My rambling thoughts…

IMG_5156It is Saturday in Australia, and the first thing I’d like to do is say Happy Birthday to Shibley Rahman, a friend and colleague who will wake up in London, hopefully to a sunny day! It is not a great shot of me, but the flowers surrounding the entrance of the Bloomsbury Hotel in London two weeks ago, which were to coincide with the Chelsea Flower Show at the time, were glorious, and the scent entering the hotel was truly heavenly!

But anyway, onto other thoughts for today, as my brain is truly rambling and unfocused! Some days are harder than others, without anything getting in the way of progress, but often, difficulties, illness or tiredness make things worse, just as they do for everyone.

My rambling thoughts are in part due to not having fully recovered from our jet lag and the ‘cold’ I picked up in London, as well as the thinking required for my studies, and of course, the many tasks for DAI matters that have to be done each week.

They are also due to some deeper than usual thinking about life in general, and the many criticisms coming my way, either directly or indirectly about the work of DAI; my thoughts on this have led me back to this quote;

First they ignore you, then they laugh at you, then they fight you, then you win”

This quote is frequently used by others and is one I have posted here before, and attributed to Mahatma Gandhi, but in actuality there is no record of the peace advocate ever saying this. You can read more about that claim here…

When DAI launched, it was with little fanfare other than that of the seven founders and one volunteer, and our families and supporters. Mostly we were ignored and many laughed at us as well, saying it was impossible for people with dementia to run its own advocacy and support group.

When we ‘arrived’ in Puerto Rico at the ADI 2015 conference, we made such a ‘statement’, that some actively tried to shut us down, or take us over. We resisted, in part due to the promises so many others had made consistently for so many years to support a group like DAI, without acting on their promises.

Why would we even want to rebrand something was working, that we had worked so hard for, and was proving to be successful?

Plus, we set up DAI, as DASNI, the first advocacy group set up by people with dementia, had basically been taken over by the significant others of people with dementia.

We wanted an authentic voice.

Of course, seven people cannot represent 47 million people with dementia, but even them we represented four countries.

We most definitely have not won yet, as it seems, as there are still others who want us to fail, or who do not support DAI fully. Even some people with dementia do not really support us, and complain about DAI behind the scenes, saying we are not representative of people with dementia globally, and cannot make the claim to be the voice of people with dementia.

With DAI members now in 35 countries now, I would say we are the closest group there is to being representative of the global voice of dementia…


Ps. Apologies I have not responded to comments on my blog the last week or so… I’ll get back into full swing again soon!

7 thoughts on “My rambling thoughts…

  1. Your rambling thoughts bring to mind the lyrics, “you can’t always get what you want, but if you try sometimes, you get what you need”.
    In my opinion, you never stop trying and you are getting more than you see. DAI is steadfastly making change in ways unbelievable to the World. All PWD are using their voices much more realistically because of the diligent work and education brought to the forefront by DAI. A ‘village’ has created as we all know, it. takes a village to create change.
    I am so proud of the change you, and all PWD are creating.


  2. Unfortunately there are always going to be people who want their opinions to never be questioned by others and will do anything to fight for “supremacy”. Sorry it’s happening to you Kate!! As the famous song goes …….. “I get knocked down, but I get up again, you’re never gonna keep me down”


  3. There will always be a diversity of opinions in everything. That’s just the way life is. You are doing great work. Others are also doing great work. It doesn’t have to be mutually exclusive imho 🙂


  4. Paulan Gordon: You are doing wonderful things. I don’t believe there is another organization that is comparable in any way. You can never make everyone happy, especially with the broad audience you have developed. Keep it up. Not only will the world benefit from your inclusive dementia advocacy efforts, I believe you will also benefit knowing that you have helped so many. I continue my advocacy efforts with online support groups, newspaper articles and TV appearance, and I realize how much I am benefiting with this new sense of purpose. Thanks and best wishes for continued success.


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