In December 2019, I took on one of the most nerve-wracking challenges of my life and gave a TEDx talk in York. You can watch the talk on YouTube, and below you’ll find a blog post equivalent of what I wanted to say… all about redefining success as a disabled person. I really hope it gives you some food for thought!
So, I’m the kind of disabled person you don’t see in the media. I haven’t climbed a mountain, I haven’t defied the odds and become a medical miracle, and I have no plans whatsoever to compete in the Paralympics.
Instead, I was lucky enough to acquire a debilitating chronic illness as a teenager. It took five years to find my diagnosis, and even then I was left with no prognosis, no targeted treatment, and no cure. In fact, all I had back then was just a handful of leaflets, some prescription painkillers, and a questionably wobbly wheelchair who I proudly named George Ezra.
I had to recalibrate my entire young adult life to accommodate my illness and really, this is where the trouble first began.
Prior to my own diagnosis I had very little experience of disability and ill health, other than what I’d seen in the media. And to me, the media had typified disabled people into two very clear camps. First, you had ‘the superheroes’: the ones who are ‘overcoming’ what are described as their ‘limitations’. These are the people we see hailed as miraculous beings, people to remind all of us that ‘anything is possible if only we try hard enough’. They’re praised by the media and the general public for putting themselves at risk to achieve their goals, sacrificing everything to ‘defy’ their disability.
And then there are the others. The ones equally as quick to be labelled as the ‘fakers’ and the ‘benefits-scroungers’. The ones who actually dare to share the discrimination they face when trying to access the support they’re entitled to.
As somebody who’d unknowingly internalised these two stereotypes, it therefore felt only right that I should strive to be in the former category. I valiantly declared to myself that I too should be a ‘superhero’. I thought that if I wanted to be one of the success stories, I needed to really push myself to make tangible physical accomplishments, regardless of whether or not it was safe for me to do so.
So, in those immediate months following my diagnosis, I did what I thought I was supposed to do: ignore any pain or suffering to the best of my ability, squash it all down, and continue with everyday life as if nothing had happened. I’d try and continue pulling all-nighters to get my university work done like my peers, and then crash, ending up confined to bed for days as a result. As a former dancer, I even continued taking ballet classes for a time. I’d get taxis right to and from the door and minimise any physical movement in-between, and it was only when the pain finally became unbearable that I reluctantly ceased attending.
Because of what I’d internalised from the media, having to cease doing things how I once did them and actually accommodate my illness made me feel like a failure by default.
The more I tried to do what I thought I was supposed to do, the more unwell I was actually making myself. Attempting to take these massive steps forward meant that I ended up completely burned out: physically, mentally and emotionally. And the more I tried to fight against my situation, the worse it became.
We live in a world that normalises fast-paced living, and glorifies the idea that burning ourselves out is the key to success. We’re constantly positively reinforced for taking massive steps forward, never allowing our pace to decrease. And even when we do manage to achieve our goals, it can still feel as though we’re not enough in a world that’s constantly demanding more and more.
To an extent, I think we’re all trying to emulate what we see in the media; this ideal of what ‘success’ in this day and age should look like. It’s almost become trendy to be exhausted, as if to prove how hard you’re working. If you don’t feel completely wiped out by the end of the day, have you really worked hard enough? If you have the audacity to actually take a break and look after yourself, does it mean that you’re less inclined to be a success story?
As a professional patient and a chronically fatigued human being, I think it’s seriously worrying to see how this trend has developed. It was, after all, my own internalised beliefs of what a successful disabled person should look like that caused me to over-exert myself and become even more unwell.
Now, I wish I could say there was a lightbulb moment where it suddenly hit me that what I was doing wasn’t safe or healthy. But what actually happened was that over the next couple of years, things began shifting in my head. I was beginning to learn more about the true nature of my condition and the most effective management strategies, and thanks to online blogs and social platforms, I was beginning to challenge what I’d seen in the mainstream media and connect with other people like me. People whose dreams are far bigger than their daily energy expenditure.
