Category Archives: CRPD

Welcome to 2017 and Happy 3rd Birthday to DAI!

screen-shot-2017-01-04-at-11-52-06-am

Believe it or not, DAI has recently turned three! It is usual to say, Happy Birthday so this blog is doing just that! The seven co-founders of DAI who set up this organisation on January 1, 2014, could never have imagined, in our wildest dreams how much progress we would have made in such a short time, and although three of our co-founders are no longer with us, we believe they would be very proud of what they dreamed of and started.

Ironically, most of us forgot our own birthday, and therefore made zero noise about it on the day, but we are however, celebrating it with our members and families at our online Café Le Brain on Tuesday January 17 (USA/UK) / Wednesday January 18 (AU/NZ). Login details have been emailed to members.

We are also very pleased to be able to report that very soon, you will receive DAI’s first formal Annual Report, along with our other news, plans and dreams for 2017, in our first e-Newsletter for the year.

Frankly, it is totally unacceptable that the 2015 conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries was that “Dementia receives the worst care in the developed world,” This is one reason why we are such passionate advocates for real change, not just more rhetoric.

We may be seen by a few as too critical of some things, or as disruptors, as we often question the status quo. However, if care was not so poor in so many countries, as per the conclusion above, we would not have to.

Our greatest aspiration, is that we can  work together, and that it will always be “Nothing about us, without ALL of us”. We hope that local, national and global groups of people with dementia and the many not for profit and other advocacy organisations can all work together, in cooperation and in harmony, towards the same or similar goals.

As we quoted on Day 1 of Dementia Alliance International:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)

We are all working towards the same goals, which is to improve the quality of life for all people with dementia and our families; as a global organisation, DAI has a responsibility to work hard towards supporting that gaol in all countries around the world. If all the groups of people making a difference from every corner of the globe, all work together, imagine how much more powerful we could be…

[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.

The 10th anniversary of the Convention on the Rights of Persons with Disabilities

screen-shot-2016-12-10-at-6-28-51-pmThe CRPD celebrates 10 years

In unison with the United Nations and the global disability community, Dementia Alliance International commemorates and celebrates the 10th anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), as we have been advocating globally for full and equal access for people with dementia to this Convention for almost two years, and many individuals living with dementia have been advocating for these rights since the it was formally adopted.

On 13 December 2006, the United Nations General Assembly adopted a resolution that established the Convention on the Rights of Persons with Disabilities (CRPD). It’s aim is to “protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”

The main message is that persons with disabilities are entitled to the full spectrum of human rights and fundamental freedoms without discrimination. To that end, the Convention promotes the full participation of persons with disabilities in all spheres of life, challenging customs, stereotypes, prejudices, harmful practices and stigma relating to persons with disabilities.

DAI also challenges customs, stereotypes, stigma, prejudices, harmful practices and discrimination, and are advocating for exactly the same rights as all others living with any form os disability.

The UN Committee on the Rights of Persons with Disabilities monitors how countries that have ratified the Convention are doing by reviewing them regularly and issuing concrete recommendations on how violations can be tackled and rights upheld.

DAI intends to monitor countries to ensure people with dementia are afforded the same access to the CRPD as all others with disabilities. Whilst 167 countries have ratified the CRPD, no country has yet acted on it for those of us diagnosed with dementia, and in close but autonomous partnership with Alzheimer’s Disease International, we sincerely hope we can impact tangible change.

Why is the CRPD so critical?

The CRPD is the first human rights treaty ratified in the 21st century, with the highest number of signatories in history to a UN Convention on its opening day. Most notably, it is also the first internationally legally binding instrument to specifically address the situation of persons with disabilities at a global level in an effort to promote, respect and fulfil their rights.

Since its adoption at the General Assembly in December 2006, the Convention, through its articles, has raised awareness about disability as both a human and a development issue. It marks a paradigm shift, where persons with disabilities are no longer viewed as objects of charity but as active members of society, in charge of their own lives, with free and informed consent. The CRPD is the chief instrument that consolidates the efforts made by the United Nations to promote the equal rights and inclusion of persons with disabilities in all spheres of society.

If you are diagnosed with dementia, or know someone who is diagnosed with dementia, it is free and very easy to join DAI. We have educational webinars, online support groups, peer to peer support, and many other services and resources to support you. 

Together, we can learn to live with dementia, not only die from it, and we are and will work in partnership to change the world. 

Celebrating the International Day of People with Disability

We celebrate the International Day of People with Disability (IDPwD)

In doing so, we also applaud the work of many of our members and all people living with dementia around the world who have been working in their local communities, or on the national or global stage towards a human rights based approach to dementia and our access to the Convention on the Rights of persons with Disabilities (CRPD).

This year’s International Day of Persons with Disabilities also falls alongside the 10th anniversary of the adoption of the CRPD. Last year on this day, the #aday4all hashtag became the most popular across the internet. We all hope this happens again in 2016!

screen-shot-2016-12-03-at-7-47-10-amDementia Alliance International recently became a member of The International Disability Alliance (IDA), with what is known as Observer Status, and we are actively working towards full membership status. For those of you who are new to IDA, it says on their website:

We are united for the rights of persons with disabilities on the world stage

“The International Disability Alliance is an alliance of eight global and six regional organisations of persons with disabilities. We advocate at the UN for a more inclusive global environment for persons with disabilities and their organisations. The Convention on the Rights of Persons with Disabilities (CRPD) is our touchstone. We are invested in ensuring that the 2030 Agenda and the Sustianable Development Goals are inclusive and in line with CRPD. We support organisations of persons with disabilities worlwide to take part in UN and international human rights processes, and use international accountability mechanisms.”

Why is this important to people with dementia?

This is important for people with dementia to ensure our rights and recognition at the highest levels as people living with disabilities, caused by dementia.

It is imperative as we all work together towards the demand we made in Geneva at the WHO First Ministerial Conference in Dementia, March 2015 for a human rights based approach to dementia,  and an approach that must include proactive rehabilitation and disability support.

Simply put, if communities must provide wheelchair ramps, they must also provide support for people with cognitive disabilities to live an independently in their communities as possible, and with equal access that others can expect, and are afforded.

If through providing proactive disability support for all, including people with dementia, our communities are dementia enabling and dementia accessible, then they will automatically be better for everyone of any age to live and thrive in.

Update 2 on the Social Forum by Mary Radnofsky

My Impressions of the United Nations, Human Rights Council, and Social Forum at the Palais des Nations in Geneva, 2016.

by Mary L. Radnofsky.

Thank you to Mary and Peter for representing Dementia Alliance International members, and all people with dementia so well.

screen-shot-2016-10-27-at-6-39-56-am“The United Nations – It’s one of the hallowed halls of peace we learned about in history books. But there I was, at the UN Human Rights Council for the Social Forum, October 3-5, 2016 with DAI Human Rights Advisor, Peter Mittler.

