Tag Archives: International Disability Alliance

Hello, my name is Peter Mittler

Image source: Peter Mittler

The #DAI #Hello #WAM2018 blog series have been very popular, hence we intend to continue them at least weekly for some time to come. We have many new members joining DAI each week now, and want to continue to give everyone with dementia a platform to have a voice, if they want one.

As is it important to talk about progress (or not), today, therefore we begin October with an article by DAI member Professor Peter Mittler. Peter says #Hello with a reflections on our human rights.

Peter has worked tirelessly for most of his professional life for the rights for people with disabilities, and for the last few years has devoted his attention to the rights of people with dementia, sharing his extensive expertise and knowledge, and is friendship and commitment to the 50 million people currently living with dementia. Thank you Peter. We are humbled and honoured to have Peter as a member, and thank him for his continued focus on the rights of us all; DAI is deeply indebted to you.

Hello, my name is Peter Mittler

MY REFLECTIONS ON OUR HUMAN RIGHTS

My human rights journey began shortly before my 7thbirthday when Hitler’s army marched into Austria and street thugs wearing brown shirts and swastikas arrested thousands of Jews, closed their shops and businesses and stopped me and other Jewish children going to school.

My story is told at length in a memoior, Think Global Act Local: A Personal Journey (2010). It now needs a new title:  Act Local Think Global because the responsibility for taking action on human rights rests with each and every one of us.

The United Nations Organisation was founded in the wake of the Holocaust and the loss of hundreds of million lives in World War 2.  Under the inspirational leadership of Eleonor Roosevelt, the UN produced the Universal Declaration of Human Rights in 1948 for everyone on the planet.  That Declaration provides firm foundations for the legally binding Conventions on the rights of specific groups who were experiencing inequalities and discrimination: women, children, ethnic minorities and last but not least disabled people.

Although the UN has officially recognised people living with dementia as persons with cognitive disabilities, governments have not included us in the implementation of the CRPD or other Conventions. This is nothing short of systemic discrimination which will only end if we insist and persist in the demand for our human rights on the same basis as people with other disabilities.

  • What can be more important than our human rights?
  • What is worse than decisions about us without us?
  • Why do governments and decision makers ignore us?

Since March 2015 when Kate Swaffer first demanded access to the CRPD at the World Health Organisation, I have worked with her and many others to secure our rights but we have very little to show for our efforts.

The UN supports us but our governments continue to ignore us. Dementia Alliance International and Alzheimer’s Disease International helped inform the World Health Organisation’s Global Action Plan for a Public Health Policy in Dementia (2017).  It is a good plan but it is not clearly based on the General Principles and substantive Articles of the CRPD. Furthermore, very few governments have acted on it.

There now needs to be a campaign to use the CRPD in planning supports and services in the wider context of the UN’s Action 2030 Sustainable Development Goals.

Will it happen?

Over to you!! 

Peter Mittler © 2018

 

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Peter. Become a DAI Sponsor or Associate today.


 

Civil Society Forum – Day 2 update

In June I was representing DAI in New York attending day 2 of the pre conference Civil Society Forum , followed by the 11th Session of the Conference Of State Parties (COSP) on the Convention of the Rights of Persons with Disabilities (CRPD).

I apologise for a late report on it; and there are more to come! Clearly, there are not enough hours in each day, or days in each week!

The Overarching Theme this year of the 11th COSP was “Leaving no one behind through the full implementation of the CRPD”, with the following Subthemes and Crosscutting themes.

Sub-themes:

1. National fiscal space, public-private partnerships and international cooperation for strengthening the implementation of the CRPD
2. Women and girls with disabilities
3. Political participation and equal recognition before the law

Cross-cutting theme:

Promoting high-quality disability statistics and disaggregation of data by disability status for the full realization of the rights of persons with disabilities.

It was very pleasing to be given the opportunity to make various statements, the first one on Day 2 of the Civil Society Forum, the pre COSP event which I was only able to attend on the second day. It was an opportunity to ensure dementia was not forgotten as a condition causing acquired, and progressive cognitive disabilities.

My first statement, not pre-planned, but made in the discussion time after the main speakers in the aftrenoon of Day 2 of the Civil Society  Forum on June 11, 2018 is listed below.

Statement 1 – Day 2 of the Civil Society Forum in New York, preceding the COSP.

My name is Kate Swaffer, a co founder and the current Chair and CEO of Dementia Alliance International. I’d first like to thank Klaus Lachwitz from the International Disability Alliance for mentioning dementia in his earlier comment, which was the first time this condition has made it into the discussions today.

I represent the 50 million people currently living with dementia, and am also one of them. The WHO states there is a new diagnosis of dementia every 3 seconds, and whilst dementia is a chronic, progressive terminal condition, it is also the leading cause of death and disability in older persons.

Yet most people in civil society do not yet see this condition as one that brings with it acquired cognitive disabilities, and I ask that we consider this today, to ensure that no one is left behind.

Dementia disproportionality impacts women and girls; more women are diagnosed with dementia, and women and girls make up more than two thirds of unpaid carers, and more than 70% are women and girls in Low and Middle Income Countries.

People with dementia are systematically excluded from rights based and equitable inclusion; the barriers are far more than dementia.

The real barriers are due to stigma, discrimination and the misperceptions about the capacity of people with dementia, and the many breaches of our most basic of human rights.

Inclusion continues to be a ‘tick box’ experience for many of us, and very often, self-advocacy requires significant self-funding, simply to ensure our rights under Articles 4.3 and 33.3, of which discussions have been exclusively focused on today.

We therefore ask for not only inclusion, but for appropriate funding from governments and NGO’s or DPO’s to ensure full and equal inclusion and participation of this cohort, to enable it. As many have speakers have stated today, this is undoubtedly our right.

Thank you.

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance International