We are well over half way through Dementia Awareness Month, and I’m tired, but continuing with my daily blog series, in an effort to create new thinking, and discussion. Some of the topics I’ve chosen are difficult to write about, like this one,.

They may even cause offence to others, including causing dissent amongst some self advocates. That is not my intention. My intention is to be really honest and open, and to think about how we can move the needle further, and also to get some tangible results in my lifetime!

As I am very doubtful we have made any ‘substantive change’ (there are others who agree with me as you can see by the comment from Twitter), it is time to ask what we must be doing wrong. Being included, so we can ‘feel valued’, and attending meetings where we have fun, tea and cake, is not change.

As Christine Thelker said in her blog yesterday, although she is never going to give up, her litmus test is also more about the services and diagnosistic experience (or lack of…).

25 or 30 years of advocating and seeing little to no change in how Dementia is treated, how a diagnosis is handed out, how often we are only given a place in the roster and on the stage at conferences to quiet us and say yes we have a person with the lived experience here, it a carrot and nothing more a lot of the time, and it’s shameful.

From Unrest in the Advocacy World, ChrissysJourney

If we keep doing the same thing, and keep getting the same results, then we must ask some hard questions, when the results are not what we are actually campaigning for. An invitation here and there, a funded trip, or tea and cake is never going to be enough for me.

So far, even after more than two decades of advocacy or activism, the results have not even come close to what we’ve been campaiging for.

This Saul Alinsky quote which I posted as part of another blog recently is important. It really speaks to me of the importance of empowering people with dementia or any form of ‘otherness’ such as disability to speak for themselves and ensuring their is inclusion in all levels of discussion and policy making about issues and about services, supports, policy, programs, and in fact, about everything that effects them:

We learn, when we respect the dignity of the people, that they cannot be denied the elementary right to participate fully in the solutions to their own problems.

Self-respect arises only out of people who play an active role in solving their own crises and who are not helpless, passive, puppet-like recipients of private or public services. 

To give people help, while denying them a significant part in the action, contributes nothing to the development of the individual. In the deepest sense it is not giving but taking—taking their dignity. 

Denial of the opportunity for participation is the denial of human dignity and democracy.”

People with dementia are still being left out of many of the conversations and events about them, and although this is changing, it is only changing slowly, and far too slowly. After 25 years or more of advocates asking to be included as speakers at conferences, events and meetings about them, I am still very often having to email organisers to ask why they have no speakers with dementia on their programs.

Or, the one or two people who agree with the organisations inviting them, are the ones who are always invited…

It seems the voices of the many people without dementia who have been used to telling others, and us, what it is like for us, and what is best for us still prevail, in spite of more than two decades of advocacy.

One person with dementia on a Committee, a Board, a Group or an Alliance is never enough.

After all, as attributed to the late Tom Kitwood, “if you’ve met one person with dementia, you’ve only met one person.”

We all experience dementia differently, and it is important that the many voices of dementia are included, even if they disagree with you.

If you don’t include everyone, even thouse who disagree with you, it is not equal inclusion. It is selective inclusion AND exclusion. It is probably even more important that those who disagree with you are included..

Surely?