This is an observation about how as a community we share our knowledge and what we can do to improve this. It is a massive topic, so I’m just focusing on one part of our knowledge network to start trying to understand what works and what doesn’t and why. It was prompted by a chat with a friend who is living with dementia.
A place to talk
There is a space where questions are asked and some are answered, concerns and jokes are shared, while the voices of those usually quietened have the opportunity to say their piece. A tool for engaging. A hub of knowledge. A place of support. This is Twitter.
Forgive me as I name drop. I first met Sunday Times best-selling author Wendy Mitchell on Twitter. In fact, the first few months of knowing one another was from behind our respective usernames and profile pictures as Wendy patiently answered questions I had about how she used technology as a person living with dementia. A year or so later and I would be on the train travelling through the Yorkshire Wolds to visit Wendy at her house to chat about Alexa and other digital life forces.
Now on the face of this, Twitter has been brilliant for me to be able to ask questions of people living with dementia whom I may never have had the opportunity to meet. Their lived experience delivered to me in 140 or 280 characters. Boom! Engagement done.
@WendyPMitchell, @agnes_houston, @mason4233, @george_rook, @DementiaVoices, @doryitsme, @TommyTommytee18, @howardgordon54, @KateSwaffer – apologies for those I’ve missed out – have become cornerstones of my Twitter neighbourhood and have enriched my knowledge of dementia greatly.
So what's the gripe?
But for all Twitter’s uses as a conversation tool, do researchers, do policymakers, do I rely too heavily on social media to access those with lived experience? Everybody has an opinion that is worth hearing, regardless of whether they use Twitter or Facebook. And the conversations occurring offline in cafés, friendship groups and other community settings should also be the ‘influencers’ of change.
A friend recently said to me “where are the voices of dementia?”, as we talked after an event. And they had a point. Representation was minimal and the methods to ensure participation in ongoing conversations are imperfect. And from my experience, these observations are frustratingly familiar.
So what can we collectively do better so that knowledge is shared and easy to find, so that questions about services and support can be quickly answered, so that more voices are heard, so that everyone can enjoy the rarefied atmosphere of the ‘Twitter bubble’?
If you have any thoughts on this, please tweet me @dementiamap (I recognise the irony).