Over the years, it has come to my attention that others speak about me as one of the #DementiaLanguagePolice. There are many of us around the world, and we constantly have to put up with being labelled sufferers of dementia, even when most of the time, we are more often suffering because of this label, and the poor care, or no care received after our diagnosis. We also suffer due to those who accuse us of lying, or who persist in saying “But you don’t look like you have dementia.”
A recent article in the Huffington Post was the third example of being collectively labelled as sufferers in as many days! When will people without dementia start respecting people living with dementia? I can’t speak for others with dementia on this one, but feel free to call me retarded if you wish, as personally, that offends me far less than being labelled a dementia sufferer. Many of the advocacy organisations also advocate for this change, and many have Dementia language guidelines, but still, too often those in the media refuse to change…
Chris Roberts has said publicly at a conference I attended some years ago; ‘I may suffer some of the time, but do not label me a sufferer.’ Many have spoken about how offensive this is, long before I became a dementia activist. Helga Rohra speaks about it, as does Keith Oliver, Christine Bryden, Wendy Mitchell, Mick Carmody, Brian Le Blanc and SO MANY OTHERS… The late Peter Ashleigh and Dr Richard Taylor also spoke strongly on this topic.
Disrespectful language contributes significantly to the stigma, discrimination and isolation we continue to experience, and this is supported not only with vast amounts of anecdotal and anthropological evidence, but also with a significant amount of evidence based research.
Please… the time is now for respectful language.
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Thank you for sharing xx
‘Respite’ is a word that I’m not happy with as it implies getting away from something that is dreadful!
That’s why I suggested BnB, and others have suggested a retreat xx
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Thanks for sharing Kate
My dear friend Kate,
If you are the #dementia language police, well then I am your faithful side kick, because as you know I have been very vocal about how I see this type of labeling, and how distasteful I also find it.
I continue to challenge the obvious fact that the cognitively aware world creates the suffering for people who live with dementia, because it of its limited mindset, and hypocritical outlook.
Who wrote this appalling rule book?
I hope that somehow those of us that use common sense, make up for those with none.
Subjective terminology such as assuming a person “suffers” or “loses oneself” or is a “victim” or “afflicted” are terms that are demeaning & derogatory, immediately providing a dehumanising attitude based on “our” personal views.
What I believe is, it is we who are the catalysts to creating the stigma attached to this condition, and the fault lays with us for generating this attitude. For all it does is increase the pressure and strain on the person living with dementia.
Am with you all the way……………..
Love and hugs.xxx
Always great to have such a beautiful side kick darling Leah! xx
Love, smiles and a super smooch.xx
XOXOX
well said
Thanks!
Demeaning titles also add to the stigma, i.e. “sweetie” or “honey” . We have dementia, but we are not children!
Oh yes, that annoys me too! ‘Dear’ and ‘luv’ drive me nuts too!
Here here Kate! Can I please have your permission to publish this blog on the Daughterly Care website with a link to your website/blog. The wider your message spreads the better. Kate Lambert
Go for it Kate!
Thank you Kate
Reblogged this on petermittler and commented:
Mental Retardation as a diagnosis but also as a description were replaced by intellectual disability because the people concerned objected
That is exactly my point… if it’s not ok to use the ‘R’ word, it’s not ok to publicly label us all as ‘sufferers’