Day 1 of PANUSP conference (1/2)

Today, Thursday 13 October 2011, was the first day of the PANUSP seminar; Strengthening the Pan African Network of Users and Survivors of Psychiatry for the Realization of the Rights of Persons with Psychosocial Disabilities on the African Continent.

The conference is being held in the conference room at the Holiday Inn Express hotel where all participants are staying. Yesterday was arrival-day, and today the PANUSP work conference has started.

At 9.00 we were welcomed by Moosa Salie from Ubuntu Centre (user organisation in Cape Town, which organized the PANUSP conference).
PANUSP started organizing themselves in 2005, as a pan African network of users and survivors of psychiatry, sharing experiences and expertise. Now, several years later PANUSP is growing and developing themselves further into an entity with a level of excellence. The next 2 weeks, Cape Town will be the stage of several important conferences regarding mental health and human rights, such as
- the World Mental Health Congress next week, where professional caregivers will share their views, ( www.wmhc2011.com )
- and the conference of the Network of African National Human Rights Institutions (NANHRI) , of which the theme is the UN Convention on the Rights of Persons with Disabilities. (http://nanhri.sahrc.org.za/programme.asp )
But the users need to have a strong voice too, and organizing a PANUSP network event for strengthening user/survivor organizations was a logical step. So the next 2 weeks Cape Town will be a microcosm for international human rights for users and survivors of psychiatry.
The goals of the PANUSP conference are: serious empowerment of the user movement throughout Africa, by education and increase of knowledge on Human Rights advocacy. The next 3 days an educative training is offered to strengthen the user/survivor organizations throughout Africa.

Then Gabor Gombos, member of the CRPD Committee, gave an introduction.
Capacity building is a tool, not a goal. It’s very important to learn to use the capacities that are present. Users and survivors are experts and a true resource of wisdom. At the conference we will not be teaching eachother, but rather sharing information, and we hope to become wiser and be able to bring real changes.
PANUSP is the second regional user network that is formed around the globe. The European Network (ENUSP) was the first regional network and that started in the late ‘80’s. First ENUSP started in the North West of Europe and then a bit later East Europe joined. That made the European movement become more divers. They were broader and richer on information, and capable to bring real changes to policies.
So this PANUSP conference is a very important meeting for building capacity in order to bring change in the situation of users/survivors of psychiatry in the African continent. Changing policies is a political issue, and abstract norms of caregivers and professionals need to be translated into life experiences to create understanding and awareness of what this really means to the life of a user. Therefore it is very important that users organize themselves in networks and organizations, so they can have a voice that has a political impact.
This PANUSP conference is meant to have a concrete outcome, which is that user/survivor organizations will be more capable of bringing change. The future is more important then the past.

Then at 9.30 Heléne Combrinck, the programme facilitator, gave an introduction on the CRPD and human rights of persons with psychosocial disabilities. Heléne Combrinck is a lawyer and works on a university. She will guide us through the training of this conference.
By learning the contents of the UN Convention on the Rights of Persons with Disabilities (CRPD), by training to use that information (capacity building), and reflecting on the areas of concern which were identified by the participants prior to the conference, there will be an outcome of strategic priorities at the end of the conference.

The objectives on organizational level are about finding challenges in the African continent, prioritizing human rights concerns, building capacity in the existing movement, and using the articles of the CRPD to protect and to promote rights for persons with psychosocial disabilities. Also exchanging information on best practices for social inclusion and participation, consolidating the network by mapping strategy and becoming effective as a platform are main goals.
But everyone also has personal objectives, and Heléne Combrinck asked us to consider our personal expectations, to be able to evaluate that afterwards. A few random personal objectives were: ensure that PANUSP puts a foot down to end human rights violations on persons with psychosocial disabilities, and PANUSP having a credible voice representing users/survivors. Or defining words for ourselves in order to give meaning to psychiatry. Or having a clear overview of issues and options and strengthening ourselves.

