On The “But They Didn’t Let It Stop Them” Narrative

pippa stood holding up social media-style facebook photo board and smiling as somebody else takes a picture of her
Image Credits: Alice Lodge Photography [cropped by Pippa for social media]
Something I spend more time thinking about than perhaps is good for me is how disability is portrayed in the media. I recently gave my first TEDx talk, all about how the language used around disability and success seems to be ingrained in ableism, and constant-real life examples mean that I come back to this line of thought time and time again.

The example that prompted this particular blog post is a phrase I’ve seen used in the reporting of disabled people’s achievements time and time again: “… but they didn’t let it stop them.”

They didn’t ‘let’ it stop them. They didn’t consciously decide to let their disability win, and went on to accomplish something remarkable. Good for them. Genuinely no sarcasm intended; I wholeheartedly agree that we should celebrate disabled people’s achievements and give individuals the acclaim they deserve, no questions asked.

The thing that gets me, however, is the idea that the person in question had any conscious control over whether or not their condition prohibited them from setting out to do something. They didn’t ‘let’ their disability stop them; does this mean they simply chose not to allow it, that it’s purely a matter of mind to overcome such challenges?

Moreover, if somebody reportedly didn’t ‘let’ their condition stop them from fulfilling a passion of theirs, does this imply that consequentially, I’m ‘letting’ my disability stop me from doing the same?

As a personal example, I was recently sent a press release about a disabled dance initiative, an industry I support wholeheartedly, and I looked forward to reading it. However, after reading about how the founder ‘refused to put [their] passion [for dance] aside’ and let their disability win, I had to shut down my laptop and actually walk away, before I could let the full implication of such a statement hit me.

Even though I know, I really do know, that self-motivation only goes so far in ‘overcoming’ debilitating physical illness, statements like these still make me wonder if my own inability to ‘overcome’ my own condition and dance is a personal failure of mine. Perhaps if I was more determined, or more hard-working, or if I cared even more, I wouldn’t ‘let’ my disability stop me either?

Thankfully, I’ve come far along enough on my chronic illness journey to know that I’m just as worthy of success as the people who’ve managed to somehow overcome their illnesses in this manner, and most importantly, I also know that I don’t have to ‘overcome’ my own condition to have a shot at success. I’m thankful that I can keep these things in the back of my mind when confronted with such assumptions in the media.

However, if statements like these still cause my breath to catch in my throat and my heart to ache, and yes, on occasion, tears to be shed, what impact must they be having on other people? How do we make sure these people know that whether or not they have any control over their condition or wellbeing just isn’t as black and white as such statements in the media suggest?

I suppose there is a flip side to consider here as well. Although I personally find the ‘but they didn’t let it stop them’ narrative to be harmful, what’s to say that others couldn’t find it empowering? Perhaps there are disabled people out there who feel motivated by such statements, who use them to fuel their ambitions and to feel more confident in their ability to achieve… and if that’s the case, the last thing I’d want to do is undermine that.

Personal emotions aside and thinking purely rationally about this issue, perhaps it’s my own insecurities that cause me to have such a strong gut reaction to the idea that we have conscious control over our disabilities. It’s no secret that my own perceived self-worth has taken quite a knock as a result of my chronic illness and my situation. No matter what I accomplish, I often feel as though I’m not enough: as though I should be ‘more’… whatever ‘more’ even means.

So with that in mind, perhaps I’m simply being too sensitive? Perhaps I’m taking the implications of the word ‘let’ too seriously, and that I should just *let* it go instead?

On further reflection, however, I believe that I won’t be the only one feeling this way. I won’t be the only one being hurt by the way disability is portrayed in the media, and the implied ableism under such statements… no matter how well-intentioned. Chronic illness presents enough day-to-day challenges without me also having to worry whether others think the fact I haven’t magically recovered reflects poorly on my own character; that I’m somehow lacking in grit and determination. And I know for a fact that this internalised belief has come directly from the media.

As a blogger, with only a minuscule fraction of the platform that the mainstream media cultivates, I go to lengths to ensure that the content I put out online is done so responsibly; I proactively consider and address any language or statements that could be perceived as harmful by other chronically ill people, and I do it gladly. I personally think that if any of us have a platform, we have a responsibility to use it mindfully, and I only wish the media would consult with disabled people more openly and strive to do the same.

I will always champion a person-centred approach over trying to be that *model inspirational disabled person* that the media still leeches from so much. And that means standing firm on the idea that people are not personally responsible for whether or not they ‘let’ their condition dictate their decisions.

If your illness has stopped you pursuing your hobbies or goals, I hope you know that it isn’t because you simply decided to ‘let’ it. It’s because you’re ill, and you deserve the support and compassion that will allow you to live your best life alongside your condition, rather than anybody pointing the finger and making assumptions. Is that really that radical of an idea?

