image shows an installation of vintage cups, saucers cascading on ribbons in a window with words: Self-care not to be confused with self-pampering. Creativity Fellowship Common experience. Aim of positive change.

In October 2021 as we were in the midst of our tour of We Will Be Happy Here a multisensory, immersive co-created installation made for and with learning disabled people, I was asked to speak at the Health Tree gathering convened by St Margaret's House. The event was to promote participation in our part of the wider social prescribing project. On the day, there were brilliant and varied presentations. I was noticing symptoms of shortness of breath. Long Covid was very much with me. In the moment, what I said varied a bit from this, but you'll get the gist. 

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Before we start – just take a moment to breathe in deep in to your stomach. Hold it and breathe out. Once more – think as you breathe in of somewhere within you that needs that breath and send it there -  and as you breathe out, send out the toxins and tensions back into the world. We’ll share them together.

Hallo, my name is Rebecca, What a powerful session, hearing about all the work so far.

I’m the Artistic Director of Spare Tyre.

My visual introduction today is I’m a woman, 54 years old, grey hair with blue streaks in a sort of quiff. I’m white with freckles and I’m wearing silver earrings, a silver swirly necklace, some make-up because it’s an outing and a swirly greeny/blue vintage top. I have my sunflower lanyard because I have chronic fatigue associated with Long Covid Syndrome. (Which is why I’m also a bit wheezy. )

Spare Tyre is one of the longest-standing participatory arts companies, founded in the punk era. We were then and still are proudly inclusive, curious, feminist and participant-centred. Since I joined in 2019 we are planet-loving and intersectional.

We make multi-disciplinary, socially-engaged projects, productions and sensory installations in co-creation with our participants. Our work may be campaigning or small p political in that the politics resides in who we choose to work with, where and why. We’re currently mostly to be found learning from learning disabled people, people living with dementias and their carers, and working in unmarked locations and online with women who have experience of domestic violence and abuse. Our interactive installation We Will He Be Happy Here made with our friends at BPCA is on tour this week to Kingston Mencap and next week online to learning disabled people across the country. We’ve trained new artists and practitioners in sensory working online – busting the walls of Zoom to make people feel as if they are together.

And now- thanks to the Health Tree project –we start a new lived-experience practice with people living with Long Covid, of whom I am one.

I’d just like you now to  take a moment to recall a day or a week before March 2020. What did you spend most of your time doing? Perhaps 3 things that pulled your energy. Now think about what you were doing during the first Lockdown, And what you do now? How much has that changed for you? Maybe it’s not much at all, maybe the themes are the same, but it’s just weighted differently. Maybe everything is new. Everything is changed. 

We’re all in different places. It’s not always easy to notice.

My Covid experience has changed almost everything. And because like most people I universalise my experience, I tend to assume that everyone’s lives have changed -  but they haven’t. 

Lots of people are returning to old systems. Willingly, unwillingly, knowingly, unknowlingy. 

And it was that realisation that part informed the Covid Café idea.

I joined Spare Tyre just as my life as a carer was approaching its end and I contracted Covid probably/possibly in the same week that my father died in March 2020. Initially, I thought I’d work from my bed until I was better, and I assumed it would go away. 

It didn’t. And when I attempted to get back into the world of creative work, of charity and civic volunteering,  it all got a whole lot worse and the boom and bust cycle of getting better and relapsing has continued.

I’m telling you this because there are thousands of people living with Long Covid and other conditions and it’s not easy to get help or make changes for yourself.

So when Covid didn’t leave me, about a year ago I started to wonder:

a)  What I was going to do about how I work now? My self-image is dynamic, loads of energy. If I project that today, I’ll be in bed tomorrow and I’ve two shows to be at, and a team of 14 freelances I’m responsible for.  So, today I’m trying out a gentler style  … (I was sitting rather than standing, using notes rather than relying on memory)

b)  I also wondered how freelances going through this change were sustaining themselves, how they find the courage to get help,

c)   AND How is this impacting people in the wider community?

My world is full of people who are supposedly open, empathetic, supportive and used to doing things differently and yet, we’re finding it tough… – So what happens if you’re in a situation where you don’t have flexible work conditions, or you don’t have the luxury of feeling safe to ask for them? What happens if you don’t get a day off from your caring responsibilities? What’s happening to your sense of self and your mental and physical health whilst you try to maintain the appearance of normality?

So the idea of a project came to mind, based on the principle of a community of lived experience underpinned by a creative and problem-solving practice called Action Learning that helps people

  • identify questions,
  • reflect on what they want to change
  • and start to identify for themselves the small and large steps they can make towards that change.

And I was delighted that when I asked Stuart (Cox from St Margaret's House) if he’d help me host it and find people, it was just at the point that Thriving Communities was being launched, so the fit was very good.

None of us can go back to what we were after a life-changing event. We might resume, and project the “old me” externally and yet we will still be different. How we acknowledge that differs from denial, to resignation or embracing it and opening a new chapter.

I’m learning already -  but It’s not just about pacing or asking for a chair–as hard as that can be – sometimes it’s about changing your style, your way of being in the world, your entire sense of self. All of us in this space are having to rewire our brains, learn new processes, let go of things, which can be very hard. It can be very positive too. However you arrive there and whatever the positives, there’s always a grieving period in a parting.

So The Covid Café experience is a supportive environment to put participants at the centre of their own change and help them find some control within their new realities.  

It can help participants determine the pace of change with the support of other people living with similar experiences.

No-one will be handing out “you should” advice or telling people what to do.

We build the practice based on empathy and shared experience not cleverness or unqualified medical advice.

Very important.

There will be creative activity freeing up the mind to help us relax and identify what it is we need to change, in order to thrive.

You can come along and listen and be nourished by others.

You can share your question, or visualise the change you want to make and see how it fits or plays out– perhaps someone else wants to try this too…

You won’t be held to account by anyone.

Your decisions are your own.

You take responsibility for your actions or your choice not to move on.

This practice is for people who want to make change and know that they need to, even if they’re not sure where or how to start.

The practice is above all kind and non-judgemental.

You’ll be offered tips about breathing and stretching and things to do at home, to help you build up your own store of tools for making change.

You can come once or to all the sessions.

You can attend online or in a real café –– locations and timings will vary because we know that social prescribing is great but not everyone can take time out in the working/caring day to attend to their own needs.

We are hoping to attract participants from across Tower Hamlets communities and our aims are:

  • To connect people and share experience
  • Help people become their own advocates
  • Make long term and undiagnosed conditions a bit more visible in local communities,  workplaces and families

We don’t know how long this will be part of our lives or what comes next, And I know from my experience that uncertainty has been one of the constants in the chocolate box assortment of Long Covid symptoms. 

The Covid Café project offers a small amount of security in that it is based on each individual’s power to make change for themselves. This might be small but it can be mighty in significance.

I’ve been using my creative Action Learning practice for over 10 years and it’s seen me through involuntary childlessness and professional redundancy. It can definitely help us do this.

We’re starting in November and the project will continue until March 2021. Times and dates will be published soon.