Working in a not for profit organisation, and as an advocate and activist for people with dementia, I have seen in the sector, and of course, in all other sectors I’ve been involved in, some huge egos. One interesting challenge people with dementia are facing is more than other peoples egos though, it is our own egos, and we must be absolutely resolute to keep them in check.It is not about any individual, it is not about one person being more right than another, it is about our very basic human right to inclusion, autonomy, respect, non discrimination, and so on.
The biggest we face is still by far the objection (subtle, and sometimes not so subtle) that people without dementia are making to us having a voice and getting some of the speaking slots and perhaps even some authentic autonomy. These are the people who have had all the power, all the funding, and/or who have been the voice for people with dementia, who quite frankly simply do not wish to give up their positions of power. This includes those working in advocacy organisations, and family care partners.
Right now, I feel very certain that the most important thing that people with dementia can do to achieve our larger than life many goals including our basic human rights and our disability rights, it to forget our own egos. We must all work together with focus, forgiveness for errors, acceptance of misunderstandings, and with the bigger picture always in the front of our minds. We must let go of the human need to be recognised, and work together as one. Huge global, national, state, regional and local challenges are still ahead of us for some time, and if we do not face them with a ‘unified, global voice‘, as one, we will keep stumbling and in the process, allow others to continue to operate ‘About us, without ALL of us‘.