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?
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.