Kindness is far more important…

My father in law, the late Peter Watt

My father in law, the late Peter Watt

Last year, I was asked to answer some questions for a website featuring Change agent stories, which has now changed its focus. They invited people to write stories whom they considered to be ‘Radicals or Change Agents’. The questions took me a long time to answer, and even now, I am not sure if I have answered them well, or even if perhaps I have changed my mind on a few things. I think the most  important trait or accomplishment I can ever aspire to is kindness.

I have been the target of the exact opposite of kindness recently, and know how it feels to be hated so malicious, even though it was probably only a very few people who have had little or no direct or meaningful contact with me for years. Anyway, as I had worked on it, and have been thinking about how to keep going in my advocacy, even forcing myself to become a warrior to ensure I don’t give up, I decided to share the questions and my answers here.

This photograph of my father in law, the late Peter Watt often reminds me to keep going, to remember that no matter how old we look, we were all once young. He and my mother in law (June) taught me as much about love as any other adult in my life apart from my grandmother and some special aunts, and my husband and two sons. Continue to RIP dad, I miss you.

Brief profile as requested for the Change agent stories:
I’m unsure I see myself as a radical or a change agent; perhaps I’m simply uncomfortable with labels, and am happier being called Kate! I also prefer to strive to be kind. In saying that, I’m comfortable with being seen as a Spartan or a disruptor! Ps. In addition to what I wrote last year, I have now decided it necessary to become a warrior!

By this I mean, I live by choice, not by chance. I choose to be motivated, not manipulated, I prefer to be useful, not used, and I strive to make change not excuses. Years ago someone asked me if I was ‘a gunna’, meaning ‘gunna do this, gunna do that’, and never actually doing it. That question changed me, and from that day on I have chosen where possible to live with purpose, and to let go of my ego (always a work in progress!) and to serve others. I strive to stop wanting to be right, preferring to doing the right thing, even if it makes me unpopular. I choose self-esteem over self-pity, and to see the sunshine, even on cloudy days. When my glass gets empty, I fill it up again, and most of all, I listen to my inner voice, rather than worrying about what others think of me or what I am doing. All of these aspirations are, as always, a continuing work in progress!

My current purpose is to change the post diagnostic experience for all people with dementia from the current pathway of Prescribed Disengagement®, to one that is ethical and supports people to live with dementia, not only to die from it, and includes enablement, rehabilitation and proactive disability support. My focus is on human rights.

What has been your most notable radical accomplishment or experience?
Being a co-founder of Dementia Alliance International (DAI), with membership now of more than 2500 people from 38 countries is what I feel is the most important thing I have done in the dementia sector. DAI is the global voice of people with dementia. My global work as their Chair and CEO in advocating for our human rights, and supporting others diagnosed with dementia to become re-empowered to live as well as they can with dementia means more to me than almost anything I have done in the last 10 years.

Empowering people they can live with dementia, not only die from it is what gets me out of bed every day.

When did you first realise that you are a health & care radical?
I’m not sure I ever did… but a couple of years ago at a conference dinner, a young researcher told me my presentation was offensive to her and to a number of ‘leading’ academics. It was ‘offensive’ to them that I had ‘dared to challenged the BPSD paradigm’, and I was told that night categorically that I am wrong. I wondered, out loud, if as a researcher, she could possibly consider a position where she and her colleagues might be wrong, and I (and others) might be right. This was not only impossible for her to contemplate; my asking it personally upset her. I thought researchers were meant to be more open-minded…

It was at this point that I realised I was probably seen as a disruptor in the dementia sector, although I am proud to seen by some as a Spartan, who refuses to give up until I either prove my theories are right… or wrong, and if they are wrong, then work out what alternative ideas are worth pursuing that will improve the care and QoL of people with dementia.bQuite simply, I refuse to accept the status quo, and to only operate inside someone else’s ‘box’; I actively explore every opportunity to learn and, when necessary, to change.

What advice do you wish someone had given you earlier in your career?

