Carly has a lifelong genetic chronic illness called ichthyosis form erythroderma (which means scaly red skin). Her skin gets itchy and sore, she gets infection easily which sometimes result in hospital stays where she is bandaged up like a mummy. You can read more about her story here.
I had the worst end to the best day. It was spent with friends having 2 pm breakfast, wine and lots of laughs. Fantastic company, lots of fun.
I headed home on the train about 6.30. I put my headphones on and noticed a group of four teenagers staring at me. My music was on softly so I could hear them say how red I look, and laughing about my appearance.
The ones who could see me pointed me out to the ones who were facing away from me. For them to get a better view, two of them took photos of me on their iPhones and showed them to the others. The angles they held their phones at made it pretty obvious they were photographing me. They continued to take photos of me, and when I stood up to exit the train, there was a mad scramble to put their phones down.
I rarely confront someone if they aren’t directly speaking to me about my appearance. Today I did.
When I reached the door, I said ‘hey guys, could you please stop taking photos of me and showing them around. It’s disrespectful’. Of course they denied it, muttering how stupid I am to say that. I said ‘I may be red but I’m not stupid. I could see what you were doing’. Smirks continued. I said something else about them not understanding or respecting disability, and mentioned that my appearance has got me a role on TV. I was shaking, and even almost an hour later, I am still shaking.
Then, for the kindness of strangers, a man who sat opposite the kids took out his headphones and gave them a serve, telling them to stop harassing me and that he’d take them all on. It was quite a hallelujah moment for me. He really did improve the situation.
It’s rare that strangers come to my aid when others stare, point and harass me. I thank this man so much for doing so. He’s a really good person for doing so.
I doubt these kids will even reflect on what they’ve done and I’ve said. They’re probably laughing about the crazy red girl who told them off in the train, and comparing pictures of me with their other small minded mates.
I was speaking to someone yesterday about the hot weather, and how I hate it. She sympathised with me. I said that the weather is physically difficult for my skin, but the thing that is often worse is peoples’ reactions and assumptions about it. Times like today I feel like a freakshow. Like the silverchair video. But without the botox or Daniel Johns.
I know I’m not a freak. But I am someone whose appearance is ridiculed on a regular basis.
I do know, however, that I am courageous, smart, positive, and beautiful enough to rise above their shit. I also have enough self worth not to carry this day with me for the rest of my life, and remember that the peoples’ opinions about me that really matter are those who love me for who I am.
Carly recently appeared in Mamamia’s Wardrobe Week – take a look:
[nggallery id=709 template=carousel images=0]
When was the last time you stood up for someone? Has anyone ever stood up for you?