Recently, an ill-informed and disrespectful journalist from the Australian Financial Review wrote an inflammatory and offensive article about people with dementia. It is also of some concern that the online site The Conversation seems complicit in such attitudes and behaviour. I have highlighted a letter to them from the President of Alzheimer’s Australia, and a couple of excellent blogs written by two colleagues, also friends of people with dementia. Both were key-note speakers at the recent ADI2015 conference in Perth.
Firstly, the offensive letter can be downloaded here AFR. As Co-chair of Dementia Alliance International, I sent the editor a letter, with no response. I then sent in a Letter to the Editor, for publication, with no response. A number of others have also sent letters, and has zero response. This is part of what I wrote, hoping to be published as a Letter to the Editor:
Your article is factually incorrect and morally reprehensible. It is also stigmatising, ageist, defamatory, discriminatory and insulting. To refer to any human being as feral takes us back to the dark ages in terms of respect for others. A public retraction and front page public apology is the bare minimum of your appropriate – and required – next steps.
Alzheimer’s Australia President, wrote this letter, which was published. Sadly, the title was as offensive, referring to people with dementia as sufferers…
Dr Allan Power, a leading psychiatrist and author in the USA, also a strong advocate for NOT prescribing antipsychotics to ‘manage behaviour’, wrote this excellent blog on the topic, Sins of Commission, Sins of Omission. Do follow the link to read the full article, but I felt this was important to add these following two quotes from his article:
Articles like this may represent extreme examples of ignorance and prejudice, but whenever we see them, we should ask ourselves two questions: (1) what are the more subtle forms of stigma and discrimination that permeate our society, and (2) what part do we play in creating such attitudes?
and his final paragraph was this;
Make no mistake about it—we have created the Christopher Jays of the world, and we continue to do so every day. As Michael Ignatieff once said, “There are few presumptions in human relations more dangerous than the idea that one knows what another human being needs better than they do themselves.”
Dr Siobhan O’Dwyer a young researcher from Queensland also wrote this excellent article on her blog Just people. Her final paragraph I thought was perfect;
People with dementia are not feral. They are not a menace to society. They are not mad, bad, or dangerous to know. They are just people. People who have worked jobs, raised children, loved, and been loved. People who are trying to keep their dignity and humanity as their brain (and the world) rips it away. People who need our support and our understanding. People.
Reblogged this on Living well with dementia.
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My God … what an apalling letter …. should NEVER have been published! I am new to your blog Kate, have recently subscribed to the Australian Journal of Dementia care which is where I have read and loved your articles and have completed 7 units in the Bachelor of Dementia Care from UTAS … have worked with people with dementia for the past 20 years. You are a brilliant advocate Kate!
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Hi Anne Marie, and thanks for joining the conversation here. Unlike The Conversation, and the AFR, both not ready to engage in such open debate on this matter, it is great to see so many people speaking up about how offensive the article was, and the response from the AFR’s EIC!
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I have worked with people with dementia for many years now and can honestly say that nearly all incidents os so called ‘behaviours’ are caused by staff lack of training, lack of understanding and lack of empathy!
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I worked in dementia care also, and agree with your comment: “so called ‘behaviours’ are caused by staff lack of training, lack of understanding and lack of empathy” completely!!
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I gave feedback via the AFR website. I got a reply today. Not very satisfactory. I will send to you Kate.
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it is the same stock standard reply that has been sent to everyone!
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Reblogged this on Fran's World of Wonder.
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Appalled, Cannot believe that this article got published. A retraction should definately be sought. Those sorts of attitudes belong on the 19th century. As one of the previous writers said, it goes against all basic human rights.
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agreed! 1100%
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Read all the links. What an unfortunate if not ignorant, unthinking, disrespectful,mean attitude. Yes there are some people with dementia that may have responsive behaviors that are difficult to handle and cause a danger to themselves and others … but what group of any sort doesn’t? We do not automatically drug them into a stupor! Perhaps the difference is that these people cannot advocate for themselves! They need a voice like yours, Kate, to keep the conversation going when they do not have the language for themselves. Thank you. I join your fight.
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Thanks MICHAEL… onwards and upwards, in spite of the ignorant and offensive people like Mr Jay.
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I’m speechless. I can’t believe a newspaper of “esteem” like The Financial Review could publish such a derogatory article. I’m glad that they’ve been reprimanded.
I wonder whether 60 Minutes or Sunday Night would like to know about this?
OIh – I just thought of something …….. Kate – please please follow up on this ……. email this blog post of yours, a copy of the article, the emails to the newspaper etc to “Media Watch” …… they might just like to expose the newspaper for saying such attrocious things. How dare they. Know what I mean? A major newspaper saying something like this is big news ……. Try “Media Watch” please ……. 🙂
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Thanks for the tip… I have emailed MediaWatch now, and hope they highlight this disgraceful occurrence, and such blatant ignorance.
