The ongoing AFR debacle…

Many people who complained about the offensive article “Dementia Troublemakers” published in the Australian Financial Review (AFR) (@FinancialReview) have received a standard reply from the Australian Financial Review i the last 24 hours, of which I am also a recipient. See their response below added as a screen shot from the DAI gmail account, and afterwards, my reply.

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Dear Michael,

Thank you for your letter, which, it seems, is a standard reply you have sent to everyone who has complained, as I have received about 10 copies of it from others already! Hardly personal, or professional.

May I first refer you to the Alzheimer’s Australia dementia language guidelines. It is extremely offensive, and very outdated, to refer to people with dementia as sufferers. In fact, it is as disrespectful as calling us retards. So, for future stories about dementia, or communications about matters such as this, I would kindly ask you to refer to them. They can be found on the Alzheimer’s  Australia website.

If, as you say, Mr Jay is a very senior correspondent, then I feel, it is even less excusable that he has referred to PEOPLE as feral, as mad and bad, or as trouble makers. There is NO sub class of patient who is any of these things.

If you or he knew anything about dementia, you would know this is inaccurate.

It has also put advocacy efforts back almost twenty years, and you and Mr Jay remain ignorant of respect for human beings, if you continue to insist this article is appropriate.

I’m sure you are aware of the UN Convention on the Rights of Persons with Disabilities, to which Australia is a signatory – http://www.un.org/disabilities/convention/conventionfull.shtml

Note the following sub-clauses:

Clause e. Recognising 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. Recognising 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. Recognising 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, you can see I am justified in further raising a complaint to the AFR.

The article may have meant well, but it remains that it is highly disrespectful and offensive to people with dementia. It is ageist, defamatory, and requires a public apology.

Yours sincerely,

Kate

Kate Swaffer
(phone number included)
Chair, Dementia Alliance International
Chair, Alzheimer’s Australia Dementia Advisory Group
Co-chair, Alzheimer’s Australia Consumer’s Dementia Research Network

30 thoughts on “The ongoing AFR debacle…

  1. I didn”t read the AFR article, but its clear it’s time for him to retire and the senior editors of the AFR to do their job properly. This just epitomes everything that is wrong with the mainstream medical facilities and their commentators. More education and training is needed all round. Thanks Kate

  2. What a wonderful reply you’ve written, Kate.

    What astounds me the most is that a man who is OVER 70 years of age was the author of such an article. I would have thought it someone in their 20’s with little life experience. But surely someone of his age should have seen enough of life, of suffering and of respect etc to know how to behave. It could have been HIM there in the nursing home …. would he like to be personally described like he described them? I bet he wouldn’t!!

    Thanks for all your effort ……

  3. Well said Kate. I didn’t see the article, but I’m glad that you’ve made this public. I agree, years of hard work by many has been dismissed at the whim of the journalist. I’m glad that you addressed the issue of using the offensive word, “sufferers”.

    • OMG, if journalists don’t stop using the terms ‘dementia sufferer’ or ‘suffering from dementia’ soon, I am going to publicly call myself a retard until someone starts to get it… infuriating. It is tiresome how people without dementia, decide what is and isn’t respectful language, and then get all angry and bully me, when I use the analogy of retard/retarded, as they find it offensive!!!

      And regarding the AFR, the journalist, and the EIC’s response… I will keep asking for an apology and public retraction. Thanks for your support. WE must stand united on this, those of us like you and me, who are diagnosed with dementia, and the many others without dementia, who fully believe in what we are doing.

      • Hope you get that apology & retraction.

        Effectively you’ve been told by the Editor that the article is appropriate:
        1) the journalist is experienced; &
        2) a govt (SWAT team) tender document informed the article.

        In short: “What would you know?”
        The AFR Editor has added insult to injury, Kate.

      • haha, not likely. A colleague of mine, Professor Wendy Moyle had her letter to the Editor published today, BUT, they removed the part where she quoted me!!!

