I hate when people refer to having a chronic illness as “fighting.” I hate when people tell me they are impressed with how “strong” I am. I hate when people tell me I “inspire them” just because I have a disease. I also hate orange gummy bears but that’s not important right now.
After reading that, you probably think I’m in a really sh*tty mood. Tell us what else you hate, Becky! Let’s make everyone feel bad!
Don’t worry- I’m happily listening to Emma Chamberlain talk about what outfits are totally in style right now. And I don’t hate anyone (besides the person who decided orange would be a good candy flavor). I hate hearing all of those things because this isn’t my battle; this is my life. I’m not fighting anything, or anyone. I wake up, I go to school, I see friends, and I live, no boxing gloves needed. It’s a life with more needles, more vitamins, and more stick-on heating pads than some, but it’s mine. And I hate when people admire me just for the sake of living it.
A person in a wheelchair does not wake up every morning and “fight” against their inability to walk until they go to sleep each night; they wake up every morning, and they live. A cancer patient doesn’t walk into their chemo appointment and “fight” their disease until it goes away; they walk into their appointment because they have to, and it’s not what they want to do or where they want to be, but it’s life, and they are living.
What I hate most about the idea that I, or anyone, is “battling” a disease or disability is that all the pressure for progress rests (but really digs) on their shoulders. It’s *my* battle, so it’s *my* problem. It’s *my* job to get better. To *win.*
Okay Becky, chill. You don’t have to be a “fighter.” Just sit back, relax, hang out. No one cares! So what happens if I step down and say, what the hell, this is too much. I’m tired. Why don’t you all take over?
Well, the funny* thing is, society is only “inspired” by sick and disabled people until those people need us to fight for them. At that point, they are burdens.
*It’s not actually funny. It makes me very mad. Please let it make you mad, too.
Wheelchair users are “inspirational” until it theres’ a need for accessible spaces, then they’re problematic and why are we moving the venue for three people out of 500? The deaf community is an “inspiration” until captions are requested on videos, then they’re demanding and can’t they just do that themself? Neurodivergent students are “inspiring” until they request accommodations, then they’re asking for too much and can’t they just figure it out like the rest of the class?
This isn’t my battle; it’s ours. And it’s not a fight against a disease, but against a society and its systems that don’t see sick and disabled people for who they are: people with regular, boring lives. People who want to be employed. People who want to get married without losing their income. People who want to be in the next hit Netflix teen drama (or at least see someone like them as the main character). People who want to feel welcomed, not special.
A person is not inspiring because they are sick, and sick people don’t fight wars, they live lives. We as people are inspiring for who we are, what we create, and the way we treat each other. Our only real fight is getting everyone to see that.
I admire you for the way you live your life. This world would be much better off with more people like you living in it. And I agree with you, orange is a terrible candy flavor- red Swedish fish only please.
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Beyond amazing blog!
You said it in such a perfect way!
Love you my beautiful, girl!
G Jo
❤️❤️❤️❤️❤️🤗🤗🤗👍👍👍👍
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Another amazing job at articulating issues that impact so many. I really appreciate how you framed this. Sorry, I have mixed agreement about orange, however. It is a terrible color for candy, or anything else, but it is a good flavor.
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