‘Being with’ in theatre

Oily Cart has been making sensory theatre shows that are accessible for all children for 40 years. We don’t use the word ‘all’ lightly. In fact, we take the art of including those who have the most barriers to access extremely seriously. The deeper you get into considering different ways of being in the world, the more you realise there are no easy answers.

How can you make theatre for someone who has a radically different perspective from you? And how can you judge someone’s enjoyment of your show if you don’t understand the way they communicate? These questions are at the heart of the ‘Being With’ report, which is the outcome of Dr Jill Goodwin working for two years as our researcher-in-residence.

In the arts, we are pushed into telling the story of the positive impact we are having. Yet making good shows that are practically and creatively accessible for all children is easy to say, and complex to do. When you think you’ve made something for everyone, you are simply not aware of who you are still excluding. We wanted to explore the parts that even after 40 years, still confuse and bewilder us. It was time to get comfortable with being uncomfortable.

But we need to understand who exactly we are talking about when we use the dissatisfactory label ‘children who experience most barriers to access’. In the report, Jill addresses this by introducing a fictional child called Khaled who:

“…is ten years old, has big brown eyes (that really gleam) and a thick mop of dark hair. Khaled’s body is still. If you offer him an object he does not reach out and if you place the object in his hand, his fingers do not explore it. If he’s lying on a trampoline, he may smile when he’s bounced. Khaled is silent although sometimes you can hear his voice in his breathing.

How not 'to other'

It’s uncomfortable discussing people whose ways of being in the world we can’t experience for ourselves. We’re conscious of the potential for ‘othering’ and admit that we’re yet to discover how to meaningfully apply the guiding phrase ‘nothing about us without us’ in this context.

However, we feel the greater risk is not talking about individuals like Khaled and continuing a cycle of this community being at best invisible and at worst erased. Our aim, despite these tensions, is to move a step closer to making theatre more equitable.

The three areas that our ‘Being With’ report homed in on raise uncomfortable questions in our practice. They are: language and labelling; personhood and agency; and the role of the supporting adult.

Language and labelling

Oily Cart has moved away from using the term 'profound and multiple learning disabilities' or PMLD, often used to describe members of our audience. As one disabled creative put to us: “If you can reduce someone to an acronym then something is badly wrong.” The term focuses on what someone can’t do, rather than describing who they are, despite living in a world that is not made accessible to them.

On the other hand, two parents have told us that the terms we now use, which refer to someone’s barriers, play down the impact of their child’s medical conditions.

We are still searching for terminology that can communicate who we love working with without medicalising their way of being in the world. We take seriously our role of making opportunities for young people’s own voices to be appreciated in their own right.

Personhood and agency

The definition of personhood in philosophy does not acknowledge the personhood of people like Khaled because they have no provable self-awareness, self-determination and capacity for reason.

This is significant because it feeds into legislation. During the pandemic for example, there was much controversy when disabled people’s right to be resuscitated was taken away without their consent. Thankfully there are philosophers arguing for new definitions of personhood and researchers who argue that 'voice' and 'linguistic competence' are not the same things.

The report also explores how our audiences cannot always demonstrate agency, independence and progress. Professor Melanie Nind highlights how meaning is often associated with productivity, even though simply ‘being’ together (apparently doing nothing) can have real meaning. This idea of moving from ‘doing’ to ‘being’ was at the heart of our work.

Role of the supporting adult

During the pandemic many of our sensory shows took place in the home. ‘Space to Be’ was designed to bring the whole family into a sensory headspace to experience the show on equal terms. Through this project we saw the potential of theatre to bring people out of their heads and into their bodies to be together fully in the present moment.

Performers in our shows are other adults who can have a huge impact on how equitable the experience is. It can feel challenging to be with someone who doesn’t respond in a way we recognise.

There can be a tendency for performers to push for visible responses to validate their work – what I refer to as ‘moment-chasing’. But what would it look like to reframe ‘success’ in front of a more seemingly passive audiences? Is it possible to recalibrate our measure of success to recognise the impact the disabled child has on us?

Embracing the uncomfortable

Tensions still exist in all these discussions. I am a big believer in keeping your questions alive. They create the pathways into new artistic territory. When we deal only in answers, we are only ever dealing with simplified and often dangerously biased versions of the truth.

We will never understand everything from every perspective, and we cannot know what many of our audience members and collaborators think and feel.

What is clear is that truly ‘being with’ audiences who experience the greatest barriers to access requires us to reconsider our own perspective. To follow their lead. Slow down. Do less. Embrace the uncomfortable to simply ‘be with’. Only then will we see the full potential of the arts to connect us all with what is shared and what is most deeply human.

Ellie Griffiths is Artistic Director of Oily Cart and founder of the Upfront Performance Network.
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