A Horse Called Freedom: Exploring theatre and dementia

Barney Bardsley: In autumn 2017, Rosa Peterson and I began work on a playwriting venture for the Every Third Minute festival of theatre, dementia and hope. This project was originated by Nicky Taylor, Theatre and Dementia Research Associate at Leeds Playhouse, and was commissioned and staged by the Playhouse in February–March 2018. The play was one of three short pieces, each co-written by a person – or a group of people – living with dementia, and a professional writer. Our play was titled ‘A Horse Called Freedom’ and was premiered, along with the other two pieces, at the Courtyard Theatre, Leeds Playhouse, on 9 March 2018. It then went on a two-week tour, to care homes and community centres, in and around Leeds.

The process of co-writing this play was painstaking and innovative. I already knew Rosa Peterson, who has vascular dementia, from Playhouse dementia-friendly sessions, called ‘Our Time’, which I helped to run every week. However, neither of us had worked as closely and as intensively as this before. I have been a professional writer for over 30 years, but have never collaborated in such an intricate and delicate way with another writer. Rosa, meanwhile, had never done any creative writing before, except for small poetry writing forays in the Our Time sessions. For both of us, it was an education.

In order for the project to succeed at a deep and truthful level, there was a need for mutual trust and respect from the outset. This was something which had grown between Rosa and myself during our previous three years of Playhouse work together. We shared common interests – a love of nature, of animals, of the funny and sad interactions between people – which enabled our conversations, and the subsequent material generated, to flow freely.

This kind of collaboration requires sensitivity on the part of both participants: a willingness to listen, to wait, to learn together. We spent seven weeks meeting and talking. There was much laughter – and sometimes tears. I recorded our conversations and transcribed them, word for word. I then shaped the material into rough scenes, and showed them to Rosa. Together, we edited and polished the piece, until we were both happy with the result. Our meetings were sometimes observed – and interviews carried out – by Nicky Taylor, as part of her PhD research into creative co-production with people living with dementia. Thus, at each stage, we were given pause to reflect and consider the playwriting process, and our relationship, as it unfolded. Rosa’s long established connection with Nicky allowed this intervention to seem natural, and to go to a much deeper level, than with an unknown researcher.

The title of the piece refers directly to a powerful experience Rosa had as a 14 year old girl, riding a runaway horse. This horse became a symbol of freedom for her – and for the play itself. All the other themes, were suggested and described by Rosa herself: her love of nature; the loneliness of the dementia condition, its symptoms and challenges – such as hallucinations, problems with vision and with memory; experiences with family; of loss and of enduring love; plus a powerful vision of how society should be caring for people with dementia, in specially designed homes and communities. ‘A Horse Called Freedom’ is a deeply personal piece, but also a political cri de coeur. Our hope was not only to reach out to other people with dementia, but to everyone in society, who may have pre-conceptions and prejudice about the condition, and to those in positions of power, who could do more to help solve some of the challenges caused by this complex condition.

Rosa Peterson: When I was first asked by Nicky Taylor to do this project, I was a bit scared. I didn’t think I could do it. There was a voice in my head telling me I was hopeless. And other people said that, too. But then I found out that I could do it, and I did!

Barney and I already knew each other, and that helped a lot. We met once a week and chatted. We talked about my hopes and fears. The horse was the first thing we talked about. On that horse, there was freedom – like flying. When you’re riding, you forget things, all your troubles. As we talked, the experience came back to me. It was a way of making the past more present.

Talking about my hallucinations was hard. It’s horrible, scary, frightening. I was talking about them to someone the other day, and she said, ‘You know it’s not real’. I replied, ‘To me it is’. And she said, ‘But it’s not’. That isn’t helpful to me. But talking about them in the play helps other people who have them, so they know they are not the only ones who are suffering.

This project was not just helping me, it was helping others. Why is it important? Some people think, ‘Oh, she’s got dementia. She’s no good. Throw her on the scrap heap!’ But we can still do things. And I’ve always helped other people, it’s always been a part of my life. Still do. Can’t give up.

The process of co-writing was easy, because I trusted Barney. I knew her and so it was so much easier. With Nicky’s research, I was eager for her to be actively involved in the conversation, rather than just observing, because I knew her. I couldn’t have done it otherwise. When it came to editing, there were certain things I wanted left in. And there was some material that could be left out. And as for ideas for staging, we had the harp for music. We wanted a real horse, but we couldn’t get one!

We went out together too, to the market and to a horse sanctuary. I wasn’t so scared of walking through the market, as there was someone with me. The market has altered. Used to be livelier. Feels like my patch has gone. Like my illness. Still the same Rosa, but something’s gone missing. Visiting the horse sanctuary was brilliant. I wanted to take one of the poorly horses back with me. It reminded me of riding again, the freedom. It made the process of writing the play more real. It was good just to go out – an important, three-dimensional experience.

Then we had script development week, with five performers and the director – plus a television crew on one day. This was frightening, but they were all good. They did it so naturally. I kept thinking they would take too much out of the play, but we stopped that happening. We said certain things couldn’t be chopped. Sometimes I felt in charge at this point, sometimes I didn’t. It was hard to hear my words spoken by someone else. The hallucinations – hearing them re-enacted – was the hard part, and it felt hard to hear the section about my great granddaughter, because it reminded me of the things I’ve lost. But I got a lot of support.

Friends and family came to see it, and I thought at first I would be very nervous. But when it started it was alright. It seemed good: it flowed. The other plays were brilliant, and seeing them made the experience richer, it helped. The tour was good, too – it was lovely to see their faces and hear the different responses. Some just sat there – but they still enjoyed it.

This tour to care homes was important, to show the piece to the carers, so they saw that, although people have dementia, they can still do things; and it might encourage the carers to get the people they are looking after to do more things themselves. Also, the people watching might not have many people going in to visit, so it was a change for them and a new experience for us. I have taken part in talks after some of the performances too. It was terrifying to be on stage. I sat sideways so I didn’t have to face the audience. My message was: Don’t Give Up On Us.

There was a big gap after the tour, with nothing to do, so I got down in the dumps. But what are we going to do now? Carry on! We are going to go into care homes, using scarves and balls and movement, starting soon. It’s another step. People with dementia, helping each other. We’ve got to aim for another festival too, a smaller one. While we can do it, we have to keep doing it.

Barney Bardsley: Every stage of this creative process has been a revelation, in terms of Rosa’s imagination, articulacy and courage, in telling her story. She willingly shared her experiences through interviews and recordings, even on very sensitive subjects. In this way, she has contributed directly to important research, indicating a rich seam of creative potential for people living with dementia.

The play continues to have an ‘afterlife’, too. It was recently performed again at the New Vic Theatre in Stoke on Trent, as part of their Live Age Festival of older people’s creativity. Rosa and I continue to meet and talk about our shared experiences. It has been one of the most fruitful artistic collaborations I have ever had, and I feel both changed and enriched by the whole process. May there be more of this, up and down the country, and internationally, too, to show just how vivid the imaginations of people living with dementia remain, and how useful the creative arts are, in supporting their freedom of expression.

Rosa Peterson: There is a poem at the end of our play which sends an important message of hope for the future, that there may one day be a cure, and, in the meantime, more understanding for people who live with this condition.

It’s cool and clear

In the deepest night

There’s a handful of stars

Glittering – bright

Although they are really

So far away

If I reach, I can touch them

And here’s what they say.

It’s a message of hope

They are shining on me

‘Hang on’, they are saying

‘Soon you’ll be free’.

This whole process has helped me reach out to other people with dementia. Don’t give up. The day will come when you can’t do it. But do what you can now and be proud of it.