All hands on deck, all egos please walk the plank…

Screen Shot 2016-05-09 at 9.06.25 AMWorking in a not for profit organisation, and as an advocate and activist for people with dementia, I have seen in the sector, and of course, in all other sectors I’ve been involved in, some huge egos. One interesting challenge people with dementia are facing is more than other peoples egos though, it is our own egos, and we must be absolutely resolute to keep them in check.It is not about any individual, it is not about one person being more right than another, it is about our very basic human right to inclusion, autonomy, respect, non discrimination, and so on.

The biggest we face is still by far the objection (subtle, and sometimes not so subtle) that people without dementia are making to us having a voice and getting some of the speaking slots and perhaps even some authentic autonomy. These are the people who have had all the power, all the funding, and/or who have been the voice for people with dementia, who quite frankly simply do not wish to give up their positions of power. This includes those working in advocacy organisations, and family care partners.

Right now, I feel very certain that the most important thing that people with dementia can do to achieve our larger than life many goals including our basic human rights and our disability rights, it to forget our own egos. We  must all work together with focus, forgiveness for errors, acceptance of misunderstandings, and with the bigger picture always in the front of our minds. We must let go of the human need to be recognised, and work together as one. Huge global, national, state, regional and local challenges are still ahead of us for some time, and if we do not face them with a ‘unified, global voice‘, as one, we will keep stumbling and in the process, allow others to continue to operate ‘About us, without ALL of us‘.

23 thoughts on “All hands on deck, all egos please walk the plank…

  1. I want to be positive in the uk we are running dementia champions in the community to bring awareness which is great, but what is happening to all our loved ones in residential care, do you know of any campaigns Kate to improve conditions in residential and nursing care for people with dementia.? I ask because my poor mam has been forced into residential care, my health failed as her carer for last five year, family won’t help and social services won’t fund care at home. My heart is broken for her, this is week four and within first week her feet started to swell she came down with a water infection and terrible thrush in her mouth ( in the five years at home she has ailed only once) she has fallen twice in the last week, again she has no history of falling. None of her social needs are being met and it seems her physical ones aren’t either. She is spending most of time in her bedroom sleeping on chair. This wonderful 89 year old lady was attending day centre mon to fri and enjoyed her inclusion and trips out to the coast and theatre regular. I’m at present battling with social services, Iv spoken to manager at care home and I have informed the quality care commission I’m thinking of seeking help from our MP as nothing is happening. I would like to take this opportunity to warn everybody to be careful when appointing LPOA , mam and dad chose my two elder sisters, who have no interest or concerns with Mams welbeing all they say is she’s ok. I am distressed to see first hand how dramatically mam has declined. I will continue to fight to help protect mam and either get her back into her own home, or moved somewhere where she will be looked after. She isn’t the only one the whole ethos of these places is wrong . I apologise for going off subject, I am looking everywhere for inspiration to make changes for our loved ones who deserve so much better x

  2. Yes. But there is one thing in the ‘ego’ text with which I lovingly disagree.

    I think that most of us actually need recognition, and in fact, we cannot survive long at a task without it. Now, we don’t need applause, per se, and we don’t necessarily have to get a Nobel Prize or even be recognized in public. But acknowledgment from one’s leader, colleagues, or family for a job well done? Oh, yeah! Appreciation? Ooooh, absolutely. Praise? When deserved, it’s nice. Accolades? Ah, right, (just make sure the press is there!). Celebration? Hell, yes!! If I ever do anything that’s really good, I want to share that success with those I love — partly because it’s sooooo much sweeter!

    … And partly, I want to share celebrations because, well… in recent years, I’ve gotten more used to being blamed (justifiably; I screw up a lot more these days!) than being recognized or honored (which actually used to occur before the dementia). So now when even a small victory of mine is acknowledged, I’m, uh, well, I’m like a lone deer in the headlights.

    But I can learn how to stand in the light again (in fact, we all deserve this once in awhile), because I want to be strong again, that is, I want to just be “me” again.

    I know the light may shine brighter or dimmer at times, and that’s ok, as long as you and DAI are by my side, and as long as you recognize me, sometimes just for being me. Thanks.

  3. Well said, as always, Kate. As a former BUB, I can few things annoyed me more than people asking me questions when Auntie was sitting right there. I always appreciate your ability to succinctly identify the problem and offer a better way.

  4. Brilliant Kate. ODAG is listening to this strategy. Using our rights as people with a disability, the Canadian senate has accommodated our needs and we will be able to present as a witness exactly how we would like to! They are listening…

  5. The paradigm change is in full swing Kate, the whole state of the world keeps reinventing itself minute by minute as we stumble headlong into the new world without directions or manuals on what to do next. Many hearts are opening wide now Kate and I think all kinds of ways we treat people and interact with them will continue to change as well…Keep the faith 🙂 Hope you are well…Hugs…VK ❤

  6. Fully agree with your comments regarding egos. Persons with the ‘power’ and an ‘ego’ should focus on facilitating ALL persons to voice their views and make sure that they are heard. In my view, good ‘leaders’ allow all to have a voice and to encourage full participation of all – for enhanced outcomes

    • Thanks Trevor… it is also time even people with dementia who keep getting invited to be speakers, start saying “no, why not invite someone else”… after all, if you have met one person with dementia, that is all you have done!

  7. I can never understand why cognitively aware people lack the insight into understanding this fundamental issue when they are the ones who are supposed to be well enough equipped to use their intact brains to support people who live with dementia.
    This should never ever be about ego. This is what leads to assumptions, rigid and judgmental attitudes and continues those dreadfully archaic and destructive stereotypical views that I continue to observe in the industry..
    If as cognitively aware individuals they cannot adjust themselves accordingly to treat every person as they would like to be treated, not place their over inflated self worth onto others, and realized we are all human beings in our own right, then why are they in a field that is supposed to be about caring, respect, dignity and value??????
    It distresses me my friend that you are still battling these types of ingrates.
    Know that you are so much better than them because you don’t allow ego to destroy the opportunities you are given, or affect others around you.
    Be proud and ignore these egotistical self righteous persons, as they are not worth you even thinking about.. Stick with people who DO understand and who work from the heart instead of self indulgence.
    Love and smiles.xxxx

    Ps. Speaking of hideous ego – lol. Wrote the endorsement for Gary and he was delighted. The book reads well and especially so, as I saw myself referenced all the way through. Lol. (there is MY ego – eeek). Thanks so much darling for hooking us up – lets see if we can now do some research here and in Ireland. Got any ideas????????

    • Haha, love your past paragraph!! Really made me laugh. We all need praise and acknowledgement, that is human and not really ego out of control at all. It is when ego gets in the way of others, or f progress that is can be a pest. xx

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