Larry raises important questions about the relationship between dementia organisations and people with dementia. This should be required listening for all dementia organisations. ARE we really listening?
Big organisations, who – especially those from the last century or the century before – have a sort paternalistic DNA, which seems to infect everybody who is recruited to join them, and when they become employees they exercise a sort of condensation… condescension sorry, my brain is condensing! Condescension that they ‘other’ us, that they makes us the ‘other’ because we have a medical condition that has damaged our brains and is progressively deteriorating.
They seem to think it gives them the right to always assume the position of power and to exercise it over us. They seem to think that from this paternalistic point of view, their views are more important than ours, and that because they are professionals of course they can stand on their professional credentials and say they know more about us than we know about us.
The mantra ‘nothing about us without us’ is actually traduced by them because they use it to engage with us and bring us in to things, but in an exploitative way. That they kind of use us up, that they kind of exhaust us. That they get us involved as participants, speakers, contributors, research participants, co- researchers. And sometimes we might get a mention, sometimes we might get an acknowledgment but we’re still, essentially, treated as a resource that they kind of mine into our minds to produce papers, reports and studies in academic journals and so on.
I think that comes from this paternalistic othering of us, that we are not the same as them and they are not the same as we, and where I think, as a movement of experts by experience we need to move urgently to, is accountability. They operate unaccountably, they are only accountable to themselves. Their trustees are not us. We are – I was asked to step down from a board of trustees because I came out and told them I had dementia, and then they said in that case you no longer have the mental capacity to take on the legal responsibilities of being a trustee.
So they are not accountable to us, and actually every penny that they earn, they exist because we do, their salaries, their funding streams, their income, their project budgets, all come about because we exist, but they operate unaccountably, they don’t answer to us. They ask us to present our views and then promptly ignore them. So I think: political with a small ‘p’, there are two things here, we need to promote a philosophy – and maybe we have to grow it ourselves, to become expert by experience philosophers – a philosophy of equality that says somebody with a neurological condition is still a human being, still has personhood, still should be respected, still should be covered by the constitutional rights of citizenship that every other human being enjoys and that our views should be balanced and weighed equally, and that when decisions are made about us without us, the people who make them should be accountable to us.
