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
(see the panel on UN WebTV: of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date)
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.
Peter Mittler stated that disability organizations are dissatisfied with the implementation of the Convention, and with the lack of accountability of countries for CRPD. (Slide the Time Index to 1:02 of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date.) Peter wants to ensure that people with disabilities are co-partners on governmental committees for implementation, as the Convention requires, and he wants disaggregated statistics about children with disabilities in schools.
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 Mittler criticized the CRPD regarding accountability, to hold member states responsible for including a person with disabilities (Go to Time Index 59:45 at http://webtv.un.org/search/strengthening-accountability-social-forum-2016/5155220168001?term=social%20forum&languages=&sort=date.) Peter says that member states are not complying with implementation of CRPD Article 4, and that pressure should be put on them by the Office of the United Nations High Commissioner for Human Rights (OHCHR) as a direct outcome of the Social Forum.
Wednesday, October 5, 2016
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
Interactive Dialogue – Mary suggested the creation of a CRPD resource database: (Slide the Time Index to 35:35 at http://webtv.un.org/search/implementation-of-agenda-2030-under-the-crpd-contd-social-forum-2016/5157102747001?term=social%20forum.) Mary said, “In the three days of this forum, I’ve heard people speak of some wonderful programs they have created or observed in their countries or communities…”
“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.
Mary Radnofsky PhD