      • Kate, thank you for sharing the reply. I do not see it as an apology at all and totally support a public retraction. As you know from the final 12 months of Ralph’s life, this editorial is about my husband/father/grand-father, but he should never, ever be spoken about as “feral, mad, bad, dangerous, or of extreme behaviour”. I feel so strongly that this, “very senior correspondent” and the “Editor in Chief”, are such arrogant and ignorant people. Why don’t they try to do something good with this publicity to promote awareness, understanding and advocate for education and training in dementia and dignity in care. Why don’t they advocate for cuts in funding NOT to be made to services that are critical for dementia care, especially with numbers increasing to the point that they can’t be kept up with, for this terminal disease with no cure!!!! Keep up the fight, I am always walking alongside of you. Jenny xx

      • It’s a horrible ‘fight’ to need to have, but together, hopefully we CAN improve things for people with dementia and their families dear Jenny xxx

      • Kate, Is there anything else that we can do? Will Alzheimer’s Australia release a media release about the language issues?…..even if it doesn’t attack the AFR itself, but to just get other media onboard as a response. At least they printed Graeme Samuel’s letter. You realise that you are too intelligent for them. They don’t know how to deal with an intelligent person with a diagnosis of Dementia. That paradigm is beyond their thinking and perception of Dementia.

      • Perhaps we need to ask Alz Australia to do a ‘media blitz’ on language, as well as other things – I’ll talk to you about it when I get home!

  4. I am horrified at generalisations and obvious ignorance of human conditions when patients in care facilities or neurologically impaired patients are discussed. I cared for my late mother with brain damage from a severe stroke while she was in recovery, my stepdaughter was in a care facility for mental impairment due to lack of oxygen at birth and my sister still cares for her husband with Alzheimers at home without much assistance. I have great respect for people who have such difficult duties to perform. Maturity of judgement and a positive attitude is always needed. Sadly our care facilities do employ people without these qualities, due to a lack of suitable candidates for these crucial and downgraded carer positions. The recognition of human dignity in care facilities is a top priority. I also have knowledge of what happens in “mental hospitals” in South Africa. The range of patient and mental ability is extremely broad, but a common defining value should be that even those with severe impairment of interaction really benefit greatly from individualised care and understanding. I think that the terms used in Mr Jay’s article hearkened back to a time when ignorance was at such a level that human beings were treated as so much detritus and murdered in gas ovens. Even today I find myself incensed when I hear that such individuals are “better off dead”. Such callous dismissal is surely only a sign that our society is backward and that a lot more media education is needed.

    • As you perfectly said; “Such callous dismissal is surely only a sign that our society is backward and that a lot more media education is needed.” I have been debating with media for many years on respectful language when referring to PEOPLE with dementia, and that message is still not getting through either… and with journalist like Mr Jay, and an EIC who refuses to do anything other than blame and excuse himself, we really do have a long way to go still. I watched the movie Selma recently, and was in awe of Dr Martin Luther King Jr… and wondered if WE (People with dementia) will ever achieve anything at all!!

  5. Excellent and well stated response Kate. I’ll be sharing this on Facebook. I’m not surprised that Stutchbury’s response was so impossibly incompetent in its bumbling, stumbling, truly unapologetic way; most people just don’t get it. But, that an Editor of a prestigious national newspaper should be so embarrassingly uninformed and misinformed is, quite frankly, disgraceful. Stutchbury’s implied assertion that one older person can have a go at people living with dementia because, after all, it’s an ‘elderly’ person’s malady shows just how far up his bum his head is buried. This standard response only digs a deeper hole. I’d also like to point out that Stutchbury is a cowardly blame shifter – there was a time when the Editor in Chief of a newspaper would allow the buck to stop at the boss’s desk – no longer the case obviously – just blame the old fart – he must have got carried away with his ink pot and quill; poor old chap. That was no apology; it was an irrational rationalisation and the AFR’s EIC has got a lot to learn.

  6. Well said Kate – glad you reminded them of their total ignorance of the UN Convention on the Rights of Persons with Disabilities. To suggest that Mr Jay’s age entitles him to respect for his views, (meaning you should lay off criticism of a “senior journalist”), just adds insult to injury. I am 82 and because my wife is in the late stage of Alzheimer’s disease I am very much aware of the effects of social stigma. Thank you for your advocacy on this issue – Paul

    • I totally agree with you on this Paul: “To suggest that Mr Jay’s age entitles him to respect for his views, (meaning you should lay off criticism of a “senior journalist”), just adds insult to injury.”

      How dare they indeed!

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