I am more than my ‘lived experience’ of dementia.
And I am much more than just a ‘Dementia Advocate’.
Many years ago, I started advocating for people with dementia who are invited speakers to be listed on the program by more then their disease.
Back then, not even the persons name was added. Occasionally, I still see this insulting and demeaning practice.
A younger friend of mine who knew of my activism on this, and who was employed at the time by an organisation who’d invited me to speak at a conference in Sydney, was working on the program. He was asked to list me by my name and then, only add ‘person with dementia’.
He knew I’d be a tad annoyed, so rang me for advice.
I recommended he put the draft program together with everyone’s name listed, but with no credentials for anyone, and then add Person with Dementia (PWD) or Person Without Dementia PWoD).
He, like me, has a good sense of humour and did just that.
The almost immediate – and quite incensed feedback he received was that it would be insulting to list the PWoD like that, although those same people didn’t question my lack of ‘credentials’, nor did they think it was insulting or an example of stigma.
Most people reading this blog also know I speak up for, or against many other things as well, including for them to be paid for their time and expertise as invited speakers, just like people without dementia are.
Apparently times are slowly changing – or so I’m told, although mostly by PWoD.
Yet, just a couple of weeks ago I discovered by chance I was listed as a speaker for a virtual event, only as a ‘dementia advocate’.
Nothing about my other current, or past roles, or my credentials.
So when you read or hear me ranting that things have not changed very much, if at all… Meaning that dementia advocacy has made very little difference, this is just one example of why I believe it to be the very painful reality.
It’s also a very hard pill for people who are new to the ‘game’ of advocacy to swallow.
Actions speak louder than words.
We need action.