Words matter, but actions speak the truth

I quitNo, I am not just over-tired or feeling a bit burnt out, but I am getting very annoyed at having to continually ask why, yet another group organising an event has published a list of speakers (yes, again), the topic of Consumer Directed Care, and yet, did not bother to invite a speaker with dementia, the very cohort who uses the services. The stock standard answer came back (yes, again) when I questioned it, that no-one was referred to them, and they couldn’t find one.

Really, with a new diagnosis every 3.2 seconds globally, and more than 353,800 people living with dementia in Australia, and people without dementia are still using that as an excuse…

We may have dementia, but trust me, we are not that stupid.

Most of you know, I am definitely not a quitter, and I have incredible determination and ‘stick-ability’ for most things, especially the really tough ones. But, today, I feel beaten… I have resigned from many things already this year, due to needing my time back, but am about to resign from 99% of all advocacy outside of Dementia Alliance International. It seems to me, the only people who do not discriminate, and show no stigma towards people with dementia, are other people with dementia. We will continue to work towards accessing our rights in the United Nations Conventions of the Rights of Persons with Disabilities (CRPD), and our most basic of Human Rights.

I do know that many people mean well, and say the right words, but it is the ACTIONS of those (often the very same people) without dementia that speak the loudest.

Henceforth I will be campaigning that no person with dementia ever accepts an invitation to present or participate, if it is a ‘late invitation’, or an invitation where someone has had to ask for people with dementia to be included, and not one that has come at the same time as all the other speakers. Not to do so, is simply rude, and highly offensive.

Wendy Mitchell from the UK recently experienced how patronising and rude people can be, and even though she was on the program, on the day she was left off for the second presentation she had been asked, and advertised to give. She has been apologised to, but this is totally unacceptable.

The passive stigma, in many of the very organisations who say they ‘care’ for us, is quite obviously, rife…

36 thoughts on “Words matter, but actions speak the truth

  1. Dear Kate
    Very sad & frustrating that these groups/organisation’s are not utilising the best resource available to them, people who actually have dementia. They are missing or on a wealth of insight & first hand knowledge of this illness.
    Your blog has given me the greatest knowledge/insight into how my dear SIL might be feeling/dealing with her dementia . Your blog has also challenged my beliefs & made me stop & think about the language I use around her and how I see my time spent with her as a gift not to be wasted!
    I wish you well in your future endeavors in your fight for inclusion in these groups
    Heather x

  2. Dear Kate, this must be SO frustrating and infuriating. You can see why people become militant and blow up postboxes in desperation. That is not an incitement to do that but jeepers, it’s tempting.

    On a different subject, I’m a participant in a research group at Edinburgh university (Prevent) and, at one of the presentations, we were asked why we decided to take part. I piped up with the story of my sister and how she had said “I hope you get some writing out of this, Ali” and the professor looked mock alarmed and said, “So you are here to research us! I don’t remember signing any consent form!”

    lots of love and encouragement to you xxx

  3. Hearing this does not surprise me in the least but please do not give up. We need people with dementia such as yourself to be the voice of those who have no voice. I care for my mother who receives Consumer Directed care in the community, and they in particular need to hear what you have to say. I am so very disappointed in the way CDC was rolled out and how they lump every client into the same service. Mum has advanced dementia but given the right treatment she is capable of a happy and interactive life. With the allotted hours given in her package she has no hours spare for anything that relates to quality of life.
    We need huge changes in this field, which is why I have just enrolled in a Bachelor of Dementia care at the University of Tasmania.
    I admire everything you do
    Keep at it

    Adrienne Catherall

  4. Thank You Kate for your insightful and incredibly powerful writings. I cannot imagine the frustration you must feel, but the importance of what you speak is shaking the very foundations of the established “experts”. Your blog entries have become a great motivation, education, and inspiration for those working to change the rules. I constantly quote you in discussions that I have with many in the advocacy and healthcare fields. Looking forward to your future insights and viewpoints!
    All the best from a small rural community on the coast of British Columbia, Canada.

