As the editor of an international advocacy and support group, of by and for people with dementia, I read or am referred to many articles in the media about dementia. Most of them require a comment from people living with dementia, in order to either re-claim our human rights, to request the same respect offered to everyone else in the community, or to complain about either the misconceptions and myths the articles portray, due to the ignorance of those without dementia, or the biases and prejudices of a few.
The media feels like a an ugly place to be these days, as we are regularly being referred to as sufferers, victims, demented, not all there, fading away, or in this disgraceful instance, we have dementia as a form of punishment for our sins. Read this article, by a radical and obviously extremely prejudiced woman named Suzanne Atanus, a Republican candidate for U.S. House of Representatives in Illinois, who claims autism and dementia are God’s punishment for abortion and LGBT rights; GOP candidate claims autism and dementia are God’s punishment. It is outrageous!
A few months ago a journalist called Rose George balked at being told I found the use of the term sufferer offensive; she used it in the title of an article she wrote for The Guardian, also partly about her personal story of supporting her own mother who had dementia. After a number of tweets about being offended by the public use of this term, she ultimately tweeted back that I had no right to ask for it to not be used. Once I referred her to the International Dementia Language Guidelines, she would not engage with me. Some people with dementia do not mind being referred to as sufferers, but many of us find it not only offensive, but de-meaning, de-valuing and disrespectful, and we do have a right to for it not to be used publicly.
We believe that if it is in the public domain, and a group of people find a word, words or terms offensive, then we do have the right to ask others to stop using it, in the same way we - and they - would NEVER refer to someone with an intellectual or physical disability as a retard or retarded any more. Not because they are not retarded, as technically they are, but because this group find its offensive. I often call myself retarded to make a point, and people are horrified I would refer to myself that way, and often, these same people are often aggressive in their right to offend me and other people living with dementia by calling us demented or sufferers.
Joseph Curl wrote on Sunday, July 20, 2014, CURL: The politics of death and dying, for The Washington Times. It is obvious he is sharing his personal story and very raw emotions of his mother's dementia, but it portrayed people living with dementia as ALL deficient, all 'suffering', all incapable of living any sort of a good life, and all completely unable to make decisions for themselves. In no way did it allude to the millions of people living well with dementia, who are still positive and leadinging meaningful and engaged lives, many of them in the community, still achieveing remarkable things.
This author's personal perspectives and wording were then carried over to another article in the examiner.com Dementia: Drudge Report editor foresees death politics on the horizon that compounded the negatives, the errors, the stereotype that then increased the potential for prolonged stigma. Of course, if a journalist is expressing personal opinions, they or the editor may not think it relevant to consider the international dementia language guidelines. I still say, if they would not use the word retarded, they should also not use the word sufferer, in the public domain.
I have written extensively a number of times about language and dementia, including saying this; “Does ‘I am suffering from… dementia, arthritis, cancer, MS etc’ sound more negative and less empowering than ‘I am diagnosed with…’? Whilst the term suffering may technically be ‘correct’, I cannot see how anyone could not see it is not negative and disempowering.”
In article The cheating language of equality, he wrote when referring to me, "Like so many others she [Kate] believes that you can change the world by changing language, a fallacy that is everywhere hobbling radical movements. If accuracy is sacrificed, they say, if basic descriptions such as “mentally ill” and “sufferer” are forbidden, if readers and listeners get lost and woolliness is held up as a model to writers and speakers, so be it. Waffle will lead us to a better future." Waffle may not lead us to a better future, but I and we have the right to say if something offends us.
In another blog on Language, dementia and respect I referred to an MP in Adelaide, Kelly Vincent, who campains extensively in the disAbility sector, and is the political leader of Dignity4Disability. She says; “The way we ‘label’ or talk about clients can say a lot about what we think about them” . The C-word campaign is about person centred care and respectful communication, and about the rights of people in a specific sectors – e.g. disAbility, aged care, or dementia, and for them to have a say about what is appropriate language. Dignity4Disability's C-Word Campaign has these principles as a philosophy. These principles apply equally to people with dementia.
We [people with dementia] are not, "not all there", we are still here, and we still have feelings and opinions and rights. Some of us may suffer from dementia or other diseases some of the time, but that does not necessarily make us sufferers.
Sadly, I could have referred to literally hundreds of articles that devalue and disrespect us; this is where continued advocacy and communications from people with dementia becomes really important. We must keep sending out our messages, subtle or not so subtle, depending on the receptiveness of the people, person or organisation we are trying to educate. We must be alert for the opportunities to correct, to educate, and to change perspectives. This may not be done overnight, but we must keep trying to improve the awareness and reality of dementia, including the good, not just the bad, and to stand up for our basic rights.
The media spoon feeds the public, and has a responsibility to feed it the truth, with respect for all of those it portrays.
This includes people with dementia.
If people are publishing anything, or speaking in a public forum, it is imperative they refer to the international dementia language guidelines, which will be added to our site in the near future.
For now, I have added Alzheimer's Disease International's guidelines for the preferred terms for their conference speakers, next to the terms they advise submitters not to use when referring to a person with dementia or their family/friend support person:
Dementia/a form or type of dementia/symptoms of dementia - NOT - Dementing illness, Demented, Affliction, Senile dementia, Senility
Younger onset dementia – NOT - Early onset dementia when referring to someone under the age of 65
Person living with dementia, diagnosed with dementia – NOT – Sufferer, Suffering, Sufferers, Demented sufferers, Vacant dement, Victim, Demented person, Patient, Subject, Case
Family member/s or person supporting someone living with dementia, Wife/husband, child, friend – SUGGESTED - Care partner
Disabling, challenging, life changing, stressful – NOT - Hopeless, Unbearable, Impossible, Tragic, Devastating, Painful, Distressing, Fading away, Empty shell, Not all there, Disappearing, Stealing them away (they are always still there), The longest goodbye
Impact/effect of supporting someone with dementia – NOT - Carer burden, Burden of caring
BPSD, changed behaviour, challenging or difficult communication – NOT – aggressive, wanderer, poor feeder, wetter or incontinent, obstructive, non–communicator, attention-seekers, non-communicators, obstructive, etc.
Editor: Kate Swaffer
Copyright: Dementia Alliance International 2014