This article was exactly what I needed to read a few weeks ago, especially after feeling such angst, despair and frustration about people without dementia, continuing to exclude the group I represent. The phrase, Nothing about us, without us (apart from helping to get funding applications approved – where we are more often still the tick box of inclusion)” is still so far from a reality it can become disheartening.
Full engagement and proper inclusion, of people with dementia, in all things, is simply not happening. This is in part, why we have headed to the UN CRPD to use it as a tool to enforce the much needed change, and also why Dementia Alliance International (DAI) will never be run by people without dementia, no matter how hard it is for us to run it ourselves, and no matter how many people set up in competition or opposition, or misuse our data base or infiltrate the members of our Facebook or other groups to gain access to people with dementia.
DAI is fast becoming so much more than an Advocacy and Support group; of, by and for people with dementia, it has become a growing movement for social change for people with dementia, and we have barely started.