I don’t need to tell you that for the UK’s general population, day-to-day living has drastically changed. For the first time in a generation, all individuals and households are facing restrictions on their freedom and independence, and at the time of writing, there’s no clear indication as to just how long this will go on for. We’re being exposed to countless stories of not only the victims and key workers of this global pandemic, but of everyday people struggling to go about their work, socialising and everyday life from within the confines of their own four walls.
Meanwhile, over here in casa de Pippa, it’s pretty much been business as usual.
Don’t get me wrong, I can foresee huge threats to my freelance work coming up in the next few months, but generally speaking, my day-to-day living has been relatively unchanged since all of this began. My career has already been designed to be as home-centred as possible to accommodate my health needs, I’ve acclimatised to not seeing other human beings on a regular basis, and over the years I’ve become pretty blummin’ experienced in proactively participating in the world from my bed.
In theory, then, you’d perhaps expect that I’m doing grand at the moment. I’m just as surprised as you might be that this hasn’t quite been the case.
On reflection, there are two main issues that I feel are affecting me, and most likely many other chronically ill people, as a consequence of the UK-lockdown…
The first issue is something I briefly touched upon on Instagram; the somewhat chaotic energy of people’s responses to their confinement. Up and down the country, disabled and non-disabled people alike, many have jumped into action: launching projects and schemes, learning new skills, throwing themselves into work or side hustles, or basically vowing to use this time as some sort of hardcore self-improvement intervention. And, of course, sharing each and every element of these things with the world via the medium of social media.
Often, it can be incredibly motivating to see amazing people doing amazing things. However, the sheer overwhelm and online ‘noise’ of all of these things suddenly being pursued in such a short space of time actually had the opposite effect on me. It made me feel incredibly under pressure to find my own *thing* to be doing, as if that was some sort of obligation in order to stay *relevant* as a blogger and activist in this fast-paced online world… despite knowing first-hand that 1) your achievements and output don’t define your worth, and 2) it’s all about the bigger picture.
Even though I’ve well and truly made my peace with my capabilities as a chronically ill worker and an all-around slower pace of life, I’ve never quite been able to fully shake the insecurity that who I am and the things I do aren’t ‘enough’. So, seeing non-disabled people using this period as something of a novelty, running their daily mile and grafting at their work, has actually been quite a stark reminder of my own limitations. Within days, it was as if the little tricks and routines I’ve developed (and always been pretty proud of) as a chronically ill worker suddenly became insignificant, and in my brain, I felt I was somehow losing at my own game.
Fortunately, I’ve now managed to chill the heck out with this one. Rationally, I know that the social media highlights reel behaviour of our generation, combined with my own insecurities, might be giving me quite a skewed outlook on the situation. And even if other people are doing amazing things, it doesn’t make my own fluffy-socked wobbly steps forward any less significant.
Ironically, taking a deliberate step back from it all these last few weeks has given me insight into the somewhat lower-key things I want to do to show my support and contribute to the effort, without compromising my health, and I’m grateful to have avoided bulldozing headfirst into something primarily out of obligation. If you too are reading this and feeling a little lost in this whirlpool of constant online shenanigans, I hope you know that taking a step back from it all is 100% okay. If anything, I’d recommend it. It’s all about pacing yourself and being conscious of the bigger picture, and looking after your own health and wellbeing is a key part of that.
The second strand, however, continues to affect me, and I have no doubt that I’m not alone with this one.
Over these last few weeks, we’ve seen huge structural and strategic changes made in sectors such as education, employment, the arts and entertainment, and so much more. Businesses, organisations and enterprises have gone above and beyond to adapt their offerings to become more universally accessible, with an incredibly speedy turnaround, ensuring that people’s lives are as undisrupted as possible whilst they’re confined to their homes. Again, this is no doubt a wonderful thing. I’m genuinely glad that we as a society are able to embrace technology, reap the benefits of adaptations like these and keep on moving forward.
The thing that’s getting to me, however, is that it took a global pandemic for the UK to accommodate the very adaptations disabled people have spent years of their lives fighting for.
