Category Archives: Human rights

Thank you to the outgoing DAI Board

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On 15/16 November, DAI held it’s this Annual General Meeting, and sadly we had a number of resignations, but also a number of nominees to fill the vacancies; This year, for the first time, we had more nominees than vacancies. Some members have resigned for health or personal reasons, and others as they have felt it time to allow new members to take leadership positions. Perhaps the most important thing as leaders that we can do, is pass the baton to new members.

It is an exciting time for DAI, and this week, as Chair, I would like to specifically thank the outgoing board members. In the next few weeks we will be providing our first formal Annual Report for our members as well, and I am thrilled to know that Dementia Alliance International, an advocacy and support group, still remains of, by and for people with dementia, and is making excellent progress.

Thank you to the outgoing Board 2016 members 

We extend our deepest thanks and sincere gratitude to Susan (Sue) Stephens, who has served on the board since we started on January 1st, 2014. DAI started with seven co-founders, from four different countries, and Sue is one of our founding members from Canada. Sue’s wisdom, intellect and humour has been invaluable to us, and we know our friendship will continue. Thank you Susan, from us all.

Special thanks also to our outgoing Vice Chair Helga Rohra, Board members Leo White and Jeanne Lee, and outgoing co-opted board member Mary Radnofsky. Whilst we are sad to see you move off of the board, we accept and understand your personal needs to step down, for health or personal reasons.

Sue, Helga, Jeanne, Mary and Leo: we greatly valued working with you on the board, and know we will still be in contact with you as your DAI family.

DAI has been honoured to have you all working more closely with us, and have been humbled by your friendship and work for all DAI members, and for all people with dementia globally.

The commitment to DAI and vision of all of our out going board members has been truly commendable, and we will miss you all greatly as board members. Being a board members brings with it a commitment in time and energy, and a loyalty to our organisational mission and vision, but does not prevent members from being active in their own local or national dementia communities. I have no doubt many of you will continue to work tirelessly for the good of all people with dementia in your own communities.

Next week, we look forward to introducing you to our new Board members for 2017.

Sincere thanks from us all,

Kate Swaffer
Chair, CEO & Co-founder
on behalf of the DAI membership

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

DAI Media Release: conference guidelines

Dementia Alliance International is today launching the first edition of our conference guidelines based on feedback from people with dementia and family care partners since 2012.

Of course, it was not possible to receive feedback from the more than 47 million people currently diagnosed with dementia, but we did engage with hundreds of people from more than 12 countries.

Your feedback is important, and if you have ways in which the next edition of this document could be improved, we would appreciate hearing from you.

“Because members of Dementia Alliance International (DAI) have a unique perspective on conferences we decided to assemble responses from post-event informal email surveys of the past four years to see how people with demen a and care partners feel about the access, support, and enablement provided at professional mee ngs of Alzheimer’s Disease Interna onal (ADI) and other conferences or events.

In other words, we asked if such events are dementia friendly, accessible, and accommoda ng for people of all ages and disabilities.”

You can download the full report here supporting-and-accommodating-people-with-dementia-at-conferences-and-other-events_2016, or email us for printed copies at [email protected]

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HOW THE UN PROTECTS OUR HUMAN RIGHTS

AN INTRODUCTION TO THE UN SOCIAL FORUM

By Peter Mittler and Mary Radnofsky

From October 3rd-5th DAI members, Mary Radnofsky and Peter Mittler had a once in a lifetime opportunity to take a full 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, I 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).

I stressed that I 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”!

DAI: A growing global movement

Screen Shot 2015-09-21 at 8.09.05 amAs the work of DAI becomes increasingly global, and with members in more than 38 countries now, it is imperative we do more than have a ‘Translate’ button on our website, which is in reality, is not very accurate in many of the languages.

Without major sponsorship, of course, doing this is costly and mostly unaffordable, but we have many friends and supporters of our work and people with dementia in their own countries who are very generously willing to support our work, and today, we are highlighting two of them.

So, it is important we acknowledge that DAI is an “Advocacy and Support group, of by and for people with dementia”, with “the support of a lot of friends, which include our families and care partners, as well as a growing number of academics and other colleagues committed to improving the lives of people with dementia and our families”.

see-the-person-italian

Eloisa Stella from Italy is an applied anthropologist, a mental health advocate, and the co-founder and vice-president of Novilunio (novilunio.net), and we thank her for her support of DAI and all people with dementia in her country especially.