  5. Dear Kate,
    Sorry to hear about this experience you have had, and I respect your decision. A very short idea for your consideration. What about a conference organised by people with dementia, focused on the issues that this organising committee believe are important, with speakers selected by them? Obviously the funding needed to run a conference is not small – but would advocacy to support resourcing a conference like this be a useful thing in your mind? I may be ignorant of an event like this that is already occurring or in planning.
    Best wishes,
    Craig

    • Thanks Craig… I continue to be dismayed and disturbed that this continues to happen. Dementia Alliance International (DAI) is already working towards it’s own conferences and events, and we will hold it’s fist alongside the ADI Regional meeting in November in NZ. As you say, funding is the biggest issue we have, as well as support and ‘belief’ from others. Perhaps we should have a chat some time? You can read about DAI here http://www.infodai.org

  6. No you are not over tired or a bit tired or cranky!!! You are frustrated at what seems like a “no-brainer!” And if this is going on is Australia under your watchful eye, I wonder what is going on around the rest of the world? I have a counter suggestion to your “campaigning that no person with dementia ever accepts an invitation to present or participate, if it is a ‘late invitation’, or an invitation where someone has had to ask for people with dementia to be included, and not one that has come at the same time as all the other speakers.” What if the person with dementia accepted the speaking engagement: 1) letting the organization or person offering the late invitation (or requested invitation) know how rude and offensive this is and also 2) letting the audience they are speaking to know that they were overlooked until last minute and/or had to ask to attend and letting the organization and people attending know that this MUST change. They can also talk a little about WHY this is so important (even if it is a no-brainer to those of us who know better!

    • My dear friend Michael… believe it or not I have tried that so many times, it is a joke. Behind the scenes, on the podium, in an audience at question time, and every other possible way. Still, people with dementia seem to have to BEG for INCLUSION, a simple basic human right. Although it looked like I would quit on this blog, of course I won’t, I will try another way to create the change that people without dementia have been promising for almost 20 years… xox

  7. The world is a very cruel place to be Kate, especially at this time when the dark ones are fighting so fiercely to hold on to their control over the world. Everything is upside down and backwards! Recently I had applied for Social Security Disability as I have been unable to work outside the home for my whole life. Fortunately for me home jobs are cropping up everywhere now, but until I can create a career that could support me I needed temporary assistance to get there. Would you believe in the 21st century here in Amerika if you are 65 or older you are considered TOO OLD for coverage! What!!!! I was stunned. I just looked at the guy in disgust and said to him ” what? When you turn 65 all disabilities disappear?” The sooner we take the world back from these psycho maniacs the better off the world will be.You would not believe the hideous and violent behavior that is going on here in this country over the presidential race! OH MY GOODNESS! They no longer hide what they are doing but rather blatantly talk about their plans to bring us down in the media. it is just insane. The outsider winning the race so far who has full knowledge of what these folks are trying to do is being attacked from all sides, death threats, white powder being sent in the mail to his family and daily meetings of the head honchos running this insanity to figure out how to bring this guy down. Lots of polls are messed with, cheating going on….They are DESPERATE!!!!!! They are loosing and they can’t accept it. It will get worse before it gets better I am afraid. We can’t reason with minds that are shut and opposite to our thinking. It is a waste of the good energy we need. You did right Kate. Take care of yourself and only go where you know you will be heard and understood….Otherwise it is useless…Good luck my friend and stay well…Never doubt yourself. You are definitely on the right path!!!! Hugs and love…VK

  8. Hi Kate

    I agree with you whole heartedly. I can’t believe that people living with dementia are not invited to be speakers at forums or events . There is NO reason that this should happen and the lame ” we couldn’t find one” is just plain insulting. Who could be a better expert on this issue than a person who has been diagnosed with it? It defies belief.

    Also love that quote about having dementia and not being stupid. So true. I hate it when people talk to my mother in that treacly, patronising tone of voice. My mother is not stupid. She has dementia. And worse still is when they talk about her IN FRONT OF HER! GRRRRRRR!

    Keep up the fight Kate. Am loving your book.

