Family life during lockdown. Photo: Lucinda Bell
I would like to talk about carers as artists, or artists who are carers. I’m not sure which one comes first.
Every Thursday for ten weeks, millions “clapped for carers” in the NHS. I’ve joined many industry Zooms about how theatre must emerge from this crisis more inclusive, but mention of its own carers has felt conspicuously absent. I may have missed something, but it doesn’t seem like decision-makers are thinking about the 6.5 million people who are conduits to inclusion.
“This pandemic is exposing the creative opportunities that have, for years, been absent for many artists who understandably feel forgotten,” says Jenny Sealey, artistic director of Graeae.
These opportunities have long been lacking for disabled artists. But they’re also something that carers often miss out on. I want to ask why being a carer still doesn’t count as a protected characteristic with its own access needs, and how counterintuitive this is when you look at what a carer does, and how crucial they are, now more than ever.
So how do I define a carer? I don’t mean parents, though I am one of those too. I am talking about unpaid people who support someone who is older, disabled or seriously ill.
Here’s my situation. My husband and I have three children and our middle daughter, aged 9, has a severe learning disability caused by a genetic flaw, autism or brain injury, maybe all three. She is intelligent, loving, has a brilliant sense of humour and a killer “jelly dance” and has been humming the riff of Sheriff Fatman (Carter USM) since lockdown started. She’s also non-verbal, needs personal care, will soon need a two-to-one ratio to leave the house, and is controlled by her need for sensory feedback.
This means she moves constantly, is regularly unintentionally physically rough, very strong, shrieks, throws, is food-obsessed and runs into traffic. She is mostly happy but rages when, despite the Makaton, routines and photo cards that blizzard through our house, she can’t communicate.
We also live with the intractable worry of how to help her gain a version of independence, feeling guilty about that, guilty when we get frustrated with her, guilty that it’s hard to complete a conversation with her siblings. More than a night or two away from home is really difficult.
Social distancing has not felt different for our family. Friends’ houses, cafes and high streets were already not worth the grief. I’ve feared the moment when our lifestyle won’t be part of a collective “Blitz Spirit” anymore, which made me realise that I need to ask theatre for more freedom for people like me.
I’m not telling you these things to run my daughter down or sound like a martyr (as I’ll explain later, that’s definitely not what I want). There’s so many wonderful things about her that I haven’t told you – partly because our language doesn’t really have the vocabulary. I tell you these things to graphically illustrate that a carer’s life is a different track, even when you’re relatively privileged, as I am. You spend years in a never-ending game of swing ball, wondering which angle the ball will come at you next, time segmented into shifts, and this mentality changes the anatomy of your thoughts. If your loved one is supported elsewhere, the worry just changes shape.
“When I first heard of the impending crisis, my initial instinct was to jump into my car, drive 40 minutes up the motorway, bundle my Joey in, and bring him back to my flat,” says director, writer and teacher Stephen Unwin of his 23 year old son, who is in supported living. “But I can’t see him. I haven’t seen him in months. Just FaceTime and calls to his carers.”
How must it feel right now, as the loved one of an adult with dementia or learning disability, to know that deaths in care homes have doubled during Coronavirus? Caring cannot be conflated with parenthood. You can pick toddlers up. Toddlers grow.
I guess this assault on resilience is why the data is so stark. 71% of carers have poor physical or mental health according to the Mental Health Foundation. 55% report depression. 600 carers a day give up work to care (Carers UK), which is probably why 39% report economic deprivation. Yet Parents and Carers in Performing Arts (PiPA), who raise awareness of the challenges facing those with caring responsibilities in the Performing Arts, report carers are far less likely to self-declare than parents. 73% of carers have never been asked about their responsibilities.
A longitudinal study in Western Australia found that mothers of children with “intellectual disability” had more than twice the risk of early death than other mothers. They were 150% more likely to die of heart disease and 200% more likely to die of misadventure (from drugs, suicide etc.)
Given these metrics of deprivation, it seems quite extraordinary that carers don’t even register on diversity monitoring. Arts Council England have funded PiPA but “as yet being a carer does not fall within their current support brief”.
