Over the last fourteen years, I have moved from the loss of hope and the desperation caused by the Prescribed Disengagement® given to me by everyone except my neurologist after the diagnosis of a rare younger onset dementia.

Disturbingly, I’m acutely aware this prescription of disengaging from our pre diagnosis lives is still being handed out to newly diagnosed people with dementia today, and it has made me question every single step of my own activism, as well as the advocacy and work of others.

It is one of my litmus tests for whether advocacy has been effective.

The charities, the researchers, and many other organisations and individuals have quite literally spent millions if not billions of money on trying to bring about change, whether through disease modifyfing drugs, the very illusive cure, or indeed, for improved care. Of course, we are all well intentioned. There is a but here though, as too many seem overly focused on personal legacies, rather than on the outcomes of their work.

We all need to shake things up a bit, as the legacies of others are not what’s important here.

Anyway, in my quest for change, I’m also very aware of the constant need for me to question myslf, and to change. Dementia has a peculiar and uncomfortable habit of forcing me to face and accept change, whether I like it or not.

But I have recently been made aware that some think I am not listening. I’ve even heard that some think I have “succumbed to dementia and am not being as rational as I once was”. Both of these things may be true and hence, I decided to spend time reading, researching, and most of all, looking in the mirror.

This is where I always start when others speak about me behind my back, or disresect me by not bothering to respond to me, and especially when I am told anyone thinks I am not listening. It is true, I can be dogged, and I do have some strong opinions about dementia; but I do believe I am still listening, and have not slipped into dementia-land so far that I am totally irrational. My close family and friends agree. I also embrace learning and change.

For many years, I put up with being ignored, even with public insults, in my quest for rehabilitation for all people with dementia. Now, others are creating whole new careers on this topic… and the World Health Organisation is even developing guidelines for demetnia and rehabilitation. I am glad I didn’t give up.

Honesty from others is often painful, and quite hard to take, but it is critical to improving ones self, ones practice, and ones thinking… If we refuse to look in the mirror, it is likely nothing will ever change. And on reading that blog on looking in the mirror, I can honestly say that I like the me much more now, than the me of the past.

Anyway, that’s enough rambling for one blog, I’d better get onto what I started out to write about.

After hearing some think I am ‘not listening’, I began reading, and researching, starting with this book (image above), Blindspot: Hidden Biases of Good People.

I’m a good person, and most people I know are good people too. In the dementia sector, we all want change, we all want things to be better for those diagnosed, and our families. But most of us have blind spots, as well as a swag of unconscious biases, and for me, it is time to start unpacking this.

This video, Stereotype Threat: A Conversation with Claude Steele, highlights how easy it is to not only treat people as other, but how we might be able to change that.

Stereotype Threat: A Conversation with Claude Steel.

“One only has to turn on the television to view a plethora of stereotypes about people based on gender, race, religion, physical appearance, intelligence—the list goes on.”

This is very relevant to dementia, as the gross underestimation of our potential and capacity continues. Worse, if we dare to differ, on almost anything, we are mostly ignored. Challenging anything too often causes others to think it is due to ‘our dementia’, and whether this is their inconscious bias, or ego, or whatever, it is irrelevant. Perhaps everyone needs to accept it is happening, and look in the mirror more.