Over the last decade or so, organisations, large charities, businesses, even the World Health Organisation, as well as many local councils and governments have been saying they support and promote inclusive communities for everyone.
Some go as far as saying they provide training for them. In the dementia sector they are referred to as Dementia Friendly Communities or Dementia Friendly Initiatives (DFC’s/DFI’s), although I note many are now using a heading or sub heading which includes the term, Inclusive Communities.
From my experience, changing one word or term, is unlikely to improve outcomes, even in the long term. Many who follow me here will know I have many issues with the term dementia friendly, and that I believe further labelling people with dementia by their disease is causing harm, rather than improving outcomes.
Should we be happy to call it awareness, but then not ask, but at what cost?
Awareness is still scant, and stigma and discrimination are still very much the lived and daily experience of those of us diagnosed with dementia and our families, so it would apprear, these campaigns are making very little difference to the real lives of real people living living with dementia, or suporting someone with dementia in our communities.
We do need Inclusive Communities, so they are accessible and inclusive for everyone.
Being inclusive also means access must be provided, also a right under the Convention on the rights of Persons with Disabilities (CRPD), as without equal access for all, it is not inclusive.
Because my views are out of step with the majority, I’m regularly – and often very proactively – excluded from most of the conversations around DFC’s now, a sign of the lack of equal inclusion and full diversity.
A few others are starting to question DFC’s now too, so I’m not feeling quite so alone… Some are now even willing to be public about their questioning, like Christine Thelker; a few others I know who agree, are currently too ‘nervous’ to be public with their views. It is very disturbing to report some people with dementia have told me they fearful of advocacting their own truth on this (and other topics where whey disagree with the majority), for fear of being ‘ex-communicated’, and further excluded.
But back to access, which is needed for people with cognitive disabilities to be equally included, and which I believe strongly, needs to become part of the DFC movement, as that is not going away.
In 2016, Scope Australia launched their Communication Access training and symbol. They say:
When you see this symbol, it means that the business or service you are visiting is communication accessible:
- Staff are welcoming and treat everyone with dignity and respect
- Staff are able to communicate successfully with people with communication difficulties
- Communication tools are available to help people get their message across and understand what people are telling them
What is communication access?
Imagine what it would be like if you were unable to speak or had difficulty getting your message across. Communication access aims to create a world where people who have communication difficulties are able to communicate successfully with everyone. There are some simple things we can all do to remove communication barriers in the community.
Since then, I have been including information about SCOPE’s Communication Access in most of my public presentations about dementia, and in particular when I talk about dementia (friendly) inclusive communities.
I’m actually, perhaps irrationally, hopeful organisations will train their staff in it. The image above is of a slide I used at a national conference in Australia, which refers to it, and I mentioned in my presentation that for any community to be dementia friendly, then it also needs to promote and provide communication access.
If our community is legally obliged to provide wheelchair access, and access for people with hearing and or sight impairments, then it stands to reason they must also provice communication access.
The very organisations who are promoting dementia friendly seem to me, to be the very organisations who should have their staff attend the SCOPE Communication Access training sessions, as many of the people they advocate for, provide services for, and receive significant funding for, have communication disabilities.
Not to, would be the same as People With Disabilities Australia not providing wheelchair or other disability access their their staff or members.
Find out more about the SCOPE Australia communication access
Download the Communication Access for All booklet and read more about communication access.