“Patient care is more than just healing — it’s building a connection that encompasses mind, body and soul.
If you could stand in someone else’s shoes . . . hear what they hear. See what they see. Feel what they feel. Would you treat them differently?”
CEO Toby Cosgrove, MD, shared this video, titled “Empathy,” with the Cleveland Clinic staff during his 2012 State of the Clinic address on Feb. 27, 2013. Published on February 27, 2013.
This is a reminder to us all to walk in each others shoes before we ignore, criticise or talk harshly to or about…As we work together, towards dementia friendly and accessible communities, we must keep this uppermost in our hearts and minds.
The power of collaboration, of acceptance, of being able to accept healthy criticism, in order to improve the lives of everyone in our community, including people with dementia and our families, is paramount to the work DAI does, and to all those individuals or organisations working tirelessly to make a difference.
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)
Following on from our first blog, welcoming you to the new year, we begin the years blog series with our first one being the last account from Mary Radnofsky of the Social Forum she and Peter Mittler attended last year, representing DAI and all people with dementia.
Thanks again to them both for their excellent work, and special thanks to Mary for writing this particular series of blogs. It is quite a long read, so grab a pot of tea or coffee, and sit yourself down in an arm chair for a very interesting read.
Mary’s 4th Blog from the UN Human Rights Council – Social Forum
10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), October 3-5, 2016 (Geneva, Switzerland)
You know that family reunions are often fraught with peril when your cousin the hunter is seated next to your aunt the vegetarian, or when your nephew in med school talks about his latest dissection over turkey & gravy. Sometimes the things people say make us uncomfortable at the dinner table, and when it’s family, we often let them know – either with a disapproving glare or an interruption, sometimes a raised voice or an abrupt departure. Rarely does it come to slinging a handful of mashed potatoes across the room. (In fact, no food fights were allowed when I was growing up.)
So at the United Nations, when people with common problems but multiple perspectives get together to discuss how best to solve them, I was very comforted to see that everyone behaved quite respectfully. For the most part, everyone had to hear each other out if they wanted a seat at the table.
I saw only one exception, and it was on the last day of the forum. An audience member who’d been given two minutes to comment was rambling on through the five-minute mark with no intervention by the moderator. Another lady in the audience was squirming in her chair, looking around, raising the palms of her hands, then looking at me, as if appealing to me to do something. I whispered, “It’s ok; the moderator will handle it.” She shook her head no, slapped her knees, and loudly said, “But she’s not doing a thing!”
I was shocked by the breach in protocol, not having seen anything like it in over 20 hours of meetings. So I tried to calm her, and again whispered, though more firmly, “The moderator will take care of it.” She whipped her head around to search the audience and roll her eyes, then made an audible protest about how much time was being used, and how unfair it was. She’d metaphorically thrown a handful of mashed potatoes against the wall. But none of it stuck. No one reacted. I sat very still, facing forward, with my eyes focused on the panel of experts, also ignoring the outburst. But I expected a gravy boat to come flying from the opposite corner at any second.
About a minute later, the moderator thanked the speaker for her comments, and gave the floor to the next person. This is a civilized place, and moderators understand that sometimes it’s more important to allow a vague, meandering voice to be heard, than it is to respect time limits.
There may be criticism, avoidance, and disagreement, but no food fights at the UN. Enjoy.
Tuesday, October 4, 2016 Making Development Inclusive.
Moderator: Ms. Lidia Pretorious, Chief Director, Rights of Persons with Disabilities, Department of Social Development of South Africa
Ms. Judith E. Heumann, Special Advisor for International Disability Rights of the U.S. Department of State
Mr. Michael Njenga, Board Member, Pan African Network of Persons with Psychosocial Disabilities, stated that the purely medical model for assessment is not effective. There must be a needs-based social model.
Ms. Priscile Geiser, Chair, International Disability and Development Consortium IDDC
Ms. Rosangela Berman-Bieler, Senior Advisor on Children with Disability, UNICEF
Gian-Pierro Griffo, from Italy, spoke about the UN Sustainable Development Goals (SDGs), and that people with disabilities need to be consulted on the decisions and events that affect their lives. People are the actors in their own country in working for development. They have the capacity to apply the Convention, so their knowledge and competence need to be included.