“The impact has been incalculable in many ways,” says Stephen Unwin. “I worked out that I’ve been in the nappy phase for 25 years. There is no question it puts a huge pressure on marriages. I’m 60. There is always this total fucking anxiety of “what happens when I die?” But it has also completely inspired me.”
That is my feeling too. That the experience has galvinised me and woken me up. My daughter’s gains hardly register on the Early Years Framework, but she has a transformational effect on all who know her.
“I’m crazy about her,” actor, director and writer Gerda Stevenson says about her 22 year old daughter Galina, who has Downs Syndrome. “She’s such a positive person. She’s made us all so much better. One can get burnt up with anger but I get on with my life. It’s your Achilles heel and your power.”
“The problem isn’t the child,” Stephen says. “The problem is the support in society.”
It is shortsighted to sideline carers. Theatre needs risk-taking disabled artists, but doesn’t it also need artists with risk-taking, creative parents? Don’t we model ourselves on the people who support us? Ngozi Ugochukwu, filmmaker and board member of Manchester International Festival, is a wheelchair-user who shared her lived experience.
“You can feel that you are a burden. There are certain things your parents don’t do because you can’t do them, in my case, stairs. But if you see the people you love happy, doing what they want to do in terms of career and goals, things shift. Your parents will worry and put barriers up to protect you. If you’re seeing them fulfilled and taking risks, you’re secretly hoping they’ll let you fulfil yourself too, and let you take risks”¦If only because they’re distracted.”
There are parent carers who enjoy untrammelled careers, like the genius Arthur Miller, who completely disowned his son with Down’s Syndrome. Are those the only kinds of carers we want authoring our arts?
The more I reflect on this, the more I realise that carer artists need help from the industry, but the industry needs their help more.
Contemporary theatre seeks to question contemporary society. Who knows the vagaries of the British education/ healthcare/social care system better than a carer? Who has more skin in the game?
David Mamet, paraphrasing Aristotle, says that“All drama is about lies. All drama is about something that’s hidden.” Carer artists know about hiding: their loved ones are hidden, in special schools, in residential care, in the taxis and buses that keep them forever out of sync.
The biggest lie we all tell ourselves is that we’ll live forever. Carers know in their bones the fragility of life. They consider, many times a day, what makes life worth living. “Learning disability is the big mystery,” Stephen Unwin observes. “It is the lightening rod into all those existential questions.”
Furthermore, all art is communication, and what is a carer, if not an intermediary? We are professional messengers and channellers. You exist to transmit your loved one’s needs, even if you lose yourself in the process.
“Since lockdown, I have had to develop even further an already fairly well-honed skill of sitting in the same space with her, working on my writing while she paints and listens to music on Alexa and chipping in with questions,” Gerda told me. “To be honest, sometimes it does my head in – especially if it’s the soundtrack to The Greatest Showman. I’ve worked out a way of splitting my brain into two parts so that I suspend the creative thought, to catch it again later.”
Humour me, but I’ve started to see several parallels between the functions of caring and the art form of drama itself.
Who wields dramatic irony better than a carer? A shopper catches my eye and tuts her disgust while my husband manages a meltdown. “She’s my daughter”, I say proudly, delivering a delicious reveal.
Shakespeare shows us character is action. In the first seconds of sharing space with learning disability, a stranger’s action/reaction will lay bare their character, for good or bad. My daughter is like Superman, revealing the colour of Lois Lane’s pants.
Both “caring” and theatre develop empathy (or should). I don’t think I imagined what it was like to cope with everyday prejudice before my daughter’s needs emerged. But once your daily interactions force you to tell strangers that your child can’t talk, divulge her medical history, then manage their pity, you begin to understand how tedious it would be to clarify that, yes, you were born in England, on a daily basis. “Being a carer radicalizes you,” says Stephen.
If only decision makers were not forever choosing between marginalized groups, and saw the ways in which ethnicity compounds disadvantage for people with learning disabilities: according to Joseph Rowntree Foundation, BAME people are under-represented in special needs-related professions.
Lastly, to stretch my metaphor to within an inch of its life, theatre is an embodied medium. Learning disabled people, who spend their lives managing sensory information, are the most embodied people going. As theatre fights for its life against the creep of screens, who better to advocate for this embodied art form than carers?
