Civil Society Statement presented at the Conference of State Parties (COSP) on the Rights of Persons with Disabilities (CRPD), on June 13, 2019, presented by DAI Chair, Kate Swaffer.Watch the full Side Event of the UN TV webcast here.
Distinguished Chairs, speakers and delegates.
Thank you for the opportunity to make this statement on behalf of Dementia Alliance International, a registered charity providing advocacy and support for people with dementia. We are also celebrating its 5th birthday.
Started in 2014 by 8 people with dementia including me, it has become the global voice of dementia.
We started with a dream, specifically for full and equal inclusion, and to be respected and valued as members of society. We also advocate for equal access to universal health care.
This has become our dream for the more than 50 million people with dementia, and each person newly diagnosed every 3 seconds.
That is also why DAI has organised a Side Event, taking place on Thursday morning.
No one and no organisation has ever represented people with dementia in this way, at this conference before.
Being diagnosed myself with dementia aged 49 taught me what the late Dr Martin Luther King Jnr. called ‘that sense of otherness’.
I had not been stigmatised or discriminated against, except as a woman.
I had not come from a deeply marginalised group.
However as one of the 50 million people currently living with dementia who’s life was thrown in the bin at the time of my diagnosis, and still experiencing stigmas and discrimination.
Dementia is a significant global issue; it is the 7th cause of death globally, the 5th cause of death in America, and the 2nd cause of death in Australia.
However, after a diagnosis, we do not receive access to universal health health care.
We do not receive post diagnosis rehabilitation or most other allied health services to support our independence or social inclusion.
We are segregated from others when we require assisted living.
We are institutionalised.
We are restrained physically and chemically, with no consideration of our rights.
In society, clinical practice is only provided, when supported by strong evidence based research.
However, the use of the concept Behavioural and Psychological Symptoms of Dementia (BPSD) was implemented, with no evidence based research was implemented.
This has lead to further chemical and physical restraint.
Secure dementia units, also a breach of many of our rights, including our right to freedom, are evolving into dementia villages, again with no evidence based research for their value.
Disease or disability specific villages are little different to ghettoisation of groups of people.
They are not a solution to those people with dementia who do need assisted living.
We are daily and systemically being denied our human rights.
Unfortunately, people with dementia who decide to manage their symptoms as disabilities and proactively seek disability support, are also often demonised for daring to live positively.
Approximately 5 years ago the Dementia Envoy for the World Dementia Council Dr Gillings said people with dementia may need to take to the streets and march on the steps of parliaments.
This is the beginning of that march, so that people with dementia are not left behind in the 2030 Agenda.
Thank you
Kate Swaffer
Chair, CEO & co-founder
Dementia Alliance International