One of the problems with the advocacy organisations, and the many other organisations who have people with dementia in their mission statements, and who state they advocate ‘for’ us, and many who also say they are ‘fueled’ by the loss of a mother or father or some other person they loved ‘to dementia’, is that they may say they want there to be ‘nothing about us, without us’, but who more often, do not act in ways that ensure that happens. They are, in fact, quite happy with their status quo, doing ‘for us, rather than enabling us to ‘do for ourselves’. In the disAbility sector, it is common practice to enable and empower people living with disabilities to ‘do for themselves’, but not so in the dementia sector yet. Perhaps it is because they are either the ones on the podiums and getting invitations to present at events about things like dementia friends communities, or they are organisations accepting the grants (because they ‘included’ us), and who receive grants because they have proven they have relationships with us, and ‘engaged’ with us.
Globally now, more and more people with dementia are standing up and saying this is unacceptable, as we want agency in our own lives and affairs. The ‘about us, without ALL of us’ has to stop, and having the same few people with dementia on consumer advisory groups, working committees, etc, is not even remotely about us without us. It is simply a group of mostly white middle class people with dementia, always having their say and making decisions that impact all of us. It seems always to be the same group of people with dementia and their care partners who are always being funded to travel, spend time in hotels and at events, and who are asked to stand up and represent the voice of people with dementia. It is not humanly possible, that they can always be our voice, and even many of them cite the famous quote from professor Tom Kitwood, which goes soothing like, “if you have met one person with dementia, you have done just that. You have only met one person with dementia.” And we all know, no two are the same, even if they have the same type of dementia.
Commonly I recommend that other speakers with dementia are invited to speak at events, as I have been doing it for some time now, and their voices need to be heard. Mine has already been heard, and I continue to make it heard via my website blog and other writings. We need others, and it is up to us to ensure we pass the baton, especially as we have a condition that is progressive and terminal. If it’s the same ones always representing people with dementia, then the voice of people with dementia will simply disappear when we can no longer present. It is time organisations who ask us to present, look beyond those they already have relationships with, or who have personal friendships with, as it is REALLY important we and they empower as many people with dementia as possible. On top of that, the sector is changing, and so my experience of diagnosis or post diagnostic support,may be very different to some just diagnosed. Care partners have the same responsibility to pass the baton to newer care partners, as their experiences are changing too. It is not only up to others to include us, it is 100% also up to us, not to hog the stage.
We must support everyone with dementia to have agency in their own lives and affairs, and empower them to speak up for themselves, either behind the scenes, or publicly. And we must all learn to pass the baton to ensure our legacies live on.