Most Americans think of the UN as being in New York, but it also has an important regional presence in Addis Ababa, Bangkok, Santiago, and Geneva, where we practiced our best Swiss French in buses and restaurants, and met with representatives of Member States and other Non-Governmental Organizations to discuss the Convention on The Rights of Persons With Disabilities (CRPD) – in every variant of English you can imagine.

To a baby-boomer like myself, the UN is a place of almost mythical significance, where post-World War II leaders came and sat, side by side, to listen and speak to one another, to try and understand social, economic, political, and other constructed problems that have bitterly divided humanity. That is why, under the inspiring leadership of Eleanor Roosevelt, the 1948 General Assembly of the UN adopted the Universal Declaration of Human Rights, which became the launch pad for later Conventions, including the CRPD.

Despite my childhood imaginings, I realize the UN is not magical, but rather a civilized place where persistent, hard-working people (whose names may never be known) have found common ground outside their geographic boundaries for the purpose of helping each other get along and find a better quality of life.

From around the world, people come to the UN speaking dozens of different languages. In this modern Tower of Babel, we all have a “shared disability.” It is, in fact, inherent in the very nature of humanity – linguistic and cultural divergence.

Such a disability could have forever prevented us from communicating ideas across borders. Yet through ongoing accommodation (e.g. the UN simultaneous translation, sign language, and closed-captioning system), we’ve learned to understand each other, with a little extra effort. But we also need some good will to interpret subtle concepts and cultural sensitivities in translation, because it’s not always easy to understand how someone else perceives the world.

In my brief time at the UN, though, I rediscovered in many people some of the fundamental truths that seem to easily cross national and linguistic boundaries, and define the human race. People proudly “admitted” that we can’t succeed alone, because we’re social creatures; we need each other. We need to feel useful and appreciated. We want to take care of one another because we are One. Yet we are also individuals, and we are defined, in part, through our unique relationships with each other. It was the best hope for humanity I’ve ever seen.

This year’s Social Forum included representatives of the 167 Member States officially having ratified the CRPD (not including the USA, unfortunately, but I’m going to work on that). Now that DAI is an Associate Member of the International Disability Alliance (IDA), we can advocate at the UN for including persons with dementia in any accommodations discussed for people with disabilities. This gives us an important, global platform from which to speak the truth about living with dementia, and how we want our governments to support us.

Peter and I both took the opportunity to ask questions and make comments at plenary and side sessions, to ensure that the voice of people with dementia was heard. From the number of positive responses to our interventions (most of which were recorded on the UN’s webcamTV, so see the links below), I think our voices were heard. Here’s the context of what we discussed.

Monday, October 3, 2016

As with most long-standing organizations, there were many formal, official speeches at this conference. For starters, we heard the President of the UN Human Rights Council, the UN High Commissioner for Human Rights, and Colin Allen, who is Chair of the International Disability Alliance (IDA). Mr. Allen communicated with sign language, and through his interpreter, explained that 80% of people with disabilities worldwide live in poverty, so he urged states to empower us all to eradicate it. While all speakers cited human rights as the basis, Mr. Allen specifically called for “Humanity, by the people, for the people, and with the people.”

It is an especially compelling argument these days, as we continue to witness acts of atrocious inhumanity not only in war zones, but in so-called “developed” countries, some of which still institutionalize people with disabilities in horrible conditions.

Session: Embracing Diversity & Awareness Raising

Professor Anna Lawson, Disability Studies Director in Leeds, England, spoke of the need to conduct research to provide evidence for reforming government policies. She acknowledges the importance of statistics, but more importantly, realizes the need for qualitative data that can reveal truths about environments that don’t lend themselves to easy classification. She also understands that qualitative methods can explain WHY problems exist, and reveal how marginalized people live in rural, remote locations, or behind institution walls. They don’t communicate in the way people usually do, in part because they’re children, elderly, or people with dementia. She seems to really understand QUALITY OF LIFE issues.

Catalina Devandas Aguilar, UN Special Rapporteur on the Rights of Persons with Disabilities, and herself a wheelchair user, explained that in communities and in the media, there are relatively few, and mostly mistaken images of persons with disabilities.

She said we need to make a paradigm shift; we are under-represented in movies, TV, and in research, for example. To bring about change, we must be included, and this debate must be taken beyond the disability community; it must be viewed on the human rights level of the global stage. She is also concerned with the rights of women, children, and the elderly, and recognizes that many people with dementia are often part of other able and non-disabled communities that already suffer discrimination for different reasons, so their human rights must be protected from all angles.

Peter spoke about the need for Member States to include people with dementia in the implementation of the CRPD. (See Peter’s comments on UN WebTV; click on the link and advance the Time slide indicator to 44:32. http://webtv.un.org/search/persons-with-disabilities-and-human-diversity-social-forum-2016/5152740834001.)

I spoke (ok, nervously at first, so forgive the trembling in my voice!) to discuss the importance of ethnographic research using evolving methodology, not just pre-determined checklists based on a medical model, to investigate the subculture of dementia that exists within every society. (See Mary’s comments on UN WebTV; click on the link and advance the Time slide indicator to 47:46 http://webtv.un.org/search/accessibility-and-non-discrimination-social-forum-2016/5152740831001.)

I will describe the next set of sessions in coming blogs, and include more photos. If you’d like more details, feel free to contact us at [email protected] or go to UN WebTV to watch the whole Social Forum yourself. It’s broken down into sessions, so you can start here, if you like. (http://webtv.un.org/search/opening-session-social-forum-2016/5152740796001)

The Best is Yet to Come!”

Mary

HOW THE UN PROTECTS OUR HUMAN RIGHTS

AN INTRODUCTION TO THE UN SOCIAL FORUM

From October 3rd-5th DAI members, Mary Radnofsky and Peter Mittler had the opportunity to take part in a meeting organised by the UN Human Rights Council which consists of 47 United Nations Member States elected by the United Nations General Assembly.

“Our aim here is to provide some background information about the work of the UN Human Rights Bodies. Up to now, we have focused on the work of the UN Committee on the Rights of Persons with Disabilities because it is this Committee that empowers organisations OF persons with disabilities such as Dementia Alliance International to submit their own reports and to meet the Committee during their Spring and Autumn three week sessions.

On August 25th 2016, a three-person delegation from Alzheimers Disease International and Dementia Alliance International met the CRPD Committee for an hour to demand full access to Convention on the same basis as those with other disabilities. They asked us many searching questions but were clearly in strong support. This is because the CRPD is the first Convention to be co-written by the people it is designed to benefit and because 17 of its 18 members are themselves persons with disabilities.