“For us, theatre is a lifeline,” says Janis. “Films never hold my son’s attention the way live drama does. He adores seeing people perform and we take him to as many shows as possible. Not all performers are entirely comfortable with intrusion. Theatre, therefore, could talk to us more as carers but often doesn’t.”
But despite the many synergies between caring and making theatre, I don’t always feel I fit in. It’s as if my life is too “rehearsed” for an industry where youth, insouciance, and experimentation signify value. It’s paradoxical, but by virtue of improvising through mini-crises all week (loo accidents, smashed mugs), you can become more clenched and less spontaneous in your art. Every director will tell you, the capacity to be present is all. But single-track attention is not an easy thing for carers. “I’m a completely split-minded multi-tasker,” Gerda says. Spontaneity is a foreign country to us.
“I used to think of novel plots and essay ideas but now my head is totally filled with someone else’s thoughts and inner monologues (which are mostly iterations and repetitions),” says Janis. “If I get a break to write, I don’t get time to play and explore, I have to shoot from the hip.”
I have wondered if there is something too naked and frenetic about a carer/artist? Gerda agrees.
“It’s so hard carving out the time to get work done, and yet I couldn’t cope if I wasn’t creative. So I’ve been working till 2am during lockdown. I probably come across as totally frenetic, from being constantly on tap.”
“It can feel like there is no room for middle aged people with middle aged responsibilities in the theatre, especially middle aged people with this very vulnerable thing,” Stephen observes. “If you are passionate or anxious, people see that and don’t know what to do with it. They can sense that intensity. The theatre has become so self-conscious and fashionable but that is wrong. Real art is raw and exposed.”
So will Covid-19 usher in a more compassionate world where the vulnerable have value? It is hard to say when identity politics is framed in terms of capability: each protected category is defended as being as capable, if not more capable than the peers who other them. In this context, how do you advocate for a person with massive skill deficits: autistic but, inconveniently, still rubbish at Maths? Forget “This Girl Can”. Maybe I should get my daughter a T-shirt saying “This Girl Can’t”, and let the world suck it up.
“What I find really shocking is that the so-called liberal left doesn’t know how to handle this, because their whole methodology is about argument, intellect and using your rational thought. So the very people you and I love,” Stephen says, “and the profound things we have learnt, are absolutely ignored by the arts culture in which we both stand.”
Viv Gordon, a theatre maker and childhood sexual abuse survivor activist, plans her projects to accommodate fluctuating resilience. I’m not, for a second, comparing our experiences, but her systems provide a roadmap for a sustained, prolific career.
“The whole process is shaped around my access needs. There are a lot of adaptations to our working day and a built-in artist assistant role to provide emotional support and sort out practicalities.”
She was surprised that something similar wasn’t available for carers. “During this pandemic, carers have been the lynchpin, and yet there is no understanding or appreciation of carers. They are utterly undervalued and othered. We are treated as saints,” says Gerda, “and not given permission to be three-dimensional people with our own goals and dreams”.
I have a cross-generational perspective on the carer’s life. My learning disabled aunt died aged ten in a very avoidable fire, due largely to lack of support for my grandparents. This left my mum with life-changing OCD, kept secret, rendering me and my siblings young carers in the same way she had been. Now I’m a parent carer, and wanting to be less quiet about it. It is the invisibility of unpaid carers (saving the state £132 billion a year) which warps what is otherwise a deeply enriching path in life.
Stephen observes, “I remember going to some fashionable event, some Shakespeare play being massacred. My phone rang and Joey was in hospital having had a seizure. There are these insane clashes of register, but I think if you are an artist they are beneficial. They clarify for me what matters.”
Like characters in the best stories, carers adapt to extraordinary changes, and face the reversal of all their expectations. Carers bring about miraculous change too. Gerda pretty much single-handedly taught her daughter to talk. After six years of trying, we daytime toilet trained my daughter last year. Carer-artists should not be treated as grey-faced pity figures, but radical pioneers with the skills to transform society – the very goal progressive theatre says it is interested in. As Cassie Raine of PiPA puts it, “Carers are forced to develop both patience and tenacity. If you put those two things together you have quite an incredible power.”
