Health

We Need To Talk about the “Disease Warrior” Model

Something that I have never been able to quite put my finger on how I feel about it is the “disease warrior” model. In its simplest form – and I am definitely going to get into this in more detail shortly – this is considering someone a warrior against a disease. I’ve been struggling for a while to wrap my mind around the concept and, more specifically, how I feel about it. I’ve come to the decision that it makes me uncomfortable, and I’m reminding myself that I don’t have to hate or love something used to describe my community – I can feel somewhere in between.

That being said, everything in this post is my personal opinion, unless I quote someone, in which case I specify who said what. I’m definitely not saying that you shouldn’t use this model, but that it makes me personally uncomfortable. As always, I’m only speaking for myself. (Did I mention that I’m only speaking for myself? 😉)

There is a certain model when talking about ill or disabled people that's loosely called the "disease warrior" model. Basically, it's when you call someone a "cancer warrior" or an "arthritis warrior". But we need to talk about it.

What the “Disease Warrior” Model Means

Have you seen someone calling someone with cancer a “cancer warrior”?

Have you been called an “RA warrior”?

Those are just some of the blatant examples of the disease warrior model. But it’s not always that clear.

Other examples are saying someone “lost their battle with ALS” or that they’re “battling ALS”.

People using these phrases don’t mean to be harmful, and they actually use them to represent how much the person with the disease is dealing with! They want to honor the person with the disease.

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It’s a different situation when someone with a condition calls themselves a warrior, though mostly when they’re the one who starts it.

If Person A calls Person B a warrior, and then Person B call themselves a warrior, that’s a little murky. Do they actually want to call themselves that or do they feel like they have to? If it’s the former, then hell yeah, go you! If it’s the latter, that’s a problem.

Speaking for myself, I do generally feel like I’m battling my own body. But I don’t usually feel like I’m winning. Actually, I pretty much never feel like I’m winning, so does that mean that I’m losing? I don’t want to talk about myself as someone who is constantly losing, especially as I generally don’t feel like I’m actively losing a fight. And “losing” in this scenario generally implies dying. In that sense, I’m not losing.

What it comes down to is ownership and control of the phrase.

That being said, let’s talk about what’s actually wrong with the “disease warrior” model.

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The Problems with the “Disease Warrior” Model

Problem 1: It makes it sound like someone has failed because they didn’t fight hard enough to beat the illness

This is especially clear when someone dies from the illness – “so-and-so lost their battle with [insert illness here]”. And that implies that they didn’t do enough to win, aka survive.

It is not the fault of a cancer patient if they die from cancer, which is an incurable illness.

It is not the fault of an ALS patient if they die from ALS.

This puts the pressure of surviving (or dying) on the patient.

I completely understand wanting to shout from the rooftops that someone survived cancer. And they should do that! You should shout that someone you care about survived! That’s awesome!

But it just feels wrong to put the pressure of surviving on the patient.

Honestly, though, if a patient wants to say that? That’s not an issue. (Also, I would never tell someone they can’t use the language they want to describe themselves unless it is an issue related to something like racism, sexism, etc.)

Problem 2: It can put a negative light on someone’s regular day-to-day life

This is most applicable when someone doesn’t necessarily have a deadly illness. There are plenty of disabled people who are fine with their disability, and if you use “[disability] warrior” to describe them, it makes it sound like their disability is a negative thing when they don’t feel that way.

Disabled people already deal with a lot of people going “Oh, poor you” when they might not feel that way about themselves. If you insist on using that language when they don’t feel negatively about their disability, you’re also taking away the agency of the person living with it. If someone doesn’t feel negatively about their disability or life, and you’re repeatedly using negative language like “battling [disability]”, you’re showing that you don’t respect them or how they see themselves.

Many people don’t mean that when they using “[disability] warrior” language, but if someone has repeatedly said that they like their disability or their life, then you shouldn’t use that language.

There are many people who do like the disease warrior model! But not everyone feels that way. If you’re unsure if you should use it, ask them! You can say, “Do you mind if I call you a [insert their disability here] warrior?” They might say, “I don’t care!” or “It’s fine to call me that.” But they might not.

It’s really important to think about the language you use when you talk about someone. And that applies to everyone, not just someone with a disability!

Problem 3: It puts someone into inspiration porn

Inspiration porn is a product (essay, picture, poster, etc.) in which someone is considered inspirational solely because they have a disability. Sometimes, people don’t realize that’s why they find someone inspirational, but when you break down what it is that inspires the person looking at it, it comes down to disability.