Tuesday, October 4, 2016 Side Event: Underrepresented Groups of Persons with Disabilities.
Co-organised by the African Disability Forum (ADF), Pacific Disability Forum (PDF), World Federation of the Deafblind, World Federation of the Deaf, International Federation for Spina Bifida and Hydrocephaly, International Federation of Hard of Hearing People, co-sponsored by the Permanent Missions of (TBC), with support from the International Disability Alliance. (Transcription available at https://synchshare.de/ida-cassandra)
Peter was given a generous amount of time to speak. Part of what he said was on quality of care, “We have evidence from the Organisation for Economic Co-operation and Development (OECD) that dementia gets the worst care in the developed world and we know it is unsatisfactory in the less-developed world. Many don’t get a diagnosis. Because young people are leaving the villages, old people are left isolated.
Peter also spoke on the successes of DAI: “We have persuaded the Alzheimer’s Disease International, which is the main international organization for people with dementia, with 85 national societies, to support our policies. So now they have a human rights policy, which includes full access to the CRPD and other conventions.”
Peter was critical of progress saying, “As far as we can see from CRPD reports, not a single member state has included people with dementia in their implementation of the convention; we ask why not, because we are fully entitled to it in Article one. That is indisputable, yet we are absent.” He added that, “About 30 countries have launched dementia strategies. They’re quite good dementia strategies; they contain the right ingredients and they may say nice words about the CRPD, but they don’t use the CRPD which they have ratified in creating dementia strategies.”
Peter also discussed the rights of children: “I’m sorry that no one in this meeting has mentioned that of the 57 million children out of school, more than a third are children with disabilities… I’ve been trying to draw attention to this for 15 to 20 years, ever since 1990 when the UN promulgated Education for All… We have a promise of a report from UNICEF institute of statistics in Montreal, with disability-disaggregated data for the first year of the SDGs but it’s in the coffin marked ‘when data become available.’ There is only some focus on children already in schools. And the UNESCO monitoring reports have said that, year after year after year. Some of us have protested about it; nothing has happened.”
I then spoke about the need for “Rehabilitative Education” (academic or skills learning) for people with dementia: (Transcription available at https://synchshare.de/ida-cassandra)
“My name is Mary Radnofsky; I’m from Dementia Alliance International. My comment is about lifelong learning. I’m interested in knowing if “Rehabilitative Education” is considered part of this category of inclusive learning. When people with dementia are diagnosed, it is assumed that they can no longer learn and this is, of course, a myth that needs to be broken; it is entirely false.”
I said that “Rehabilitative Education” should apply to people with dementia, since cognitive education is already guaranteed for people with disabilities to be lifelong learners. This could be another tool for us in the legitimate argument for RE-teaching us things that we lose due to degenerative brain diseases. Despite myths that we can no longer learn, the DAI Chair is getting her doctorate, I explained. I strongly advocate for anyone with dementia to be able to take courses in finance, formal logic, or math, for example, when we start to lose the ability to balance our checkbook or manage finances. And I declared that this “Rehabilitative Education” should be funded, just as any other rehabilitative speech or physical therapy.
Tuesday, October 4, 2016 Strengthening Accountability
Moderator:Mr. Stefan Trömel, Senior Disability Specialist, International Labor Organization (ILO
Ms. Malena Pineda Ángeles, Chief of program persons with disabilities, National Human Rights Institution of Peru
Mr. Alastair McEwin, Commissioner, Human Rights Commission, Australia, wants to eliminate discrimination against people with disabilities, so they have equal rights before the law, and promote principle of human rights the same as with the wider community. He says a government should be able to set up standards in any issue, to give community guidance, to be sure they comply with their Disability Discrimination Act. But he also said it takes time and resources to maintain and monitor changes.
Ms. Godliver Omondi, Senator from Kenya
Mr. Geir Jensen, President of the World Federation of the Deaf-Blind – made a statement read by assistant. He spoke of capacity-building by the International Disability Alliance (IDA) which has provided technical support to advocates from over 90 countries in 62 national overseas workshops. People became engaged with treaty bodies. Specific and mainstream monitoring processes were managed. Increased use of these mechanisms reinforced UN mechanisms too. As they are not a homogeneous group, he said, it’s a challenge to include all disabilities; there is a lack of reasonable accommodations , and extensive training is still needed for assuring the CRPD perspective is recognized.
