Maybe our whole life is an illusion, but seriously, people with dementia are definitely still not being equitably included.
This is a message I received some time ago from a friend from Singapore:
“Thanks, Kate for sharing this powerful quote of Saul Alinsky. This is so real and happening when it comes to people living with dementia. People and organizations failed to realize or choose to believe that they are being inclusive when in actuality the decision power is still in their hands not the people living with dementia.”
“To give people help, while denying them a significant part in the action, contributes nothing to the development of the individual. In the deepest sense, it is not giving but taking—taking their dignity. Denial of the opportunity for participation in the denial of human dignity and democracy.”
Saul Alinsky
In reality, I have forgotten where I quoted Salinsky, whether it was here, or in one of my books. Anyway, for me, it still makes a lot of sense, and this comment adds to it greatly.
For now, it seems that most of the dementia self-advocacy around the world has not been an equal win:win for all- or indeed, any of us.
It has been meaningful, engaging and extremely positive and helpful for the advocates, myself included, as it has given us back purpose, a reason to get out of bed every day, and a belief it will eventually help improve outcomes for people wiht dementia and their families and care partners, as well as influence reseach positively. Of course, all of that might be true, and as such, it can feel like I am wanting too much…
However, my litmus tests are simple. I see no proof that we have yet adequately impacted one of them yet; if people are still being prescribed disengagement at diagnosis, if offensive and disrespectful language is still being used about us, if we are only included when we are wiling to say what a large organization wants us to say, if we are mostly used to garner funding for an organization or a research project, whilstever there are no people with dementia in paid employment, including (especially) in the dementia friendly initiatves, whilst we are still being institutionalized, restrained and segregated… I have issues with saying it has been effective.
The ripple effect is ok, but it is not enough, especially after more than three decades of advocacy.
