In June 2019, Dementia Alliance International, held the first Side Event at the Conference of State Parties (CoSP) on the Convention on the Rights of Persons with Disabilities (CRPD) ever to be hosted specifically focused on dementia as a major cause disability, and our rights under the CRPD.
This is important in the context of brain health.
You may wonder how it is related to brain health, but without hope, people with dementia are being failed, and we are still prescribed disengagement, and no hope.
If we get used to a second label or D-word – i.e. disability – soon after the diagnosis, we can and will have hope again, as we then realise dementia is not only the death sentence we are advised, but we have rights to disability support that all others with acquired disabilities receive, to maintin independence for longer.
If my university was able to proactively provide disability assessment and support to enable me to keep living my life, then why won’t the health care sector get on board? This remains a continuing conundrum for me.
People with dementia are still being systematicaly denied equal inclusion, equal disability assessment and disability support, and equal Universal Health Coverage, including rehabilitation.
The goal or dream of this first Side event was for it would be the start of tangible change.
Sadly this has not yet happened…
And although I was pleased to plan and organise this first ever Side Event specifically focused on dementia as a disability, I am however, constantly distressed to have to report that nothing has changed in terms of realising our rights under the CRPD or indeed, any other Conventions.
And worse (at least to me), that no others want to include dementia as a disability in their research or in their work.
Sadly, the lives of more than 50 million people, and each newly diagnosed person (there is a new diagnosis every 3 seconds), are also being negatively impacted becasue of this denial of dementia as a disability…