  • Be brave
  • Accept you are sometimes wrong
  • Everyone is doing the best they can
  • Be kinder than necessary, as you rarely know the battles others are facing
  • Failure is the next step to success

What is your favourite radical characteristic?
Not being afraid to be wrong, and not being worried about what others think of me.

Conversely, for me, the least attractive characteristics are the inability to take healthy criticism, the inability to consider you might be wrong… and most of all, being unkind.

What is your favourite question?

  • Are you okay?
  • And of course I have a second favourite: Why?

What one clue tells you you’re affecting positive change?
It is only through frank feedback that we can be better people or improve our practice. Without it we may well remain oblivious to the need for change. Through changing practice, we can be responsible for impacting a more humane and psychosocial approach to dementia care, which so far, the late Tom Kitwood’s Person Centred Care theory has not done in real practice. It is not easy to know one is truly making a difference. I am unsure if I am, but I hope so, and I will definitely keep trying.

What do you think it’s most important for people to understand about radicals?
People must understand that being a disruptor or a Spartan (or, if you prefer, a radical or a change agent) does not mean ‘we are trouble’! In saying that, many who prefer the status quo definitely do see us that way, and often go into bat against us, privately, or more often on social media these days, very publicly! And far too often, very unkindly.

It simply means if there is something we believe needs improving or changing, we decide to become the catalyst for change. If we don’t speak up, regardless of who agrees or disagrees with us, and regardless of how many are actively (passively, sometimes passive aggressively or often, openly) against us, we could never claim to be an agent of change!

Doing the right thing, versus being right, is the most important factor in being a catalyst for change, even if we are the only one standing to begin with!

 

What’s your one word piece of advice for radicals?
Be a nice person, and be kind to everyone, ALWAYS. Why? Because we have no idea what battles others are facing.

What’s your one word piece of advice for non-radicals?
Become one!

Where do you think radicals are most needed today?
Every single health care sector! Perhaps especially in mental health, disability and dementia.

Who is your favourite radical from the past 100 years?
Martin Luther King is the one person whose vision, strength and persistence I always refer back to, especially on the days I want to give up! In fact, I see the way people with dementia are still so marginalised, and our human rights so totally ignored, is little different to the way his people and other marginalised communities are still being treated.

What’s the one thing you should never say to a radical?
Give up, or you’ll never create change (what a load of bollocks!)

How do you rate yourself as a radical?
Fearless (although terrified most of the time!)!

Footnote: My other most meaningful accomplishment is being a mother to two wonderful sons Charles and Matthew, and the wife of Peter Watt, my incredible husband BUB and best friend. And despite all of the answers to all of these questions I was asked to respond to, kindness and unconditional love are definitely the most important.

#LivingBeyondDementia #Warrior @KateSwaffer

26 thoughts on “Kindness is far more important…

  1. Great answers for some rather closed minded questions Kate….It is amazing to watch the status quo of anything be challenged and worse, lose their hold. We are being buried by opposition here right now over our new President. People would rather fight against something than try to figure out a way to merge with it. It is such small minded thinking it is pitiful. I could see from the questions you were given that they are still in full battle mode. Don’t disrupt and all will be well. Disrupt and you shall be proven wrong and brought down, God willing. NO ! The opposing forces are[usually] opposed for good reasons, it is time humanity moved up a rung on life’s ladder. It is time we step up our game and raise ourselves up. It is time to see the errors of our ways, admit things are wrong the way they are and move forward. Making change is so very difficult because we remain in very shallow mindsets that are in serious need of updating! Hang in there Kate as you always do. Opposition does NOT equal radicalization. Opposition means open your eyes, figure out what is wrong and change it. If we allow humanity to be labeled radical because it sees things differently then humanity will never advance to become the MORE that we can be…..Hugs…VK ❤ ❤ ❤

  2. We have lots in common Kate, and I really value your thoughtful answers to the questions in this piece. As for whether you are making a difference or not, I think the answer is a resounding and global YES!