The Human Rights Council is an inter-governmental body within the Office of the UN High Commissioner for Human Rights www.ohchr.org. It is responsible for strengthening the promotion and protection of all human rights around the globe and for addressing and making recommendations on human rights violations. It has the right and the ability to discuss all thematic human rights issues and situations that require its attention throughout the year.

The Universal Periodic Review mechanism routinely assess the human rights situation in all United Nations Member States. Its Advisory Committee serves as the Council’s “think tank”, providing it with expertise and advice on thematic human rights issues. In addition, a Complaints Procedure allows individuals and organizations to bring human rights violations to the attention of the Council.

The Human Rights Council also works with special rapporteurs, special representatives, independent experts and working groups that monitor, examine, advise and publicly report on thematic issues or human rights situations in specific countries. The Special Rapporteur on the Rights of Persons with Disabilities is Ms Catalinda Devandas Aguilar with whom DAI is in regular contact and is aware of our concerns and priorities. We are also in touch with the office of the Independent Expert on Older Persons and the Longevity Centre, all based in Geneva.

Every year the Human Rights Council chooses a theme for a Social Forum. This year’s choice was:

The Promotion and full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities in the context of the tenth anniversary of the adoption of the Convention on the Rights of Persons with Disabilities

The meeting was attended by government ministers, their ambassadors to the UN, a wide range of Disabled Persons Organisations from every continent. There were also many representatives of National Human Rights Organisations which were created by the 1983 Vienna Convention to be independent of government and to protect and promote human rights, now including those of persons with disabilities.

Over the three days, the meeting reviewed what the Convention had and had not achieved; what obstacles had been encountered on the long journey to claim the rights spelled out in detail in the General Principles and Articles of the Convention.

We were at the Social Forum because most of the meeting was discussing ways to ensure that persons with disabilities were included in the 2015-2030 Sustainable Development Goals which were launched by the UN General Secretary Ban-Ki-Moon with a commitment to Leave No One Behind – a concern we had raised with the CRPD Committee a few weeks earlier.

STRUCTURE OF THE SOCIAL FORUM

Over the three days of the Social Forum there were 12 Plenary Panels. Spokespersons of Disabled Persons Organisations were on most of them, often in a majority. They were very well chaired and excellent questions were put to the panellists by a moderator. I was a panel member for a session on Under-Represented Groups of Persons with Disabilities and Mary and I made good use of opportunities to raise questions from the floor.

THE PANEL THEMES

  • Setting the Scene: From Needs to Rights- Advances and Challenges
  • Embracing Diversity and Awareness Raising
  • Accessibility and Non-Discrimination: Leaving No One Behind
  • Strengthening Equality and Specific Measures
  • Meaningful Participation and Empowerment
  • Making Development Inclusive
  • Strengthening Accountability
  • Informing Policy
  • Realizing the Human Rights of Persons with Disabilities
  • Implementing the 2030 Sustainable Development Goals Agenda: The Future We Want

GENERAL IMPRESSIONS

About half way through the meeting I had an opportunity to summarise my perceptions of the messages being conveyed by speakers from many organisations of persons with disabilities.

These ranged from long-established and highly influential NGOs (Inclusion International (our best friends and allies); the World Blind Federation, World Deaf Federation, the World Network of Users and Survivors of Psychiatry.

These and some newer organisations are members of the International Disability Alliance. IDA is an alliance of eight global and six regional organisations of persons with disabilities which advocates at the UN for a more inclusive global environment for persons with disabilities and their organisations.

Just before the Social Forum, Peter Mittler attended a 3-day meeting of IDA where DAI was accepted as an Associate Member – the first step to becoming a full member. Its Chair, Colin Allen who played a key role in the Social Forum is President of the World Federation of the Deaf and communicates through exemplary Sign Language Interpreters www.internationaldisabilityalliance.org (with photos of Social Forum).

Peter stressed that he was speaking only for DAI but later received strong support from other NGOs. These were the main points.

Half way through the Social Forum there was a clear picture emerging which the organisers should address in using their status to put more pressure on Member States to improve CRPD implementation

  1. Disabled Persons Organisations from all parts of the world are celebrating the 10th anniversary of the Conventions but are dissatisfied with its implementation by their governments.

2. Their main complaint centres on the limited extent to which they are consulted by governments.

3. The UN should be more proactive in insisting on Article 4.3 which states:

In the development and implementation of legislation and policies to implement the present Convention and in other decision-making processes concerning issues related to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their respective organisations.

4. Very few Member States have followed this advice. A notable exception is Japan where the government agreed to the demands of its Disabled Persons Organisations to delay ratification of the CRPD until its legislation had been amended to make it compliant with the Convention. The government set up a committee to do this, co-chaired by a Minister and a person with a disability. Half the committee were persons with disabilities who were paid as temporary civil servants.

5. Ever since the 1981 International Year of Disabled Persons and subsequent Regional Decades of Disabled Persons, the UN has recommended that governments should establish a Focal Point for Disability, directly responsible to the Head of State or Prime Minister rather than delegating this responsibility to a single Ministry (usually Health, sometimes Justice, Social Welfare or even Foreign Policy). This Committee should include members of a Coalition of Disabled Persons Organisations speaking whenever possible as a single voice in the development of policy.

This was how the CRPD was created and should be implemented. If this does not happen, we will hear the same complaints when the time comes to celebrate the 20th anniversary of the Convention in 2026 and again in 2030 when we review the Sustainable Development Goals.”

Extending CBR to older persons: A global imperative

screen-shot-2016-09-03-at-3-54-36-pmWelcome to October, and hopefully a rest after a huge month of raising awareness and members activities! However we need to kick of this month with a video presentation by Prof. Peter Mittler for the 2nd World CBR Congress conference in Kuala Lumpur last week. We produced a flyer for this event as well, which went into more than 1500 conference bags, downloadable here: extending-cbr-to-older-persons-a-global-imperative-dai-prof-mittler-september-2016. Thank you Peter for all you do for all people with dementia.

CBR VIDEO NOTES (not the full transcript)

Personal message to viewer

YOU CAN MAKE A DIFFERENCE TO THE QUALITY OF LIFE OF PEOPLE WITH DEMENTIA

You can ALL be dementia friends, supporters, champions

IMAGINE a series of concentric circles.

In the middle of the smallest circle is YOU or a PERSON LIVING WITH DEMENTIA.

The next circles include-

– your family

– your neighbourhood

` friends and acquaintances

– where you work and in your organisation

-the OUTER circles are about climate change, inequalities and the UN

– and its international treaties on the human rights of everyone on the planet Including the UN Convention on the Rights of Persons with Disabilities to which 166 countries are now committed in international law.

