Recently I received an email inviting me to become involved in a new organisation, and also to endorse it. Although I was sent the final Call To Action, and a list of the founding members, I didn’t feel I had enough infomation to do either, without a conversation.
When I met with this person, I gave what would be seen as quite negative feedback, and I felt the need to apologise, even though this person said there was no need to. But I did promise to further explain what I was trying to say.
In conversation, I did say I don’t believe one person can be representative, nor considered as equal inclusion, especially for such a marginalised group as the one I often represent. I also said that as an activist, I have been thinking about what we are all doing wrong, as very little has changed, and after 20+ years of ‘advocates’ speaking up, the experience of stigma has not changed at all.
Awareness months, Awareness or Action months or weeks, promises by Prime Ministers, promises by the WDC or anyone else, or any other organisation… nothing has yet impacted any real change.
If you don’t believe me, try talking to a few care partners of people with dementia stuck at home (pre AND post COVID), with little or no support.
Talk to new members of DAI, and hear them report that even 12 years after it happened to me, people newly diagnosed with any type of dementia are still being advised to go home and prepare to die.
Then, if you are still not sure nothing has really changed, read an article in the media and you will read disrespectful language being used to label us, in spite of decades of advocacy for respectul language. Very little has actually changed at all, if we are truly honest about it.
Ripples in a pond are no longer enough for me.
My email following the meeting with the person I referred to the beginning of this blog went like this:
“Firstly, I do feel the need to apologize to you for my less than positive response today (now last night for you). I’m 100% sure you and the others who are founders of this new alliance are very well intentioned, and only want the best, and I’ve got a great deal of respect for you all. But I do need to be totally up front about why I think stigma is palpably present in the way you (the group) have approached this.
Your approach, which by the way, is exactly the same pathway most others who set up groups like this take, IMHO is unlikely the right one to effect ‘real’ change globally.
It potentially (has already, in my case) actually reinforced – and kept alive – the stigma. Equal and full inclusion is already past its use by date. It [inclusion] should always be from the beginning, to properly allow for the voices you say you want to include, to have full and useful impact.
Early in our conversation, you said that you wanted me and [XXXX] to endorse this new project/alliance, and that it was important to have highly credible people like me involved, and to endorse it. Many others with dementia may find that flattering. I find it mildly patronising, as if I am being used. It is my feeling, not a fact, which I fully accept.
Whilst you say it is the beginning, and that people with dementia and their families will be the ones driving it, you’ve started ‘about us, without us’, and with an ‘us and them’ approach, as one pwd is not sufficient for it to be anything else.
Yes, I do understand it is a call to action, and you and your colleagues have been influenced by decades of working with persons with dementia, and that your intention is genuine. I am also more than aware how much we desperately need not just awareness and action, but change.
Change that has been initiated by people with dementia and our families, or, at least with us as equals – and with as many of us to represent any new group, committee or project, as the numbers of people without dementia.
I’m fully in favour of [XXXX deleted for confidentiality]. I’ve been advocating loudly for that for almost a decade.
I agree more published journal research papers will not create change.
The group’s final Call to Action statement talks of an international uprising… of millions across the globe joining in actions; how do you know yet, if it will be that, or if indeed, people like me are wanting the same things?
As someone who has actively campaigned against so many atrocities including restraint, abuse and neglect, of course there is interest, but not at the last post. I see my invitation to be included (to endorse this project) very much at the last post.
As we consider stigma, it is important to also consider discrimination, and as social and cultural rather than individual as our focus then leads us to the way discrimination (and stigma) works behind our backs.
Discrimination against those living with illness is often unseen, and as a group or community of persons with dementia, we can participate in practices or actions without necessarily understanding the stigma still surrounding our inclusion. This highlights the systemic processes that reproduce the ongoing disadvantage we face.
There is often a feeling of disconnection as we struggle with the notion of a level playing field, as well as the feeling of “otherness” as we reach out for services that are labelled in ways that make us feel even more different to others, and therefore marginalised. This applies to the way we are ‘engaged’ with research and projects like this. It is not yet a level playing field.
The following by Saul Alinsky is really powerful on the importance of empowering people with dementia and ensuring their inclusion in all levels of discussion about issues and service, support and all things that affect 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.”Saul Alinsky
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. Or worse, we are brought in after things have been set up.
This is partly why I speak out as a person living with dementia, to bring to light the stigma, discrimination, isolation and other negative experiences of living with dementia, as well as attempting to break down some of the other myths.
As Martin Luther King Junior once said; Our lives begin to end the day we become silent about the things that matter.”