As we have been travelling around the UK, just like in Australia and many other countries now, there is a lot going on regarding the dementia friendly communities work, and lots of excited and truly committed professionals working on these initiatives, and organisations hosting and attending events about being dementia friendly.
So far, Australia is the only advocacy organisation I know if that has actually employed someone with dementia in this work and even though it was only for six months, it was an outstanding start.
Advocating for action, advocating for change, advocating for our rights to an inclusive, accessible, non discriminating community or organisation needs to start from within.
The organisations ‘leading the way’, I feel, must themselves act upon their own words, and not just engage with us, but actually respect our expertise enough to employ us as consultants.
Employing people with dementia is the ultimate “dementia friendly” litmus test.
If an organisation was, for example, setting up a new IT division, they would employ or contract expert IT consultants…
Setting up dementia friendly communities is no different. If it remains about us, without us, it is not in the least bit dementia friendly. Too often, even dementia friendly communities conferences or events are still being run without us. It is not good enough, and we must stand up for FULL inclusion.
One or two of us is not enough either, and it is still, very much, as if we are being ‘helped’, still very much us and them, as if we are not able to act fully for ourselves. We are still all here, although we may be “changing in ways that others are not” (John Sandblom, 2014).
Employing people in this work, none of whom live with a diagnosis of dementia makes no sense, and shows us little respect. It is also not fully and authentically including us in the very matters that most affect us; we are the ones who can say what is and what is not dementia friendly.
Too often, organisations are engaging with people with dementia, to ensure they can meet certain criteria;
- They can market themselves as having included people with dementia
- They can apply for funding where the requirement is to have engaged with people with dementia (in my experience, too often it is only with one or two people with dementia, but the funding still gets through!)
- They use this engagement as a marketing tool to increase their business; indirectly, this means they are using people with dementia, rather than properly and fully engaging them, and as I have said before, there really is big money in dementia.
Engaging us, rather than employing us is a major issue, as none of these organisations seem willing to employ us, even though they advocate for full inclusion, non discrimination and reducing stigma. The time is now, to practice what is being preached, if they are serious.