I’m here because Dem receives worst care in the developed world -even worse in Global South

MY BACKGROUND

I’m Human Rights Adviser to Dementia Alliance International – the voice OF people with dementia.

ID, WHO CBR, HR, CRPD,- CBR from the start; now more relevant than ever-2030

Diagnosis- DAI –Aim live well with dementia;

claim HR-CRPD

CBR approach is ideal for dementia

CBR can support people who may have dem- carry out simple checks, recommend asst

PWD EXPERIENCES AND PRIORITIES

Diagnosis: (v rare in Global South). –Spread the message here; we need to get it into KL Declaration.

QUINN

The UN Disability Convention is a mirror to society. It makes us face up to our own values and it forces us to acknowledge the large gap that still exists between the myth system of our own values and the operations system of how these values are dishonoured in daily practice.

As with all mirrors, we can refuse to look into them; we can look at them but ignore their reflection or we can take notice of our reflection and commit to a process of change.

 

 

World Alzheimer’s Month 2016 wrap up

IMG_4978We have attempted to shared as many #RememberMe stories as possible for World Alzheimer’s Month 2016, all either highlighting some very personal experiences of living with dementia, or some of them about some of the  brilliant local, regional, national or worldwide advocacy some members are involved in.

Whether it is global, or simply helping the person next door, it is important work. Sharing a personal story via a blog, or at you local town hall or church, is just as important as making a video thy is shared more publicly. It is not a competition of who is doing more, or of the best.

There are simply not enough days in World Alzheimer’s Month to share them all, which also means we have many members stories to continue sharing over the next few months! What we did was to sent out messages to members to send in their stories, and the ones we have shared this month are simply from those members who responded. We have not even been able to add them all during September, but will endeavour to do so over the next few weeks.

That does not mean, of course, that there are not many other brilliant stories of excellent advocacy to share. Less than 5  years ago, there were not so many people with dementia actively working so publicly as advocates; today, we could (if we had the funds to employ someone!), write a daily blog every single day of the year, as so many are all over the globe are now doing wonderful things.

People with dementia have been sharing their own stories, in their own ways, of ‘Living with dementia’ for some time now. Each person’s way of raising awareness of dementia is important, whether it is a blog here or elsewhere, an article in a magazine, an event of some kind, a documentary or at a conference.

And all of these stories or advocacy work should be shared widely; this is in part what advocacy means.

We all have really important issues including reactions of close family and friends, coping with disability due to dementia, and even issues such as stigma, isolation, loneliness and discrimination to share, but also there are many stories of living well with dementia, in spite of it. These are equally as important, and just as important, are the events which may have limited or broad outreach, as raising awareness is.

So to end our series of daily blogs for #WAM2016 #DAM2016, we are highlighting a few things our members and others have been up to this month.

Wendy Mitchell, Jennifer Bute, Chris Roberts, Keith Oliver, Larry Gardiner and others in the UK have been involved in a documentary being made for Japan out living with dementia.  Wendy lives in York and writes a great blog, including this one about having the Japanese film crew in her home recently. DEEP and YoungDementiaUK have been very include wiht a lot of activities this month as well, including hosting a conference.

There have been so many conferences in so many parts of the world this year for #WAM, we would need to write a book to cover them all. Nigeria perhaps was the most important one of all, as the less developed countries are needing so much more support to raise awareness than the developed countries; in fact, even for people to get a diagnosis is a major concern for them!

Chris Roberts and his wife Jayne and daughter Kate from Wales had a BBC documentary made about their story of dealing with dementia, and it was great news to read on Facebook it has been picked up by an agency for global distribution. Chris has also been nominated as a finalist in the National Dementia Care Awards and we wish hm luck again this year.  You can view Chris’s documentary here…

Other members have been busy as well, and we celebrate again the prestigious Inaugural Richard Taylor Memorial Advocates Award won by Mick Carmody this year.

Some of our Aussie members such as Eileen Taylor and John Quinn and their care partners have been busy including working on a Dementia Friendly Community project. You can see a video of John Quinn talking about living with dementia here. Edie Mayhew and her partner Anne Tudor have also been very busy in Ballarat working on a campaign in their home town of Ballarat called Bigger Hearts.

It is not possible to cover everyone’s stories or activities today, and if we headed to America and Canada to give a preview here today, it would take too long to write, let alone read!

Susan Suchan though, has been involved in a documentary of her life and what it is like having dementia, and in particular living with the condition known as Primary Progressive Aphasia.

You can read more about Susan’s documentary here…

In our final blog for World Alzheimer’s Month 2016, we apologise to those we have not (yet) recognised for their advocacy or other efforts, but we hope you will think about sending us your stories for future blogs here.

It has been a very busy and productive month all over the world as we collectively raise awareness of “Dementia from the Inside Out”!

Introducing the Ontario Dementia Advisory Group

screen-shot-2016-09-28-at-9-54-38-amAt DAI, we work whenever possible to support not only the global advocacy work of our members and if possible, all people with dementia, but if we can support individuals or groups nationally or locally as well, we do our utmost to do so.

We are proud to work with the Ontario Dementia Advisory Group and support them with their work as they feel the need, whether it is a zoom meeting, a webinar or a chat on Facebook. We don’t directly impact their work, or persuade their strategic direction, or their local or national goals and ambitions in any way (unless of course we are asked to), but what we can do, is support them in other ways. For example, the global work DAI has done on human rights and the CRPD, was able to positively support them with their own senate submission earlier this year.

What we can’t do alone, we can do together, either side by side with our sleeves rolled up together, or supporting each other from afar.

The creation of the Ontario Dementia Advisory Group

By Mary Beth Wighton on behalf of the ODAG

“Just a mere 2 years ago, the idea of people with dementia being central to their care was not readily considered. In Ontario, there was not even one group made up solely of people with dementia who self-governed. In fact, this was the case for all of Canada.

It was at this time, the Ontario Dementia Advisory Group (ODAG), was created. Five people living with dementia came together knowing that it was time for us to to stand up and raise our voices. I’m proud to say we have been very successful.

ODAG is unique in the fact that it is made up of people with dementia – and not care partners. We have created a structure that puts people with dementia in the center and partners around us. Our strong relationships with a variety of types of organizations has helped in enabling us to accomplish our goal of influencing policies, practices and people.

In fact, we have been so successful that we are the only group in North America like this. Internationally, we are recognized as being one of only 6 other organizations who collaborate and work together with governments of all levels, Alzheimer Associations, Research and a multitude of other types of organizations.

ODAG GROWTH

ODAG is at a very important stage in its growth. Currently, we only have a membership of eight people. This is obviously too few for the work that needs to be done. Recognizing this, we have begun the process of developing a Recruitment Strategy plan that will bring in 500 new members over the next year 15 months. Yes, 500 members!

