It won’t necessarily get easier just because they get older. There is some satisfaction to be had from the fact that Reddit (and Gawker) are both under fire for allowing anonymous Internet bullying on their sites and are developing policies to respond to the problem. Reddit’s policy would ban, among other things, illegal activity, harassment and sexual content involving minors. But let’s face it. Social media is constantly transforming and growing. We can’t rely on every site and Internet forum to be responsible for preventing all forms of cyber-bullying against kids and adults.
Instead, now that they’re back from camp, I plan to show my kids the stories of Carly and Balpreet, who were self-confident and continued to believe in themselves, despite the opinions of online strangers. For example, when she saw the hurtful comments attached to her photos, Carly responded with a post, “The love I have around me and success I have had through telling my own story to break down stigma like these Reddit threads is stronger than any of those words. Yes I have Ichthyosis. Yes that picture is me. Don’t fear it and don’t criticize it. I am proud of the way I look, what I have achieved and for telling my story.”
And as for Balpreet, she purposefully signed up for Reddit to defend herself and her religion. “I’m not embarrassed or even humiliated by the attention [negative and positive] that this picture is getting because, it’s who I am.” She wrote. She went on to explain that in her faith her body is a divine gift and shouldn’t be changed just to conform to some other culture’s notion of beauty.
I am convinced that having our kids experience a new environment like going to sleep-away camp forces them out of their comfort zone, and it is ultimately worthwhile. When we finally had packed the kids belongings up from their three bunks, Charlie turned to me, surrounded by many kids. He flashed a huge smile and raised his hands high in the air for me to take a photo. There is an expression I love: “Slow and Steady Wins the Race.” Getting my children to develop the strength that Carly and Balpreet displayed won’t come overnight or in a single teaching moment. And quite frankly, even back from camp, every time they step out in public, our sons are forced out of their comfort zones anyway.
Learning to deal with the reactions from strangers is a continued but worthwhile process. And with time and commitment it can lead to unconditional self-acceptance. Therefore, even if the strangers that encounter those of us that look different choose to be unkind, it thankfully won’t matter anyway.