Once again, I have committed to post a daily blog in September, my feeble attempt at a contribution to Dementia Awareness Month, even though I am under no illusions of the value of doing so. Todays is about not giving up.
Those of you who have read my blogs this month will know I have been feeling a significant level of frustration about the last 25 + years of advocacy. The reason why is that they do not seem to have provided the desperately needed change that people being diagnosed with dementia today, and their families need.
In my experience, most self advocates or advocates/activists who volunteer for an orgnisation or a cause such as dementia, usually do it because they have a personal experience (self, or a family member or close friend), and want ‘it’ to be better for others, now or in the future. That is very often why people are willing to be participants in research… to make things better for future generations.
The problem with dementia advocacy and activism, is that being diagnosed with dementia today, and the post diagnostic care and support a person and their family will receive, compared to how it was 12 years ago, has not changed. People are still being Prescribed Disengagement.
That is always one of my ‘litmus’ tests for whether my own activism or advocacy has been effective, and is one of the reasons I am questioning almost everything!
I suppose I could be called impatient, but many others have been saying and asking for the same things, for much longer than me. So no, I don’t see myself as impatient. Outraged, yes, but impatient, no.
Anyway, I’ve been a bit despondent about it all, including if there is still value in activism and advocacy, and although I will probably never give up, I am asking questions and looking for new ways of doing things. It is not easy to keep going, when it is blatantly obvious so little has changed.
The universe is good at supporting me at times like this, and a few days ago I received the following positive feedback on Facebook, and it it just what a few of us needed to keep going!
Another great article by Kate Swaffer. I’m recent to this “table” but from what I read, what the directive was back when Kate Swaffer and Christine Thelker, Wally Cox, John Sandblom, Julie Hayden and others were receiving their diagnosis, nothing has changed to when I got my diagnosis 18 months ago.
Go home, prepare to die.
What I can say though that IS change, is the change that these ladies and others who are part of the dementia network of support on Dementia Alliance International and Dementia Mentors are offering to those of us with dementia.
You guys have made the change that others of us needed desperately-you’re here-with us and sharing life and hope that wasn’t offered at our diagnosis. Beyond that I don’t know if real change has been affected but what you have offered those of us who have been fortunate enough to have found you…well, that is invaluable and real, REAL change.
If people with dementia can do this, why aren’t all of the organisations who claim to advocate for us, or provide services for us, also doing it?
Being a realist is equally as important to me as being hopeful and optimistic.
I love to work hard and have always been willing to work more than is required if I believe in something. But I also prefer to work smart, and I’m still grappling with the how and why, ‘we’ have not been working smart enough to impact real change.
Another invitation to join a new group or alliance, an invitation to speak at another conference or participate in a meeting, another survey, another report, another research project that is rarely translated into practice; these are not enough. Worse, it has not been a win-win. Feeling valued is not enough, nor is being meaningfully engaged.
We’ve been doing those things for decades, with very little tangible change to show for it. That is not success.
‘If it ain’t broke, don’t fix it’, is very good advice… The problem is in the field of dementia, ‘it’ is broke, and we must fix it.
Thank goodness what we do, for DAI members has had a positive impact.