You may be asking yourself, what will we do with all of those members. Why do we need them? What’s the goal? It is simple:

  • We need more PWD voices to fight for our citizenship rights as declared in the United Nations treaty
  • We need to challenge stigma that encourages people to speak for us and represent us. We can speak for ourselves and contribute in meaningful ways.
  • 500 PWD will allow for us to apply political pressure to fight for our needs – in particular transportation and resources allowing us to live at home for as long as possible. In fact, the Ontario Dementia Strategy Discussion document has just been released. ODAG intends to help PWD understand the plan and provide feedback to the project team.
  • And it will provide ODAG with the ability to forge new and strong relationships. Canadian Senate
  • ODAG garnered international attention when it spoke as Witness for the Canadian Standing Senate Committee on Social Affairs, Science and Technology for its study of dementia in Canadian society.

In a historical moment for the rights of people living with dementia, ODAG used the United Nations Convention on the Rights of Persons with Disabilities(UN CRPD), Accessibility Article, to obtain a number of accommodations from the government. It is the first time in Canada people with dementia advocated for ourselves in such a manner. The results were electrifying!

ODAG’s most recent achievemet involves our membership of a new Task Force named the “Canadian Dementia Working Group” which is a consortium of non-governmental disability organizations in Canada. It submitted a Memorandum to the UN CRPD as it relates to “Concluding Observations” report from the UN to Canada.

The ODAG members and all of our Partners have done a fantastic job on pushing for the rights of PWD. Continued success is on the horizon!”

Please do watch this remarkable video made about some women in Canada, living strong with dementia.

“I have had the privilege and honour to meet the women in this video, in person or online, and love them and their work” (Kate Swaffer, Chair, CEO and co-founder of DAI).

New Flash: Human Rights Call for Action

Dementia Alliance International (DAI) and Alzheimer’s Disease International (ADI) are calling for action to protect the rights of people with dementia under the UN Convention for the Rights of Persons with Disabilities (CRPD).

ADI Chairman Glenn Rees spoke alongside Professor Peter Mittler, member and Human Rights Adviser to DAI, at a side session to the 16th Session of the CRPD Committee and the 10th Anniversary of the Convention today in Geneva.

The side event follows the formal adoption of a Human Rights Based Approach to dementia advocacy by the 85 country member Council of ADI following DAI’s lead, at the 31st International Conference of Alzheimer’s Disease International in April. A common understanding on Human-Rights approaches (HBRA) was adopted by the UN in 2003. You can downed our joint Position paper here: http://www.alz.co.uk/sites/default/files/pdfs/access-crpd-dementia.pdf

UNITED NATIONS COMMITTEE ON THE RIGHTS OF PERSONS WITH DISABILITIES

Dementia Alliance International and Alzheimer’s Disease International

16th Session: Side Event: April 25th 2016   12.45-13.45

Professor Peter Mittler speech:

Human Rights Adviser Dementia Alliance International

I am speaking to you today as a person living with dementia and as Human Rights Adviser to Dementia Alliance International.

DAI is the global voice OF people with dementia. Since we were founded in 2014, we have been joined by over 2000 members in 37 countries, all with a diagnosis of one of the many types of dementia.

I am one of the majority with a diagnosis of Alzheimer’s Disease. But we are all unique individuals and we object as a matter of principle to being defined and socially disenfranchised by our diagnosis. That is our daily experience.

DAI works in close but autonomous partnership with Alzheimer’s Disease International: the global voice FOR people with dementia. Its Chair Glenn Rees is our Chair today. Marc Wortmann is ADI’s Executive Director.

Kate Swaffer, DAI’s Chair, CEO and Co-Founder, is an ADI Board Member. She sends her apologies for not being able to be here today.

She was elected for what she brings to the Board from the whole of her experience: not as the token person with dementia whose views may be listened to politely but count for nothing when decisions are made.

Tokenism is just one of the obstacles we face in our day to day lives in our own communities.

It was not tokenism when Robert Martin, a New Zealander with an intellectual disability was elected to the CRPD Committee by UN Member States in the year in which they are celebrating their 10th anniversary.

How many years will it take for a person with dementia to become a member of the Committee?

Most of the people I work with in DAI say that advocacy has given them a new purpose in life. Dr Jennifer Bute from the UK calls her blog: A Glorious Opportunity.

Some of us are fortunate enough to be able to say that we live well with dementia but we know that this is not the experience of the majority.

DAI’s first mission statement includes a commitment to reduce the stigma, isolation and discrimination around dementia, and to claim our human rights.

In March 2015 Kate Swaffer made three demands at WHO’s First Ministerial Conference on Dementia:

  • Policy and practice for people living with dementia should be based on the CRPD
  • Research should focus as much on care and support as on cure
  • A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community

At ADI’s international conference in April 2016, the leaders of 38 national Alzheimer Associations committed to a human rights based policy and full access to CRPD. That’s why we are here together today.

This year we have contributed to the General Day of Discussion on Article 19.

At the Conference of States Parties in June we were strongly supported by the International Disability Alliance when our Board Member Professor Mary Radnofsky intervened to great effect in interactive debates. Kate Swaffer was also present at the first WHO Dementia Stakeholders Consultation in Geneva in July.

In September we will have a video poster presence at the World Community Based Rehabilitation Conference in Kuala Lumpur where we are campaigning for the extension of CBR to Older Persons.

We plan to be present at the Social Forum in October and are also active in Europe with the support of Alzheimer Europe.

Our numbers are increasing week by week. We run weekly support groups for people in different regions and regular webinars led by world leaders in dementia research, policy and practice.

We are publishing suggestions for ways in which Dementia-Friendly Communities could involve people who have lived in that community as contributing citizens- for example, by being involved in the planning of DFCs.

We argue that researchers need to consider the experience of people with dementia as data, on the same basis as data from randomised controlled drug trials.

The flyer on your seats[i] provides a reference to four books and 23 chapters of an edited book, all written or told by people with dementia from a wide range of backgrounds.

So here is a strong statement based on impeccable data:

“Dementia receives the worst care in the developed world”.

That is the conclusion of the Organisation for Economic Cooperation and Development[ii], based on an exhaustive study of the world’s 38 richest countries. It is also a human rights issue because it is not about dementia but about people living with dementia.

When we object to being described as sufferers, it is because we suffer most from the way we are treated by society and from the poor quality of services available.

Like everyone on the planet, our fundamental rights were laid down in the 1948 Universal Declaration of Human Rights and in subsequent international Human Rights Treaties.

Although 166 Member States and the European Union have ratified CRPD, there is no evidence that we are being included in its implementation by our governments.

Furthermore, CRPD Principles and Articles are not reflected in two regional and many national dementia strategies launched as a result of the G7 and G8 Summits.

