The road of advocacy and self advocacy is a really tough one, especially as most often, to have become an advocate, you must have become part of a marginalised group that is being discriminated against, or speaking out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing someone thinks they are not doing things well, or perhaps the change wanted, does not fit their own agenda or business plan.
As the life of Dementia Alliance International (DAI) continues to grow, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems at least to me to be the most productive way to be an advocate. We must all speak up for our basic human rights to not only a voice, but to full inclusion on the things that impact OUR lives.
Along the way, DAI is also providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well. Alzheimer’s Disease International is really listening to us now, and we have collaborated with them and in the process, become the peak body for people with dementia in the world. This has been followed by The Alzheimer’s Society UK, who we are engaged in currently with talks about supporting each others work.
These are indeed, exciting times…
We now all need our own state and country advocacy organisations to come on board, to do the same, and to really listen to us… as together, we improve the lives of people with dementia and our families.
It is also time for all of our supporters to speak up for us, and the recent disgraceful piece of ‘journalism’ (not that I would call it that!) by the Australia Financial Review has brought a lot of voices to the table, people with and people without dementia. We now also need people without dementia, to start speaking up for our proper and full inclusion. If they don’t, they are complicit in contributing to the stigma, discrimination and isolation we experience.
It is no longer acceptable to continue to do anything, about us, without us.
One person with dementia, is never, not ever, enough.