Everyone has a secret.
Mine is hidden beneath the skin, encrusted in my DNA, determined or at least shaped for me before I knew what DNA meant.
I was born with atopic dermatitis. Until I was around 9 or 10, glaringly red, sometimes wet, mostly scaly non-contagious patches and scars covered my arms, neck, legs, and back.
I remember the first time I ever felt truly different. It was first grade, in the bathroom, the rest of my swimming class putting on their goggles. I, on the other hand, slowly peeked out, in my own one-piece. Sneaking out and joining them, they had stopped talking, to look at the scratches and red patches that covered my arms, back, legs, and neck. Everything was quiet, all that could be heard the people outside the bathroom, chattering away about some person’s birthday party. And then the comments began.
“What….What happened to you?”
“What’s wrong with you?”
And simply stares. From then on, I would wear long sleeved swimming suits to swim class and the beach.
You will never know that by looking and talking to me. The scars have faded away, the red patches coming back in easily hidden places. I do not carry myself the way stereotypical victims carry themselves on TV or movies. And yet the scars inside have far from faded away. When I moved abroad, I was able to start over, to unlock parts of myself that had been locked up for so long. The writer, the dancer, the artist, the girl who liked music and was finally normal. I learned to hold my head up and slowly stop the voices whispering, “what’s wrong with you?” inside my crowded mind.
But I am the more fortunate of so many others.
For those who cannot move, cannot reinvent themselves or even worse, fated to a terminal illness, they are stuck with a social stigma alongside the physical and mental struggles their medical conditions impair them with. While there have been so many advances in the institutional and infrastructure level, with the UN Convention on the Rights of Persons with Disabilities in 2007, Thailand leading the way with the Universal Education Act for Disabled People in 2008, and various movements with the rise of “ableism” and “disabilism” around the world, what must also be taken into account are the social side effects of having a medical condition. Many medical conditions seem or are too minor to be considered a disability, but even aesthetic medical conditions can have fatal consequences socially and emotionally.
Growing up, there were no words to describe my situation, and so I kept quiet, the years of stares and whispers trapped inside my head.
I believe that there needs to be a more encompassing word to empower people with medical conditions to express what they’re going through, because without words, there is no power. And this word, is ailism. “Ailism,” deriving from “ailment” and also a distant cousin of “alienation,” means social discrimination against people with medical conditions. While racism and sexism has opened up the way for widespread, pop culture conversations and advancements in the social spectrum, there is a social revolution starting to brew. It’s time for things to change
#Ailism, we are human too.
It’s time to make a change.