This organisation is an Italian non-profit organization dedicated to promoting quality of life services and social inclusion of individuals with cognitive decline.   She has very generously translated our Human Rights publication, and has been highlighting our work on her own website and publications, by translating some of our blogs. Thank you Eliosa.

The Italian translation can be downloaded here The Human Rights of people with dementia: from Rhetoric to Reality and read the blog about DAI (if you read Italian!!) here…

It you read Italian, you can also see some of our members stories and our work translated on her organisational website. Ken Clasper from Durham in the UK features in this article.

The second DAI friend we wish to highlight today and express our sincere thanks to for her support is Lyn Chenoweth.

Lyn is Professor of Nursing the  Centre for Healthy Brain Ageing at the University of New South Wales. Lyn has generously funded the Arabic translation of our Human Rights publication, which you can download here The Human Rights of people living with dementia-from Rhetoric to Reality_arabic.

We also have been provided with a Spanish translation of the Human Rights document worked on by a number of DAI supporters currently being formatted, and will write a blog focused on one of our DAI members who presented in Mexico on World Alzheimer’s Day last week (via video) and our Spanish translation of this document and her presentation next week.

It is incredible that we are becoming truly global in this way, as we work to support members who do not speak English.  We also have someone generously working on a translation in Portuguese, and hopefully soon, Japanese as well.

DAI is also working on videos for a number of non-English speaking countries to support both the advocacy organisations and their members, with subtitles in a number of different translations. Again, as ewe mostly rely on pro bono support, it takes time, but, importantly, it is in progress.

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).

Human rights are not an abstract concept, by Owen Miller

blogs_guest_owenmiller_140x140px-wpcf_128x128With permission, we are publishing this blog written by by Owen Miller. It was initially published as part of the Scottish Council for Voluntary Organisations (SCVO) #RightApproach campaign, and can be viewed here.

Thank you Own, for permission to publish it in full here for our members and supporters, and thank you Alzheimer’s Scotland who have lead the human rights base approach to dementia, which DAI, with the support of our Human Rights Advisor Professor Peter Mittler is now working so hard towards making a reality globally.

Human rights are not an abstract concept

By Own Miller, first published on September 1, 2016

“Taking the #rightapproach empowers people with dementia and their carers.

Human rights are inalienable to each and every person. They cannot be given to us. But they can be obstructed or restricted by a number of factors, some unintentional.

Every day we exercise our human rights in a number of ways, so much so that we take them for granted. Our communication, our choices and our actions are human rights playing out in practice. They are fundamental to who we are as individuals and allow us to play active roles in the societies in which we live, take part in activities we enjoy and go about our lives in a meaningful way.

But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. Often this comes about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in their best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.

Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level.

The PANEL (Participation, Accountability, Non-Discrimination, Empowerment and Legality) principles provide a strong framework for ensuring that a rights-based approach is taken in in practice. This can be applied in a range of contexts and settings, from the way an individual is treated as the result of stigma up to the highest level of decision making on health and social care services.

Alzheimer Scotland’s public policy work is grounded in a rights-based approach at both a national and local level. A fundamental part of this involves making sure that the views and experiences of people with dementia, their families and carers, underpin our own internal policy development; for example, our 8 Pillars Model of Community Support and Advanced Dementia Practice Model.

Externally, the Scottish Dementia Working Group and the National Dementia Carers Action Network are well established national groups which have led the way in showing how involvement can work. Both groups meet with Scottish Ministers and civil servants to discuss issues which matter to them and have been involved in the development and implementation of Scotland’s dementia strategies. They have also informed national training programmes such as the Promoting Excellence Framework and worked with academic institutions to share their experiences with nursing and Allied Health Professional students to raise awareness of future generations of practitioners.

More recently, local groups have come together to shape their communities. They have been engaging decision makers within Integrated Joint Boards, helping local businesses and organisations to become more Dementia friendly, and working with local schools to raise awareness of dementia amongst younger people.

People with dementia and their carers have time and again shown us their commitment to working and supporting policy, strategy and their communities, in order to ensure that their experiences drives improvements.

There is a common perception that human rights are abstract concepts which exist only in the domain of legal professionals and policy makers, with no bearing on real life. This is demonstrably untrue – we need everyone across the statutory, third and independent sectors to support involvement and engagement in a meaningful way. When given the opportunity, people with dementia and their carers are more than able and willing to exercise their human rights in affirming and meaningful way.”

Important: Opinions expressed by bloggers are their own and don’t represent those of the Scottish Council for Voluntary Organisations.