I cannot begin to express just how much time and valuable energy myself and so many others have spent trying to make the world a more inclusive place. Personally, I’d made my peace with the fact that it would likely take many, many years for the adaptations we were advocating for to be implemented among the general population; that campaigning for equality would be about the longer game.
However, practically overnight, a great many of these very adaptations were implemented. And why? Because for the first time, non-disabled people realised they needed them too.
In all honesty, I’m finding it hard not to take it personally. Not as me, as Pippa, but as part of the disability community. Why is it that our needs didn’t matter when it would ‘only’ be of benefit to the chronically ill population? And even now that these changes have been implemented, how have we still somehow ended up at the bottom of the pecking order?
I’m only one person, but here are a few examples of my own that came to mind:
- My undergraduate degree was compromised because my university wouldn’t record lectures so I could more easily work from home. Now, entire programmes of study are being made available and even enhanced online, so that students’ education away from campus remains as consistent as possible.
- Behind the scenes, I’ve been doing what I can to make the arts more inclusive for those unable for health reasons to travel and experience a typical theatre environment. Fast forward to now, and for the first time, we’re spoiled for choice for productions we can engage with and experience online.
- Supermarkets are working to ensure their online shopping delivery services can cater for as many people as possible, and those identified by the government as the most high-risk and vulnerable are rightly being priorotised for delivery slots. However, people on the hypothetical next tier down, chronically ill people who aren’t well enough to leave the house to grocery shop (and haven’t been for some time), who have been doing online delivery shopping in this way for years, can no longer get their delivery slots. They’re not allowed to self-identify as vulnerable or gain priority, meaning many are genuinely going without food so that the non-disabled Karens of the world can stock up on loo roll.
- I spent years fighting for employment opportunities that matched my skills and experience, where working from home wouldn’t be seen as a disadvantage or unreasonable. Suddenly, virtually every job in every industry has become possible to sustain by employees working remotely. A special shout-out goes to any and every person who is now producing tips and guides on working from home after their grand total of two weeks’ experience in this area. A particularly special shout-out also goes to those commissioning these projects and assigning them to these rookies, rather than those who’ve been in this position through lack of choice for years. Not that I’m bitter or anything…
Now, I’ll be the first one to say that of course it makes sense that all of these things have happened now, because frankly there was no other choice. We’re in a situation where people have had to make these things work, because otherwise there’s a very real chance that society and our way of life would practically disintegrate altogether.
It’s just infuriating to think how quick and easy it was for these very adaptations to be implemented and maintained. If these very same adjustments had been made when requested by chronically ill individuals over the years, I can confidently say our quality of life would have been significantly improved.
However, I know it’s important not to dwell or harbour these frustrations too much. The next real test will be to see just how many of these adjustments will still be readily available, once ‘typical’ life begins to resume… whenever that may be. I’m choosing to indulge in the optimistic side of my thoughts, and hope that this rather strange period we’re living through could well be a facilitator in helping the world become more inclusive for all. Now that we know our society can adapt and become more inclusive when required, there’s no excuse for these actions not to be extended more readily for disabled people in years to come.
So, I’ll be honest. My own sense of self-worth and purpose has taken quite a knock from all of this. It’s difficult to know that all the work and effort I put in pretty much counted for nothing until the general population were forced to take a few tentative steps in our shoes and realise just how much these things matter. Were our own words and lived experiences not enough?
For possibly the first time ever, I recently lost some of the motivation to continue campaigning, initiating and innovating; all things that have brought me so much joy and purpose in this unpredictable life of chronic illness. However, I’m making an effort to remember that it all still matters. There’s never going to be a time where disabled voices aren’t important- in fact, in the coming months, it may well be that they’re more important than ever.
It’s a tough time for so many people at the moment, for so many reasons, and in the grand scheme of things, I’m still one of the lucky ones. This particular personal battle to refocus and find a new sense of purpose is nothing in comparison to what others are facing in these trying times… and that in itself makes me all the more motivated to figure out how I can continue to do my bit, in a way that counts.
If you, whoever it may be who is reading this, have experienced similar despair or frustrations recently, I hope you find comfort in knowing you’re not alone. Take all the time you need to regroup and figure out what you think about it all, and I feel confident that in time, we’ll find our sparkle again. Hang in there. We got this.