Peter and Mary met in the café with Zhijun from the Peoples Republic of China, who was in Geneva studying about human rights, and asked about people with dementia in China; he said the challenges they still have, are for families to deal with stigma, hidden [harmful] practices, and basic human rights issues.
Peter and Mary also met in the café with Catalina Devandas (from Costa Rica), UN Special Rapporteur on the Rights of Persons with Disabilities, who asked us to suggest ways in which Member States can provide services for people with dementia for her upcoming report. Basically, she says, it is be the obligation of the state to provide support from a human rights approach. We told her about some of the DAI documents we’re working on, (e.g. the report on accommodating people with dementia at conferences, and creating dementia-friendly communities) and that we needed to get them ok’d by the DAI president to send them, but that we would get a summary to Catalina by the end of October, which she said would be fine, since her report would be published in March 2017.
Wednesday, October 5, 2016 Realizing the Human Rights of Persons with Disabilities
Moderator: Mr. Vladimir Cuk, Executive Director, IDA.
Ms. Theresia Degener, vice-chair of the CRPD Committee insightfully and clearly-explained about the implementation of the CRPD and monitoring of the practices in the 30 first countries that have been reviewed.
Wednesday, October 5, 2016
Implementation of Agenda 2030 under the CRPD: The Future We Want
Moderator: Bat-Erdene Ayush, Chief, Right to Development, OHCHR Academia
Ms. Abia Akram, CEO National Forum of Women with Disabilities of Pakistan
H.E. Ms. María Fernanda Espinosa Garcés, Ambassador Extraordinary and Plenipotentiary, Permanent Representative of Ecuador to the United Nations in Geneva
Ms. Eppu Mikkonen-Jeanneret, Senior Adviser for Global Social Policy, Ministry for Foreign Affairs of Finland
Ms. Sanja Tarczay, President of the European Deaf-blind Union
“I suggest that the United Nations Human Rights Commission create a Library of Best Practices, with Primary Resources used in each country that has ratified the CRPD, to improve the conditions of life for people with disabilities. These documents would not be reports by officials, but rather they would be brochures, workbooks, educational booklets, handbooks to help people in airports, computer programs to assist people, phone Apps tied to the CRPD, etc.”
Whatever we can do to spread knowledge, will help people with dementia to make better decisions about what they want and need, to fulfill their human rights.
Closure of the Social Forum was celebrated in a “Family Photo” by a few of us at the end of the meeting. (I’m not in this one because I was taking it!) You get the idea: the world’s family at the annual reunion, each with a special dessert to offer.
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.
Firstly, we wish everyone a safe and peaceful festive season, and thank everyone for their support and input to DAI. It has been a very busy and productive year, and we are grateful to our members, our supporters, our sponsors and especially to anyone who has made a personal donation to help us continue with out work.
Rather than ending the year here with a wrap of our activities, which we will do when we publish our first Annual Report either before the end of December 2016, or early in January 2017, instead we are posting two very important Christmas wishes…
The first request or wish was written by one of our new board members, also the Vice Chair of the Ontario Dementia Advisory Group, Phyllis Fehr.
“To the nurse who may care for me:
Hi, I am your assignment for today. I know I am just one of many but I ask you to please take the time to know me. You see I once was also a nurse. That really doesn’t matter as I am a human being. I come with an education and feelings. I am also a wife, a mother, a grandmother and more. Please take the time to read my chart as you can gain much knowledge about me before you ever meet me. In it you will find my medical history; this may give you a glimpse of what to expect from me. It will tell you what is being treated now.
Know full well that, that may not be my only problem.
What you see when you walk through that door may not be very telling. As you would see a patient that looks well and capable, able to do things on her own. If you don’t take the time you will not know that I have a cognitive impairment. You may not know that what ever you tell me is lost the minute you walk out of the room.
Don’t ridicule me for writing things down; you see I do this, so I will remember which will make your job easier in the long run. You see if you took the time to know me you would understand this, you would have not asked me if I was a baby who can’t remember anything. You would not embarrass me in front of others.
