During the recent ADI2014 conference, it was apparent the language being used by researchers and other presenters to refer to people with dementia is still very derogatory, stigmatising and discriminatory.
Now really, do any of these people look like they are suffering, or like they are victims?! It looks more to me like we are meaningfully engaged, in the real world, and having fun. I know this to be true, because of course, I was there!
People with dementia are learning to live well with dementia, and one of the goals of Dementia Alliance International is to give a voice to, and to empower others with dementia, to live well to. We will publish articles on many of the issues we are facing, written by people with dementia, rather than by those without dementia, who choose to write or speak “about us,without us”.
It is no longer appropriate for this to happen, and a brilliant blog written by one of our co-founders and Board members, John Sandblom yesterday speaks about this too. John wrote: “We are just changing in ways the rest of you aren’t, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us!”
I hope we reach our goals and dreams before we all die, but it is important to live as well as we can until then, and as Richard Taylor rightly says, “we are going to die most likely because of dementia but guess what, all the rest of you are going to die too”.
Live every day as if it is your last, just in case it is…
I also often say;”being diagnosed with dementia is not as much fun as your birthday party, but there is no reason to die now”.