The International Day of People with Disability #IDPwD is held on 3 December every year, and is a United Nations observance day aimed at increasing public awareness, understanding and acceptance of all people with any type of disability.
Each year the UN announces a theme to observe for International Day of People with Disability, which provides an overarching focus on how society can strive for inclusivity through the removal of physical, technological and attitudinal barriers for people with disability. This has been occurring since 1992 when the General Assembly announced 3 December as the International Day of Disabled Persons.
The annual observance of the International Day of Persons with Disabilities was proclaimed in 1992 by the United Nations General Assembly. It aims to promote the rights, quality of life and well-being of persons with disabilities and to increase awareness of their situation in every aspect of political, social, economic, and cultural life. This year, our past Chair and CEO, and co-founder of DAI, Kate Swaffer writes about why she believes it is critical to manage and supporting dementia as a disability. Thank you Kate.
The Dementia Alliance International (DAI) membership joins the rest of the world on Friday 3rd December 2021 to observe the International Day of Persons with Disabilities. The theme this year is ‘Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world’.
Dementia is a condition causing disabilities.
During this years celebration of people with disabilities, the 2021 theme is ‘Fighting for rights in the post-COVID era.”, and we are observing the challenges, barriers and opportunities for people who live with disabilities, in the context of a global pandemic.
My hope for this UN Observance Day is that dementia is a condition causing disabilities will be embedded into policy and practice everywhere. We must fight for this right, and interestingly, the covid pandemic has not only highlighted our experience of islation, discrimination and stigma, it has also highlighted how many of our rights are being denied.
Not to treat dementia as a condition causing acquired cognitive and other disabilities, is a major barrier to improving quality of life and reducing stigma and isolaton. To do so, is also an excellent opportunity to create real change.
As I continue to advocate about my continuing concerns of the lack of dementia being well recognised as a condition causing disability in academia, in policy and in service provision, I have to work har don retaining HOPE, which members tell us joining DAI also gives them.
This is especially so, when for example, a research project is specifically concerning post diagnostic care, support and services, or quality of life for people living with dementia.
Since my own diagnosis of a younger onset dementia 13 years ago, I am becoming increasingly distessed by the lack of recognition of dementia as a disability and lack of proactive support for the more than 55 million people with dementia to live with more hope, and to live more independently for longer.
People newly diagnosed with dementia already have their hope taken away at the time of diagnosis, so to have it taken away again (repeatedly) due to others refusing to accept that dementia is a condition causing cognitive and other disabilities, is systematically denying us proactive disability support at the time of diagnosis and takes away more hope of living positively with a diagnosis of any type or cause of dementia.
Having been advised by every professional working in dementia (except my neurologist) to ‘go home, get my end of life affairs in order, give up work and give up study…’ and even ‘to get acquainted with aged care so I would get used to it’, it is curious to personally know so many people with dementia all around the globe who have lived many years, some even decades, beyond the projected life span they were given at the time of their own diagnoses, and many of these people say it is mostly due to managing dementia as a disability.
Thankfully my university taught me to see the symptoms of dementia as disabilities and provided me with disability assessment and then very proactive disability support to keep living my own life, not too long after diagnosis. Of course, I did not especially like accepting another seemingly negative D-word. Accepting I had a diagnosis of dementia, and the stigma and discrimination due to the label of dementia was bad enough but accepting dementia as a disability initially added to my misery.
However, this is a critical step that was hugely important in my ability to live more positively – and importantly, more independently – with younger onset dementia.
- Dementia is listed as a major cause of disabilityand dependence on the WHO website
- In 2010, the World Health Organisation launched the updated version of the WHO DisabilityAssessment Schedule (WHODAS 2.0), the internal classification of functioning, disability and health, and at the same time stated on their website under Dementia Facts, that dementia is a condition which is the leading cause of disability and dependence. (It now says a major cause)
- People with Younger Onset Dementia (YOD) in Australia now receive services via the NDIS (a government funded disabilityservice)
- Many universities globally now see and support people with dementia as people with acquired disabilities, following the lead of the University of South Australia, who to my knowledge, were the first to do this for a person with dementia after my diagnosis
- It is recognised by the CRPD Committee and the Special Rapporteur on the Rights of Persons with Disabilities as a condition causing disabilities
- The International Disability Alliance accepted DAI as an Observer member in 2016, as they also now recognise dementia as a condition causing acquired cognitive (and other) disabilities
- The WHO re-categorised it in 2017, as a condition causing cognitive disabilities (it had been listed under psychosocial disabilities before then).
If we ignored something as important as this in any other health space, everyone would be advocating for change.
Whilst it may be unpleasant accepting a second D-word – that dementia causes disabilities is a reality and being advised this soon after a diagnosis potentially allows many more people to be distressed about their diagnosis for a shorter period, and to become more proactive about their diagnosis by actively seek disability support.
Everyone has the right to knowledge, and to appropriate care and support.
Everyone has the right to be told that dementia causes disabilities.
Following stroke, people are advised of their ‘residual (and other) disabilities’ and almost immediately offered rehabilitation and other support to live with them. That is not easy to accept either, but it is necessary to ensure the best outcomes and highest quality of life for someone after a stroke.
If a university can provide disability assessment and disability support for a person diagnosed with dementia to continue living – why then, is it so hard to by everyone else? I believe it is critical if we are ever to improve post diagnostic experiences for people more newly diagnosed with dementia.
Not to tell people when first diagnosed with any type of dementia, that the symptoms are progressive disabilities, goes against their most basic humna right to knowledge about their condition.
Not to, also denies them disability assessment and support soon after diagnosis and an awareness tht for many, it may be possible to maintain independence and a higher quality of life for much longer.
It is akin to not telling a person newly diagnosed with cancer there are treatments that may - or may not - work.