Opinion: when lockdown is over, who will remember those of us still trapped?

Any chance increased accessibility could continue beyond the pandemic for those who won’t ever get ‘back to normal’?
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Image: Juliet Brando

Being confined to home most of the time is something the entire population of the UK has now experienced as a result of COVID-19. Most people were understandably happy to see the end of lockdown this summer – and are very reluctant to return to it despite the second wave of infections this autumn.

But for thousands of chronically ill and disabled people like me, being housebound or semi-housebound has been the norm for years – even decades – and it won’t go away once the pandemic ends.

Many of us are confined or semi-confined to our homes because of energy limiting chronic illness that makes leaving the house an impossible, rare or unpredictable event. And for us, as for everyone, lockdown has been frightening and sad in many ways, even with our long experience of coping with isolation.

The flip side to lockdown for disabled people

But there has been a bizarre flip side to all of it for disabled people too. While non-disabled people saw their worlds shrink during lockdown, many of us experienced the strange sense that the everyday world was actually opening up for us. Non-disabled people have missed out on social events, academic opportunities and jobs, and have understandably mourned these losses, but some chronically ill folk have been getting unprecedented access to those things.

Sick friends have told me about attending gigs for the first time since getting ill; ordering repeat prescriptions by email instead of having to find someone to go to their GP surgery every month; being able to return to yoga classes because they’re suddenly online; non-disabled friends becoming regularly available to Zoom chat for the first time. One friend who lost her aunt during lockdown was able to join the family prayers online – the first time she had been able to mourn with her family after a bereavement since becoming ill.

These activities span the full range from lighthearted to life-changing, showing just how widely we have been excluded from normal life prior to this.

It’s a relief to have the difficulties of housebound life acknowledged

Less concrete but no less important, we’ve also seen a mass acknowledgement of the devastating impact isolation and lack of access to the world can have on people’s mental health. And that in itself has been a huge relief for many of us, who have largely been left to cope alone. Over the years I’ve wept many times about important family and social events missed, jobs lost, friends drifting away. Just seeing that, according to the mainstream world, this reaction is normal and deserves sympathy has been life-changing for me.

But feelings are mixed about this sudden wave of access and understanding too. As members of Chronic Illness Inclusion reported towards the beginning of the first lockdown: “Suddenly the world has woken up to the fact that studying, working and socialising from home via the Internet is possible… Yet, pre-Covid-19, when we asked for these things, they were too difficult; or we were being awkward. Perhaps it was too hard to believe that our symptoms and impairments really do confine us to this extent. And perhaps it was easier to think we were just anti-social, or too lazy to make the effort to go out.”

And now, as lockdown is eased, I know I’m not alone in feeling a wave of panic at the likelihood that all these new opportunities will soon be taken away again. When my communications clients restart face-to-face meetings, will I once again be ‘joining’ via someone’s phone (if I’m lucky), left on a table, unable to hear, see or speak much? Will the friends I’ve bonded with over Zoom go back to expecting to see me at in-person gatherings and forget about me when I don’t turn up? I’m currently doing an MA that’s entirely online because of the pandemic and have been advised to consider a PhD afterwards – but will any be accessible to me?

Now everybody knows inclusion is possible

It’s important to note that the access to work, study, healthcare and leisure that many of us have suddenly been offered during this pandemic is something that we have been legally entitled to since 2010 anyway, under the Equality Act. Previously we were told these things were too difficult and so there was no obligation to give us them – now everybody knows they’re not. That in many cases, accessibility is not only possible, it’s easy.

The issue is made more pressing by the emergence of ‘Long Covid’, with many more people joining the ranks of the semi-housebound, having previously lived ordinary lives, working full time, like I and many of the chronically ill people I know once did. The difference is that while we were gaslighted and dismissed for our individual symptoms, there are too many people developing the same syndrome post-Covid to be dismissed – or, at least I fervently hope so.

As Chronic Illness Inclusion recounted back in April: “Some of us who’ve been housebound for years are getting kind notes through the door from longstanding neighbours offering help… Suddenly there is the sense that we belong to our communities, we are held in mind, we are all in it together… This spirit of solidarity can be a welcome balm from our usual state of exclusion and invisibility. It also brings home how little people thought of us before.”

Is there any chance that, having been ‘in it together’ for a time, people going back to their normal lives could remember those of us who are still in a form of lockdown? Can employers, medics and academics let us work and study from home, attend meetings and appointments via Zoom? Can events be livestreamed as standard? Friends, family and neighbours: can you check in on us? Ask us if we need anything? Find ways to include us in your gatherings? There’s no longer any excuse.

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