My body is not your conversation piece

(A piece taken from my current work in progress. I have heard so many hurtful comments from well intentioned people during my time existing in a disabled body, and especially around my latest surgery. If you want some advice, take this: stop making comments about people’s bodies. Anyone’s body. Even if you think you’re trying to be helpful. Even if you’re curious. Even if it’s your friend/child/partner. Whatever you were going to say, just don’t.)

My body is not your conversation piece.

 I am in elementary school when I learn my body will be the topic of conversation in any room before I even open my mouth. People stare and whisper comments of “I wonder what’s wrong with her” and the disability culture of the 90’s suggests just asking, like it is the responsibility of a disabled individual to educate you on all the ways in which their body differs from yours. 

 I learn to camouflage. I dye my hair bright colors, wear vibrant red lipstick and ornament my body with expensive fabrics and jewelry. If people are going to stare, I might as well make it worth their time. I should be known for things that aren’t what my body lacks. 

 Conversations about my body are had in mall food courts and at sporting events, my parents try to teach me not to be ashamed of my body, and people say things like “I wouldn’t even know you were sick. You’re so pretty.”

 I want to throw up, but I paste on a paper smile instead. These aren’t the compliments you think they are.

 We attend conventions for people who all have the same disease as me, and my mother says “Look, you’re not the only one” like this is comforting, like being around other people who share my disease will make me more normal or at least better at blending in. I wonder why we are all pretending to be average, that we can and should do what other people do, why hiding what makes us different becomes the most comforting thing anyone can offer us. 

 “Don’t be ashamed of who you are,” They tell me, “No one can really tell you’re different anyway. You can still do everything a normal kid would do.” Each word a dagger, a reminder I am not average. Each word is an erasure of the thing that makes me unique. Do I hide it or embrace it? Everyone tries to make me feel normal, and it only serves to alienate me further, and I begin to wonder if it was never really about me to begin with? 

 I am 24 years old, after the first, and second, and third surgeries all designed to make me normal. “Aside from a scar, there’s nothing that separates you from the general public,” The doctor says, like it's encouraging. I am not normal, I have been through hell, and I want an acknowledgement of all my body has done and all the ways I have fought to survive. No one can tell but what if I want them to? I begin telling my story, in my own words and on my own terms. The unexpected consequence of this is that I become an inspiration story, I fit neatly into a trope that has been handed down to disabled individuals for decades, and my existence still serves to make the general public feel better about themselves. Even as I am telling my story, it isn’t about me.

 I am 25 and my body is crumbling apart again. “We thought this was a good thing,” People say as they highlight my symptomatology, “You were doing so well.” And once again I feel betrayed by the people who never saw me, who only saw my pretty picture and how close they could stand to its gleam, who gathered inspiration from my pain and never thought for a second about the person behind it. I begin to notice the entitlement people have towards my story, hearing it and resharing it, and I become silent. I wonder if anybody has noticed I stopped talking when the chatter about me still continues. 

 My body begins wasting away, and people tell me they wish they also had a disease that made them skinny. They make jokes about a life they do not understand, talk about my medical history like they do, and I do what I was conditioned to do and put on a fake smile while suppressing a scream.

 My body is not your conversation piece. I am not your inspiration. I am your worst nightmare, and you don’t get to fetishize my existence into something it’s not. You don’t get to pretend to know when you don’t, when all you see is a fractured kaleidoscope image of a whole. 

 There comes another surgery, and this time I do everything in my power to avoid word getting out. My story belongs to no one else, my body belongs to no one else. I share the news with a handful of people, and do my best to avoid the others. When I hear my name in the rumor mill, sprinkled with disinformation, I cry from 2am on til morning. 

 My body doesn’t belong to you. 

 I don’t share what happens next. I have been the topic of so much conversation I twist in shame at the mention of my own name. I am constantly looking in mirrors only to see a reflection I don’t recognize. 

 “They mean well,” I hear multiple times a day, like this makes it better, like this entitles people to a slice of my story. A well intentioned theft is still a violation. 

 I begin sharing my story through myth and metaphor, and it feels like healing. People become angry I don’t share more. I don’t leave my house, and I stop answering the door. Every moment of fire feels like a reminder that I belong to me, and I roar at everyone who suggests otherwise. 

 Here is the thing I’ve learned about existing in a disabled body: everyone feels entitled to a piece. The story of my body has always been about what it can evoke in others, how comfortable I can make them, and how small I can make myself. If I can smother the other-ness inside this skin, if I can put on a fake smile and offer up inspiration like candy, maybe then I can fit in. 

 I have learned my body will command a room before I even open my mouth, and not in a desirable way. It doesn’t matter what I say, I will be talked about anyway, and when you exist in a body that isn’t the norm somehow this means your survival is fair game for dinnertime conversation, sandwiched between politics and the weather. 

 My mother taught me to be polite, but that narrative never served me, only made those around me more comfortable. I want to become the thing with teeth. Let my body intimidate you, it isn’t your conversation piece.