For the last year or so, have also been actively asking people without dementia, to take action as well.
For example, I have been asking that when they get invited to be key-note speakers, or receive invitations to join Committees or groups to work on things like steering committees or White papers on dementia, to make sure they insist we are included.
So far, I don’t know of anyone who has done this actively, at least, not to the point where they refuse their own invitation, if people with dementia are not invited to be speakers or part of a group or committee, which is what I have actually been asking some to do more recently.
I’ve talked about it here before now, and on other online forums, but suspect I just piss off those people who are always being invited, even when we are not, but who do nothing about it. Speaking up for us is fine, but doing nothing about it is not actually ok.
Words are obviously not sufficient. We need ACTION. And not just by people with dementia, but by people without dementia, to ensure the right thing is being done, and we are INCLUDED.
The screen shot here today is of a comment on Facebook made by a friend of mine, with my comment below, and is exactly what I mean; she has just said it so much better than I have ever been able to. Thanks Alex!
The ‘nothing about us without us‘ slogan needs to stop being just a slogan.
It needs to be put into real ACTION.
Employing us, including us, and even refusing speaker or other invitations if we are not included at the same time as people with dementia, I really believe must start to happen, for things to ever change.