One example of inspiration porn that you might be familiar with are all the inspirational posters that feature people with some type of disability on them, like a wheelchair-using athlete or a child with prosthetic legs. Often these posters have something like “The only disability is a bad attitude” (and don’t even get me started on why that quote is ableist) or “What’s your excuse?” on them.

When I first wrote a post on inspiration porn, someone on Twitter said something like, “Well if that’s inspiration porn, then most inspirational posters are inspiration porn.” Their tone was very gotcha, like they were catching me in something. But I just said, “Yeah, that’s exactly it.”

Inspiration porn is a problem because disabled people don’t exist to inspire others, and simply living with a disability isn’t something that should inspire other people. Is it inspiring when someone does something amazing? Absolutely. Is it amazing to continue existing when you have a disability? No.

These things reduce people with disabilities down to their ability to inspire people. We become objects in a ways.

If you’re still wondering why inspiration porn is so bad, here’s a great Q&A piece about inspiration porn by Cara Liebowitz in which she explains it to an abled person. In it, she says, “Reducing a human being – and a stranger, at that – to ‘inspiring’ or ‘brave’ or any of those labels is problematic, because you’re filling in qualities that may or may not be true in order to make yourself feel better. It’s using disabled people as tools for your own betterment.”

Not all disabled people are going to do inspiring things. So how can you assume that a picture of a disabled person is a picture of someone who has done something inspiring or brave?

On Inspiration Porn

3 problems with the "disease warrior" model Click To Tweet

I am not the end-all be-all for any disability topic. There are going to be other disabled people who disagree with me. Maybe they find it empowering to be a warrior. I personally don’t. That is okay! What isn’t okay is me saying “You’re wrong” to another disabled person who disagrees with me or them saying that to me.

But the worthy discussions on this term and similar ones are really just among the people with the condition. An abled person does not get to tell me that I’m wrong. Someone without any chronic health issues doesn’t get to tell me that I’m wrong. You are not affected by this term that I find patronizing, and as such, you don’t get a vote. Just like I don’t get a vote when it comes to other situations in which I am the privileged one.

Obviously this is a contentious phrase. I won’t be mad at you if you’re abled and you comment below about how you disagree, as long as you’re polite about it. But I’m not going to argue with you, and I’m not going to take your opinion about this phrase into consideration. So, that being said …

What are your thoughts on the “disease warrior” model?

Like this post? Check out:

Describing Pain Levels to a Doctor, Chronic Illness Advice: Resources for the Newly-Diagnosed Patient, How To Become an Advocate for Patients, Everyday Ableism

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6 Comments

  • Reply Taylor

    This is something I haven’t really thought much about before. For me, I’ve got a few mental illnesses and am also a survivor of abuse. Just like you, I don’t love giving people the term warrior and probably wouldn’t use it to describe myself. This post definitely gave me something to think about, and I know I’ll choose my words more carefully in the furture.

    September 4, 2020 at 4:24 pm
  • Reply Vanessa

    I have never thought much about this before. Although, there have been times where I have bristled when I’ve heard someone say ‘Lost their battle with cancer” etc. This is definitely eye opening and good to bring awareness about the topic!

    September 4, 2020 at 7:23 pm
  • Reply Kait

    This is an interesting perspective that I haven’t heard it articulated, but I think I agree with it. I like the idea of each person deciding on their own terms how they want to handle the relationship they have with their disease, disability, or body, and not giving labels out to others.

    September 5, 2020 at 12:45 pm
  • Reply Christa

    You did such a wonderful job of articulated a lot of my own thoughts. I think it’s important to allow someone to decide their own identity and label.

    September 6, 2020 at 12:29 pm
  • Reply Cynthia

    Great post!! As someone who has accepted her illnesses and only fights to improve my lifestyle by modifying it to cater to them, it annoys the heck out of me when people act like I should be on a mission to heal myself from diseases that I can’t be healed from.

    September 6, 2020 at 8:39 pm
  • Reply Via

    This is such a refreshing post to read! I’ve always struggled with the concept of being seen as “strong,” as in “you’re such a trooper.” I think that ANYONE could endure an illness if they find themselves in such a situation. Thanks so much for putting it so straightforwardly – only people who are disabled in some way get an opinion about if this is validating or hurtful.

    September 8, 2020 at 6:53 pm
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