Another great day with York Minds and Voices – ‘A coming together of equals’

Some time ago Minds and Voices received a visit from Gaynor Brown who was interested in what we did and wondered if she could help establish a similar peer group in the beautiful Craven district in the Yorkshire Dales.

This week we finally visited Gaynor and a whole host of people involved in the local ‘Dementia Friendly Communities partnerships’ in Skipton – I think that’s the new name for Dementia Action Alliance! Gaynor has done superb work and had gathered around 50 or so interested folk including many people living with dementia and their care partners.

Well the MandV gang went down a storm – there’s  a real drive and unity of purpose in wanting to share the message that a good life with dementia is possible. I showed a few slides and the group shared their testimonies in a very natural and spontaneous way. I have said it before but there is a real maturity warmth and a tangible sense of belonging amongst this group that allows them to speak so freely and confidently.

We spoke about our beef with accessible trains and Rita recalled being dragged along a packed train by yours truly before needing a stiff drink.

We spoke about the time we did a consumer testing of the Mecca Bingo in York. Peter reminded us of how it felt like another world. ‘We had no idea what was going on. I could have won thousands and not known!’ Brilliant.

We spoke about the course we have created – for people newly diagnosed with dementia, because so many at the moment of diagnosis feel abandoned and on ‘a cliff edge’. As soon as we mentioned that, all around the room people with dementia spoke up. ‘Exactly!’ shouted Stuart ‘that’s what happened to me’.  It turns out that Stuart is arranging a football tournament so that youngsters can find out more about dementia to break the taboo and stigma they are fed by so many myths and misconceptions. Fantastic.

Gaynor spoke beautifully of her visit to Minds and Voices. We were all moved when she said how welcome she felt and how she was struck by not knowing who was running the meeting; and what a sign of hope this was that people could meet genuinely as equals setting their own agenda and not be told what activity to do, when to leave, or what to say.

This message was put into stark contrast by what I can only describe as an attempted hijacking of the meeting by a lady who spoke about the group she runs. ‘we don’t talk about dementia in case it upsets them. we do bingo for them and take them out’.

We were delighted that there were people who enjoyed that input too but Eddy pointed out with some determination ‘Well, we DO talk about dementia and we are comfortable talking about dementia and are not ashamed of having dementia’.

Horses for courses, I suppose, but what we have found is that when people come together as equals, laughter happens, socialising happens, relationships build and support and activism soon seems to follow! Find out more about the UK network of Dementia Voices here

 

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