In 2020 I had the idea about a Covid Café, a space for people living with Long Covid and other long-term conditions to connect through Zoom and their creativity. A space to find ways to imagine how we might all live in the skin and bodies we are in now. It's taken a long time for the idea to become a reality. The delay was partly due to my own fatigue and cognition issues and partly due to my insistence that the sessions should be hosted by lived-experience artists. That those artists, all freelancers, should be paid. It's taken a while to get the funding in place. But now we have. And we're on a roll. And I'm grateful. We started last year with support from ACE Thriving Communities and now we’re two thirds through the second series funded by Thrive London and London Sport. It's not too late to sign up and join us

Living with a long term condition, is as I am discovering for myself,  a costly business in social, cultural and financial terms. So as an intersectional feminist in a female/artist-led company, it was non-negotiable that our Covid Cafés are not volunteer-powered. Too many freelances were lost to theatre during the Lockdown era (and now due to the Cost of Living Crisis) and they are a precious resource. Spare Tyre and I recognise –and pay for -  the skill it takes to host and shape the community of practice that is evolving as our Covid Café. It is not arrived at by chance. The gossamer-light touch of the structure is supported by training, years of experience in arts, lived experience of long-term conditions, reflection sessions within the team, planning in response to what’s happening in the cafés. All designed to be invisible to the participants who can drop in and out at will, or sign up to all of the sessions.

What does this have to do with shoes, social prescribing and International Women’s Day?

International Women's Day–#EmbraceEquality

It wasn't by design, but certainly no surprise to me that the Covid Café team is female and non or post-binary. This is because female and non-binary people are over-represented as facilitators in participatory arts, the section of arts and culture that over the years has been less well-regarded and less respected and yes, you guessed it, less well paid than other parts of the arts and culture. And never doubt, the femaleness of the space and the lower status are connected–(not I am proud to say at Spare Tyre).

Let's hope that the Arts Council England's 10 year strategy LET'S CREATE will see the end of that inequality.

I was also not surprised–Not at all surprised  - that the turnout to the Covid Café has been almost, but not entirely, without male attendants. Societal bias makes what we are offering too touchy-feely, perhaps, and I do have an aspiration to team up overtime with the Men’s Sheds that will have us. Men aren't finding their way to us in the numbers that women do. But not just because of societal bias. The prejudice against men showing their fragility is not the only reason. (By the way, men are welcome and we do want anyone to feel that they can join us).

The real reason that the space is dominated by women and non-binary people is because women are many more times likely to be diagnosed or not diagnosed or incorrectly diagnosed with a long term condition. ”Just one of those things” or “medically unexplained symptoms”. Women are more likely to be considered to be catastrophising about symptoms and to be prescribed sedatives or pain relief, rather than doctors getting to the bottom of what's actually the problem. Women with these conditions find themselves struggling to be believed by health professionals, colleagues, friends, partners, children and expected to carry on. If they can't carry on, they find themselves, as we're beginning to see with Long Covid, jobless, isolated and pushed into insecure housing situations. Too many apparently invisible and unexplained/incurable conditions are discredited by health professionals and the health establishment. 

There's not been enough research into them, and you cannot count what you don't measure, as Caroline Criado Perez so brilliantly illuminates in her book, INVISIBLE WOMEN. So, women are left to find the solutions for themselves.

In the case of Long Covid being female is considered one of the risk factors. This is due to social and medical reasons. 

In 1977, Spare Tyre was founded on a production inspired by the book FAT IS A FEMINIST ISSUE by Susie Orbach. And I believe that Long COVID and long-term conditions are also a feminist issue. So yes, again, I'm not surprised that it's mostly females who are finding their way to us, and finding in our peer-led, listening, non-judgemental, self-accountable approach, a space that isn't being offered to them anywhere else.

So Happy International Women’s Day to all the women and non-binary people who are living with long term health challenges. We see you.

And Happy National Social Prescribing day – not a phrase I thought would ever trip easily off my theatre-maker tongue.

A lot of people find us through word of mouth and we're just starting to get our first referrals through London’s social prescribers, a network designed to help people connect with services they need to promote their health and wellbeing, in partnership with primary care services. Our relationship with social prescribing is just beginning, and it's fragile because our funding is time-limited. People need to be signposted to activities that are current and ongoing. So we persevere whilst we square that circle.

In the week of International Women's Day and National Social Prescribing Day, this is also a call out to funders to support the work beyond April, so that we can be a reliable landing post for those social prescribers, and more importantly, for the people who need to find us on a year-round basis.

No-one is pretending that the Spare Tyre Covid Café can provide a cure for Long Covid or other conditions. We focus on what we can do as creatives: we focus on making our lives bearable and enjoyable now, and on imagining what might work for us in the near future (tomorrow, next week, next month?) We do this by working on breath, visualisations and reimagining our reality in a supportive atmosphere–an imaginary online cafe where everyone "gets it". We help people feel visible, validated, valuable in the place that they're in now. (If you haven't heard about gaslighting of women in health, and especially women with long COVID or long term conditions, to borrow the phrase, you haven't been paying attention).

This isn't wet. This isn't fluffy. This is hard work. Facing up to yourself always is. But we do it with creativity, generosity, and kindness. Our sessions relieve the burden of guilt and shame of being sick, which as experience-led practitioners, we know only too well.  This, as the participants have told us, is the effect of the Spare Tyre Covid Café. 

We're not trying to pretend that everything is OK. We talk about grief, loss, the difficult stuff. The loss of status, cash, the difficulties with partners and friends and what to do about work. We're not trying to help people back to their old normal, we're focusing on what is possible. Making a paradigm shift that is entirely up to the person themselves to direct. And for some, we are just offering a space to hang out. A space to explore creativity and fellowship to make everyone feel a bit less lonely. And we use art to help us make sense of this experience in those glorious, mysterious and vitally important ways that only art can do.

And what about the shoes? 

In one of the early sessions, a participant told a story of buying a pair of sandals in a market. The trader didn't have her size. She was ready to move on. The trader undeterred offered her shoes in a different size for a good price. She turned to the man, and she said “the size of my shoes is not negotiable”. Lots of people want us to treat our conditions as the shoe-seller was inviting the woman to regard her feet. We’re expected to fit in. To take what’s on offer not what we need. We're not expected to shape our place in the world on our terms. In ways that are comfortable for us. In the Covid Café –a growing group of virtual locations connected by an idea -  we are encouraging individuals to imagine what they want and to take the first steps to achieving it.  

Because our voices and our ideas are valuable, and although most of our shoes may be getting dusty in the cupboard,  we are still finding ways to take up space in the world.

The current Covid Café season runs until the 20th of April, funded by Thrive London and London Sport and we are actively looking for new funders support the work ongoing. If that's you, please e-mail covidcafe@sparetyre.org

The Covid Cafés are free to participate in at the moment and they always will be for the people who need them to be. But we may have to introduce a pay what you can model. And if you could help pay it forward, that would be a fantastic start.  

The price of your favourite coffee and a tasty snack would be a great tip, or you could support an entire café session.