No, I am not just over-tired or feeling a bit burnt out, but I am getting very annoyed at having to continually ask why, yet another group organising an event has published a list of speakers (yes, again), the topic of Consumer Directed Care, and yet, did not bother to invite a speaker with dementia, the very cohort who uses the services. The stock standard answer came back (yes, again) when I questioned it, that no-one was referred to them, and they couldn’t find one.
Really, with a new diagnosis every 3.2 seconds globally, and more than 353,800 people living with dementia in Australia, and people without dementia are still using that as an excuse…
We may have dementia, but trust me, we are not that stupid.
Most of you know, I am definitely not a quitter, and I have incredible determination and ‘stick-ability’ for most things, especially the really tough ones. But, today, I feel beaten… I have resigned from many things already this year, due to needing my time back, but am about to resign from 99% of all advocacy outside of Dementia Alliance International. It seems to me, the only people who do not discriminate, and show no stigma towards people with dementia, are other people with dementia. We will continue to work towards accessing our rights in the United Nations Conventions of the Rights of Persons with Disabilities (CRPD), and our most basic of Human Rights.
I do know that many people mean well, and say the right words, but it is the ACTIONS of those (often the very same people) without dementia that speak the loudest.
Henceforth I will be campaigning that no person with dementia ever accepts an invitation to present or participate, if it is a ‘late invitation’, or an invitation where someone has had to ask for people with dementia to be included, and not one that has come at the same time as all the other speakers. Not to do so, is simply rude, and highly offensive.
Wendy Mitchell from the UK recently experienced how patronising and rude people can be, and even though she was on the program, on the day she was left off for the second presentation she had been asked, and advertised to give. She has been apologised to, but this is totally unacceptable.
The passive stigma, in many of the very organisations who say they ‘care’ for us, is quite obviously, rife…