I was in Sydney last week for the HammondCare RiskyBusiness2 conference, and on Friday I co-presented with the vice chair of the Alzheimer’s Australia Dementia Advisory Committee (AADAC) about the set up and activities of that committee. My other presentation was on models of care and ways of keeping people with younger onset dementia employed. If I have the energy, I’ll definitely write a more fully reflective blog about the conference at the end in a few days, but as I’ve not even done that for ADI yet, the chance is a little slim! I do however, have a few thoughts and comments to share.
My initial issue with conference is that it was themed, “This time it’s personal”. I am not able to see how it can it be personal for everyone, if they don’t have anyone with dementia as an invited key-note speaker, if it doesn’t treat and include all the stakeholders in the same way. I discussed this point with the convenors at length some time ago, who said they completely agreed with me, and in fact agreed with me on this point over two years ago, and yet they still did not see it as important enough to include a person with dementia on the plenary program. The second issue I have was a widely promoted “High tea” for carers, to kick off the conference, and nothing over the course of the conference for people with dementia; once again, it is personal for them, but not for people with dementia.
As Chair of AADAC, I feel a deep responsibility to represent the ever-increasing thousands of people living with dementia in Australia and around the world, to fight for equality and our basic human rights. This includes… equal inclusion at conferences that are about us, when they are conferences that are promoted to an audience that includes us.
During a committee meeting for another conference earlier this year that I was told not having people with dementia as plenary speakers was because they don’t have capacity. I replied with a ‘thank you for the insult’, and the suggestion many of us still do, even though we may have changing capacity and disAbilities that need supporting, in the same way as any other disabled person.
The ‘fight’ for our basic human rights goes on, and the conference this week was no different. I will speak up, again and again, until people without dementia actually bother to not only listen, but change their actions.
My question today, is does only including people with dementia in a concurrent session of a conference fully include us, or does this in some way go towards continuing and exacerbating the stigma, discrimination, isolation, loss of identity and self esteem, and exclusion of people with dementia?
Please give me your thoughts on this… I do know if I was writing a blog about conferences for Indigenous Australians, the gay community or the disability sector, I would not have to ask this question at all, as not only would they be included at every level of the event, they would be involved in the organisation of the conferences about them.