Tuesday, July 28, 2020

Until We Are All Free

My friend Kate, who lives in Australia, wrote the following:

I will only feel like I’ve achieved my advocacy goals when we are all FREE.


– from stigma for having dementia

– from discrimination due to dementia

– from confinement in nursing homes

– from segregation in secure dementia units

– from chemical restraint

– from physical restraint

– from Prescribed Disengagement®️

– from neglect in nursing homes

– from abuse in nursing homes

– from any form of Institutional ‘Care’

– from negative and demeaning labels

– from the harmful and false construct known as BPSD


My reply to Kate, 

You know I respect you and your beliefs and am behind you in your fight on behalf of people living with Dementia. 

I find, however, that I still have to react to your post. To realize your list of needs for freedom for people with dementia, we need to change a lot on many fronts. Individuals, families, and communities need to change how they interact with all of those in need. We need to help all people to be loving, compassionate, and kind. We need to choose to be good to each other.

We need to work towards governments and big businesses moving away from power struggles and greed. We need to do away with religious and racial persecution. We need to leave behind police brutality. We need to change the way medical needs are met, how we provide better education to the masses and change how we feed our people.

In summary, we need to change most of what people on this earth have been, maybe since the beginning of time. How long will that take and when do we hope to accomplish the absolutely important freedoms which you list? For those of us involved with Dementia, living it, or loving those who live it, soon is not soon enough. 

Where do you think we should begin to make the most differences for people living with Dementia? I know that NOW is not soon enough, and one or two areas is not good enough, but we also know that change is so slow that maybe we will not see much change in our lifetime. So my question is where do we begin to help success be the rule in these changes and not frustration, anger, and fear? And how do we continue?

You have done so much to bring awareness to so many issues affecting those close to Dementia. You have described, listed, given sound-bites to, clarified so many of those issues. Now we will do what we can and continue the fight. And it is a fight. 

Don't lose faith in your ability to make change Kate, just be a little easier on yourself in the timing and the amount! Maybe not in your lifetime. Too late for Gregory, my husband's lifetime. Maybe not in my lifetime. We need to keep on taking small steps, sometimes a few forward and sometimes a few backward, and we need to feel good that there is progress, but this might take more time than you or I have! 

Kate, I believe in you. I believe you have more than met your advocacy goals. More than most others fighting the fight!

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