As we are getting near the end of this years World Alzheimer’s Month, I have been reflecting on what difference it has made to the lives of people living with dementia.
Perhaps though, parts of these campaigns are doing more harm than good?
Firstly, for much of the time and in most countries, this month #WAM2015 has continued to be ‘About us, without us’, which I see as a great failing on all of the advocacy organisations around the world.
Second, whilst the media and public continue to embrace the discourse of suffering and tragedy, they will continue to stigmatise us, as well as deepen the myths of dementia. This must stop.
Dementia language is a really negative aspect of the #WAM2015 campaigns, and because of it, they may do more harm than good as they really do offend, and they definitely keep the stigma and myths alive, rather than the opposite.
The offensive and disrespectful language still being used, in spite of the major efforts many of have made to change that, and in spite of many organisations now having official dementia language guidelines, yet little has changed. Some of these same organisations, also have staff who continue to call us sufferers publicly, and who it seems, do not insist the media refer to their own dementia language guidelines.
Yes, there has been a person with dementia here and there invited to speak at an event, and in the media, although more often supported by their care partners or with a CEO or manager from an organisation. Television interviews on September 21st, which was World Alzheimer’s Day, rarely were of people with dementia, but instead, carers, researchers or CEO’s.
One radio interview here in Adelaide last week, where I would have hoped the journalist had been prepared with the dementia language guidelines, asked the person with dementia if she minded being called a sufferer., to which she said no. That of course, is her right, but to have even been asked that question is completely unprofessional and offensive.
Regardless of if one or even ten thousand people with dementia don’t mind being called sufferers of dementia, there are too many of us who find it unacceptable and offensive now. If I were in a wheelchair due to being disabled, even if I did not mind being called a retard (some of my friends with disabilities jokingly call themselves retards), I and they, would not use that word publicly. Nor would anyone else.
The image I have added today, was circulated on Facebook recently, and I am sure Isabella and the person who shared the image, did not get into trouble for asking not to be called retarded. Let me be clear on this, I would never call anyone that, not privately, or publicly.
And yet, when I use that particular word, simply as an analogy for why it is NOT ok to call people with dementia sufferers, I get into deep trouble, and in fact as many of you know, I was bullied off of social media earlier this year. The experience of suffering is very much that of the people who are watching us change and die, but so often, that is not our overall experience, and to be labelled as sufferers is wrong, and continues to offend many with dementia.
Isabella is a beautiful person, she is not retarded.
People with dementia have names too; please do not label us as sufferers.