You see I know I have a problem, I am just trying my best to live well with what I have. If I can make notes then I can explain to my family what is happening, rather than them having to interrupt your already busy day to find out what is happening. I want to help you but in order for this to happen you must understand me. Well not just me all patients that you care for. You see stress makes my cognitive impairment worse, so yes you may have your hands full but I don’t mean to be a problem.
You see what is happening is that I am having a problem that I may not be able to comprehend or express but if you are aware you will be able to help me through this. You see I have early onset Alzhiemers, it started in my late 40’s.
No, I don’t look like a typical Alzheimer’s patient.
So it is hard to see it, but look, look there in my chart, oh there it is. If you aren’t well informed on the disease ask your educator. You could also go on line or you could become a dementia friend, they have lots of educational material on the dementia friends web site.
If I cause you any problems I do apologize. I do not mean to be a problem but this is what I live with. This is what many people with cognitive impairment live with, no matter what the cause of the impairment.”
Phyllis Fehr Copyright 2016
All people with dementia, and all members of Dementia Alliance International (DAI), have one other important Christmas wish:
“If you don’t believe we have dementia, please contact us in person, and make the time to find out about our the reality, before you accuse us of not having dementia behind our backs.
If it is really necessary in order to still believe us, because ‘we don’t look or act like we have dementia’, most of us would invite you to come with us to our next doctors appointment.”
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.
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.
The UN Human Rights Council – Social Forum – Part 3 of 4 Blogs
10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), October 3-5, 2016 (Geneva, Switzerland)
By Mary Radnofsky Ph.D.
Please note: Mary has provided us with Part 1 (of 4) (Titled Update 2) and Part 2 (of 4), which you can read first if you are new to our site…
“I hope you’ve digested the last couple of blogs from the United Nations Social Forum, because here’s a bit more. I’ve summarized comments from international delegates and representatives of Civil Society (non-profit groups and non-governmental organizations).
I also attended Side Events, which are held in smaller rooms with a more casual setting, and the opportunity to speak with other representatives of Disabled Persons Organizations. There are many flavors to these sessions, as you’ll see, in the diverse comments from governments and groups trying to implement the Convention on the Rights of Persons with Disabilities. You may not have heard of many, as they deal with all sorts of disabilities, not necessarily dementia. But they often have interesting ideas, and it’s always good to try something new! Bon Appetit!
Tuesday, October 4, 2016 Meaningful Participation and Empowerment
Moderator: Ms. Rosangela Berman-Bieler, Senior Advisor on Children with Disabilities of the United Nations Children’s Emergency Fund (UNICEF)
Mr. Robert Martin, intellectual disability rights activist, and incoming Board member of CRPD, says the CRPD has made a difference in some countries more than others. In NZ, it has brought the 7 Disabled Persons’ Organizations (DPOs) together. There, People First is for learning disabilities, (they think it’s a more respectful term than intellectual disabilities). They have an action plan to discuss health, for example, and responsible accommodations. This means the pace of the meetings is not too fast; peoples’ full names and organizations are used, not just acronyms (like I use here!). They’ve learned this helps other people too, and they’re training people to become meeting assistants. They print documents in large font. They go with people to meetings beforehand, and debrief afterwards with members. This allows for more meaningful participation, so they can have a voice at national and international levels to influence policy and practice. They’ve done this for over 30 years.
The following people also spoke, and their comments were recorded on UN TV.
Ms. Gerel Dondovdorj, CEO, Mongolian National Federation of the Blind, Mongolia.
Mr. Pascal Benga Tonangoye, Magistrate at the Court of Auditors of Gabon
Mr. Khalid Al Nuaimi, President of the Arab Union for the Blind
Tuesday, October 4, 2016 Side Event: Independent Living
Lila Angelova – spoke about working on CRPD Article 19 across the world (living independently and in the community).
Nadia Hadad – asked how local culture affects rights. What steps can be taken to address the challenges?
Prof. K. Al-Naimi – Qatar – said people with disabilities want to be independent, with the right to get support from the government and family.