The International Disability Alliance lobbied successfully for the inclusion of disability indicators in the monitoring of the 2030 Sustainable Development Goals.

But people living with dementia are at great risk of being Left Behind in the SDGs because there is a pervasive assumption that dementia is the sole responsibility of Health ministries, rather than the inter-sectoral responsibility of all Ministries, including Housing, Transport, Social Care and Protection. These would enable us to have access to the whole range of supports, services and amenities available to persons with disabilities recommended in CRPD.

Since the 1981 International Year of Disabled Persons the UN has been recommending a Focal Point for Disability in the office of the Prime Minister or Head of State. This has proved to be very effective in many countries: South Africa was one of the first under President Mandela. This is more than ever necessary in the wider context of the 2030 Sustainable Development Goals.

Our current priority is better diagnosis, followed by a rehabilitation pathway to support us in continuing as active members of our local communities.

The majority of people in Low and Middle Income Countries never receive a diagnosis. In High Income Countries it depends on where you live because there are substantial variations in and between neighbouring health authorities.

We also know from frequent reports in the social media that the way in which diagnosis is given ranges from exemplary to the good, the bad and the unacceptable ugly.

A book by the late Dr Richard Taylor[iii] – like me, a former clinical psychologist – has examples of good and bad practice in communicating a diagnosis under the heading “If I were an M – instead of a Ph.D.” This should be glued to the desk of all clinicians charged with this difficult responsibility.

Moving from diagnosis to so-called post-diagnostic support: I would like to ask each of you to think for a moment about the services you might expect to receive if you sustained a severe brain injury, say in a car crash, from a penetrating gunshot wound or a severe brain infection such as meningitis.

While you are still in hospital but no longer under intensive care, you might be seen by a range of professionals.

Their aim is to begin the process of enabling you to return to the maximum extent possible to the way you lived before the brain injury.

We are arguing for the medical concept of ‘post-diagnostic support’ to be re-conceptualised as a rehabilitation pathway.

This would begin at the time of diagnosis with the offer of a follow-up visit to the hospital or memory clinic where the diagnosis has been given. The follow-up would provide opportunities to ask questions and raise concerns with a clinician.

This is the kind of support given in many countries when a baby has been born with a congenital impairment such as Down’s Syndrome. It focuses on the baby as well as the parents.

For people with dementia, a trained key worker needs to be appointed very soon after diagnosis to establish contact with the care couple; to discuss needs and priorities and to provide links to necessary services & supports from all relevant services and the community.

A rehabilitation pathway could include:

  • A Community Dementia Nurse – for assessment of needs from both a clinical and emotional perspective
  • An occupational therapist – to discuss possible adaptations to the home and domestic appliances, phones, computers to ensure greater autonomy and independence
  • A physiotherapist – to maintain mobility and strength
  • A speech and language therapist – to promote language and communication and advise on swallowing difficulties
  • A clinical psychologist – to advise on adjustment to diagnosis and monitor changes in cognitive functioning and to consider the need for an appropriate psychosocial intervention. 23 of these are listed in a recent report by the British Psychological Society, in collaboration with people living with dementia[iv] 23
  • A social worker – to consider family issues and provide access to community resources.

COMMUNITY-BASED REHABILITATION (CBR)

Community-based rehabilitation programmes are now being used in some 90 Low and Middle Income Countries. They provide a home-based, first line of support to persons with disabilities and their families from local health and community workers.

The most recent revision of the CBR Training Manuals was co-written with Disabled Persons’ Organisations and draws on CRPD Principles and Articles to inform policy and practice[v].

CRPD has also been used to underpin the WHO 2014-2021 Global Disability Action Plan[vi]. People with dementia need to be part of that commitment.

DAI is in discussion with WHO to establish whether persons with dementia will benefit from these initiatives in the SDG commitment to Leave No One Behind

RECOMMENDATIONS

We ask the CRPD Committee to use the full resources of the UN family to monitor the extent to which persons living with dementia are included in the implementation of the Convention by Member States.

We also ask the Committee to promote the rights of persons with dementia in the wider context of the UN 2030 Sustainable Development Goals.

For today’s audience I can summarise them very briefly:

* Inclusion in List of Issues

* General Comments

* Thematic Briefings

* Universal Periodic Reviews

* Other opportunities presented by the Human Rights Council:-

* The Social Forum

* The Special Rapporteur on Disability

*The Independent Expert on Older Persons and work towards a future Convention on the Rights of Older Persons.

We wish every success to the new Committee and look forward to the 17th Session.

[i] Alzheimer’s Disease International & Dementia Alliance International (2016) Access to CRPD and SDGs By Persons with Dementia. London: Alzheimers Disease International. www.alz.co.uk

[ii] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.

[iii] Taylor, R. (2007, reprinted 2015) Alzheimer’s from the Inside Out. Baltimore, Md. Health Professions Press.

[iv] British Psychological Society (2014) A Guide to Psychosocial Interventions in Early Stages of Dementia. www.bps.org.uk

[v] WHO, UNESCO, ILO & IDDC (2010) Community Based CBR Guidelines: Introductory Booklet. Geneva: WHO.

[vi] WHO (2014) Global Disability Action Plan 2014-2021: Better Health for All Disabilities. Geneva. WHO

 

LIVING WELL WITH DEMENTIA: A FUNDAMENTAL HUMAN RIGHT

peter mittlerThe following blog is a copy of an excellent speech given by DAI member Emeritus Professor Peter Mittler at AAIC conference in Toronto last week, for the Axovant symposium “The debate continues: Unraveling the science of Alzheimer’d Disease”.

Our sincere thanks to you Peter, for representing us so well once again.

LIVING WELL WITH DEMENTIA: A FUNDAMENTAL HUMAN RIGHT

“I have been invited to this conference as Human Rights Adviser to Dementia Alliance International. I am here because “dementia receives the worst care in the developed world”. That is the conclusion of the Organisation for Economic Cooperation and Development, based on an exhaustive study of the world’s 38 richest countries.

It is also a human rights issue because it is not about dementia but about people living with dementia.

While we wait for dementia researchers to find a cure, the 47 million people now living with dementia and the hundreds of millions predicted by the end of the century could live much better with dementia if they were supported to do so in their own homes and communities. In the meantime, the medical profession is well placed to use its prestige to influence public opinion, politicians and the media by avoiding the use of degrading language involving time-bombs and tidal waves, as well as commitments to ‘end dementia’ by a given year.

The words Human Rights and Dementia are rarely found in the same sentence but history was made on April 21st 2016 when the Council of Alzheimers Disease International committed its 83 national Alzheimer Associations to a human rights-based policy which includes full access to the United Nations Convention on the Rights of Persons with Disabilities.