The next step was to reflect on the language we use, and decide whether the terminology is acceptable for us, because many terms are stigmatizing, like the word retarded. We all agreed that language does not really matter, just as long as there are no words imposed on us that we don’t like. The definition of our targeted group and the borders of our topics are sometimes quite vague, but we don’t have to be precise. We all understand what we mean. We are a room full of experts, all involved in the CRPD, some in drafting it, others in implementing it. So now we will share and learn about the realities of users living in Africa.
And then we were asked to describe: What are Human Rights? And various answers came in return: It’s agreed laws that everyone is entitled to, an agreed set of rules about dignity and peace. It’s safeguards to prevent violations. It’s freedoms, chances, or what we need as a person to live on this planet. It’s not to be treated like an animal. It’s inalienable rights that everyone is born with, inherent to nature. It’s reflecting welfare of mankind. It’s the opportunities and values of every human being. It’s the answer to human rights violations. It’s a set of principles – not superficial- but about real human needs, like dignity.
The next question was: What do I do with Human Rights? And again everyone was brainstorming and raising up aspects: It is good to know that we have rights and actual rules about human dignity, prohibiting to treat us like an animal (and also animals have rights). Human rights are an authority, to protect from violations and to promote awareness, so you can demand your rights. But in another way, human rights not have to be demanded, because these rights are inherent to every human being. But when someone is violated, then it’s time to make a fuzz, which is a demand. It’s important to exercise rights, not just demand. We have a responsibility to speak out.
Then Heléne Combrinck gave us notion of the historical development of human rights. It was after WorldWar 2 as a response to the violations that a group of people sat down and said: never again. Then a process of writing down the human rights started, which lead to the Universal Declaration on Human Rights, which is still the basis of all human rights laws and all human rights instruments.
So where do we find Human Rights laws? And answers came up again: At the UN of course, and in the constitutions, court decisions, and laws with rights. But also in customery international laws, like the right not to be tortured is widely accepted, and it became a custom, which means there is no more need to say that it’s illegal (even countries that didn’t ratify the Convention Against Torture (CAT) are aware that torture isn’t accepted and feel somehow obliged not to torture). But sadly torture still exists in several forms, like mental torture (not only physical).

At 10.30 Gabor Gombos, member of the CRPD Committee told us some more details on the drafting of the CRPD and key concepts. The development of international Human Rights instruments were a response to WW2 to make sure the violations won’t be repeated. But we know it repeated in practice. For example users and survivors are violated (globally) under the name of treatment.
It is interesting to take a closer look at why the decision was made that the CRPD was needed, and who wanted this. The users/survivors experiences were clearly expressing that they cannot live equally like others in the community, and the same goes for persons with other disabilities. But the other human right conventions include people with disabilities too, in the sense that they were not excluded from those conventions, at least not intentional or on purpose. Then after looking at the situation of persons with disabilities, there were clearly barriers in practicing inclusion, participation and their human rights. So then it became recognized that the existing treaties did not give enough protection to persons with disabilities. Then advocacy was started to promote human rights for persons with disabilities, and it took about 2 decades to succeed. Then countries suggested a proposal to establish a new human rights treaty for persons with disabilities at the UN-Conference of the State Parties (which is a UN meeting with all countries represented), which answered that there already were several human rights instruments, and the fault was probably in implementing those instruments, so they blocked the making of a new convention.
Then in 2001 Mexico came up with a smarter proposal and they did not ask for a new convention. Instead they wanted a committee to consider the option of a new convention, and the Conference of the State Parties agreed on that. Then the Ad Hoc committee had a meeting in New York in 2002 to consider the option of a convention, but only a few states responded and sent the requested web reports. At the second session the Secretary General of the UN encouraged all people and all organizations to submit ideas on how and what a new convention should be like. And amongst others the user/survivor movement seized this chance and wrote text proposals. An Expert Working Group had to review every submission, which comprised 14 persons of which 12 were persons with disabilities, including psychosocial. This is very revolutionary, because this never happened before. Usually the drafts for conventions are made by academics and diplomats who negotiate about the legal framework of human rights. But there seemed not to be much expertise at many governments. Only a few countries submitted proposals, and mainly these were short. But persons with disabilities wrote large extended and detailed proposals, which made it clear that they are the experts themselves, and as a consequence it were the persons with disabilities themselves who provided a basis text to guide the discussion. This is very revolutionary, because now the agenda was set by the persons with disabilities themselves (by the working group), and they were no longer in the role of responsive comments. This is a massive paradigm shift.
Persons with disabilities organized themselves to participate in this process. The states were asked to support a voluntary fund for travel costs of persons with disabilities, and persons with disabilities were more present at the third session. It then took about 5 years to negotiate about the contents of the convention, and then the final outcome was close to the original submission, because the persons with disabilities had a very strong expectation of what and how a convention should address. And while states wanted to keep a narrow definition of disability implying that only a small group will be protected and a lot left out, the persons with disabilities chose a social model instead and stated that disability does not reside in the person and is not to be seen as “failing or damaged”, but disability is a barrier in interaction from full enjoyment of human rights. The social model approach also enables the civil society to be united again and focus on equal rights.
It is important to recognise the motivation for drafting the CRPD. It were the people with disabilities who triggered this convention by speaking out.

After the tea break, at 11.00, Heléne Combrinck came again to let us discuss in smaller working groups on selected articles of the CRPD and their relevance to Africa. All participants were asked to first read and study the articles to come to a good understanding. And then we should choose one article which is most relevant or significant in our advocacy work everyday.
And then we were asked to link the articles to thematic areas of concern, which were already identified by the participants by a questionnaire before the conference started.
The third step was to give a summary to the plenary group.


The summaries of the working groups will be added to this report asap)
And also the afternoon part (2 speakers and a group work session) will be reported asap.

It’s quarter to 3 at night now. I should get some sleep.