This week, it is Dementia Awareness Week in the UK, and I have been publishing daily blogs on the Dementia Alliance International website as part of our contribution to it, in part because we have a lot of UK members, and also to highlight some of the presentations at ADI2015.
The issues or topics facing people with dementia that fascinate me the most, are the ones where advocacy is the hardest. I have never been part of a marginalised group (apart from being short!) until being diagnosed with dementia.
I had no real insight into how difficult change can be, nor how very hard discrimination and stigma is to live with.
But being an advocate for myself, and for others is worthwhile, even though it can attract a few enemies along the way, people who do not like their positions of power or knowledge being challenged, people who have had the voice on the matters that affect us prior to us speaking up, who have been considered the ‘experts’ up until now.
They are still experts in their own right, but they do no, nor should they, consider themselves on the lived experience of a diagnosis of dementia. Just like someone living with cerebral palsy, we too, are the only ones whose voice is authentic.
Watching anything from the sidelines, is simply that. A view, from the outside, but it is not a view from the inner lived experience.
Whilst people with dementia have not taken to the streets like those participating in a physical political rally, we have taken to the internet waves in huge numbers, and so, our advocacy is as much about being activists as being advocates.
We will no longer accept anything about us without us, and will continue to speak up for this basic human right until it becomes a reality.
We want change; we want improved care, respect, our basic human rights and autonomy; we want full inclusion and a voice; most importantly, we are here to stay.
Wikipedia says of advocacy: Advocacy is a political process by an individual or group which aims to influence decisions within political, economic, and social systems and institutions. Advocacy can include many activities that a person or organization undertakes including media campaigns, public speaking, commissioning and publishing research or conducting exit poll or the filing of an amicus brief.
Wikipedia says of activism: Activism consists of efforts to promote, impede, or direct social, political, economic, or environmentalchange, or stasis. Various forms of activism range from writing letters to newspapers or politicians, political campaigning, economic activism such as boycotts or preferentially patronizing businesses, rallies, street marches, strikes, sit-ins, and hunger strikes.