Ten years ago this week, I was diagnosed with a rare form of younger onset dementia, aged 49. An early 50th birthday present from the Universe!
I don’t remember saying thank you, but I should have.
Ultimately, it has been the third greatest gift of my life, and created a deeper purpose than I’d ever had before. But the road has been very rocky, definitely ‘the’ roller coaster ride of my life, and one that has highlighted so many breaches of the most basic of my human rights.
It has also highlighted quite profoundly, and with incredibly thunderous clarity, exactly who were my true friends.
Dementia has also brought me a very large group of new friends, who I love as much as my pre dementia friends, and who are people I often refer to as my ‘Dementia family’.
I’ve also fully experienced what Dr Martin Luther King expressed as the sense of ‘otherness’, to the point on many occasions where I’ve felt that others have treated me as a ‘non-human being’.
Thankfully I’m resilient and optimistic by nature, or the reactions to dementia may not have become a gift! As I’m currently in Geneva this week, covering as many dementia related meetings and sessions as humanly possible, with a bit if help from my very patient Back Up Brain, I thought I would list some of the breaches of my human rights, since diagnosis.
Human Right breach 1:
My doctor told me there was nothing he could do, other than monitor the progression, but he said it was likely I’d progress quickly and be dead by now. He also stopped looking at me or talking to me, until I made it very clear ‘I was still all there!!!’
Human Right breach 2:
The whole of the rest of the health care sector, especially service providers and advocacy organisations told me to go home, get my end of life affairs in order, and start going to dementia day care once a month to get used to it.
I trademarked this as Prescribed Disengagement®️ and 10 years later, it is still happening to most people today.
Human Rights breach 3:
When I failed my driving test, resulting in losing my driver’s license, I ‘lost’ my job! No one, not even the dementia experts td me I had a human right to be supported to stay at work, with Reasonable Adjustments, which should have been automatically provided by my employer.
Human Right breach 4:
The health care sector does not offer not provide funding for Rehabilitation including speech pathology at the time of diagnosis.
Human Rights breach 5:
The health care and service provider sectors do not provide any form of Palliative care and counselling, in line with other terminal illnesses, at the time of diagnosis.
Human Rights breach 6:
I was not provided with Disability Assessment or proactive disability support at any time by the health care or service provider sector, nor any proactive disability support to maintain my independence and live my life as well as possible, for as long as possible.
My university however, immediately set me up with this approach, teaching me to accept and see the symptoms of dementia as acquired disabilities, allowing me to continue living a positive meaningful life.
Signing off with some good news, which may alleviate at least one of these human rights breaches:
So, as I attend the Seventy First World health Assembly this week, it has been one of the greatest joys of my last 10 years, to have been able to ensure Dementia Alliance International is a founding member of a new Association, The Global rehabilitation Alliance. I now have a unique opportunity to ensure globally, that rehabilitation specialists learn that dementia and rehabilitation do go in the same sentence, and all people with dementia have a human right to be provided affordable, accessible rehabilitation.