Attendees were given a piece of paper with a name on- ’squirrel’ was one example, and then told where to sit. The lecture theatre seating had been transformed, the usual numbered and orderly rows had been jumbled into completely irrational rows – number 9 was at the front followed by ‘squirrel’; the colour green etc – you get the picture? No? well that’s good because that was the whole intention.
The conference was about dementia, specifically about how it may feel to be living with dementia and be in hospital. It was about disrupting our feelings of confidence, connectedness and security; facing something unfamiliar, unexpected, and being on our own in a room full of people we don’t know.
It was the not knowing what was expected of us, what was going to happen next, that created a palpable feeling of unease. The organisers tried their best to be directive, and whilst polite, were fairly unhelpful; deliberately avoiding offering help to those who were struggling with the seating plan or fastening their gowns. There was no explanation of the processes, no agenda of what to expect, no introductions, no welcomes.
Everyone looked the same in their hospital gown. Personal identity stripped. Some (but surprisingly very few) challenged the seating arrangements, but were told that they had to sit where they had been told. A couple didn’t put the gowns on, but when the lecture room filled up, and they were the odd ones out – their gowns went on!
The audience experienced for a very short time, how it felt to be anonymous, not in control, confused and alone. It was temporary – but uncomfortable. They will remember those feelings.
A text by Kate Swaffer on Identity, Isolation and Dementia was read from the back of the room- purposeful, so the words were heard.
https://kateswaffer.com/2012/08/07/identity-isolation-and-dementia/
The Chair’s opening remarks brought some well received clarity. Yes, the organisers had been atypically unhelpful, yes, the seating arrangements were deliberately meant to confuse people and not facilitate sitting together with known work colleagues, yes, the gowns were meant to make people feel silly and uncomfortable.
However, as the Chair reflected, this gave us a tiny glimpse into what it can feel like to be a patient in our care; vulnerable, uncomfortable, out of our comfort zone, confused and anxious about what’s going on. The feedback from the day demonstrated an overwhelming feeling that our goal had been achieved.
Tommy Whitelaw (Tommy on Tour) was the first speaker and brought tears to many of the audience as he described how he constantly fought to retain his mum Joan’s’ identity – favourite shampoo so she smelt the same, little things.
Identity is important to us all. We should value and protect it in others as we value and protect it in ourselves. We should never allow our identity to be lost through illness or disease. Because when we know someone and understand what matters to them we can provide them with the personalised care that we would want for ourselves and our loved ones.
Every one of us is different and that is good.