The SBS program I was involved in titled Dancing with Dementia which was filmed in their studio a few months ago now, and has been to air I feel was invaluable as a changing point to the discourse of tragedy that continues in the media.
Their goal was to show a more balanced view of dementia, that is, that there are many of us living better with dementia than most people expect, and it is possible to live meaningful and productive lives at least until the end stages of dementia. I think they achieved that.
Many of us are simply refusing to be treated like non human beings, and more importantly, absolutely refusing to give up living, refusing to ‘die up diagnosis’ and be locked away.
And surprisingly, playing Bingo is not in most people’s suite of meaningfully engaging or purposeful activities…
Some of us have become poets, some artists. Some writers and authors. A few of us are even studying at university or doing other courses, and NO, they have NOT DUMBED THEM DOWN for us. Some are advocating and speaking out, at events and forums where people without dementia are actually, almost unbelievably, starting to listen. One day, we will even see dementia care change for the better, and good care will become the norm, not the exception.
We are refusing to be patronised, excluded, or used in tokenistic ways that simply allow advocacy or other organisations to tick a box in their paper work to state they have included us, which is often a funding requirement.
One or two people with dementia on any committee, working group or conference program, is quite simply, not enough. But, zero is intolerable.
And, it is time we were respected and valued enough to be paid for our expertise.
Perhaps though, society will need to legislate for changes in the same way we had to for Aboriginal Australians, and those people living with other disAbilities, and as women have had to for many years (sadly, these groups still have to), for any sense of real equality. Quite simply, it seems, employers and advocacy organisations might have to be forced to employ a certain number of us. Governments might have to legislate for this, and force employers to employ us.
Talk is cheap.
So often, the carrot and all he good will in the world, will not get people to do the right thing, or to change. Positive action usually has to be forced. Sadly, the carrot does not work as well as the stick.
As mentioned previously, I have been discriminated against with Board nominations, and openly denied a place on a Board ONLY because of my disabilities. This is blatant discrimination.and perhaps I should have taken legal action, but the end result may have been more of a loss than a win for people with dementia, so I did not.
The challenges we face, including within the dementia advocacy organisations, is that their vision and mission statements usually claim that people with dementia are at the centre of their work, and yet, so few of us are fully included. There is a significant amount of passive (sometimes even assertive) stigma against our inclusion, and our abilities to contribute.
Mr Graeme Samuel, the current President of Alzheimer’s Australia stated very clearly at the SBS filming of Insight, of which he and his brother were two of the people being interviewed as family carers of their mother, that it was impossible to tell by looking at or listening to those of us out the front with dementia sitting with our family carers, who actually had the diagnosis of dementia.
Graeme also stated people with dementia still have a lot to contribute to society, and should be not only allowed to, but encouraged to do so.
Hopefully all organisations will take Mr Samuel more seriously, and start employing people with dementia in the same way people with other disabilities are now employed. It is after all, our basic human right.
Not to, simply keeps feeding the discrimination, stigma, isolation and myths of dementia.