    Cheers
    Carmel

  9. Never ever give up while you can still draw breath. You DO make a difference! Change is slow in so many areas, much as we wish it were different. Women still have so far to go to achieve equality, add in dementia and you are struck with a double whammy. I admire you so much ❤️

    • The comment about women strikes a chord too… sometimes now, I ask a man to suggest things I have been suggesting or asking for for more than five years, and ‘hey presto’ it is suddenly a good idea! xx

  10. Kate, I totally get how you feel, and have marveled at your fortitude thus far. I’ve been thinking about what it will take to transcend the stigma, and came up with Magic. Magic Johnson (the US basketball star). He came out with AIDS, changing the world’s perception of the disease, and now people live 20-30 years with it as a chronic yet survivable condition, due to Herculean medical research.

    We just need our own Magic: A Hollywood figure willing to be our poster child.

    Everybody in DAI has to tap into every connection they have to think of whom they know who might be second cousin to someone who works for a movie star or millionaire mega-mogul pop star with Dementia (or related to someone with it and living well). I know I’ve mentioned this before, but now everyone needs to think hard as to who might help us find our our own “Magic,” willing to go public.

    • Dear Mary… I think we are the MAGIC, and although I have often also said we need some high profile person for DAI, to often the ‘price’ for this is too high. Let’s talk as a group about it, as that is our real power. xx

  11. Hi Kate
    You speak the same words as I do. When doing an interview for the devolution. I said the same thing we’re not stupid we just a have a problem sometimes remembering what we want to say or do. For dementia awareness week beginning 16th May we are planning the opening of the week and using Co production and yes we have been invited from the beginning. Thus the words co production.The first planning meeting was yesterday. Another of my sayings is don’t tell me what WE need ask US what we want. I think I will do what you are doing if not asked at the beginning then I’m not coming in, at the end.
    Keep on fighting and take care xxxx

  12. Dear Kate

    I hear your frustration. My heart goes out to you in your decision. I know it wasn’t made easily.

    Your friend and colleague.

    Eileen x

    Sent from my iPhone

    >

    • Actually I’m sorry not to meet you, but it was not the summit I was speaking about, nor was it directed towards Alzheimer’s Australia – although I am going to be suggesting they create some policy to stop things like this happening in the future.

  13. Thank you Kate. As always for standing up for experience, life and being.

    I hugely dislike the commercialisation of dementia. The big business “opportunities” promoted with just about every conference.

    And forgive me for saying but how many Big Conferences do we need? Perhaps better to truly empower local communities and put the person first.

    Whilst I am on my soap-box (grumpy older man that I have become! please forgive me in what I may have become!) I also dislike the simplification and reductionism that surrounds dementia dialogue. The general dialogue of national and policy leads and many of the academics. The only way to change this is to involve those living with dementia (in all shades of bright colour). And never, never ever should this colour be tokenistic.

    There are a number of high profile dementia lead who have made their careers, reputations, wealth, status, awards, honours, power from Dementia. This will happen of course. But let a brightly coloured world ask real questions of their “way”.

    I will get off my soap box now and head out to the garden.
    The snowdrops are bonny, delicate yet so strong they can still emerge through frosted ground; and the daffodils are beginning to add sunshine; whilst the crocuses bring needed colour. I am happy in this wonderfully diverse world. It has no single label no single single appreciation. A science that thinks it might has got it wrong!

    Dr Peter J Gordon
    Bridge of Allan
    Scotland

    • Do stay on your soapbox my dear friend… as you know, I am on one right next to you! I’ve written a number of times how there is BIG MONEY in dementia, and also, how I find that most conferences are simply CAREER LAUNCHING pads for many, or social time for others. We need full inclusion, equality, autonomy and RESPECT, but there are few like you and Shibley who really offer it. Thanks you for being a wonderful sometimes grumpy, slightly younger old man! xx

  14. Thank goodness you’re not a quitter Kate. I’ve decided to take no part in any consultation exercises with those who are still working from the premise of ‘Prescribed Disengagement’. Why would I leave Maureen in the hands of carers to mix with the uninitiated?

    • Well done! Together, we must stand up for BETTER care, better treatment, and not being discriminated against or stigmatised… it we keep accepting the status quo, NOTHING will ever change.

    • This is my greatest fear, of having to place my dear SIL into residential care, where I can’t be 99.9% sure that she will receive the care that I feel is her right, as a fellow member of the human race deserves, I will keep her home for as long as I can! The scary thing is that I’ve worked in nursing homes all of my working life & know the perils that await us!

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