Inspired by a film about truth

The short Vimeo I am posting below today was made by a friend and colleague in Scotland, which I found to be incredibly profound. For me, it spoke mostly about truth. But it also speaks about lies and deception, and arrogance and the lack of scrutiny. As I have become what others often tell me – a rebel, disruptor, or a whistleblower, or simply someone willing to lose ‘friends’ by talking about topics many others are too afraid to speak up about. This short movie really spoke to my heart.

Within this short movie, Peter says, “Establishment does not receive the scrutiny it deserves.” This is true for many, not just in medicine, or more specifically in the dementia sector more generally. For example, the development of technology for people with dementia also does not receive the scrutiny it deserves, and has found ways to avoid ethics approvals, which is always needed by researchers.

There is also something seriously wrong, if anyone actually believes a short Dementia Friends awareness session is all the education and knowledge they or their staff need to know about dementia. No wonder the experiences of stigma, discrimination and isolation are still so common.

In fact, a few years ago, a community care provider in Australia asked me to endorse their ‘Dementia Friends training’ for staff, and when I asked for the content, they told me it was a short 30 minute dementia awareness session for staff working with people with dementia. Before this ‘training’, their staff had NO education in dementia. Obviously, I was not willing to endorse it, and also objected strongly to them even calling it dementia education. My voice made not one bit of difference…

The arrogance of the western medical community, and the ‘Establishment’, alongside the unwillingness of organisations to do little more for people with dementia and our families than ‘engage’ us to use us for fundraising, needs more scrutiny and attention too. Too often, those of us who want tangible change rather than  more rhetoric receive negative reactions from people who do not want to change, or are too arrogant to think they or their organisation may need to.

Often I read articles or things like Facebook posts, or listen to well-intentioned people including academics, clinicians and other health care professionals, as well as many care partners on social media, I mostly ‘hear’ how awful it is supporting a person with dementia, and also what they think is best for us. This is well-intentioned, and done with good will, but I also agree with Peter that “good will can cause as much damage as ill-will if it is not enlightened.” The way care partners are still mostly advised to take over for us, is done with the best of intentions, but, in reality, it further disables us, and strengthens the Precribed Disengagement® still being recommended to most newly diagnosed people with dementia.

So, if you have time, please watch and listen to this movie by Dr Peter Gordon. I hope it will change your thinking, as it did mine.  It definitely inspired this rather rambling blog!

ASTROV, by Dr Peter Gordon

 

17 thoughts on “Inspired by a film about truth

  1. Hi Kate! I found your language (WHO summit) in Teepa Snow PAC from USA. You and DAI do that. Step by step you are enlightening dementia care culture:
    ///// Teepa’s Training: Positive Approach® to Care (PAC), provides training, services, and products around the world. Teepa has successfully integrated her education, extremely varied work experiences, recent medical and international research, and first-hand care provision experiences, into a program that guides others in effectively working with people living with neurocognitive degeneration. Using the words neurodegenerative change, rather than dementia, is an example of how Teepa is working to change the norm of dementia care culture. “As people living with dementia at the World Health Organization summit indicated, language matters. So, let’s try using the words that match what is actually happening for people, not the word that imposes judgement on another’s mind” was Teepa’s comment when asked why try to get a complicated word into the vocabulary of people who have difficulty knowing the difference between the terms Alzheimers and dementia.////

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    • Hi! Thanks for joining the conversation here Anonymous. I love Teepa’s work too though don’t personally have an issue with the word dementia. Many others don’t either, but many do! Especially in developing countries. The important thing is we all plod on working to improve the quality of life for all people with dementia and our care partners and families.

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  2. Thanks for yet another deeply thought-provoking post, Kate. I read/watched this earlier today. I later came across this quote from Martin Luther King that expressed my feelings on the subject, “Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is much more bewildering than outright rejection.” You remain my most respected teacher.

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  3. Thank you Peter for a beautiful and thought provoking video, and thank you Kate for bringing it to our attention. Like you Vanessa, the line “you cannot understand the whole from the part”, was the one that struck the strongest note for me.

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  4. Dear mhorvich,
    I am so sorry that this film left you tearful. I have no doubt that you, alongside the medical community did the best for Gregory. I see good will and kindness everywhere. This film was about wider, general principles sharing philosophical and artistic thoughts.

    Thank you Kate for writing about my film with such beautiful thoughts. You are a wonderful person Kate.

    My main reason for making this film is my worry that ethics may not always be at the beating heart of science.

    aye Peter x

    Scotland.

