Until Tomorrow | play captures real “joy, humour, and heartbreak” of being a carer

Until Tomorrow is a powerful new play that tackles conversations about care. The story follows three parent carers through a moment in their life – a moment that is both catastrophic, and every day.

Informed by Dr Siobhan O’Dwyer’s research, and conversations with carers, Until Tomorrow was written by Brenda Callis and dramatises the physical and emotional toll of caring for a disabled child.

In a system which punishes parents for wanting the best for their child, every day is a battle to be seen, heard and respected. Over time the strain becomes too much, with research showing that some carers think of ending their lives. “We need to talk about care, before it’s too late,” says the info around the production.

We caught up with Dr Siobhan O’Dwyer and Brenda Callis to ask about how the performance came together, the role of theatre in telling real people’s stories and how to move the conversation on.

How important is theatre and the arts in sharing these stories and what is the role of the artist in society?

Dr Siobhan O’Dwyer: Theatre is vital. It’s an incredibly powerful way to share emerging findings from complex and sensitive research with the community. The theatre is a safe space and artistic representations allow carers and other vulnerable groups to feel seen, heard, and valued, without having to disclose their own individual experience. As a researcher I can give you the evidence, but it’s artists – in this case the playwright, director, and actors – who can really bring those facts to life.

Brenda: There’s a really powerful feeling that comes with seeing yourself presented on a stage or a screen, and hearing words you recognise. We want to take something which often feels so insular and isolating, and show that other people feel the same. Especially when exploring the sensitive subject matter of suicidal and homicidal thoughts, creating a liminal space like the theatre where people can relate, empathise, question and confront their thoughts about it could be, we hope, really impactful.

There are elements of ‘parent blaming’ as parents of disabled children strive to support their family – is this something you’ve come across?

Dr Siobhan O’Dwyer: Parent carers often describe feeling ‘damned if they do and damned if they don’t’. If they don’t fight for their kids, they’re accused of neglect. If they do fight for their kids, they’re accused of being greedy and aggressive. But all they want is for their kids to have the same opportunities and quality of life as everyone else. Many parent carers have to fight day in and day out, for years or even decades to get their children even the most basic of supports, so it’s not surprising that some of them reach a point where they feel so overwhelmed, hopeless, or beaten down that they consider taking their own lives or the lives of their children. The aim of this research was really to bring those experiences to light and use them to advocate for better support for children with disabilities and their families.

Brenda: My brother is autistic, and this is actually something I’ve come across within my family. My parents have had someone say to them “I see where your son gets his behaviour from”, when my brother was distressed because of his autism, and my parents were just displaying frustration at a system and a society that wasn’t designed for people like him.

It was interesting growing up as a sibling, because I saw how much of themselves they put into supporting my brother and how much they care. You’re brought up by great, loving parents, and objectively very likeable people, so it’s odd when there’s this disconnect with how some services or other people in the community have seen them. Because they fight for their son when they have to, which is often. It’s one of the reasons why this play is important – giving carers the space to be heard.

Some parents grapple with this identity of carer, and their own guilt or feelings, at the same time as judgement, and you can lose yourself in it. This was the guiding idea of the character Esme in my play, who says “It’s their job. It’s my life”.

Part of that sense of being let down by a system, is building trust – how did you do that and how has the production created an authentic and honest environment to share these experiences?

Brenda: As a playwright and director, me and Ellie have experience of giving care and knew from the beginning the responsibility it was to share these stories. We cast actors and built a team around us who all have experience of being either a carer or being cared for. With Siobhan’s support, we creatively explored the emerging research findings with our brilliant actors and took their input before I wrote the script, and then also had a feedback process with four carers before writing the version of the play you will see on the 23rd [at the Exeter Phoenix].

You’ve said the show is part of a dialogue – who should see the show and how are you aiming to continue the conversation?

Dr Siobhan O’Dwyer: Everyone! For people who are carers, we hope they will see their stories represented in the play. For people who aren’t carers, we hope it will open their eyes to the incredible work that parent carers do, as well as the very real challenges they face, and encourage them to think about what they can do to support the parent carers in their community.

Brenda: Everyone should see the show! I would love carers to see it, in the hope that they see themselves represented in some way, and I would love policymakers, and people in positions of authority to see it and see these stories of people, rather than numbers. But also I want people to see it who don’t know any carers, who want to see some theatre, who want to hear something new, and see a play that would raise awareness in the hopes they will go and speak to others about it! It’s a still developing piece, so this is just the beginning. We hope the audience at the Exeter Phoenix will give us feedback that we can use to develop it further and take it on the road to carers and communities across the UK.

How did the show come about?

Brenda: Me and Siobhan have been speaking for a few years about wanting to create a play from her research around care. I was interested because of my own experiences growing up with an autistic brother, and Siobhan read some of my previous work and wanted to work with me. We built an incredible team up from there, and received funding to make a piece of work inspired by Siobhan’s current research, and it’s been an amazing journey since.

How important is it to hear the real voices of people in these situations – and how do real voices square with creating a dramatic story?

Dr Siobhan O’Dwyer: As well as learning from the emerging findings of the research, Brenda has met with a range of parent carers and charities who support carers. She has also drawn inspiration from autobiographies and fictional accounts of caring, such as Shtum (by Jem Lester), The Girls from Corona del Mar (by Rufi Thorpe), and Home is Burning (by Dan Marshall). This combination of real and fictional voices ensures the play is both grounded in truth and has the beautiful creative blend of joy, humour, and heartbreak that will move an audience to action.

Brenda: I believe it’s vital that real voices and real experiences shape a script, as we want to share a genuine experience. I came in with my own experiences and views of care, but I’ve learnt so much, been challenged and have discovered a lot throughout this process, and without that process this play would not have the impact which we believe it does. Without the real voices which shaped it, there would be no play. Every experience of care is different and complex, but also what surprised me was the similarities in experience – certain themes and specific issues were repeatedly mentioned, and it quickly became clear what we needed to explore and write about.

This is a developing piece, and the team are really interested in audience feedback on the show. There will be opportunities for the audience to write down their thoughts on the night and help them continue this dialogue.

Top image: Until Tomorrow in rehearsal. Courtesy of Steven Haywood.