Why are we so white?
I had the great pleasure to travel to Nottingham yesterday to work with a small group at Trent Dementia. The travel was not a great pleasure, via three decrepit trains but two wonderfully helpful buses/drivers.
I met four lovely people, Jane, Shelagh, Jean and Ghazal. We were starting to plan an event in Nottingham to kickstart engagement between and with people living with dementia. There seems to be little going on there for PLWDs, no DEEP groups. although there is a DAA. But I wonder how active it is as no one round the table had heard of it.
So we tossed around some great ideas, and focused down on having a number of small room meetings where people could talk about and share feelings about specific areas of living with dementia. We wanted to avoid a big auditorium type conference, as they achieve very little action usually. And people living with dementia need small groups and the chance to ask for clarification without losing track.
But then we got onto the cultural and ethnic make up of Nottingham. Four out of five of us were white and well educated and articulate.
How could we reach, and get people from, the rich mix of cultures to come to the event and any peer groups we set up?
I understand that dementia is more prevalent in people of Asian ethnicity than white English. And they often live in a culture of keeping it hidden at home. And then, Afro Caribbean and eastern European populations? How do we reach these people? If white British people find it hard to find support, how much more difficult is it for them?
Lets go further. My friends at SAND (Safe Ageing No Discrimination, Shropshire) have told me (and the DAA members) about some of the challenges they face. The LGBT community often live in fear of coming out, of explaining who they are, when facing hospitals, care homes, and other situations where they may and often do face discrimination and hostility.
Why the hell should a gay person living in a care home feel they have to hide their identity, the things that make them who they are? And why are they not involved and engaged in the work we do, promoting awareness and dementia friendly communities?
And I’ll tell you what, unless we white straight people, who are usually the majority in many areas in commissioning services and managing providers, go out and find and talk to these people, they will continue to be in the shadows.
And that’s plain wrong.
As with dementia, we are all different. All individuals, all with different lives. No one life is better or worse than another.
And yet…we are such a white, straight, group of activists! We really must do better.
Note: I apologise if I have in any way offended anyone in this blog. There are of course fabulous exceptions to every thing I have said.