Tefera – Ethiopia said that there is not independent living for people with disabilities in the rural areas of the country; there is also the problem of traditional culture and beliefs that interfere with advancement.
Anna Lucia Arellano – said that in Latin America, CRPD Article 19 (on inclusion and participation in the community) is being implemented in stages. Families are most important in addressing the inclusion problem. The community is not conscious they have to include people with disabilities in work or services, so people with disabilities must keep living with parents longer than would be necessary.
Facilitating inclusion is not about fulfilling a dream, not what a family may or may not want, but rather, it’s about RIGHTS in 19 countries in Latin America. The goal is to empower people and make the CRPD a reality. Right now, parents are too afraid even to have hope for their children with disabilities to live independently in their communities. This is now about changing the cultures of how families think, how support systems can help people rethink their rights.
Davar from Transforming Communities for Inclusion in Asia, said that once the rights of the most marginalized are respected, then the rights of all people will be included. It is time to shift from the medical model to the social paradigm.
Decision-making is complex. People move in groups, not alone, but as a culture. So in Asian cultures, decision-making is done in groups, and should not be done by the government. That’s the strength of the community there, and should be naturally maintained. The poor Indian in the slums will not get a Personal Assistant; it’s just not going to happen. So communities need to be aware of those people that do need support, and provide it.
A post-colonial policy framework discriminates against a number of people with disabilities. They have been interned against their will, because anyone in society can refer them and put them away. This includes people with leprosy, vagrants, etc. Some are kept in cages. Some people say that institutions are part of the community. Others have a group home, but they cannot go out into the community; so there’s a spectrum of placements.
There’s backtracking in the post-CRPD era now, to pull out the old colonial law from the state. But in other situations, the state is virtually absent, and so life itself is quite difficult.
Imed Ouertani – Tunisia. How does the government help? For more “protection” of people with disabilities, they’ll build more institutions. That didn’t work for the past 50 years, though, so the question is, will it now?
They asked how people with disabilities think about themselves and the future, and how can we change people’s ideas? A Personal Assistant could work for 6 hours a week, but doing what? Families are afraid to leave people with disabilities to make their own decisions. Yet the average person has the right to make mistakes and take risks. People with disabilities need and want to live in the community, too, and make the same mistakes as anyone else.
The Tunisian constitution has a new article, created by people with disabilities, that allows people with disabilities to have any kind of support needed to live in the community. There is a push for a law against discrimination based on disability.
Theresia Degener – Vice-Chair ofCRPD Committee , reminded us that that CRPD is an international treaty for which Member States can be held to account but is not legally binding. The Articles address choice, autonomy, support, availability of community services, etc. The social benefits, if available, are given to an agency and not to the person in it (e.g. accessible housing, PA, addressing denial of legal capacity). However, payments to individuals in the form of benefits are required under Article 28 (Adequate standard of living and social protection.
Local culture can interfere with the realization of the right to independent living, while the medical model focuses on their impairment. We need instead a culture of peer support, as we can learn from each other. Even though we’re disabled, we can be teachers. If I’m taught by my peer, the service provided me will be all the richer, because I can identify better with someone like myself.
Steps are being taken to implement the human rights model of “disability.” For example, “Independent” living doesn’t mean living alone in isolation. We need to re-think the concept of independence: Mountain climbers have equipment; some of us have accommodative devices. Others need accessible housing and services. It’s time to provide incentives and sanctions for service providers.
But currently there are paternalistic attitudes, such that everyone else thinks they know what’s better for us than we do, because there is an assumption that because we have some defect, we must be completely defective. It’s part of the all-or-nothing thinking pervasive in all cultures at one time or another.
Gian-Pierro Griffo, from Italy, pointed out the influence of a country’s culture can have on CRPD to such a degree that it can’t be implemented. He also raised the question of poverty, a more dangerous and urgent issue keeping the Convention from being respected.
So we end this part of the Geneva blog on thoughts of Italy. Spaghetti and tomato sauce seems like a simple, cheap meal, but there’s a lot that goes into a sauce to make it Italian. You can’t just assume that everyone is going to like it if you cook it up somewhere in New Jersey. Well, we’ve still got a lot to learn about making international recipes palatable for everyone. For now, though, the Convention on the Rights of Persons With Disabilities is trying to find just the right flavour that will appeal. I’ll let you know how that’s working out in the next part of my blog.
