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).
If you want to see the whole list of general sessions that took place in the Palais des Nations, you can go to: http://www.ohchr.org/Documents/Issues/Poverty/2016SF/BackgroundNote.doc.
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 of CRPD 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.