‘When COVID Said My Name’

When COVID Said My Name

Penny Pepper shares her thoughts on finally catching the virus as a Clinically Extremely Vulnerable disabled person

COVID. The monster under the bed, in the cupboard, from far away ‘foreign’ lands finally got me.

Now finally testing negative, what else can I do but reflect on the patently obvious as much as the obscure? I’m one of those CEVs – the Clinically Extremely Vulnerable group. Back in the day, in that early COVID world of 2020, the label weighed heavy with uselessness veering into cheerless alarm, depending on the latest pronouncement by baffled Government officials. 

In early March 2020, I was in London, tootling along Euston Road for my regular biologics and work commitments. My journals note the rain was drizzly, but a poet can’t help but see a smudgy beauty in the reflected lights on the busy road. London life as it should be. We laughed indulgently at sightseers from abroad wearing masks. I’d lived in London for almost 30 years. I was made of tougher stuff. Masks were silly, I decided.

How fast it all went. Ten days later and the restrictions began. King clown Johnson was almost gleeful in his pseudo-Churchill act. Those early days remind me of the ‘80s AIDS scaremongering – the doomy voice of John Hurt and the thumping tombstone crashing to the ground. Then there were the late afternoon live COVID briefings. Government ministers droning on and on with weary-looking scientists, a hundred diagrams and incomprehensible predictions.

As time passed, the horror of families denied visits to relatives to care homes came to light. The constant headlines of deaths, paralleled with ministers – with Johnson – somehow suggesting we could tell it to go away if we were all jolly good and British and ‘put the brake pedal on’; the Keep Calm and Carry On motto reduced further to a meaningless platitude as interpretations of it fell from the mouths of official pundits and the Tory press.

The fear among disabled people was palpable, heightened by a lack of reliable and relevant information. 

Local authorities struggled and I remember making a phone call to social services to find out in particular if there were contingencies for personal assistants and care staff becoming ill or being blocked from travelling into the UK. No one knew anything and the poor woman on the other end of the phone almost cried. I have no love lost with social services but I felt for her. Even PPE supplies were slow and a complete failure for those in self-managed care support at home – still is.

The sickening spectre of internet-driven disinformation came quickly, in obscene waves of hate-filled rhetoric. ‘Herd immunity’ became a thing and the Me culture of my rights, me first. I started a YouTube channel called ‘Seen and Unherded’, which gave me something to do and at least a sense of fighting back against the vitriol. Yet again the ugly, selfish slogans were driven by a familiar misinterpretation of the tired trope of survival of the fittest.

Testing negative at last, it’s sunk in how worried my friends were to the extent that I might die. It’s a sobering realisation. Disabled people have been through three years in a particularly terrifying COVID Land – the stats show the shame and underpin our fears. We died a lot. According to data by the Office for National Statistics, some 30,296 of the 50,888 COVID deaths between January and November 2020 were of people with a disability.

My resilience has been fired by knowing I have such supportive friends and live in a community that rose to the challenge in a typically alternative Hastings way. We may have Tory MP Sally-Ann Hart-less (voted in by the usual suspects), but we’re a town peopled with old punks and genuine anarchists. When we practise mutual aid, we mean it.

During the worst of the lockdowns, Hastings citizens invented Frock Up Friday, which became a highlight of the week to share your best extravagant outfits via a Facebook group. There’s now a book and a festival – it went viral and global. I know many disabled people who staffed phone lines to be a friendly ear and many peer support groups were set up across the internet. 

It was poignant to see how much non-disabled people struggled with isolation when it is something countless disabled people experience on a daily basis. It can be the essence of someone’s life – not merely because they slip through the net, but because they don’t qualify to be caught in it.

Lockdown raised a lot of questions about social care and independent living that have ramifications to this day and most likely into the future. There is still very little sign of autonomy for disabled people and the situation is likely to worsen because of the dreaded V word. ‘Vulnerable’ became a touchstone for all politicians to mouth off as a calculated means of keeping us in our place. 

But the only time I feel vulnerable is when systems and policies let me down and/or create more barriers. Even down to a simple thing like accessing a GP. Knowing the GP is there and knowing that the GP will know you. It’s all gone. And I will rave and spit the proverbial feathers if I don’t hear the blame falling squarely in the greedy lap of the Government and its sly policies to dismantle our NHS.

Somehow, I avoided the much-predicted hospital admission. COVID took five days for flu-like symptoms to appear. At first, a raging fever and fatigue as I’ve never known – even as a chronic illness expert – then the dry cough kicked in, followed by diarrhoea and unexpected symptoms such as gum inflammation which I still have.

But I am the eternal pragmatist. And, after a lifetime of impairment, I’m helped by the resilience in my genes passed from my cheerful and hardy mum. I have so much more to write and definitely many stories to tell. And I can include the experience of living through COVID now whenever I so choose. Heard and always unherded.