Time now, for a scoop of sorbet.
Sincere thanks to DAI members Professors Mary Radnofsky and Peter Mittler from all of our members and from the global dementia community for representing us all so well.
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!
Dementia 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
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.
PART 2 of 4: Blog from the UN Human Rights Council – Social Forum
10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD)
By Mary Radnofsky Ph.D.
October 3-5, 2016 (Geneva, Switzerland)
Remember when you’d go to the cafeteria, push your tray along a track, and wish you could take one of – well, everything? You’d be reasonable, though, and choose carefully your appetizer, main course and side dishes. Dessert, however, required getting one of each! As a result, your tray would get a bit crowded. Luckily, you thought to grab a second tray, so all you had to do was slip it out from under the top one, and fill it up.
Here, then, is your second “tray” from DAI’s representation at the UN Social Forum, with Peter Mittler and me – Mary Radnofsky. Hope you liked the “appetizers” in my last posting, because now you’re in for the a few main courses and side dishes. Think of it as a smorgasbord! So grab a cup of tea, have a seat, and enjoy a taste of how the world is trying to apply the Convention on the Rights of Persons with Disabilities.
Monday, October 3, 2016 On Accessibility
The UN Convention on the Rights of Persons with Disabilities (CRPD) promotes equal access for all. Towards that end, the head of Brazil’s National Civil Aviation, Marcelo de Souza Carneiro Lima, described the changes and adaptations that he made both structurally and in terms of services provided at the airport authority to prepare for the 2016 Para-Olympics in Rio de Janeiro. They had over 1000 people in wheelchairs; some with guide dogs, walkers, crutches, companions, people with intellectual and multiple disabilities.
In the introduction of Brazil’s “Guide to Passenger Rights and Accessibility,” all travellers, including those with disabilities, are guaranteed the chance to “lead their lives independently, safely, and autonomously in public spaces and when using public facilities and equipment.” It’s a formidable promise, backed up with considerable resources, brochures, complaint procedures, a human rights ombudsman, a 24/7 human rights hotline, and a lot of good will to do what’s best for all people. An impressive accomplishment.
Tuesday, October 4, 2016 The Psychosocial Side
Michael Njenga – Kenya said that people with psychosocial disabilities are not allowed in their communities to choose their own clothes, attend weddings, or make formal and informal decisions. It is difficult to even convince doctors to deal with patients without them forcing a certain kind of treatment on them.
Rosa Damayanti – Indonesia said that families can do whatever they want and it’s not illegal: e.g. put a person with dementia in chains, on blocks, in institutions with constant physical restraints. But the government can’t close the institutions, because the people would be out in the street. Family would reject them anyway. Something needs to be put in place if they close the institutions. It’s impossible to have a formal guardianship system, but they would like to have supported decision-making in Jakarta.
Solano Carboni, from Costa Rica, explained that guardianship was removed and so one person no longer has the power to do substitute decision-making for a person with dementia. The person with the disability can appoint a guardian, and a lawyer is not necessary. So it’s free. This kind of guardianship can be reviewed periodically, or the family can ask for legal access and personal assistance.
Peter spoke emphatically about the stigma and marginalization of people with dementia.
In South Africa, support groups are perceived as controlled externally, and so looked upon with disdain. User groups and support groups do exist, but the bridge needs to be made with people who need them.
Salam Gomes – co-chair of the World Network of Users and Survivors of Psychiatry, Colombia has seen a lot of suffering, but believes we should highlight peoples’ abilities more than we do their disabilities. Families are affected in many ways. Supporting the person means being there at all times, which empowers the person. Families need to be solid support, not sources of dependency. He said we should generate a system that creates freedom for decision-making and creates freedom. We must minimise risk, of course, but improve the quality of life. Inclusion should be seen in education work life, community.
Tuesday, October 4, 2016 Strengthening Equality and Specific Measures
Ms. Lidia Pretorious, Chief Director, Rights of Persons with Disabilities, Dep’t of Social Development in South Africa said they have statistical measures, and track government performance, but realize it likely doesn’t change anything at the level of the user of services. So she said they need a dynamic, evolving system, not one that has a 5-year plan, because as the world moves ahead, they stay 5 years behind, and essentially regress.
