Growing up with EEC syndrome: "Explanations"
Growing up with EEC syndrome often involves having to explain the physical disabilities of the syndrome and fending off childhood bullying.
Growing up with EEC syndrome: "Explanations"
Our relationship to explanations (for why things are the way they are) can be funny. Sometimes we need an explanation to make sense of the world. Like we can’t accept or make space for not knowing. But other times, based on our own biases and prejudices, we just assume we know the answer; and that the answer is rather cut and dry.
In second grade, there was a boy on my bus who, instead of asking with kindness and curiosity, made up his own explanation about me. One day, he stood up in his bus seat so that he could turn around and tell me, “I know why your hand looks like that...” as if I wasn’t aware of the reason already (it being my hand and all).
It was raining that day, so I had my dad’s umbrella with me. It was one of those really long ones with a curved, tan handle. You know, the kind an adult could use as a walking stick or a cane. Hell, at the time, it was probably about as tall as I was. As the boy began talking about my hand, I could feel my fight or flight reflexes starting to kick in, and I clenched the stem of the umbrella.
“Because a shark bit it off,” he said.
I was born with a rare congenital condition called Ectrodactyly Ectodermal Dysplasia with Cleft lip/palate, otherwise known as EEC syndrome. This syndrome causes deformities of the hands, teeth, and feet. At this point in time, I couldn’t remember a birthday party where I didn’t have a cast on my hand from yet another hand surgery. There are so many childhood photographs that feature this gauzy accessory. I had what is called a “lobster claw” on my right hand (yes, I agree this is a rather poor choice for a medical term), two double thumbs, fused fingers, half-sized fingers, and something I affectionately called a “nub” in place of my right middle finger. It didn’t have a nail bed, so I had trouble defining it as a finger. It also couldn’t do much. Don’t get me wrong–I didn’t mind the nub, mainly because the extra detail made my hand the perfect shadow puppet of a giraffe in profile.
So, when this boy turned around, with his arrogance and presumption, to tell me his absurd account for why my hand was the way it was, rather than cry–and allow his bullying to continue–I knew I had to act swiftly. I smacked him right across the mouth with the tan, plastic handle of my dad’s oversized umbrella.
To be fair, this boy was older than me, so he was by no means defenseless. He was also clearly a bully. But nevertheless, the bus driver stopped the bus. She walked over to us where he (sobbing and holding his cheek) pointed at me and said I attacked him. The bus driver grabbed me by the neck of my coat and dragged me up to the front of the bus, the whole time muttering how much trouble I was in. She never asked my side of the story or wanted an explanation. In retrospect, her lack of curiosity was astonishing. Who wouldn’t want to know why a second-grade-aged girl the size of an umbrella with a physical disability would choose to “pick on” a privileged and arrogant fourth-grade-aged boy twice her size?
When she dropped me off at my house, she got off the bus and told my mother what I had done. She said she was going to give my parents’ phone number to the boy’s parents and report it to the school. I believe she called me “violent” and “out of control.” When the bus driver left, my mom asked if I had anything to say for myself. Then, I told her what the boy said to me.
She paused for a moment and replied, “good for you,” and we went inside.
When we were called to the principal's office the next day, I heard the word "suspension” for the first time. I remember not knowing what it meant but imagined something fun like acrobats on wires. The principal went on to recommend several other punitive measures for my parents to consider in order to discipline me and show me sternly that this is not how little girls should act. Like the bus driver, the principal never once asked why; he never wanted an explanation. In his mind and the bus drivers’ mind, without knowing any of the context, they determined I had to be the one at fault. The little girl with the disability clearly had something “not quite right” with her head to act this way.
Then my mother told the principal what the boy said to me. All I remember after that was getting a handwritten apology letter from the boy and that he made sure to keep his distance from me on the bus, especially when it was raining.
What is EEC syndrome?
EEC syndrome (Ectrodactyly-Ectodermal Dysplasia-Cleft Lip/Palate) is a rare form of ectodermal dysplasia. The symptoms can vary from mild to severe and most commonly include missing or irregular fingers and/or toes (ectrodactyly or split hand/foot malformation); abnormalities of the hair and glands; cleft lip and/or palate; distinctive facial features; and abnormalities of the eyes and urinary tract.
Genetic and Rare Diseases Information Center
Michelle L. Herman
Michelle L. Herman, the author of Growing up with EEC syndrome: "Explanations," is a Washington, DC-based interdisciplinary artist whose practice spans theoretical and philosophical research, feminist and disability politics, comedy, and conceptualism.