Over the last few years, but especially the last few months, I feel like I have finally found my tribe, or perhaps, I have found a new tribe. This emerging and growing group of people I have come to know, either through social media, zoom and even a few who I’ve met in person, not only have a more nuanced understanding of abuses and rights violations so many marginalised groups experience, they are be truth tellers.

They are, importantly, unafraid of the powerful systems, policies, organisations and individuals who want to silence them.

These are the people who have not stood up for, or have not even attempted to make perpetrators of any form of harms accountable, nor acted towards real change, with their own harmful, patriarchal colonised agendas.

When I first started blogging, I came across Jeff Goins who was a blogger, and wrote about many things, including the importance of creating our tribe as bloggers. He no longer considers himself a blogger, but his work is still interesting. Like Jeff, I too have considered giving up blogging. He says he has given it up, and has moved onto another user-pay platform. To me, although I cannot access all content as I have not subscribed (paid), it actually looks and reads like another format for blogging.

The critical thing is that he has kept writing. I have kept writing too. Perhaps not here as often, but in different ways. Weirdly, I keep feeling drawn back to writing on this blog, so am following my intuition, and am back, at least for another day.

The value of having a tribe is that it fosters an environment for generating new ideas for work and life, open discussions with people who are not defensive, but hwo are like me, curious, and willing to question things, as well as look in the mirror. Whilst also providing me with a sense of community, which I find is vital for a healthy and productive life, it gives me a sense of purpose, a reason to interact with others and I have found, provides significant health and wellbeing benefits. The value of blogging, is for me, journalling as a form of therapy. Ps. I used to allow comments on my blogs, which then turned blogging into a form of narrative therapy, but due to the spam, I turned them off.

My new tribe counterbalances the unkindness of others.

Kate Swaffer © 2023

They also help with the loneliness of truth. Seriously. I have finally found a group of people who get it, and whose experiences may be different, but who are also truth tellers, and believe in, and are practitioners of taking actions towards social justice.

One’s tribe can be more effective through its shared culture, a product of the language we use (words and experiences that create our own realities), and the responses and/or actions that accompany those words. The words we use to describe ourselves, our work, and others, creates the world we live in, and for me, having a tribe contributes really positvely to that.

People I once trusted, have left my tribe, or perhaps, I have left theirs… who really knows? But I feel freer, somehow more alive and more fearsome. I am also more determined to say it as I see it. I am no longer afraid of the bullying, the silence or the retribution.

Truth has a funny way of weeding out those who cannot see it, or prefer to ignore it.

Kate Swaffer © 2023

One of the authors of the report I higlighted recently, Not Before Time: Lived Experience-Led Justice and Repair here, even considered suicide after harrassment from the Victorian government not to publish the report. As I said in that blog, this is wrong on so many levels, and is strong evidence that the people in power do not want to be challenged, or to enable change.

I’ve found it to be the same in the field of dementia, especially in research and advocacy.

For years, I have been increasingly questioning, and campaigning for change in multiple areas of research, clinical practice and dementia advocacy, most of which has become increasingly unpopular within the sector. This has also led to me being ostracised and excluded by many who I thought were part of my tribe, including many of whom I had respected for years, or mentored for years.

In the field of dementia, everything has changed, and nothing has changed.

These incredible allies (my new tribe) continue to motivate me, and strengthen my resolve.

Many, like me, have also experienced childhood trauma, or sexual assault, as well as bullying and harassment; they have also been excluded, ostracised, and have had attempts by those in power, and others incuding family and ‘friends’ to discredit them. I have experienced most of these things personally – and persistently over many years now, as well as ongoing plagiarism, ‘the silent treatment’, harrassment, and bullying by academics, dementia consultants, advocates, care partners and beyond. I regularly listen to recordings of presentations by people campaining on topics I (or others before me) have spoken or written about years ago, as if they were the first person in the world to do so. In research, it is critical to ensure we don’t plagiarise, but in the world of dementia advocacy, very few recognise or acknowledge the work of the pioneers. It is human nature, it seems, to want the power and funding, or the need to ‘be seen to be the first’, and to ‘love the limelight’. The new ADI Experts by Lived Experience Advisory group is proof of that.

I’m extremely grateful for my new tribe, and have stopped feeling so alone, and abandoned. I’d love to mention them all by name, but for fear of missing someone out, simply want to acknowledge them in some way, most of all, to say…

Thank you.