Dementia and disability rights #DAW2017

The last few years, in particular for people with dementia representing themselves and since the WHO First Ministerial Conference on Dementia in March 2015, the pace of the activity towards a human rights based approach to dementia that also includes full access to the CRPD and other Conventions has been a major focus of DAI. Our newly appointed Human Rights Ambassador Professor Peter Mittler CBE presented last October in Geneva at the Social Forum, and his speech then is as relevant today as it was then. Next week, at the World Health Assembly being held at the WHO in Geneva, the Global Action Plan for Dementia ia expected to be voted in. For now, read Peter’s speech notes from last October as they explain well why people with dementia are pursuing disability rights. Thank you Peter.

Social Forum, October 3-4, 2016 

Professor Peter Mittler CBE

Side Event: Under-represented groups of persons with disabilities

By Professor Peter Mittler CBE, University of Manchester and Human rights Advisor to Dementia Alliance International

“Thank you for giving me this opportunity to speak about the human rights of people living with dementia.

I’m the Human Rights Advisor to Dementia Alliance International and I’m here because 50 million people with dementia world-wide have been excluded from the CRPD by governments legally committed to it through ratification.

DAI was created in 2014 for the main purpose of achieving our human rights through the CRPD. All of us have a medical diagnosis of dementia. We now have 2,500 members in 38 countries and communicate through the internet and social media, run eight weekly support groups in different time zones and provide seminars led by our members or by leading professionals, researchers and policy makers.

Although people with dementia are indisputably included in the characterisation of disability in CRPD Article 1, governments are not including them in their implementation of the Convention. This may not be intentional but reflects a wide-spread perception that dementia is an illness, not a disability and therefore the responsibility of Ministries of Health rather than across government. This could be considered as an example of systemic discrimination against millions of people.

Furthermore, several countries and two regions -Europe and Latin America- have launched dementia strategies which don’t appear to have drawn on CRPD Principles and Articles.

WHO takes the view that dementia is the biggest Public Health challenge facing every government and makes fuller use of CRPD than any other UN agency. Its 2014-2021 Global Disability Action Plan fully reflects CRPD Principles and Articles, as do the revised Guidelines for Community-Based Rehabilitation – clearly highly relevant to people with dementia in Low and Middle Income Countries. Its new Quality Rights Indicators are also built on five relevant CRPD Articles.

People with dementia are already being Left Behind in the 2030 SDGs, now being renamed Action 2030. This reflects the absence of the dementia world from the UN global consultations which resulted in the commitment to Leave No One Behind.

The fact that we all live longer than our grandparents means that the number of people with dementia will treble by 2050. The rate of increase will be greatest in Low and Middle Countries, most of which have very limited services, not even diagnosis.

People with dementia face one form of stigma or another in every country. They have been accused of witchcraft and bringing shame on their families, chained to trees and even burned alive. Even in China, India and other countries, the tradition of respect and provision for older people is being eroded by younger people flocking to cities in search of work.

AN OECD study of 37 High Income Countries has concluded that “dementia receives the worst care in the developed world”.

People with dementia don’t like being called ‘sufferers’ but they do suffer from poor services and lack of support to enable them to continue to participate, as they have done all their lives before diagnosis. They also suffer from the social isolation that follows a diagnosis of dementia when friends and family members stop visiting because ‘they don’t know what to say, perhaps out of fear that they too might be diagnosed with dementia or that they might have to support their relative or provide financial support for residential care.

Politicians, the press and even top level researchers and the leaders of some national organisations working for people with dementia talk about ‘demographic time-bombs’, ‘tsunamis’, ‘disasters waiting to happen’ and a ‘world without dementia’. Would anyone today talk about ‘a world without Down’s Syndrome’?

Dementia Alliance International has gone from strength in the last two years not only because new members are joining every week, but because we have taken our demand for human rights to a high level.

In March 2015 our co-chair and founder Kate Swaffer, went to the World Health Organization’s first Ministerial Conference on dementia to make three demands to WHO and 80 Health Ministers at the Opening Ceremony: full and equal access to CRPD for people with dementia; post-diagnostic support and for research on care to be on a par with research on cure.

The following year, Alzheimer’s Disease International adopted a human rights policy which includes access to CRPD and other Conventions for its 85 national societies, in cooperation with DAI. During the Social Forum, we could identify with the experience of other international, regional and regional associations of disabled persons. Words common to all of us included stigma; multiple discrimination (in our case on grounds of old age and gender) invisible disabilities; reasonable accommodation. For people with dementia, being supported to live for as long as possible in the community is particularly important: that’s why we contributed to the UN General Day of Discussion on Article 19 earlier this year.

So thank you for inviting me because until recently, disability and dementia appeared to be on two different planets, each aware of human beings on the other planet but unable to communicate. In the last year, people living with dementia have attended UN meetings, met the CRPD Committee, taken part in the annual Conference of States Parties and this Social Forum.

We want to be part of the global disability movement because we share many of the obstacles to inclusion.”

Peter also wrote an excellent piece for Independent Living recently, DEMENTIA AND HUMAN RIGHTS, BY PROFESSOR PETER.