Over the last few months, perhaps years, I’ve noticed an increasingly offended, and even occasionally, an increasingly outraged voice from care partners of people with dementia, objecting to the louder global voice and inclusion of people with dementia. We are quite rightly, adding to the public discourse on dementia.
There has, for a number of years now, been a very slow but determined changing of the guard in the public arena about the experience of living with dementia.
For a long time, it was almost exclusively the clinicians and researchers who wrote or spoke about what it is like living with dementia and what is best for us. Then, the families and care partners started speaking up about our experience, about what it is life for us, what is best for us, and of our suffering. Many have become ‘celebrities’ along the way doing it, receiving pats on the back and various awards for their caring roles, and pity for how hard their job was.
Over 20 years ago, Christine Bryden and the late Peter Ashley, and then the late Dr Richard Taylor and Helga Rohra (and perhaps others I don’t recall or know about) joined the global stage, speaking out about what it is really like living with a diagnosis of dementia and what is best for us. I joined them on that global stage in 2012 in London, although had been speaking up locally since 2009. It is curious to me, that the groups that seem the most upset by this are the care partners; I wonder is because the balance of power is shifting?
This year for the first time in many years at ADI2016 in Budapest (a conference on dementia), there were many people with dementia speaking every day including as keynote speakers, and no care partners speaking. No care partners had submitted abstracts either, so none of them were even speaking in concurrent sessions. On the other hand, many people with dementia had also submitted abstracts, and quite a few had also paid their own way to attend so they could have a voice. I guess as we were told to do, care partners will have to start submitting abstracts and pay their own way occasionally as well.
I agree it was definitely an oversight on the organising committee, but the distressed feelings of not having a voice, has now been felt, and rather publicly expressed by some care partners. But it is definitely not our fault that this happened.
It an unpleasant feeling to be left out, to not have a voice, and it is unfair, but, it is exactly what those of us with dementia have been having to put up with for years. We have been advocating for a more equal inclusion so that is it not ‘about us, without us’ for more than 20 years. It is not a competition, it is a human right for us ALL to have a voice.
The time is now that things are changing, and whilst we get some balance of ALL voices onto the global stages, the imbalance may swing the other way for a while. That may not be the best way for it to happen, but it is usually what happens until society gets to accept the new norm.