As has been common over my whole life, my views often do not reflect the majority. This is especially so in a number of areas related to dementia, and unfortunately, in this space, including amongst self-advocates, and it is sometimes uncomfortable for us all.

Having a different view, a differing opinion or a different belief to the majority about anything, especially those in your own ‘tribe’ or community, can cause challenges in terms of communciations, but especially impacts equal inclusion.

Historically, differences in beliefs are what cause most wars.

So, having a different opinion about the dementia friendly communities, and other dementia friends initiatives, as well as dementia villages than most others (that is, others willing to be public about their beliefs on this particular topic), has made me more curious about hhumanity, and has caused me a small amount of angst. More importantly it has resulted in my active exclusion at meetings or events focused on these initiatives (the same things has happend on the topic of BPSD).

This has increased the sense of otherness, and isolation, and it’s definitely not easy feeling like you are walking alone, and knowing you are being actively excluded.

Advocacy is meant to be just that, but it seems, dementia advocacy has to be aligned to the goals of the wealthy and powerful charities, or the researchers or other experts, for us to be equally and fairly included or consulted.

“What happens is of little significance compared with the stories we tell ourselves about what happens.”

Charities and their staffs, even many researchers and other experts in the field , and even self-advocates appear to be much more focused on what their legacies are, on being in the spotlight or their invitations to the podiums, than on truth telling. It is time we all ditched our egos too… My focus will continue to be based on tuth telling, and actions for real change.