Not My Freedom

In 2014 the BBC asked me what my image of freedom was – I chose my wheelchair because it gives me independent mobility and a lot of joy.

This is a photograph of Jess Thom, a white woman with curly brown. hair. She is wearing a black jumper with large red cherries on it, and a mask that has the same cherry pattern.

Right now though, I know much more about what freedom doesn’t look like: the lifting of all the restrictions put in place to help kerb the spread of COVID-19.

Back in March 2020 at the start of the pandemic, Touretteshero, a disabled-led company with clinically vulnerable staff, was in a difficult position. Without clear leadership from the government on whether live events should happen or not, we had to take decisions and cancel work with no support.

In the last few weeks, we seem to have gone right back to the early days of COVID-19.

The government’s decision to lift mask wearing and social distancing requirements from today while infections are rising exponentially means that the few small freedoms I’d begun to enjoy again – trips to the park, swimming at the hydrotherapy pool and social time with my niece will all have to stop again because the risks will be much higher than they were yesterday.

A digital drawing of Touretteshero and her niece Bean sitting in a blue swing in a playground. They are leaning back and both havie their eyes shut. Touretteshero is wearing a black tracksuit with a red cherry print and black trainers. Bean has blonde curly hair and is wearing pink trousers, a rainbow patterned top and a blue coat.

It also means that as a company we’re once again having to make tough decisions and weigh up risks in the absence of any sensible guidance from the government. The labour of this work is being passed on to organisations and individuals and it’s exhausting!

I’m double vaccinated, but like lots of Clinically Extremely Vulnerable people it’s hard to know how my body has responded and what level of protection I actually have. The government advice is to avoid ‘unvaccinated people’, but how on earth am I meant to know who’s vaccinated and who isn’t. It’s unhelpful and unworkable.

As someone who needs help with many daily tasks, from having a wee to making a meal, I’m reliant on physical contact with my support workers. As careful as they’re being, they still have to travel to me, their children are still going to school and their partners are still working – the idea that if you’re at risk you can just ‘choose’ not to be exposed is ridiculous.

There are glimmers of hope and acknowledgement – Arts Council England’s statement last week urging the arts sector to consider disabled and clinically vulnerable people in their reopening strategies was appreciated, and we continue to work partners and funders who understand that when we talk about our survival we don’t simply mean economic ¬– we’re talking about getting as many of our community through this pandemic alive as possible.

We’ve suffered some devastating loses in the last 18 months – in particular the death of our friend and colleague David in January’s second wave.

A photograph of David Ogwe sitting at a table with two young people at a Touretteshero event at the Tate. The table is covered with a green and white striped tablecloth and has biscuits, different coloured icing tubes and other cake decorating items. David is smiling and facing a child to his right who has just taken a bite out of his biscuit that he has decorated. The other child to David’s right is decorating a rich tea biscuit with bright green icing.

David’s loss travels with us every day – the painful absence of his energy and humour will be felt for many years to come. The idea that more families will be facing similar devastation in the weeks to come is overwhelming and enraging.

I’ve heard people say, ‘we can’t stay in lockdown forever’, when in reality we haven’t been in lockdown for months. Mask wearing and social distancing are small preventative measures that don’t equate to a lack of freedom, abandoning them now is likely to prolong the pandemic in this country. We all have things we miss and are desperate to do again, but we’ve seen before from ‘Eat Out To Help Out’ of ‘Christmas Bubbles’ that rushing this process has very real consequences in people’s lives – more deaths, new variants and thousands dealing with COVID related impairments.

Ultimately today is no one’s ‘Freedom Day’, the increase in infections is already putting pressure on NHS services, with operations being cancelled again in some areas. Those working in front line jobs, from hospitality to healthcare, transport to teaching, will all face higher risks at work. Unchecked infections mean the likelihood of another even more dangerous variant increases.

COVID-19 has revealed how interconnected we all are: locally, nationally and globally. Our health and wellbeing rely on that of our neighbours, and protective measures only succeed when we act collectively. Yet once again the government is leading us down a dangerously individualistic path which puts those of us already at the margins at greatest risk.

For those wishing to be an ally to disabled and clinically vulnerable people, here are a few things that would make a difference to me:

For individuals:

• Keep wearing a mask in enclosed spaces if you can
• Be mindful about the requirements of your family members, friends or colleagues
• Isolate if you’re told to do so
• Donate to disabled led organisations that are supporting our communities at this time

For organisations and business

• Maintain social distancing and mask wearing wherever possible
• Consider the requirements of clinically vulnerable people and take action to provide for these
• Be mindful of how you’re communicating your plans – I’ve had some demoralising emails from companies delightedly announcing that everything’s back to normal – when for me this means they’re now unsafe
• Consult with disabled led organisations and follow these tips for an inclusive recovery
• Be ready to make reasonable adjustments for those who need them
• Don’t make assumptions about risk and exclude disabled people because this seems easier than addressing our requirements

Remember, if your freedom is at the expense of others – it’s not freedom!

To everyone in the same position as me, I send you love and solidarity at this tricky time.

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