This week is yet another watershed moment for people with dementia and is another milestone achievement for Dementia Alliance International, who does represent people with dementia globally.
Without waiting for people without dementia or organisations who say they represent us (including to be invited to events like this), we ourselves ensured participation at this global United Nations event, and Professor Mary Radnofsky, through persistence and a passion that it is our absolute right to have a voice there, was given the opportunity to speak on behalf of DAI. Well done Mary!
Below is the short speech given by Mary at the UN yesterday, where she worked incredibly hard and persistently until she received this opportunity to be able to represent Dementia Alliance International and all people with dementia formally at this event, to all attendees.
“My name is Mary Radnofsky. I’m here to represent the Dementia Alliance International, DAI. I am American.
All the members of DAI are people with intellectual [cognitive] disabilities, specifically, dementia — including myself.
We ARE the voice of dementia; we speak for ourselves. Although I was diagnosed many years ago, I’ve just come out 2 months ago.
Systemic discrimination against people with intellectual disabilities in certain cultures, including America, isn’t necessarily intentional but it contributes to the problem of stigma, especially regarding dementia.
My question is: How can the CRPD help to eliminate culturally-systemic discrimination against people with disabilities, especially those of us who have felt we’ve had to hide our condition rather than deal with our society’s stigma?”
Here is the link to the audio and a photo of me speaking before the entire body at the UN Conference of States Parties on the final day of the meeting.
Thank you Mary, for representing us so well, and for braving the trains and traffic and the huge crowds of strangers in spite of living with dementia, for us all. We understand too well the impact and effect being there alone must be having on you physically and emotionally, and are truly indebted to you.
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)
Footnote: The term Intellectual disabilities was used, rather than cognitive disabilities, as this is the term the UN audience would understand. Our next job is to teach them (and others) that dementia does not cause intellectual disabilities in the same way as others living with intellectual disabilities, but is a disease of the brain, causing cognitive impairments, and whose symptoms cause people with dementia varying disabilities, some of them cognitive and some physical disabilities.