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Chris Roberts, Vice Chair of the EWGPWD speaks at the European Parliament of Persons with Disabilities

Wednesday 06 December 2017

On 6 December, the 4th European Parliament of Persons with Disabilities (EPPD) took place in Brussels. More than 600 persons with disabilities from all over Europe attended the event and engaged in discussions about the right of persons with disabilities to vote and participate in political and public life, the next European Disability Strategy and the European Union being a global leader on inclusive Sustainable Development.  During the EPPD, a manifesto on European elections 2019, a resolution on the next European Disability Strategy and an emergency resolution on the European Accessibility Act were adopted by the delegates. In the afternoon, delegates also discussed the Sustainable Development Goals and the importance of taking people with disabilities on board in their implementation. The Vice Chair of the EWGPWD, Chris Roberts, was one of representatives from different disability organisations to give a speech during this session.

“My name is Chris Roberts. I was diagnosed with mixed dementia, Alzheimer’s and vascular five years ago. I represent Alzheimer Europe’s European Working Group of People with Dementia  which has been established since 2012 (http://www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/European-Working-Group-of-People-with-Dementia). Dementia ‘IS a disability’, it is covered by, disability discrimination legislation. And at a domestic level, that means the Equality Act. At an international level, the equivalent is the Convention on the Rights of Persons with Disabilities (the CRPD). Both these laws talk about reasonable adaptations and adjustments, that can be made to ensure that people with dementia and other disabilities,  are included and not excluded, ‘doing with and not for’. We need to make sure that the public services that do exist, are more enabling to help reduce the anxiety and agitation, that people affected by dementia, feel on a daily basis, and not to forget their families that are also affected. A quarter of people in hospitals and prisons have a form of dementia:  what are we doing to make their experience easier? And yet despite dementia being recognised as a disability, good practice is not widespread or fully promoted as the law dictates, any training and awareness that does exist to try and improve this is very weak, tokenistic and inconsistent. People affected by dementia still face numerous challenges in realising their rights and encounter continual stigma and prejudice. There still remains a total lack of understanding about the dementias, as well as multiple discriminations on so many grounds, including age and gender, compounded with bad care, abuse and, mostly non-existent services. The legislation which is there to protect and uphold our rights has been poor, variable, and in some European countries, has been trampled on, or even worse, not considered at all! People affected by dementia are not receiving the protection that these laws are supposed to provide. Dementia is mostly, until the late stages, a hidden or invisible illness. So perceptions of this illness and what the person requires often prevails over the person’s actual needs, which can vary hugely depending on the type of dementia, the environment, the country they reside in, their age, and the support around them (or lack of!). Furthermore, the “social model of disability” which should be applied to dementia, is continually overridden by the “medical model”. This must change! And finally, I would like to say thank you to all of you that have stayed to listen and have “not left us behind”! ‘Nothing about us without all of us’.

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