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Shame on them. Can I repost this blog Kate? Let’s hope people boycott the paper.
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Hi John, Please do re-blog… the further it gets out there, the better. I have just emailed Media Watch as well, as suggested by one of my readers in a comment here. xx
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Kate, I think it was my partner Glenys who suggested to contact Media Watch as well as the Media Complaints Board. She couldn’t recall the proper name of the board, but has seen an advert on TV that something exists. She was the one who alerted me to the whole situation. I’ll re post onto my blog. Look after yourself.
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I’ve already been onto Media Watch, and they are interested in pursuing the story!!
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I just realised that Glenys’ comments were on the DAI Facebook page that had a link to your blog.☺️
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oh, some comment appeared here as well, I have just accepted it! 🙂
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Posted, Kate😎
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Thanks John x
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Strikingly Graeme Samuel doesn’t use the word ‘sufferers’ once in his excellent reply – and hence it appears in the title which the newspaper has transplanted on the piece. This opens a window onto the uphill battle one is facing with the mainstream media – messages get distorted, and narratives get skewed. We all need to be very vigilant on this, as people who you’d hope are the allies are very much part of the problem. Only this morning, I had to pick up a ‘thought leader’ in medicine (who shall remain unidentifiable) on his use of the word ‘demented’. With friends like this…
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You are right… it is, of course, the media yet agin determined to offend us as much as calling us ‘retards’! We must ALL remain vigilant… the uphill battle continues, exacerbated still by so many, who shold know better!
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Hi Kate, I am not surprised to find you having this issue with The Conversation. As you know I have a few issues of my own with global warming hysteria and I have found the The Conversation to be in the vanguard of that movement, promoting all sorts of unscientific eco-nonsense. Your experience is not surprising given their intolerance to other people’s ideas and makes a mockery of its name. I cancelled my subscription a year ago. Keep up the good work! Best wishes, Steve
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Thanks Steve… I will be cancelling my subscription to The Conversation now as well! What an offensive lot, them, and the AFR journalists and editors!!!
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Well written Kate. Obviously by not responding to all of the complaints must mean they are guilty as charged.
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Indeed, they are guilty as charged! It is a disgrace, and their lack of professionalism by not responding makes them worse than we originally thought.
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Kate – I feel oppressed by Christopher Jay’s disgusting article in AFR. Obviously a triple A “Intellectual Supremacist” who should stick to his profession as an economic journalist. Stigma lives in the media in the worst possible way given the AFR’s lack of response and the Press Council’s lack of moral judgement. I do hope Graeme Samuel receives an apology. Paul
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AGREE… AGREE… AGREE… and I hope as Chair of DAI, we also receive an apology!
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Thanks for your reply Kate. Clearly the AFR, and perhaps the media in general, are not aware of the UN Convention on the Rights of Persons with Disabilities, to which Australia is a signatory. Link to http://www.un.org/disabilities/convention/conventionfull.shtml
Note the following sub-clauses:
Clause e. Recognizing that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.
Clause h. Recognizing also that discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person.
Clause j. Recognizing the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support.
I would hope that, on these three clauses alone, Graeme Samuels would be justified in raising a complaint to the Australian Human Rights Commision. Paul
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Thanks for reminding me of this Paul… and of course, the same UN Convention on the Rights of Persons with Disabilities, which people with dementia also come under! I shall remind Mr Samuel, and others of this.
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Hi Kate what can I say I am flabbergasted. If these people were in charge as soon as we got our diagnosis they would do what the Germans did during the war. Thank God they are in the minority. There is a saying what goes round comes round. He might not be calling us like that if one of his family had dementia. I do not see myself as feral. I might be wildly passionate about getting better care and support for people with dementia but feral no.
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Hi Lesley… we are NOT feral, nor is anyone with severe BPSD, they have a terminal disease, and often, being treated in ways that do not support their disabilities or communication difficulties.
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I have read the Australian Financial Review Article that Kate Swaffer is referring to. I am appalled at the Article written by Christopher Jay. To be using words such as “feral dementia patients” and “mad, bad and dangerous to know” is reprehensible, to say the least. This man could never have been touched by dementia. My husband was 55 when diagnosed with Alzheimer’s disease. I cared for him for 10 years with this terminal disease, which has no cure. Whatever this disease did to his brain, my husband was NEVER feral, mad, bad or dangerous!!! He was the love of my life, not only to me, but also to his children and grand-children. I feel a public retraction and front page public apology is definitely in order especially to all the families living with dementia. Jenny Potter
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As you say Jenny… he had better hope he does not get dementia, or there may be some people who will treat him EXACTLY as he thinks people with dementia are!
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…Dear Kate,……yes,with rubbish like that being peddled by the Australian Financial Review, one would not want to take their financial comments/advice too seriously….don’t they do any research ???……………… ……..Tony Hogben…….another Dementia “sufferer”.
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Totally agree Tony… as you say, such RUBBISH!!!
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