  3. Kate, YOU inspired me to follow your heart as an example of courage through kindness. Never doubt that a small group of committed people can change things, Margaret Mead said that. 🙂
    Your life will inspire many more people to follow you and I’ll personally take responsibility to be certain they do.
    How’s that for inspiration young lady. Thank you for being YOU.

  4. ‘Years ago someone asked me if I was ‘a gunna’, meaning ‘gunna do this, gunna do that’, and never actually doing it.’

    I think that question is going to stick with me too- how motivating! Great post Kate. Thank you.

  5. Kate, I discovered your blog last night and think it is wonderful. I shall work my way through your old posts.

    I was a carer for circa 10 years of my father in law who had vascular dementia and who died in 2008. Because of his diagnosis, when I was made redundant in 2006, I started volunteering with the Alzheimer’s Society and in 2007 I became a part time employee. I left in July last year after almost 9 years when I was made redundant. Being passionate about helping people affected by dementia and wanting to put my knowledge and skills to good use, the week after I left I set up the free Reflections Friendship Group for people with dementia which I run jointly with my husband.

    I like to have positive quotes on the wall and would like to use your one-
    ‘Be kinder than necessary, as you rarely know the battles others are facing. ‘ and put your name under the quote if this is ok with you.

    Due to the success of the Friendship group we are now going to set up a monthly carers group in March. I believe education of carers is fundamental in ensuring people with dementia live well and via this group we can do our bit to help this along

  6. I’m trying to kill them with kindness at the moment Kate. My default is my ‘shop steward mode’ which still has its place despite the pleas of the liberals. I suppose it comes down to horses for courses but I’m never sure if we are on the flat or over the sticks. Warrior on my god friend.

  7. Thanks very much for this post Kate, very inspiring. I agree with the theme of kindness which runs through your answers. While the battles and obstacles often seem insurmountable, I’ve seen (albeit in my few years of experience in this area) lots of examples where the ability of the ‘radical’ to listen to others, even when their views appeared different, becomes the key that unlocks the door to create partnerships and change. Perhaps the truly radical thing is not just to have the radical and disruptive ideas, but to have the inner strength to share those ideas, cope with the often negative responses, and then move forward, working towards the best outcome that can be achieved, on whatever playing field is laid out! All the best, Craig

  8. I love powerful a warrior woman! They are inspiring. Warrior on Kate. They say what doesn’t kill you makes you stronger!!!!!Kate from Daughterly Care PS Have you inspected any Butterfly Homes in the UK (dedicated dementia care homes). Any thoughts on them?

    • Hi Kate… thanks, I suspect you might be a warrior too?! Re inspecting any Butterfly Homes in the UK, I have not, although know a little bit about them. My suggestion to Alzheimer’s Australia some time ago, was not to introduce yet another ‘scheme’ into Australia, but to more broadly roll out the NHMRC project started in Ballarat by Professor Mark Yates. Having different styles and methods makes everyone confused, and as there is little evidence yet for the Butterfly one (I think it is currently being evaluated, or maybe I am wrong, and it has been??)… we stick to the evidence, and one system. Sort of like why we changed to the same gauge railway tracks in each state and the territory in Australia 40 years ago…

  9. Great insight Kate – and very helpful to me personally.
    I am determined to help changes happen. I am attending a meeting later today where I will have the opportunity to ‘share’ my views and experience (13 years as a caregiver to my partner Jenny) of what facilitates the wellbeing of a person living with dementia – the meeting is with the persons who commission services in my local area for persons who are living with dementia – a chance to help make a difference locally (the commissioning organisation if for an area with an adult population of approx. 500k citizens).
    Thanks for expressing your thoughts so clearly

  10. Kate, I treasure your insight and text. As a professional in the field of dementia, I and others are in your debt for teaching us and enabling us to pass on your knowledge and personal perspective. I always teach – talk less and listen more. A lesson for the researcher I think!!

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