It is often still about us, without us

My continuing concern about advocacy having made so little difference, continues.

Last year, an ‘online colleague’ of mine sent me the following message:

Have you been approached to contribute to the project on creating guidelines for the use of psychotropics in aged care? I think that your insight and the insight of DAI members is crucial. I feel that these guidelines NEED your perspective on language and labelling and could be a positive move forward for how Australia sees and talks about these issues.

I replied: Of course NOT Xxxxxx… if you can ensure that I am, I would appreciate it greatly. Thank you so much for highlighting it too, I really appreciate it.

Not surprisingly, I was not invited to be part of this group or initiative, even though I have a significant, and a publicly known interest in it.

Recently, this colleague had reason to connect with me abpout something else, and after discussing the current request, I asked if she had recommended I be invited to join the group reviewing the use of antipsychotics.

She replied with:

And worse, I was not included, even though I was at the time, the Chair and CEO of Dementia Alliance International, the global voice of people with dementia.

I brought consumer involvement up with the dude doing the psychotropic guidelines and someone working for Dementia Australia said that they are the reps of people with dementia…

The active exclusion of people with dementia, at so many of the tables about them, continues, and as this confirms, is little better than it was 30+ years ago.

Even when there is inclusion, it usually means only if you agree with the multiple ‘them’.

Sadly, disturbingly, distressingly… there still is a lot ‘about us, without us’, in spite of the new age ‘we value advocates’ rhetoric.


2 thoughts on “It is often still about us, without us

  1. Nothing much changes dear Kate. I was doing some government work a few years ago & joined an advisory group as a former family care partner to represent ours (NOT everyone’s) experiences as a family. An employee of a major charity was also on the group and at one of the first meetings claimed my presence wasn’t needed as they represented ALL people living with dementia and their families. You can imagine my reply!


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