Yesterday I received an open letter (via email) from Dr Shibley Rahman, personal friend, colleague and academic in dementia from the UK, regarding the ‘World Dementia Council‘. I asked him if I could publish it here, and instead of the original letter, he has taken more time and committment, and written it as an open letter to Dementia Alliance International (DAI). I asked him if I could publish it here, and have permission, but will also include it on the DAI weekly blog later this week, with DAI’s response to them as well. Thank you for your professional insights Shibley, and for your praise of the work we are doing at Dementia Alliance International. The letter is attached as a pdf here Open letter to Dementia Alliance International
It continues to astound me that organisations and committees such as the World Dementia Council still consider it is appropriate to meet, without people with dementia. The catch phrase, “Nothing about me without me“, first used in the disAbility sector, and which has been used in the dementia sector by people with dementia for over 12 years, still seems to make no difference. We have had a global voice now for some time, and many are still very eloquent and capable, and yet, we are still not being included.
People with dementia do matter, and in their claim fo the most basic of human rights – full inclusion – continuing to exclude us about the very issues that directly affect us and matter to us, simply magnifies and exacerbates the stigma, isolation, discrimination and the myths of dementia, that we cannot self-advocate. Dr Gillings from the World Dementia Council is wrong (see below)… We are no different to the HIV activists, and we can and do advocate and activate for ourselves, and if he has missed this fact, then he must have his eyes and ears shut.
Excluding us from a council as significant as this, would be no different to excluding gay people from a World Gay Council, or Indigenous people, from a World Indigenous Council, or disAbled people from a World disAbled Council. People with dementia deserve to be at this particular table, and the lack of insight, and lack of respect afforded us by not including us, however unfortunate, was simply too predictable.