Dementia Alliance International is the sole international self-advocacy organisation OF people with dementia. We were founded in 2014, and now have around 2000 members across the world, all of whom have a diagnosis of dementia. We work in close but autonomous partnership with Alzheimers Disease International which works FOR people with dementia.

I wonder how many of you have heard of us because nearly half our members are in North America. Whether you have or not, we are grateful to Axovant for making our human rights booklet available at this conference. It tells you about our priorities, weekly support groups in different time zones, webinars from world leaders in research and policy, the books we’ve written, our daily blogs in the social media and on our closed Facebook page, as well as developments in our campaign to claim our human rights.

I was diagnosed with early very mild Alzheimers Disease ten years ago. Some doctors tell me that the fact that I am still alive and functioning is due to the 3650 Aricepts I have taken over the last ten years. Common sense as well as research tell me that it can’t be that simple.

Most of the people I work with in DAI say that advocacy has given them a new purpose in life. Dr Jennifer Bute from the UK calls her blog: A Glorious Opportunity. Some of us are fortunate enough to be able to say that we live well with dementia and even aim to live beyond dementia but we know that this is not the experience of the majority. So when we object to being described as sufferers, it is because we suffer most from the way we are treated by society and from the poor quality of services and supports available to us throughout the world.

Many national reports give specific examples not only of poor services but of systemic human rights abuses. A recent Freedom of Information enquiry conducted for the UK Alzheimer’s Society revealed that people with dementia stay five to seven times longer in general hospitals than others over the age of 65 and that thousands are being discharged between 11pm and 6am each year. While they are there, their basic human right to “respect for human dignity and individual autonomy” is systemically disregarded.

HOLDING GOVERNMENTS TO ACCOUNT

So how can we hold our own governments to account for providing the worst care in the developed world?

First and foremost, governments need to ask people with dementia what matters to them and what changes they want to see.  That question also needs to be asked in the communities in which they live.

It’s not enough to invite us to conferences to tell our stories or even join committees because we can be heard but ignored or disqualified by diagnosis. I have worked in various capacities with people with intellectual disabilities; like them, I’m wary of tokenism.

It was not tokenism when Robert Martin, a New Zealander with an intellectual disability who spent many years in an institution, was last month elected to the United Nations Disability Committee, 17 of whose 18 members are people with disabilities. How long will it take for a person with dementia to be proposed by their government to become a member?

DAI asks the countries represented at this Conference to enable their fellow citizens with a diagnosis of dementia not merely to be consulted when decisions affecting their health and well-being are being taken but to work in full partnership with them as the main stakeholders and intended beneficiaries. That imperative is fundamental to the UN Convention on the Rights of Persons with Disabilities. People with dementia are experts by experience -and even have the T shirt.

Right from the start, DAI adopted the commitment of the global disability movement to the principle of Nothing About Us Without Us –the title of a book written by Christine Bradley, one of DAI’s co-founders who worked in the office of the Australian Prime Minister as science adviser. I know from my own experience as adviser in intellectual disability to the UK government and to UN agencies that having good legislation means nothing if it does not reach the people it is designed to benefit and if there are no means for people to hold their governments to account. The UN Convention empowers them to do just that

The Japanese government deserves a UN prize for listening to its Coalition of Disabled Persons Organisations who told them not to ratify the UN Convention until Japanese laws had been changed to make it compliant. The Government Committee appointed for this purpose was co-chaired by a Minister and a person with a disability. Members with a disability were paid as temporary civil servants to co-draft the necessary legislation.

For people with dementia, it’s a steep mountain to climb because we live in a world of US and THEM, even in so-called dementia-friendly communities who don’t consult us before deciding what’s good for us.

By the same token, many Health Ministries are launching dementia strategies without fully involving and listening to the people they are designed to benefit.

Our co-founder and Chair Kate Swaffer lives in Australia and is with us today because she is also a member of the World Dementia Council, as is Hilary Doxford from England.

In March 2015 Kate Swaffer made three demands on behalf of our members at WHO’s First Ministerial Conference on Dementia:

  • Policy and practice for people living with dementia should be based on the UN Convention Rights on the Rights of Persons with Disabilities.
  • Research should focus as much on care and support as on cure
  • A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community

We are now developing a formal working relationship with WHO in preparation for a new global dementia policy which will be discussed by the World Health Assembly next year.

Some of you may question whether we have the capacity to demand full participation in decision-making with professionals and politicians.

Generalisations about us are problematic because, notwhistanding our diagnosis, we are all unique individuals; some have more capacity than others but our levels of cognitive functioning can change dramatically in the course of a single day or hour.

Under-estimation of the capacity of people with all disabilities is the biggest single obstacle we face in remaining active citizens in our local communities.

No one would have predicted that children with Down Syndrome would complete secondary and tertiary education alongside their peers, that a person with an intellectual disability would address the General Assembly of the United Nations or that the UN Convention would be co-written in full partnership with persons with disabilities.

I say to you in all seriousness that you cannot understand the impact of dementia on people living with dementia without reading the books they have written. You all subscribe to evidence-based policy: these books provide evidence in plenty of the gap between policy and practice. I would go further and say that researchers need to consider the experience of people with dementia as hard data, just as important as data from the holy grail of randomised controlled drug trials.

My prescription starts with Kate Swaffer’s What the Hell Happened to My Brain? and continues with the others because each reflects a unique individual who is not only telling their story but making recommendations for changes in policy and practice and in research priorities. All of them describe dramatic changes in cognitive functions within a single day.

‘I CAN LIVE WELL WITH DEMENTIA’ STATEMENTS

We also have the ‘I Statements’ collected from people living with dementia in several countries around the world and which now form the basis of the Global Dementia Charter which international NGOs and professional associations are required to sign. These ‘I’ statements just happen to reflect key Articles of the UN Convention.

I will focus on two priority areas: diagnosis and ‘post-diagnostic support’

DIAGNOSIS

“I expect to have access to a doctor to check if I have dementia (art.25); medicine that helps and treats me (art. 26).

The first point to make is that very few people in Low and Middle Income Countries receive a diagnosis and that in the richest countries it depends on where you live and whether you can pay for it.

The stories told by people with dementia about the way they were informed of their diagnosis range from exemplary to the good, the bad and the unacceptably ugly.

Kate Swaffer has copyrighted ‘Prescribed Disengagement® to characterise the advice that she received at the age of 49 to “give up work, give up study, go home and live for the time you’ve got left.” Her husband was told he would soon have to give up work to care for her. She cried for weeks but completed an M.Sc. in Dementia Studies and is now studying for a PhD and travelling the world to advocate for a better life for people with dementia.

