I think we can all agree there is a lot of uncertainty at the moment.
Like many people, I watched Boris Johnson announce his action plan for getting out of lockdown last week with a puzzled look on my face.
This confusion turned to frustration when the following day he shared a document, which stated that those who are in the ‘clinically extremely vulnerable cohort’ will have to shield themselves for ‘some time yet’.
How long is a piece of string, prime minister?
I may be labelled as one of the most ‘vulnerable’ members of society but I still have a career to think about, bills to pay and friends and family I desperately want to see.
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Once again, it feels as if disabled and ‘high-risk’ people have become an afterthought. I appreciate that keeping us indoors may be the safest thing to do – and that is fair enough – but there is very little in place to help boost our quality of life to help us through lockdown.
I don’t feel like the government cares about me or the lives of disabled people. It’s just another emotion to process during a period that has felt akin to a turbulent rollercoaster.
When lockdown was first announced I had plenty of people messaging me to say they were bored out of their minds, complaining about having their independence limited. I feel embarrassed now, but at the time I almost felt glad that they had a taste of what life is like for millions of disabled people.
I’ve found the last weekend particularly hard since lockdown has been eased. Flicking through my Instagram stories, seeing hordes of people in the parks and meeting up with one another – at a distance – in the sun, I felt jealous of their freedom to be out and about.
I also, like a lot of people, worried that this easing of restrictions will bring about a second wave, which not only would leave ‘high risk’ people in isolation for longer, but would be an absolute tragedy.
It took me a while, but I realised my frustration at people in particular is misguided as we’re all weathering the same storm. It’s just hard to know you’re not in the same boat.
One thing I have come to realise and almost made peace with is that my life will never be the same again because of the pandemic
Having reached out to my friends across the globe who are in the ‘vulnerable’ category, we have all come to the same conclusion: realistically, we’ll be shielding until there is a vaccine.
Honestly, the prospect of being in lockdown until a working vaccine is found, with no definitive timescale, scares me and I worry about being left behind.
I try not to dwell on the news that there is no guarantee of one either, as it just leads me to picture the bumpy, uncertain road ahead, filled with fear and risk.
One thing I have come to understand and almost made peace with is that my life will never be the same again because of the pandemic.
For now, I’m planning and giving my future any structure I can.
I’ve just ordered a handmade face mask online. It’s very me, with little purple and blue flowers.
I’m currently at my mum’s house but I know that I can’t stay here forever and will have to return to London.
When I can go out, I will have some disinfectant wipes by my front door so I can wipe down my wheelchair’s wheels before entering the flat.
My personal assistant will come round in PPE and we’ll maintain social distancing where possible.
I’ll have a mask on whenever I get taxis and public transport.
No more shaking hands, no more cute little embraces that I’m known to do. Instead, the people I adore will be greeted with a warm smile (although whether they can see it behind my mask might be an issue).
All meetings will be by Zoom or other web platforms. Ironically, I’ve asked people to use these in the past to make our meetings more accessible only to have the idea scoffed at. It’s a silver lining I suppose.
I’m trying not to dwell too much on the challenges like the availability of food deliveries, whether my road will be pedestrianised (as the Mayor is proposing many in London become) thus making it harder for me to avoid people, and the general vagueness surrounding timelines.
What I would like to see happen is the government recognise that disability rights are civil rights and aren’t optional.
I’d like better support to care givers and to be at the forefront of any planning that directly impacts our independence and rights.
Mostly, I just want ‘vulnerable’ people’s sacrifice to be acknowledged and for us to be informed, advised and ultimately not forgotten about.
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