Hello friends and family! Guys, gals, and nonbinary pals! It’s been a while since I last posted and so much has happened! (There’s obviously the bad stuff like the United States’ failure to deal with COVID-19 and the protests in response to the ongoing police brutality faced by people of color and the lack of accountability of police officers, but let’s focus on the good stuff, shall we?)
I graduated! That’s right! I, your resident spoonie with major procrastination issues, managed to graduate! And not with just one degree, oh no, I couldn’t just do what most people do. I graduated with two Bachelors of Science, in Theatre Studies and Women’s Studies! It’s been 5 years of hard work, massive support from my family and professors, and many, many breakdowns.
That sounds like an exaggeration, but it was a long 5 years. But as many times as I broke down, as many times as I sat in my professors’ offices crying that I didn’t think I could graduate (multiple professors; I like to spread the wealth), for every time I fell I got back up one more time. And that’s the key, isn’t it? If I had been told my freshman year all the struggles I would face, all the battles I would fight, I probably wouldn’t have gone to college, or at least I would have really considered if the lifetime of debt was worth it. But I faced the challenges, fought the battles, and made it out the other side a proud owner of two degrees and a disturbing amount of student loans.
But I’m not here to talk about my gaining-interest-as-I-write-this debt. I’m here to talk about the warrior narrative. What is the warrior narrative? Actually, I used it in the paragraph above.
The ‘warrior narrative’ refers to the use of war imagery and other battle metaphors when describing a person’s journey with chronic illness or describing the person themselves. Most of the time this common figure of speech is used innocently. Obviously, I’m not that opposed to it as I use it to describe my tough days, on occasion myself, and in the name of this blog: “Worry Warrior”. (To be fair, that’s because worrying is something at which I excel, and also because I’m a sucker for alliteration.)
But whenever the warrior narrative has been applied to me or my illnesses, it’s always been on my terms. A lot of folks in the disabled community are not as fortunate.
The most common warrior narrative is found in those with a rare or terminal illness, and oftentimes used post-mortem. Think “they fought bravely, but ultimately cancer won in the end” kind of speeches. I can understand why people use this kind of metaphor. They want to show that the person was strong and resilient and that they continued on despite their struggles. But what actually happens is that the narrative puts a lot of pressure on us spoonies. The idea that someone can ‘win or lose’ a fight with an illness makes it seem like we have a choice in the matter, that we have any sort of control over the state of our bodies, when the reality is that we are at the mercy of what our illness decides it’s doing that day. We are not strong because we carry on, we carry on because we are strong. Because what other choice is there?
One of the most frustrating aspects of the warrior narrative is it’s use in ‘inspirational’ news stories, typically following a terminally ill child, or some older white man who ‘overcame’ whatever ailments made him slightly more aware of the disadvantages of people in the disabled community. (No hate on white guys, but like, personal experience should not be the deciding factor on giving your support to the disabled community. Also there are plenty of women of color who deal with the same shit but do they get a multi-episode special on TLC??)
You see it all the time. How the child using art therapy to cope with the pain and sorrow of late-stage cancer gives the average Joe ‘hope’, or the person with prosthetic limbs training for a marathon is ‘inspirational’. I’m not saying that these things are not inspirational or that you shouldn’t have hope looking at the amazingly deep artwork of that child. What I’m saying is that we need to stop using chronically ill people as the poster child for our inspiration and sense of purpose. Running a marathon is difficult on it’s own, and I cannot imagine how much more difficult it becomes when working with prosthetics, but the focus is never on the accomplishment by itself, it’s always a story of how this person ‘overcame’ or ‘fought against’ whatever illness or disability they have, and in turn, making this a story for able-bodied people by saying “hey, life may suck but at least you’re not that guy! And look, even though his life sucks way more than yours, he’s still doing things, so go out there and do things too! If that poor, miserable, crippled soul can do things in life then so can you!”.
Here’s the deal: You can be inspired by me, but I do not exist to be your inspiration. My ‘battles’ with chronic illness are not fought because the universe decided I was strong enough to overcome; they’re fought because what other choice do I have? I could lay in bed all day, doing nothing and being horribly depressed (not to say I haven’t done that before), or I can get up and live my life. No matter what I choose I’m still going to have these illnesses. The focus should be on how we work with our illnesses and do great things, not how we ‘fought and won’ against all the odds.
The warrior narrative can be extraordinarily helpful to spoonies. Instead of sinking into the worldview of ‘barely surviving’, we can see ourselves as kick-ass superheroes, because dammit it’s hard, and it is a battle some days to get out of bed and be a human. But don’t use it against us. Don’t use us as your inspiration. My disability does not exist to help you feel better about yourself.
The next time you see one of those warrior narrative stories on the news or in a reality tv program, pay close attention to how they talk about the person with a disability. Listen for key words and recognize that while we are fighters, it’s on our terms, not yours. I am a person all on my own. I do not fight against, I work with. I take care of myself, stand up when I am able and rest when I need to. And if you look closely, you’ll see that just like you, my limits are what I make of them.