The late Richard Taylor, a clinical psychologist and a highly respected co-founder of Dementia Alliance, also cried for weeks after his diagnosis and describes symptoms and relationship problems seen in people with Post-Traumatic Stress Disorder.

His book Alzheimers from the Inside Out includes a list of 30 things that he would do or bear in mind if he was “an M. Instead of a Ph. D.” These should be glued to the desk of any professional charged with the responsibility of delivering a diagnosis of dementia.

Many people with young onset dementia have been handed a prescription and told to come back when they are 65. This can be particularly traumatic in mid-career and with responsibilities for young children and elderly parents.

Legal capacity and fitness to drive are immediately threatened by a diagnosis of dementia, rather than evaluated by independent assessment of functioning.

Worst of all, a newly diagnosed person of any age is immediately confronted by the stigma and fear associated with dementia. A study by the UK Alzheimers Society reports that one third report losing friends. Neighbours and people they know cross the street to avoid them and some family members stop visiting because they are afraid that they will need to care for them. When Richard Taylor asked a close friend why he had stopped calling and was told that he didn’t know what to say, he said, try “Hello”.

Social isolation is compounded by lack of confidence in going out because of fear of failing. One third of people with dementia and 50 per cent of care partners are clinically depressed. Unusual behaviour or expression of emotion may be labelled ‘challenging behaviour’ and treated with long term psychotropic medication.

A REHABILITATION PATHWAY

DAI recommends that that ‘post-diagnostic’ support which is only available in very few places should be reconceptualised as a rehabilitation pathway. A service along these lines is being piloted in Australia by the Queensland Health Authority. It is run by Dr Denise Craig, a clinical psychologist who worked in partnership with Kate Swaffer in designing it

Please take part in a short thought experiment:

What services would you receive if you sustained a severe brain injury as a result of a stroke, a road traffic accident or a penetrating gunshot wound?

While you are still in hospital but no longer under intensive care, you might be seen by a range of professionals whose long-term aim is to enable you to return to the maximum extent possible to the way you lived before the brain injury. That’s what we want for people with dementia.

These might include a specialist in rehabilitation medicine, a physiotherapist to help you to learn to walk, a speech and language therapist to restore language and communication, a clinical psychologist to monitor and restore cognitive functioning or consider the need for an appropriate psychosocial intervention and a social worker or counsellor to discuss your transition from hospital to home.

Once home, you are likely to be visited by an occupational therapist who will discuss with you and your partner ways in which your home and basic equipment such as your personal computer might be adapted to meet your individual needs.

USING THE UNITED NATIONS CONVENTION TO PROMOTE THE RIGHTS OF PEOPLE LIVING WITH DEMENTIA

People with dementia are included in the broad definition of disability in Article 1 of the Convention but have not been included in its implementation by their governments. By the same token, the dementia strategies now being launched by many governments who have ratified the Convention do not reflect the General Principles and Articles of the Convention.

There is a pervasive but profoundly mistaken assumption that people with dementia are not included in the Convention. It may also be due to the fact that the international dementia community has taken no part in its creation or implementation and is only now gaining access to rights which are established in international law but ignored in practice. Dementia Alliance International is in dialogue with the United Nations on this matter because it amounts to systemic discrimination.

President Obama exceptionally signed the Convention which commits the US government to certain General Obligations but Senate has twice failed to ratify it.   The 165 governments who have ratified the Convention are committed to its implementation and monitoring in international law. They can also be held to account by their own people, especially organisations of and for people with disabilities. Organisations for and of people with dementia are only now beginning to do so.

The Canadian government is currently in dialogue with the UN CRPD Committee which is studying its report on how it has implemented the Convention’s Principles and Articles. The Committee encourages civil society organisations to write parallel reports which are taken into account in its Concluding Observations and Recommendations and subsequently followed up.

The Alzheimer Society of Canada has recently joined with other Canadian disability organizations to argue for the inclusion of people living with dementia in the implementation and monitoring of the UN Convention. Furthermore, the Ontario Dementia Advisory Group, all of whom are DAI members, included access to the CRPD as one of their recommendations in testimony before a committee of the Canadian Senate.

CONCLUSIONS

I want to conclude by asking you to imagining two planets: Planet Disability and Planet Dementia. They spin on different axes but occasionally come close enough for their technology to reveal that there are human beings on both planets. Try as they might, they are unable to devise a way to communicate or join one another.

The whole of my professional life has been spent on Planet Disability where I have been a clinical psychologist, academic, policy adviser to governments and UN agencies but also worked in a voluntary capacity with Inclusion International, a world-wide federation of over 200 regional and national organisations for – but increasingly of – people with intellectual disabilities.

When I suddenly found myself on Planet Dementia, it really did seem to be a very different world:

  • first because of the prominence of the medical profession and biomedical research, Health Ministries and WHO
  • second, because of the comparative absence of protest about drastic cuts to services and supports
  • but mostly by the absence of human rights in general and the then newly launched UN Convention in particular not only from government policy and professional practice but in the leading dementia research and professional journals and in those of national Alzheimer Societies.

The last two years reflect a shift of emphasis in all three areas.

Kate Swaffer’s demand for research to focus as much on care and support as on cure is increasingly reflected in research funding, the policy of the World Dementia Council and the UK Alzheimers Society. Sadly, too few researchers from the social sciences have so far submitted grant applications.

In the last analysis, improvements in services and supports to enable people with dementia to live well and to enjoy a higher quality of life in the community depend on a much higher level of awareness of dementia not only in the general public but among professionals and policy makers.

Dementia-friendly communities have contributed a great deal to raising public awareness but DAI takes the view that too many reflect an US and THEM perspective. This is inappropriate for people with dementia who have been active members of their local communities all their lives

The pervasive under-estimation of our potential contribution creates oppressive and humiliating barriers to full partnership. Some of us have even been publicly accused of being imposters because no one with dementia could possibly address a conference.

The last word goes to Professor Gerard Quinn, a distinguished academic lawyer and one of the first to secure disability rights as a United Nations priority:

“The UN CRPD is a mirror to society. It makes us face up to our own values and it forces us to acknowledge the large gap that still exists between the ‘myth system’ of our own values… and the ‘operations system’ of how these values are dishonoured in daily practice. Thus the Treaty is a force for rationality as well as a vehicle for carrying these values squarely to the heart of the disabilities field.

As with all mirrors, we can refuse to look into them; we can look at them but ignore their reflection or we can take notice of our reflection and commit to a process of change”. (Quinn 2009).

Peter’s power point slides can be downloaded here: Peter Mittler-Toronto-slides-27 July

Emeritus Professor Peter Mittler
DAI Human Rights Advisor
UN Consultant on disability
Former Advisor on Disability to UK Government
Former President, Inclusion International

Copyright 2016: Dementia Alliance International and Peter Mittler