2:44pm May 23, 2014

Please, don’t use Cannulas, Canes, Wheelchairs, Dark Glasses, Oxygen Tanks, or any other real or fake medical equipment if you’re dressing up for TFiOS unless you actually need those things in everyday life.

It’s made me sad that recently I’ve seen posts of people making their own equipment or buying it in order to dress “authentically” for The Fault in Our Stars, which comes out June 6th and features main characters with cancer.

The issue isn’t dressing up like these characters; I’m all for it! By all means, wear a Ceci n’est pas une pipe shirt, or have an “Imperial Affliction” book cover, or a basketball jersey, or a number of other things. But please don’t use medical anything, real or fake, unless you use it in real life.

Like I said, the issue isn’t the dressing up. The issue is taking someone’s personal struggle and identity and being able to put it on and take it off.

Like, let’s say that you have had a birthmark that takes up most of your face, and you’ve had it since you were born. For some reason, this distances you from people, makes you less able to be social, less active. The simple act of having the birthmark, something you’ve had to deal with pretty much all your life, limits you and limits the things you can do and the people who understand you. You’ve been teased about the birthmark, treated as less than human because of the limits it imposes on you. Pretend that there are special devices that make life with a birthmark easier, but that are hard to come by, or unwieldy, or that you have to have with you all the time. The birthmark consumes who you are, whether you want it to or not.
All of a sudden, in popular media, there’s a character that people love, the main character of a story, and they have a birthmark just like yours, covering most of their face. You finally feel a part of something, like maybe you’re not alone in this. Seeing the character and what they can do and their potential and possibilities make you more aware of yourself, and help you understand your birthmark better, as well as your own limitations.

Now pretend that you start to see people wearing fake birthmarks. At first you’re not sure whether they actually have one or not, and asking is rude, but you see people around. At first, you’re glad that the popular character has made the birthmarks more visible to the public. But as time wears on you realize people don’t really care about the character, about the birthmark. To them, the birthmark is just a costume piece, something they get to put away at the end of the day and live a normal life, unhindered. Pretend that you go to get a new one of your specialized devices, but they’ve run out because people are buying them up for costumes.
Pretend that you’re out at a restaurant, and there’s only a certain way you can eat, or a certain amount of time you can stand, and the people in charge either figure that you’re pretending to have a birthmark to get preferential treatment, or that someone doing just that has already taken up the only place you can comfortably be.

The appropriation of the birthmark by those who don’t have it is harmful for those who do.
It’s the same with appropriation of anything. The struggle of having an illness, invisible or not, is not a fashion statement, or something to be worn and then tossed aside when it’s no longer convenient. It’s a way of life for people who don’t have a choice in the matter.

That’s why it’s important.

I’ve already been worried about what will happen if I go see the movie in the theater, and I’ve got my oxygen canister and cannula with me. Like I feel like I’ll stand out in a way that makes me really self-conscious about it. And I hadn’t even thoughtthat anyone might actually buy a cannula and wear it like some kind of fashion accessory? And that will make me doubly self-conscious, because I’ll be thinking “Do they think I’m wearing this for fun?” instead of just “Crap, do they think I have cancer when I don’t, will they compare me to Hazel, etc.?”

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