From the perspective of empowering people in minority or marginalised groups, empowerment needs strong leadership, vision, passion, a ‘never-give-up’ attitude, and a significant strength of character to take the ‘shit’ dished out by those who don’t want them to have a voice. These people speak out against minority groups, due to ignorance, or because they the like the status quo of power they have because of the absence of a particular voice.
Most people with dementia are so dis-empowered by the “Prescribed dis-engagement” served up to them at diagnosis, they start to believe they not only can’t speak up for themselves, they don’t have the right to. This makes it easy for them to take on the persona of ‘victims’ or ‘sufferers’. Some will argue against this statement, but I see it happening, regularly. They give up, because of the prescribed disengagement. On top of this, the potential for the family or friends who ‘care’ for us is to become martyrs, as they are told they will soon have to give up work and ‘take on the role of full time family care-giver’. This also sets them up to take over from us, rather than support and enable us. This is why my husband is called BUB rather than carer or family care-giver.
So, how do we empower people with dementia to speak up, and more importantly, how do we get them to see the need to speak up?
So many unanswered questions, and challenges. Speaking up for our basic human rights is not only important, it is imperative to the future well being and quality of life of people diagnosed with dementia. Sadly though, the organisations who claim to advocate for us, generally still do not fully include us. Most conferences regularly include family carers as speakers, but not people with dementia, and locally, I have had to ‘fight’ for this to happen, although am not there yet. How can an organisation, setting the boundaries for what a dementia friendly society should be, exclude us, and get away with it? No longer is this acceptable, and nor should it be.
During a committee meeting I attended recently, it was obvious some members of this group were subtly (but definitely) discriminating against those of us in the room with dementia; one member was quite openly rude and disrespectful, and overall there was some in-house stigma and other less than helpful thinking. It was useful, in that it forced some ‘issues’ out onto the table. The ‘shit’ flowed, which is what a wonderful retired psychologist friend of mine Kevin Harvey would say, which can be nothing other than healthy. He and I both agree, we all need to ‘shit’ every day, not just in the literal sense of that word. It is more helpful to do it in private, but in this case, it was a group forum, and so privacy was not possible. It is a tough gig to have the courage to speak up when you are the minority, and last week it was three voices amongst 20.
I believe this and many other issues such as delayed diagnosis, stigma, discrimination and isolation, and changing the prescribed disengagement to continuing engagement, needs a strong, loud and consistent call to action, not by those without dementia, but by those of us with dementia, who still have a voice.
People with dementia must take control over their lives and futures, and must take action, or others retain the control over us.
Dementia Alliance International is making a global call to action. It is the first international group with membership exclusive to people with dementia. Please, if you have dementia, or you know someone with dementia, circulate our newsletter when it comes out later this week, and website details.
If you have dementia, empower yourself to speak up and join this movement, and encourage others to join with us to strengthen the power of justice and improving our basic human rights.
Consider supporting our fundraising efforts.
Become a friend on the Advisory Panel.
Advocate for us. Advocate for yourself.
Help empower those you know with dementia to advocate for themselves. They (you) can, I am absolutely sure of it. We just need everyone to know it is possible.