Change is almost always difficult for people, and the wave of change via the voices of people with dementia is quickly growing. In fact, getting dementia might mean we are lucky, as we are getting used to change now, as it is happening inside our brains and bodies every single day. On top of that, we have no choice. So my advice to others, is to prepare your psyche for change, because it is definitely on the way.
People with dementia want to work with you, but, only in equal collaboration; we have a basic human right to be included and heard, and for others to stop excluding us or discriminating against us. We do not wish to work against you, but if others don’t start fully including us, we will have not choice. In a follow up email to some people with dementia who are part of a Dementia Working Group whom I had met with online recently, I wrote:
The stronger the global voice gets, and the more all the Dementia Working Groups and DAI collaborate and communicate, the harder it will be for others to ignore us. Oh gosh, won’t that be fun… they can’t just ignore us!
Joining Dementia Alliance International does not weaken any national or local Dementia Working Groups, it strengthens them. Why, you may wonder? Well, it is because working at the global level gives us information and relationships that most Dementia Working Groups do not have, as well as access to a lot of strategies and global policies you may not know about, not only that we can share, but that can help them. DAI is also not a threat to any of the Alzheimer’s advocacy organisations; instead, in partnership through equal collaboration, together we can help many more people. In fact, the collaboration between DAI and ADI has proven how beneficial it is for everyone.
It might simply be better to embrace change than to fight it… it is a battle you almost never win.
It onward and upwards, alongside the increasing disAbilities, the occasional and increasing fog, and in spite of those who do not want us to succeed or to have a truly authentic and equal voice…