It was around now that the seeds of a realisation were first planted. I didn’t need to be attempting these massive steps forward and making myself unwell in order to prove a point. I didn’t have to be relentlessly fighting my condition in order for my illness experience to be valid. I didn’t need to fall into either of the extremes pre-defined by people who likely had no insight whatsoever into life as a chronically ill young person.
It wasn’t until later still that I began to learn about ableism, a term used for discrimination in favour of non-disabled people, and how all of these things play into it. And unfortunately, to this day a chronically ill person’s value is based on trying to be as similar to non-disabled people as possible. Our success is measured by how well we conform to this inaccessible world we live in… and personally, I don’t think that’s right.
I know that for many people who know me, a full recovery from my condition would be the ultimate marker of success, despite the fact that modern medicine is still yet to figure out my condition in the first place. Many people would think that walking lengths without my wheelchair would be the ultimate end-destination for me… and that’s despite the fact that I can get so much more done without compromising my health by using my electric wheelchair, Janice. Honestly, you should see us when we get going at our nifty 4mph.
I suppose the point I’m making is that people’s circumstances are so diverse, and it’s all about finding what works best for you and your own situation, without subjecting yourself to the dreaded burnout. That, I think, should be the real marker of success.
As I mentioned earlier, however, one of the biggest markers of oppression for disabled people still seems to be how success is reported and defined by the media. We’re still only seeing the stories from the extreme ends of the spectrum: the ‘superheroes’ vs. the ‘benefits-scroungers’, rather the ones who fall in the middle. The ones who are achieving alongside their illness rather than defying it.
And I mean… I do get it. I know that a wheelchair user climbing Everest makes a much more compelling headline than ‘Pippa from Yorkshire put the dishwasher on today’.
However, instead of conforming to what society expects of me, I began to turn my thoughts towards redefining success within my own situation, and how to achieve that realistically. And thank goodness I’ve now learned that breaking things down and tackling them a bit at a time is so much more sustainable than bulldozing through life and burning yourself out as a result.
I started finding opportunities where I could work from home and manage my condition. When these didn’t feel ambitious enough, I began creating my own. I wrote most of my debut non-fiction book from my bed, and I’m even starting a business without leaving the house. I’d like to believe that I could achieve world domination one day, provided I’d had my meds and a little lie down first.
I suppose my take-home point is that the path to success just isn’t as linear as the media would have you believe. We don’t need to be all of the things all of the time to be worthy of acclaim. Put simply, we don’t have to be constantly burning ourselves out in order to be considered a success story.
But something that’s been really interesting to observe, given my own stance on the issue, Is what’s happened when I’ve had opportunities to be in the media myself. I’ve actually experienced people trying to twist my story, to make it look like I too ‘defied’ or ‘overcame’ my own condition, in order to box me within that very same stereotype that had such a damaging effect on me. And I’m not having it.
I haven’t defeated my illness. But that doesn’t have to make me any less of a success story. If anything, I think the challenges that myself and so many others in this country face make our achievements all the more significant.
We might not be plastered all over the media or feeding into that same stereotype that had such a lasting effect on me… but I’d like to believe we’re the generation slowly beginning to challenge and modify that stereotype, and hopefully make things better for the long-term ill people who’ll come after ourselves.
It’s time we shift the focus away from ‘defying’ our disabilities and instead focus on defying the ableism we see in the media instead.
I might never climb a mountain, or indeed the flight of stairs in the big Tesco. I’m certainly not a medical miracle, and I’ll never compete in the Paralympics… unless they were to implement an extreme tea-brewing event one day, because I’d definitely be a medal contender for that one.
Instead, I’m finally learning to be proud of what I’ve achieved so far and how my story is writing itself. I know now that I don’t have to be constantly fighting against the cards life has dealt me in order to be worthy of acclaim. Instead, I’m grateful to finally be realising that in order to really be successful, there’s nobody’s path to follow but your own.
Where To Next?
- The Turtle Of Oxer-Exertion: A Chronic Illness Metaphor
- On The ‘But They Didn’t Let It Stop Them’ Narrative
- For The ‘In-Betweeners’ – The Invisible Challenges Of Moderate Chronic Illness
- Introversion And Chronic Illness: Changing The Narrative
- For The ‘In-Betweeners’ – The Invisible Challenges Of Moderate Chronic Illness