The appointment of Mr. Quinn as the new UN Special Rapporteur on the Rights of Persons with Disabilities is extremely positive news.
Congratulation Professor Quinn.
Mr. Quinn takes over the role from Ms. Catalina Devandas Aguilar who has worked tirelessly for persons with disabilities, and who has been appointed as Costa Rica’s ambassadorto the UN in Geneva. Catalina has actively worked to ensure people with dementia are included in this work.
Gerard Quinn is Professor Emeritus in law at the National University of Ireland (Galway). He holds degrees in political science (B.A.) and law (LL.B.) from the National University, is a qualified barrister-at-law (B.L., Kings’ Inns) and a graduate of Harvard Law School (LL.M., S.J.D.).
Read the DAI newsflash about Mr Quinn’s appointment as the second UN Social Rapporteur on the Rights of persons with disabilities.
As a person living with dementia, it is imperative we continue to advocate for dementia as a condition causing acquired disabilities, to one day ensure an ethical and appropriate post diagnositic pathway for us all to live more positively with dementia, rather than being advised to just go home, give up and get ready to die…
In 2019, I was part of the Dementia Alliance International team who attended the Conference Of State Parties (COSP) on the Convention on the Rights of Persons with Disabilities (CRPD), where we hosted the first Side Event ever to focus specifically on dementia as a disability.
This is the statement I made, available on the DAI website:
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.WHO, 2019
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.
Chair, CEO & co-founder
Dementia Alliance International
Tune into the live UN TV webcast to watch the Side Event here