The discourse of suffering has long been a topic of lived/living experience dementia advocates and activists. Most people who’ve followed me here will know I have been very vocal about it, and how it is harmful to people living with a dementia diagnosis at any age. I presented on the topic on the power of…
In the world of mental illness, and of dementia, people are systematically locked up i.e. physically restrained, and chemically restrained. If you have dementia, even worse, you are segregated from all others, remembering of course, the only others this is done to without consent, are convicted criminals. Check out not only the video, but the…
For some, reading my chapter in this book may feel like I’m ripping off a Band-Aid, or worse. It may feel like a betrayal. It may sound ‘angry’. There will definitely be moments of discomfort, denial, and even disbelief that a ‘retired’ dementia self-advocate could, and would dare to say many of the things I’ve…
‘Ellen Louise Pence (April 15, 1948 – January 6, 2012) was an American scholar and a social activist. She co-founded the Duluth Domestic Abuse Intervention Project, an inter-agency collaboration model used in all 50 states in the U.S. and over 17 countries. A leader in both the battered women’s movement and the emerging field of institutional ethnography, she was the recipient of numerous awards…
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…
As I return to more regular writing and posting on my website, which is helping me to regain my own inner equilibrium, and sense of purpose, as the narrative therapy aspect of journalling has been restored. Every day, I continue to read others words using the various disability techniques now required for reading, and for…
I’m unflinchingly determined to continue to expose what I believe to be human rights violations in particular against people living with dementia, of any age, and of our families. That someone else may not see something I beleive to be a violation, or that I am accused of being wrong, or of blaming people for…
In a recent article I read on MamaMia about a young woman having to prove her disabilities, I was struck by the similarity to my experience, and that of many others, of having to prove we have dementia. “In just over the past month, Rhiannon has received two parking fines. The first of which she…
Over the last 20 something years, we have had no less than 21 formal reports or inquiries onto the challenges we have been facing in Australia of poor care in aged care, to the point, these facilities should not have the word ‘care’ in their names! Today, this culminates in the final report of the…
Today I want to talk about our attitude, but mostly about abuse, bullying, and what I think being a strong person means. I think being strong has nothing to do with your muscles and braun, or how far you can run, or how you can work for long hours without much sleep. It is about…
The following is a comment posted with a re-blog of Dr Peter Gordon’s blog, which I’m also reblogging here: “Dr Peter Gordon’s saga with the Royal College of Psychiatry UK is shocking. His treatment at the hands of these ghouls is disgraceful. These emails from the Royal College display their complete and utter contempt for…
Tracey Maxfield wrote an excellent short post some time ago now about Betrayal Trauma on her LinkedIn page, which I then shared in a short post on Facebook. It was too important and relevant to so many of us living with (and without) dementia not to start a blog about it and quote her here, It…
In the last few weeks, there have been a few articles, blogs or tweets on the impact of others publicly doubting a persons diagnosis of dementia, which I am highlighting here for your weekend reading! One tweet by a professional last week claimed with certainty some people don’t have dementia. Whilst it didn’t name anyone,…
Let’s STOP Pathologising Normal Human Responses For #WAM2018, and on day 3, I am continuing my series of blogs, highlighting why many other people also believe we need to BanBPSD. On June 9, 2018 Susan Macaulay wrote an open letter to members of the dementia community worldwide, highlighted below. She outlines what happened to her…
Jessica Young who is a PhD student at Flinders University and Western University in Canada wrote a review of my first dementia book, and then asked me to respond to her review. The review was published recently in the Dementia Journal, was also published here today, and on her blog, as we have both been granted permission from…
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