Ms. Ana Lucía Arellano, Chair, Latin American Network of Non-Govt Organizations of Persons with Disabilities and their Families, commented that the situation is critical. There are scarce resources, but they need to educate the family, and reach people with disabilities as they don’t yet realize they can raise themselves up. Many have low self-esteem; and she said we must design global strategies so people realize they’re entitled to reasonable accommodation and support at a national level. It sounds as though the governments of the country don’t make an effort to get the word out. They don’t give the schools proper support. She said they need to stop backtracking, and align the 2030 agenda with the convention. She reiterated that she wants change, and to get something tangible.
Ms. Esther Kyozira, National Union of Disabled Persons of Uganda – explained that “Reasonable Accommodation” is not law there; victims that theoretically could complain (based on the human rights convention) don’t know that they can. People who are in need, are not aware or empowered at all.
The Interactive Dialogue includes the voice of people from the audience.
Richard Rieser, World of Inclusion, UK – said that we need reporting procedures; some schools may accommodate, while others do not, but to whom does one complain when it doesn’t work right?
Salam Gomes (WNUSP, Colombia) talked about the exclusion of people with psychosocial disabilities, who are in close relation to those with intellectual cognitive impairment, but let’s not stick on the label of “mental” disability, which can cause confusion. He asked that we think about the institutionalized and those in prison. In Colombia, they’ve made progress in disability law, recognizing psycho-social conditions such as depression, which is one of the primary reasons people leave their jobs.
In Argentina, however, “reasonable accommodation” is left to the discretion of the employer, leaving employees quite without recourse, leading to another classic social Darwinian environment, where only the strongest survive.
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,
Chair, CEO & Co-founder
on behalf of the DAI membership
Highlighted here are the last two DAI “A Meeting Of The Minds” Webinars for 2016. We welcome you to join us, and suggest you book in now, as the Festive season is almost upon us!
If you follow the link to register for each event, you will find out the times in your city and more detailed information about each event.
November 23, 2016 – 3.00 PM (EST) New York USA
November 24, 2016 – 7.00 AM Sydney (EST) Australia
About Myrra’s session: Self care is self-evident from early childhood on. Being deprived from self care goes at costs for dignity. The new concept of social health in dementia indicates how interpersonal relations can help to deal with the threat of declining self care. Social health involves making a dynamic balance between opportunities and limitations, affected by external conditions such as social and environmental challenges. As opposed to prescribed disengagement, social health focuses on people’s capacity to fulfil their potential and obligations and the ability to manage their life with some degree of independence despite a medical condition.
Consistent with the mission of dementia advocates, the focus is on what people can do and no longer ignoring capacities. Ignoring capacities unnecessarily contributes to exclusion and suffering. A social health hypothesis can be formulated stating that use and stimulation of remaining capacities and social inclusion improve quality of life. The effects of several psychosocial interventions such as occupational therapy support this hypothesis. These interventions support self care and facilitate normal life. The verious interventions will be discussed in the webinar. The results of interventions focusing on social health are gradually contributing to a turning point in dementia care and policy: the replacement of the disaster scenario with the scenario of living well with dementia.
December 15, 2016 – 7.00 AM Sydney (EST) Australia
About Lee-Fay’s session: Most of us have things we like and dislike about family celebrations and holidays. Spending time with family, new experiences and a break from routine, and an indulgent lifestyle can be both pleasurable and difficult. There is no research on celebrations and holidays for people with dementia, so this session draws on general research on holidays with reflection on how this may apply to living with dementia. Holidays are associated with increased all-cause mortality.
The reasons for this are unclear and may include increased alcohol consumption, increased travel and physical recreation during holiday periods, and increased stress. Emergency hospital visits during holidays are associated with increased risk of death, possibly because of lower levels of or less expert staff. Women have reported that holidays do not always give them more ‘free’ time but may require an intensification of necessary activities. However holidays have also been described as times of social bonding and reaffirmation of social-identity. There will be an opportunity for participants to think about strategies that they may use to manage the difficult aspects of upcoming celebrations and maximize positive effects.