    Liked by 1 person

    • Dear Peter, Thank you for responding to my friend Michael… we also chatted privately about it. Like you, it’s the worry about ethics (or lack thereof) that bothers me. Love you both very much xxxxx

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    • Thanks, Kate and Peter for the continued conversation. The video continues to “haunt” me as I continue trying to understand why it has affected me so deeply.

      My further thoughts are that it so accurately portrays the state not only of the medical and psychology professions but also the belief/thought processing of all sentient beings.

      For me, it shows reality in a real way, not an imagined one. It shows the difficult work we have, those who “see,” ahead of us to change the paradigms that control so much of our thinking and therefore our lives and our reactions to it.

      I believe now that it saddened me in that it uncovered how much I too have been “convinced” inaccurately (inappropriately?) in my thinking. It frightens me in how vulnerable I am feeling right now about how to make changes in my thinking and actions (let alone, as you say, influencing the wider, general principles in medical, philosophical and artistic thoughts.

      Finally, Peter, the way in which your video presented the issues and cut into my thinking was as amazingly sharp as a scalpel to the mind.

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      • Dear Michael,
        What a kind man you are and your thoughts are so valuable to me. Thank you.

        The backdrop to ASTROV is that I worry that we may be over-medicalising the world and as such harm is caused. I am concerned that as a result those who most need medical care and support may not get what they need as resources and services are spread too thin.

        I support science with a passion, but in its true sense it needs to be science for itself – not as a business opportunity or a place to progress status and ego. I fear that too much of these “interests” are at play in science.

        kindest wishes Peter
        Bridge of Allan, Scotland.

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      • Dear Peter, Thank you for responding to Michael. It’s an important conversation. I especially resonated with your last para: “I support science with a passion, but in its true sense it needs to be science for itself – not as a business opportunity or a place to progress status and ego. I fear that too much of these “interests” are at play in science.” I fear the same … x

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      • Hope these comments are arriving in sequential order so our “train of thought” is in order:-) I agree with you, Peter. It seems like SO MANY OF THE WORLD’S PROBLEMS right now, including our understanding of and dealing with Dementia/Alzheimer’s are due to on GREED, STATUS, and EGO … rather than that elusive idea called TRUTH!

        • • •

        Also, regarding “medicalization,” here is a quote from my presentation on “Living Well With Alzheimer’s,” which I have made a number of times for various groups and organizations:

        “The DOCTORS were able to rule out what WAS NOT GOING ON, but being a progressive, incurable disease, what can they really do during those early stages except to confirm my existing observations?

        They were able to prescribe drugs like Aricept and Named, which are pro-purported to slow down the disease, but honestly, how does one measure this and against what baseline?

        I knew that what Gregory and I were experiencing was due to a MEDICAL CONDITION and the changes taking place in his brain were affecting all parts of his existence.

        Rather than dealing with the Alzheimer’s in terms of its MEDICAL IMPLICATIONS, I worked very hard at CREATING A NEW SENSE OF FAMILY and HOME for Gregory and me. We modified our life, our home, and our relationship … to fit Gregory’s changing needs.

        Sometimes the modifications became an ongoing event, with my having to become more and more creative in helping to provide for and nurture Gregory in all ways environmental, safety, physical, medical, mental, emotional, and social.

        The MEDICALIZATION of our situation would not and did not help us to live the best we could!

        • • •

        Thank you so much, Peter and Kate, for this continued conversation which is allowing the continued changing of my thinking as so many others.

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  5. Thought provoking as always Kate, I think for me the most powerful line was ‘you cannot understand the whole from a part’
    We need to take the time to see all aspects of a person, too truly understand the whole person. Not just focus on a diagnosis and the deficits. There is a great quote from movie Patch Adams that I am reminded of ‘You treat a disease you win, you lose. You treat a person I guarantee you, you’ll win no matter what the outcome.’
    Thanks for making me stop and think Kate, x Ness

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  6. The video was hard for me to follow but periodically a message delivered rang true. I came away from it, however, feeling hopeless to do anything at all for those I love(d) with Dementia. “Good will can cause as much damage as ill will if it is not enlightened.” But isn’t that true for all things in life? I did the best I could for Gregory but it was not always the best and I was not always at my best. Is it possible that DOING NOTHING would have been better? I am so sad with tears holding open my eyelids.

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    • I’m so sorry dear Michael… this is witness to how differently we all interpret things. Try not to cry. You did YOUR BEST for your beloved Michael. In reality, we are ALL DOING OUR BEST, each and every day. Yes, even if it’s not good enough for others. Love you forever my dear friend ❣️❣️❣️

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