Q & A on my personal advocacy

/ February 28, 2018
This blog has been sitting in the drafts folder since December last year… and for some reason, today seems the right day to publish it. As tired as I am, and as so many others also are, and regardless of the progression of dementia, we must not give up, nor give in because of people who don’t like what we say or do, or in some cases, what they perceive we don’t do. Clearly, I cannot help everyone in this world, nor can DAI, no matter how much we or I might like to.
Comment from my Contact page on my website on December 12, 2017 at 2:14 pm:

Dear Kate, Just a brief statement or plea, I was wondering how you address the causes or dementia, during your talks or through your writing (which I promise I won’t copy or paste). I also wondered if people listen, how do you ascertain the message is going to be understood and how would medical authorities take a note (notice) of your personal journey through dementia and the very intimate lessons you drew from it? Best regards, XX

My brief email reply:
Hello XX, I guess the only way to respond to this, is like this:
“I will never give up! In the last 8+ years, I have learned to be more polite, more diplomatic, but also more persistent and to stay very determined. I’ve found a way (some of the time) to be less abrasive in my demands for a better deal for all people with dementia, and hopefully have also found gentler ways in my writings and presentations that encourage others to take action, instead of becoming defensive.
It has been a journey for us all.
In saying all of that, if I feel I need to get angry about continued injustices, lack of tangible change or action, and especially lack of inclusion, I will!”
 
Feel free to ask for further explanation, and to quote me if you wish to!! If you quote me publicly, please let me know where.
In fact, I will use your question and this short response, to write a longer blog… thanks for the idea. Kind regards, Kate
Following the #NCDAF2017 Update, December 11, 2017, I wrote:

Often, I am sure I come across incensed, especially when people with dementia have been excluded fro things like a panel session about the, or when DAI is excluded, or worse, invited late as an after thought, when ist is usually too late to find someone who is free. Although some may not think so, many people with dementia have very full diaries; perhaps they also think we are sitting around waiting to be asked, rather than out looking for opportunities to simply get on with living our lives, or even create change.

At the time, I think I had just returned home from attending the second NCD Alliance Forum in Sharjah, and found myself feeling like the title of an update we received on the Monday from that conference team, as follows.

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11 thoughts on “Q & A on my personal advocacy”

  1. Compelling, inspiring and challenging. Kate you are remarkable in your extraordinary ability to communicate to the world how cognitively aware assumptions are just not acceptable when discussing people living with dementia. The only experts about dementia are the voices of truth. That is people living with dementia. I applaud you for your courage in dispelling every negative myth and stereotype associated wirh dementia, and created by people who DONT live with dementia. It’s time the power of your voice was listened to. You have my support without doubt. My hero.

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    • Almost forever, and too often still, the decisions are made about and for us, without us. I also suspect the ‘Dementia Villages’ are yet another example of that. Oh well, onwards and upwards through the ever increasing fog my friend. Wonderful to have your support. X

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    • My belief is it is we who should never ever discount the vast amount of information that you can provide us regarding living with dementia.
      Assumptions don’t cut it and the obvious answers are to use the sources and experts, and this is only going to be those that live with dementia.
      Kate I take on board everything you say as your personal truth, and thus it is through this wonderful insight from yourself and others who live with dementia, that I conduct all my work.
      I do agree with the dementia village sitch, as you pointed out to me a while ago how this is yet another form of segregation and not integration.
      Its very true, and there needs to be ways of people looking at this information and being flexible enough to adjust it accordingly with the assistance of people who live with dementia advising them.
      There are answers, and ones that will create change, it just needs to be handled with all of us as a whole.
      Together is how we make a difference my friend.
      With love always.xx

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  3. Create change is exactly my role in this adventure. Kate we have the same role I am 99 still making my voice heard. It is a bitter pill when our industry that we are all in are complacent and shun new ideas. A short statement, I am proposing a new medical practice, UNIVERSAL ALZHEIMER’S TRAUMA MEDICINE. Purpose is self evident, keep our patients alive till they die, said Lady Cicely.

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