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The words from the poem ‘do no go gentle’ by Welsh writer Dylan Thomas have not only inspired the recent BSG Conference in Swansea  but also a workshop held as part of the dementia-awareness day at Chapter Arts Centre in Cardiff earlier this summer.

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On 17 May 2017 Louise Osborn [pictured above centre] facilitated an intense and rewarding three hour session which included excerpts of the Do Not Go Gentle play performed by Everyman Theatre [which will debut at Chapter this September] and was combined with workshops and discussions with a group of attendees.

From my perspective as somebody who researches ageing, and who has/is experiencing family dementia, this workshop allowed me to explore three ideas: (1) the power of the arts to explore complicated social issues such as dementia; (2) understanding that generation groups experience society differently and (3) that we need to engage more deeply with the politics of care. My blog article considers the above in order.    

1. The power of the arts

Do Not Go Gentle was written in Australia by Patricia Cornelius and largely centres on the story of Captain Scott as he travels to the Antarctic. The production has developed through a collaboration with The Drill Hall Theatre Company of Mullumbimby in Australia and there are many local links as the expedition set sail from Cardiff and was fuelled by Welsh steam coal. 

The actors from Everyman introduced different elements of the play and performed them to the group. As we get deeper into the performances it was possible to sense that there are many other stories connected to the central narrative; in fact it was revealed later on that the entire story is set in a care home and that the main character has believed himself to be Captain Scott. The other people also live in the care home and join in with the adventure.

Members of Everyman clearly enjoyed the opportunity that the play offers to act as somebody who is a different age or has a very different identity to themselves. Art forms such as theatre allow us as an audience to get so involved in the story that we suspend disbelief and give ourselves the opportunity to focus. One of the comments that this provoked was that we should people with dementia tell their stories, particularly if they are close friends or family, and even if we have heard them many times before and especially if we know that the facts are not totally spot on. In essence there was a call to let people be; and perhaps even to ask if people are happy and contented when they experience dementia?
We heard from the Everyman actors, all of whom are amateurs, that the experience of performing connected the mind to body and helped people to push their own boundaries, to confront fears and to connect. Many times within the session we connected with Dylan Thomas’s desire within the poem Do Not Go Gentle  to ‘seize the day’; and never to be so scared of death that we forget to live.

2. Understanding that generation groups experience society differently

Writing as a thirty something, it is sometimes easy to forget that other people collectively live through experiences that I as an individual can only imagine with real difficulty. One small piece of the play was especially strong for me; we witnessed one character who relives the relationship with the son who had served in the Vietnam War and had been found hanging from a tree [Australians served in this conflict].

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For me the topic of war triggered memories of conversations with my own grandparents. Particularly I recalled how my Granny had gained experiences in WWII that changed her life forever, alongside many other women in Britain. So how do we as researchers understand society ‘before’ and ‘after’ periods such as WWII? And is the advent of the internet likely to have an equally big impact on how people act and see the world?

Through the participatory workshops we particularly considered the position post-war baby boomers, some of whom feel that they are now a sandwich generation caring for both their very elderly parents and also having to help their children. One of the attendees talked of a parent who had received a Victorian upbringing; to me this seems like a long long time ago but it is important to consider how long certain cultural practices and values can have an impact on our everyday lives.

3. The politics of care

This was perhaps the most poignant part of the session. We heard some very honest accounts of people who are having to make massive contributions, both emotional and financial, in order to support parents and partners who had gone into care. Unfortunately it seemed that the best care could only be secured by people who had financial and time resources – and were also prepared to fight for it.

We also heard cases of people who had to ask themselves whether to prioritise looking after parents or their children; and there are many cases when people experience their partner getting dementia. It was particularly touching that we had a couple in their late eighties amongst us; the husband was supporting his wife. Although the husband said that he found the nonlinear stop-start nature of the play excerpts to be a slightly abstract way for him to engage, he (was) nonetheless took time to explain a great deal about their story together. He was commended by another person in the group as being a ‘loving and perceptive partner’ to his wife; few could disagree with this sentiment.

Towards the end of our discussions dementia was compared to other health conditions, such as cancer. One person said that ‘your mind is who we are’ and we were urged to push the agenda for social care and dementia to politicians and the wider public.

Conclusions

In summing up this session it was clear that everybody had committed a lot of themselves to the experience: it was emotional and quite disturbing at times but humanity shone through. I felt that the format of jumping around within the play was very effective as we never really knew what the focus was: a deliberate artistic device to convey dementia I think. From my perspective as a researcher, these epistemological considerations [that’s to say ways of knowing and methods for engaging with how other people sense the world] were very important. The stories of war and the position of the sandwich generation also made me realise that certain generations have collective life-changing experiences which change society forever.

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Large credit must go to Kathy Thomas and Everyman as a volunteer-run organisation who had only been given a small grant through the Gwanwyn Festival to put the event on; also to their members who gave their time to be at Chapter on a weekday morning. Ellie Russell and Chapter also deserve recognition for engaging with dementia and for programming a session which used the arts to soften us up and let people talk. Finally I am grateful to those people who attended and recalled some very testing experiences. On a very personal level I had to go for a walk after this session. I was also promoted to call my 86 year-old Grandma to see how she was. Amazingly she was out so I just left her a message. Good to know that she is busy. She still hasn’t returned my call.

The play debuts in Chapter from Tuesday 5th September until Saturday 9th September. Tickets through www.chapter.org or 029 2030 4400.

All photos (c) Everyman Theatre

Written by Aled Singleton, PhD Candidate Swansea University, @aledsingleton