Carer-artists can be pioneers if theatre helps us step forward

My point is, caring cannot be conflated with parenthood. Toddlers grow in independence. Toddlers access childcare. Being a carer puts you in the eye of the storm, often for decades, not years, as the data makes abundantly clear.

According to the Mental Health Foundation, 71% of carers have poor physical or mental health and 55% report depression. Carers UK has found that every day, more than 600 UK carers give up work to care, which is probably why 39% report economic deprivation. There are many factors involved, with race, gender, income and health compounding the effects of caring responsibilities.

This pandemic has turned up the heat, as 55% of carers are feeling overwhelmed and scared they will burn out, Carers UK found. The number of unpaid carers has swollen by 4.5 million, so there could be as many as 13.6 million of us out there (YouGov).

Given these statistics, it seems extraordinary that carers do not show up in diversity monitoring and cannot apply for access costs from Arts Council England. To work outside the hours of 10am and 2.30pm weekdays – rehearsals run from 9am to 6pm before travel – I need to pay a carer £16 an hour, assuming I can find one. Paid carers have outrageously low incomes, but agency costs and their sporadic hours mean they remain expensive for families. My daughter receives direct payments, but most of these go on her specialist activities and clubs, which cost £125 a day.

Parents in Performing Arts found that carers are less likely to self-declare than parents, so perhaps it is no surprise I have struggled to find carer role models in the theatre. I only recently connected with director Stephen Unwin, whose 23-year-old, Joey, has a learning disability, and writer Gerda Stevenson, whose 22-year-old daughter Galina has Down’s syndrome.

But it is a statistical inevitability that in the history of theatre, carers have been present, if in disguise. Arthur Miller enjoyed an unfettered career, but disowned his son with Down’s syndrome. Are those the only kinds of carers we want authoring our arts?

The following things would help carer-artists:

• We need to be able to apply for access costs to cover the inflated costs of being able to work.
• We’d like acknowledgment that our lives are defined by many of the same barriers experienced by the disabled people we live alongside. We’d like to show up in data, monitoring and targeted call-outs.
• There needs to be greater awareness of our fluctuating resilience. If we were a recognised part of the theatre
community, we could own our tiredness, rather than fearing that we appear unprofessional or uptight. It’s important to know that home is not a place carers go to rest.
• Carers’ lives are subject to jeopardy. We need a spacious production process to accommodate this.
• Lastly, flexible working hours would help.

It is in the industry’s interests to let carer-artists in. The pressures we’re under make us passionate, prolific, politically radical, far-sighted and diligent. “I couldn’t cope if I wasn’t creative,” Gerda emailed me at 2am. Carers have a unique vantage point on the vagaries of British society’s safety nets. We know in our bones the jeopardy of life – the subject of all good drama. Stephen talked to me about the insane clashes of register between the pretentious aspects of theatre and the fundamentals of caring. We agreed these revelations are often what inspire us to create.

Caring cannot be conflated with parenthood. Being a carer puts you in the eye of the storm, often for decades, not years

Our industry is adapting to a cataclysmic transition, and that’s what carers do: we deal with change and we create it. We teach teenagers to speak their first words and assist people through death. Carers are told they are “amazing”, which is kind, but weird, because we know we’re just as selfish and clueless as the next person. As a carer you’re trying to do your best for someone you’re very invested in. Othering us as saints denies us the right to be three-dimensional people with our own talents, goals and dreams.

Lockdown has been stressful, but in many ways unremarkable. Cafes and high streets were already off limits for our family, and will continue to be. But I really do want this moment to drive change. I want the long overdue push for diversity to be nuanced and far-reaching, rather than monolithic or tokenistic, so that it takes in artists’ economic situations, caring responsibilities and life experiences.

As the art form of theatre reinvents itself, carers could be helped to step forward, not as grey-faced pity figures, but as the game-changing pioneers we so often are. As Cassie Raine of PIPA says: “Carers are forced to develop both patience and tenacity. If you put those two things together, you have quite an incredible power.”

Details: documentaltheatre.co.uk