Although the pandemic was hard on everyone in the UK, Barbara Stensland noticed some positives emerging from the crisis. Disability access to events and telehealth care improved, as did inclusivity for all.
For a few small – but important - things, Barbara felt like people with long-term disabilities were finally being noticed and considered. She hoped these changes would last beyond lockdown and well into the "new normal."
The COVID-19 worries aren't over. Yet any of the small gains people with chronic health issues had are already disappearing.
As restrictions in the UK have been lifted, many of us have returned to taking regular trains, buses, and flights. Once again, cinemas, restaurants, and attractions are taken for granted as being completely accessible... Provided you can deal with the travel, seating arrangements, stairs, and walking distances.
But for people like me, the new wave of virtual entertainment was the best part of a new, strange world. We could finally access everything we couldn't in their usual crowded, disability-unfriendly venues. Suddenly, we were getting the "best seats" at the world's hottest events.
I could watch live theatre curled up on my sofa. I got tours of the best museum exhibitions in London as I ate my lunch. As I watched these marvels from my living room, I wondered aloud, "What took everyone so long to do this?" even though I knew the answer.
However, the world outside our screens has changed. Everything has gone back to "normal," and now millions of unseen people suffer for it.
COVID-19’s new world came with new rules
I have multiple sclerosis (MS), and for someone like me, the "new world" was a strange and anxiety-inducing place to rediscover. I hadn't travelled much more than the state-mandated five miles from home for over a year. This was bearable until a sudden family bereavement necessitated a journey from Wales to Scotland.
I enlisted a friend to share the drive after considering and then discarding the idea of flying. The endless queues, sharing enclosed spaces with possibly infected people, and the soullessness of COVID-19 air travel didn't appeal.
We revelled in the freedom of a long drive despite the awful circumstances. That is until we faced the reality of driving through three different countries. Though England, Wales, and Scotland are neighbouring countries, all three had their own rules. In England, for example, we had to sit outside in the cold for a McDonald's coffee. In Scotland, most fast food places allowed us to sit inside.
Masks were seemingly optional in England but strictly enforced in Wales. People in motorway services barged into me in England but gave me a wide berth in Scotland, and so on.
Since then, I have had weekends away with friends in London and Oxford, and I have never been happier to return home. Even getting around my own relatively small city has been a trial.
Things changed, then changed again, then changed again.
"New" became “new normal” and then faded into “normal-ish.”
Everything moves on, but I wonder if we all have genuinely adapted to these quick-fire, on-off-on-off rules and regulations?
Do more of us hold onto feelings of loss and confusion than society encourages us to admit? 15% of the global population is disabled, roughly one billion people. There is, undoubtedly, a significant number of us who may feel like this but won’t – or can’t – say as much.
Once we'd finally adapted to being cooped up inside, the rules changed. We could go out again! We could go to a cafe and eat real chips we didn't oven-cook ourselves! We could see shows, arrange day trips, and bask in some culture.
Well, sort of – if you could jump through the right hoops.
Chaos and confusion happened for everyone – especially those with disabilities
First, there was the COVID-19 booking system, and each restaurant, museum, event, etc., had a different one. It was an excellent start if you could navigate these without throwing your phone or computer against the wall.
Yet, technology issues aside, even the idea of booking every tiny thing somewhat rankled. How exactly does someone with MS know when they will have the energy or inclination to do something? With my MS fatigue, things tend to happen on the spur of the moment, and it is virtually impossible to plan how I'll feel on the day.
I'm well-known amongst my friends as the person most likely to cancel/alter plans at the last minute. Luckily, they are understanding (or long-suffering, depending on your view). On the other hand, the pandemic regulations didn't have similar patience levels.
When I knew I wanted to go somewhere, it was full, or available slots were at random, unsuitable times. The days of popping into a museum, restaurant, or café on a whim were distant memories.
For a while, hopping on a train felt like something from a distant past - a sepia-tinted, quaint time when life was simpler, and the sun shone every day.
And if I struck it lucky and secured a booking? In those rare cases, every place was different, with vastly varying rules. Suddenly we had to deal with:
- Masks or no masks (some venues insisted, others would usher maskless people inside with an unbothered shrug)
- QR codes and their sulky apps
- Registration systems, online bookings, then unanswered phones when the first two didn’t work
- One-way systems that looked like the queue set-ups for theme park rides
- Screens between tables that were very easy to bang into
- Wi-Fi that wouldn't let you log on
- Hastily assembled menus online that were the opposite of user-friendly
- Table service
- Endless pressure to "hurry up and finish" so the next people could come in
Booking a meal entailed (and some places still do this!) agreeing to vacate the table within a strict time limit, something that made me unduly anxious. Then, even after getting in, you were expected to stand and queue for undefinable lengths of time, which I struggle with. More often than not, the thought of all of this was exhausting enough to keep me at home.
It was a minefield if you fancied a gentle stroll around town instead. Without a thought for people with disabilities, emergency social distancing measures meant:
- Blue badge parking spaces had disappeared and not been replaced
- Roads and pavements were reconfigured overnight
- An explosion of tables and chairs outside restaurants all over the pavements and access ways
- Signs everywhere, affixed to street lamps, painted on the pavements, on every shop and café door.
As someone who has foot drop and spends a lot of time staring at the ground just in case, a simple stroll became an assault course. I had resorted to using my walking stick far more than I used to pre-pandemic.
Since my diagnosis, I have had significant problems assimilating lots of information at once. I remember being like a rabbit in headlights at my local supermarket. The sheer amount of packaging, signs, and information overload was overwhelming. I couldn't move. I would find myself standing in the shampoo aisle, deliberating for so long that it was socially unacceptable.
I gave up grocery shopping years ago and had everything delivered. That’s something I was ahead of the game with, at least.
So, the pandemic’s measures exacerbated my confusion; the world was – and still is - full of signs, obstructions, and orders. The rules seemed to change as soon as I became accustomed to them.
In this case, I enjoyed a touch of schadenfreude as my non-MS friends reported similar frustrations. I quickly said, "See, see! That's what MS is like!"
Looking for positives
So was there a positive flipside to all this? Possibly.
1. The pandemic ushered in more flexible booking and cancellation policies (if you could navigate the websites). These were perfect for travellers with disabilities, as we've all been penalised for abrupt cancellations in the past.
2. Public transport was quieter, and some would say more enjoyable, giving us more space.
3. Tourist hotspots were uncannily quiet and easier to walk around last summer.
4. Social distancing allowed disabled people more space, despite the numerous obstacles in our way.
Nothing’s really changed for us
But that was last year. We were never promised permanent changes (though many of us were hopeful), and now those tiny benefits have slowly dissolved over time.
More philosophically, I think people without disabilities may have gained a deeper insight into living in a restricted world. Excessive planning and consideration, for example, must go into my every trip. I think the pandemic made many people see what that was like, even if only for a short time.
I’d hoped this epiphany would be here to stay. Now, though, I think I was being too idealistic.
NPS-IE-NP-00456 August 2022