Awareness campaigns can do harm #DAM2015 Day 28

Image via Facebook

Image via Facebook

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.

9 thoughts on “Awareness campaigns can do harm #DAM2015 Day 28

  1. Pingback: The final day of Dementia Awareness Month, #DAM2015 Day 30 | Creating life with words: Inspiration, love and truth

  2. Kate, Veda was filmed in an interview today, most respectfully and sensitively.
    I noticed that the interviewer referred to people “suffering from dementia” in the same sentence as people “suffering from cancer” but at no time did he call PWD “sufferers” or “victims”.
    There’s a world of difference.
    Veda was proud to be asked about “coming out”.
    Don’t give up on the language campaign. xx

    • I understand this world of difference, but still say it is not ok to use the word publicly, for the same reason we do not use the word retarded… many people with dementia also feel like this. It keeps the word in the public arena, and that is overall, unhelpful. On the other topic, I am delighted Veda was interviewed and am really proud of you both xoxox

      • Agreed Kate. If I had cancer I wouldn’t like to be described as “suffering from cancer”. My dear friend who didn’t win that battle used to laugh about how SHE managed IT!

        My point (which I made badly) is that medicalisation of the lived experience of chronic disease results in the term “suffering from”…multiple sclerosis, depression, ALS, MND to name just a few I’ve noticed on TV in the past few months. It’s such a reflection of societal preoccupation with “health deficits” & the market opportunities behind that for big pharma, as we’ve discussed. That discourse of “suffering” is maintained by “not for profit” charities now vying for big market share of the new programs in aged and home/community care, and of course many in the medical profession- who either dismiss dementia because there’s no “fix” or who monitor dementia’s progress to justify scripts, consults and ridiculous reruns of the MMSE.

        Thank Saint Sophia that Veda only deals with the medical world as it suits her, and that she has excellent, respectful professionals around her when she needs them! Her message is that yes, it’s hard, but it’s also ok & she wants people to know that. xx

      • Thanks for the helpful update to this conversation… and yes, I hear suffering from **** all the time. As if we all suffer, all of the time, once diagnosed with anything! xx

  3. Kate, there is still a long way to go. I just kicked the word ‘sufferer’ out of the draft vision of the NCD Alliance, our collaboration with many other disease areas. It might be helpful to come up with some global guidelines on language. Marc Wortmann, Alzheimer’s Disease International.

    • Well done and Thanks Marc… as part of the group, GAP in Dementia Care, we are currently working on global language guidelines. My challenge is, they have been around in the english speaking countries since 2008, and still organisations and the media do not refer to them.

  4. With all due respect, Kate, some people do suffer! Dementia is a Global issue. This means that the views from the rest of the world also count. I have shared with you what we are going through in Nigeria, I wish we could have a program where we can exchange visits – you come spend one week here with a couple of your friends/family, we send the same from Nigeria to your country. You might be forced to redefine “suffering” based on what you see in other parts of the world.
    On the issue of inclusion, when stigma still spells clear and present danger, interviewers will continue to have difficulty finding people with dementia willing to talk openly, in Nigeria. It is a chicken and egg situation. We get rid of the stigma first, and other things will follow.
    The language used can be corrected at the point of error. Well-meaning individuals can be scared off putting their message across, for fear of being deemed to have inadequate dementia language skills. Most people with dementia have a good sense of humor, and most certainly can tell when a word is meant to deliberately hurt.

    • I agree Kiki, we do suffer some of the time, and some people are “retarded” (disabled) – if you look up the word retarded , you will see one of the synonyms is disabled, but, none of us use that word to refer to someone with a disability. All many of us with dementia ask is we are not ALL labelled sufferers. The same respect as people with other disabilities receive, that is all.

The only thing missing in this global conversation is YOUR voice... Thank you.

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