I do recognise, however, that this issue is a complex one, and people will have various thoughts and have had varying experiences. How do you feel about the “…but they didn’t let it stop them” narrative? Harmful or empowering? Feel free to leave your thoughts in the comments below!

If you liked this post, you can find out more about me here, and browse other chronic illness-related posts here. And don’t forget to check out my new non-fiction book (University And Chronic Illness: A Survival Guide) too!

11 Responses

  1. Thank you for writing this. I have a progressive nEuromuscular condition, and it has recently decided to progress at a faster rate than anticipated. I find myself questioning whether i am “letting” it stop me. Upon reflection, i don’t actually get a say in it! My condition sets the limits and I just have to work within those limits. However, the media portrayal of disabled people not lEtting their condition stop them has caused me many dark moments as i second-guess my own capabilities.

  2. ”If your illness has stopped you pursuing your hobbies or goals, I hope you know that it isn’t because you simply decided to ‘let’ it. It’s because you’re ill, and you deserve the support and compassion that will allow you to live your best life alongside your condition, rather than anybody pointing the finger and making assumptions. Is that really that radical of an idea?”

    Thank you.

  3. I’m inclined to agree. There are a couple if people in my Life who have said it’s ‘good you have kept going’. I really don’t know what ‘keeping going’ means to them, less so what *not* keeping going would… but it seems to infer some sort if choice which, for good or for bag BAD days, is often outside of my control

  4. yES, ALL THE STORIES ABOUT PEOPLE “PUSHING THROUGH” WITH DETERMINATION IRRITATE THE HECK OUT OF ME, BECAUSE I’VE MET SO MANY PEOPLE WITH CFS/ME WHO DID JUST THAT AND ENDED UP MUCH WORSE AS A RESULT (JEN BREA IS ONE OF THEM). AND, PERSONALLY, I’VE YET TO MEET SOMEONE WITH THIS CONDITION WHO WEREN’T DETERMINED, HARD WORKING, PUT THE NEEDS OF OTHERS BEFORE THEIR OWN, JUGGLED MULTIPLE Tasks and expected an awful lot from themselves in terms of achievements. but it’s the publicity that the “didn’t let it stop them” lot get that worries me. we have different levels of this illness and some can still work, for example (even though they may spend every evening and every weekend just recovering) but that doesn’t mean that every sufferer can (some can barely get out of bed). i don’t want other people’s ability to “push through” feed into society’s tendency to victim blame. (And into our own tendency to blame ourselves when we can’t do more). not helpful, imo.

  5. hello Pippa
    thank you for this post. though I’m only 16 and there is still loads to experience I think for me, I agree with you. earlier I thought that I was the only one thinking like that. but I’m so glad I found that I’m not the only one, you are also there thinking the same way as I do. and though I do not have a chronic condition, I’m VI and this no doubt, affects me as well.
    thank you so, so much for this post. by the way, I hope you’ll bring a version of your book which is accessible to VI people as well, I’d love to read it! and your previous book, “dear chronic illness” as well!

    love your blog x

  6. I totally agree. While I applaud those who have been able to … whatever, I dislike “not let” as though if I really wanted to, I could. I’ve gotten enough of that in real life. And, like you, sometimes I’m my own worst critic. My disabilities are intermittent and invisible, so others can’t see them. But, if I overdo, I can pay with debilitating pain for months. So praise those who can but don’t judge me for can’t. Thanks for the article.

  7. I visited my GP constantly for 2 years with symptoms before a locum doctor referred me to hospital for tests. I was diagnosed with Rheumatoid Arthritis and am now almost immobile. I still work full time but don’t know for how much longer I can. If I’d been diagnosed earlier when I first showed symptoms and treatment had started earlier I would not have got to this stage.
    People like to advise me to try to exercise and stop taking the medication and to give up work. I know what’s best for my body. If I do any extra activities I can suffer agonising pain for days afterwards. Until being like this I didn’t understand disability really. I hope I’m more sympathetic to others now. Some people, including some work colleagues are helpful and understanding.

  8. Thank you, I really appreciated reading this article. I have struggled with ME/CFS for 16 years on and off, and I’m sure that one of the things that makes recovery so hard (and why I relapse!) is that internalised societal view that pushing and struggling against illness shows grit and courage etc, whereas in my case that is the whole problem, and NOT pushing and struggling is the answer! Or rather, living in a way that takes care of myself, being gentle and doing less sometimes, that is what shows the grit and determination!! Thank you for naming this so that it will have less of a hold on me going forwards.

  9. One hundred percent! But late to the party but this ^^^, this is how I feel so often. Thanks for a great read.

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