On a Friday exactly two months ago, my working week was drawing to an end. It’d been a busy week, full of meetings and rehearsals for a forthcoming tour of our stage show ‘Not I’.
With hindsight there were a few things that might have hinted at the cataclysmic changes that were around the corner, but at the time I was caught up in work and hadn’t paid much attention to meetings being cancelled or re-located, and all the elbow-bumping instead of hand shaking. And the fact that Leftwing Idiot was having a series of long conversations with different team members and partners on that day, discussing the pandemic that was taking hold and whether our touring plans would be going ahead.
When I picked Bean up from nursery as I usually do on a Friday, we took the long route home, with her happily sitting on my lap, chatting. We went back to the castle to say hello to Leftwing Idiot and Monkey and to play for a while. Then Leftwing Idiot dropped her home just across the road, and we all relaxed into our weekends.
On Sunday my support worker Erik and I went for a swim with Bean and her dad, King Russell, at our nearby hydrotherapy pool. We had the pool to ourselves and had the most incredible, joyful swim. Fat Sister, who’s a doctor, wasn’t with us – she was on call that weekend, working at a major London hospital.
After swimming the four of us headed back to the castle, with Bean sitting on my lap while we watched the film Zog. That evening I packed my bag in preparation for the start of our tour the following day. Little did I know that our swim would be my last trip out for several months.
But my packed bag didn’t go anywhere at all because on Monday 16th March, after a whole-team discussion, we decided the risks posed by COVID-19 were too great – we cancelled our tour dates and started making plans to keep us all safe. While the official national lockdown wouldn’t start for another week, it was then that my lockdown began.
There’s been a lot of confusion about who’s most at risk, with the definitions changing as we learn more about the virus. My understanding is that people have been divided into roughly three risk groups:
1) Those who are considered ‘clinically extremely vulnerable’ to COVID-19 became known as the ‘shielding group’. They were people who were identified by hospitals and GPs and they received letters telling them to stay at home and not leave the house at all. There’s a central list of who these people are.
2) The next group are those who are at high risk because of their age or underlying health conditions. People in this group are encouraged to self-isolate at home but aren’t formally identified by the NHS or the Government.
3) The final group is everyone else. This group is able to go out within the current terms of the lockdown as long as they practice social distancing, which means keeping 2 metres away from anyone not part of their own household.
I considered myself to be in the second, ‘high risk’, group so I’ve been staying at home and significantly limiting the number of people I have contact with. This is especially important because I need close physical contact for many everyday tasks like getting out of bed or getting dressed.
A couple of days ago I got a letter from my local hospital identifying me as ‘clinically extremely vulnerable’ and telling me to ‘shield’ and stay at home until at least June 30th. This was the first shielding letter I’d received so it took me by surprise.
A little bit of online research revealed that some people were missed out of the original shielding group list and that this list has been expanded in recent weeks. Collating the data and making decisions must be an extremely complex process and it doesn’t surprise me that the list is evolving. For example, five different hospitals have been involved in my care over the last year with each focused on a different specialism.
In practice the shielding letter changes very little for me – I was self-isolating and being very careful anyway. It does give me some clarity though, which is helpful particularly when it comes to making longer-term decisions about the type of work I’m able to take on.
Receiving the letter affected me on an emotional level though, but I can’t describe exactly how it made me feel. Seeing my risk category spelt out like that made it more real. The end of June seems a long way off, and I know that this date may well be extended further.
Earlier today I had a moment of overwhelming sadness as I thought about how long it might be before I can be with many of my friends and family again – particularly Bean. But it was fleeting because I also thought about all of the things that are making lockdown life good:
The compassionate, sensitive, skilled support and companionship of Leftwing Idiot, Erik and Claire
My brilliant garden
Regular phone catch-ups with my friends and family
Fresh, delicious food
The flexibility, understanding and support I have at work
Lots of hot baths and my inflatable hot tub
The support of a wonderful community of disabled and non-disabled artists and activists
Thinking of my home as a spaceship
Cuddles from Monkey
As a team we have one mission at the moment, which is to get through this and stay out of hospital. The ‘shield’ letter gives us clarity and means that we can access extra support if we need it.
Within this pandemic, concepts of risk and vulnerability have been fluid, and they’re being discussed a lot more openly than at any other time I can remember. In many ways this is really positive. Being clinically vulnerable to COVID-19 is a reality that many people across the world are having to navigate. It’s in no way ‘a personal failing’, an indicator of ‘worth’, or just ‘bad-luck’ to be tolerated.
Sometimes when the ‘most vulnerable’ are being discussed on TV, in print or on social media, they’re presented as a homogeneous group but it includes people with a diverse range of experiences and circumstances. I haven’t heard anyone talking about:
Young people in the shielding group who in the medium and longer term need access to high quality education and play opportunities. Shielding parents who need to be supported to care for and parent their children and have a good quality of family life. And working people who need equal opportunities to progress at their careers.
The shielding group aren’t just vulnerable to getting sick as a result of COVID-19. We’re also extremely vulnerable to being systematically excluded. The latter is something we must all address.
It’s essential that we keep talking and listening to each other and particularly to those who experience multiple barriers or risk factors.
Shielded mustn’t make us invisible.