I’m not shielding, but I won’t be going back to ‘normal’ yet | disability and COVID-19

On the day lockdown began, the country started waiting for it to be over – counting down but with no date to look forward to. Although this is going to be a much more gradual process than many may have anticipated, July 4th will represent a major shift and arguably the situation will no longer be able to be classed as a “lockdown”. British people will flood into pubs, restaurants and hairdressers, amongst other places.

That’s what the government have set out, and as long as they have listened to the scientists, that’s fine with me – I’m trying to not be completely cynical about the moves because it isn’t my place. But as a disabled person who isn’t technically on the clinically vulnerable list, this causes a more complex issue than you might think.

My conditions mean that my immune system is quite weak – when I had the inaugural freshers flu back in October, I was extremely ill in comparison to my peers and it took me several weeks to shake off. I don’t doubt that if I got COVID-19, it would be the same situation, or likely worse. It’s been a scary prospect since the pandemic began, because as the numbers rise, there’s a constant subconscious recognition that it could be you next.

I have to stress that because I don’t have to officially shield, I am in a privileged position over many other disabled people as I have been allowed to make my own decisions, but I think it’s interesting to look at the processes and issues behind such decision making.

I was probably less scared at the start of lockdown that I am now, which I’m sure sounds completely irrational. I would go on my short daily walks and go into a few of the local shops. Now, a couple of months on, I feel unable to even do that. But this comes down to my fear and lack of trust in the general public, and as rules relax, I am seeing the lack of care that people truly have. Seeing photos of people crushed together, whether that be on the beaches or in town, without proper distancing, is terrifying.

Of course, I could just wear a mask and do my best to distance. But being autistic, I find things covering my face extremely difficult. The government have said that having sensory issues exempts us from the law on this, but at that point you are asking me to make a decision between my conditions, between my health and my ability to cope as I navigate the world. I have to decide whether I try to cope with a mask that makes me feel like I can’t breathe, like I am overheating, distracting me from anything else, or whether I risk getting the virus instead.

For me, at the present moment, that decision does not seem worth it. I have no definitive need to go to these places that are opening at the moment, and I can’t say many of these places are ones I’ve missed in such amounts that I feel the need to rush to them. On reflection, I think part of that comes with the periods of isolation I’ve had throughout my teenage years – I already know what it’s like to not be able to go anywhere, so it hasn’t been as much of a challenge.

Watching many people go back to normal living outside of the new guidance, not just going to these newly opened places but having parties in their back gardens with more than the allowed amount of people, could not be more frustrating. Those shielding or taking distancing extremely seriously due to their health just can’t do this and it feels like it has become a pointless exercise. But if we were to get the virus and pass away, we would just be another person “with existing conditions”, absolving everyone of guilt. I recently spoke a bit more about this ableist language in an article in Foreign Policy magazine.

It’s down to the individual as to whether they stick to guidance or not. But part of the issue is not truly about the guidance – it tells you to go shopping, to go out and spend your money and go back to normal. The issue comes when thousands of people are doing this at once. We can’t prevent that, we can’t change that and it’s very much becoming an every man for themselves situation. But disabled people with no carers will have no choice but to navigate the outside world eventually, and it’s not a simple issue to make such a choice. Little provision has been made for this issue, and it’s unlikely that it will be looked at.

This isn’t me saying that people shouldn’t go out, or that they shouldn’t enjoy being able to go back to some sense of normality. But, it has to be recognised that for so many people, there is anxiety about going back to normal, and for those who are shielding properly this is even more important to recognise than it is for those having an experience like mine. Disabled people and those who have been constantly labelled as “clinically vulnerable” throughout the last few months need to have their experiences known and validated during the pandemic, and after it.

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