In 2014 I wrote a blog called there is big money in dementia. I’ve just re read it, and also the many comments made by some of my wonderful blog readers. I am constantly reminded about this problem, and whilst we need a thriving industry to better support people with dementia and our families, it should not be at the cost of fracturing loyalties between people with dementia, for one’s own purpose or business. This of course, if what is happening all around the world, as I see organisations ‘engaging’ with consumers, making their lives and contributions seems like gold, and yet, ensuring the voice of the global community of people with dementia is weakened.
Many are inspired to set up a business by a partner, a mother or a father who had dementia, and many, now that he is no longer with us, are ‘inspired by the late Dr Richard Taylor’. Richard, in all the times I talked to him, wanted PEOPLE WITH DEMENTIA to be the one’s speaking up and setting the ground rules and guidelines for their lives, not the people without dementia. He wanted us to speak for ourselves, and despised the many who were using us for their own glory. This is, in fact, one of the last things he said to me, after he recorded the Foreword he wrote and recorded for my recently released book.
If those who proclaim to be inspired in their work by someone with dementia, and continue to promote their businesses using their relationships with us, yet do not start to employ some of us, or who ‘engage’ with us but at the same time cause us to become a fractured community, then I will not believe their intentions to be completely honourable. I will never believe anything other than there really is big money in dementia. It is my ultimate litmus test, as it is for the community of others living with other disabilities. It was grand to legislate for wheel chair ramps, but actually employing people with disabilities took a long time, and still has a long way to go. For people with dementia, I suspect it is decades away until people start to do the right thing. These are the ones who are passively stigmatising and discriminating us, and just like passive aggression, it is doing us harm.