Training Day 1: Shocking and inspiring experiences

Today, 12 March 2013, was the start of our training-programme in Moldova on monitoring human rights in institutions, based on Article 33 of the Convention on the Rights of Persons with Disabilities (which states that service users must be involved in the monitoring). The training is meant for persons with disabilities (service users) and monitoring mechanisms (NPM/Ombudsman).

The training “Rights into Action: working in partnership with people with disabilities” is about establishing a partnership in monitoring human rights in institutions together. This projects is co-organized by Mental Disability Advocacy Center (MDAC), the United Nations Development Programme (UNDP) Moldova and the Office of the High Commissioner on Human Rights (OHCHR).
The project is supported by the UK Government’s Foreign and Commonwealth Office and the United Nations Partnership to Promote the Rights of Persons with Disabilities (UNPRPD).

The training was supposed to start at 9 AM in the morning. I was a bit late, because this morning I had gotten the sad news that Christina, a friend of me had passed away (and psychiatry was certainly of influence on that). I felt sad, but I also felt the importance promoting the rights of persons with disabilities who are alive. So with a little delay I went to the training venue in Le Roi International Bussiness Center which is located very close to the hotel. It appeared that more people didn’t make it in time, so we started with a delay, so I was still in time for the introduction session, and I was glad I didn’t miss anything.

There were about 25-30 participants in the room, who all introduced their neighbour. It appeared that the majority were persons with disabilities (psychosocial, intellectual, sensory and physical disability). Some of them were currently living in an institution and were picked up by the UNDP to join this training. Luckily they were allowed to come today, because yesterday the UNDP had been at the institution all day, and the persons were not let out despite previous arrangements, because of mystified reasons such as “no written consent”. Today they arrived with some delay too, but at least they are here now, and they are now staying in a nice hotel, even closer to the venue than we are.

Oliver Lewis (MDAC) did the first session with an introduction on “what are human rights” and “what are monitoring mechanisms and its obligations”. Immediately quite shocking experiences were brought up by the participants on issues like violence, abuse, detention, discrimination, exclusion and segregation based on disability.
The monitoring mechanisms such as the NPM (National (torture-) Preventive Mechanism) and the NHRI (National Human Rights Institute: the Ombudsman office) should monitor the implementation of human rights. Moldova has ratified the UN Convention on the Rights of Persons with Disabilities (CRPD) which implies an obligation to monitor the rights of persons with disabilities (art 33). Article 33.3 mentions that civil society, in particular persons with disabilities and their representative organizations, shall be involved and participate fully in the monitoring process. This is because nobody knows better what it’s like to live with a disability, than persons with a disability themselves.

It is a new thing to include persons with disabilities in monitoring mechanisms, and in Moldova there are no user-led advocacy organizations (only some general NGO’s who are not really aware of what happens behind the closed doors of institutions), so it’s important to empower persons with disabilities, and to build bridges with the NPM and Ombudsman office, which is exactly the goal of our training “Rights into Action”.

After the lunch we had all afternoon with only persons with disabilities (no persons from NPM, NGO’s, Ombudsman or any other non-disabled person). First Kay Sheldon (UK) and I shared our personal experiences including our advocacy-work, and then we asked the participants to share their experiences with us in smaller groups. It was totally horrible what was brought up: persons with disabilities being excluded from every aspect of dignity and community life: from education to marriage and family-relations, to housing, to having money or to inherit property (it’s all taken away). We heard about physical punishments (beating up patients), torture, sexual abuse by staff - including killing the babies, which are said to be buried on the hospital compounds (which has been in the media). Forced treatments, numbing people with heavy (old) medications so they are knocked out. Quite random detention and institutionalization (persons are put “anywhere” for “any reason”, such as when someone pays for it, or just wants to get rid of someone). Full deprivation of legal capacity (which is the right to make your own choices), there is not even a choice for clothing, as this is provided by the institution. And there is a 100% absence of access to justice and courts (no option to file complaints). It was a heavy session for all of us, but we also felt warm and connected to each other. In my group, most participants had tears in their eyes after hearing these stories. These terrible, appalling experiences made us all aware of the need to empower users and to involve them in monitoring.

This became even more clear in the next session, which was about “doing in monitoring visit” in a more practical way. All 3 groups had identified the issues that are faced by persons with disabilities, and we selected 3 themes to focus on during our monitoring visit to a big psychiatric hospital in Chisinau on Thursday, because it will not be possible to cover all themes in a one day visit. The themes are: forced treatments, forced institutionalization and “daily life” including: living conditions, meaningful activities, relations and so on.
The participants immediately came up with all kind of practical experience-based knowledge such as: Will they drug everybody when they know we are coming? Can we visit ward 37, because it’s bad there… Can we talk to users without staff present? Some persons talk easier while having a cigarette in the smoking area. Should we build trust first so people feel safe to talk to us? I would call them brilliant geniuses. We didn’t need to say anything, except for some confirmation. Obviously THEY are the best experts on this, and they almost automatically addressed the main issues to take into account. It was amazing to see this process take off, and it created a pleasant atmosphere of empowerment.

Everybody was so dedicated and focussed that we didn’t even notice that time was flying, and we even went on longer than we had planned (to 17.45)
Afterwards some participants actually came to thank us for today’s training, and they were looking forward to the rest of it, including the visit. I sensed that they were enlighted, which I can relate to, because I have been empowered at some amazing conferences in the past as well. I know what it feels like to be recognized for the first time. It feels great, and I think that is what we achieved today.

So it was a very successful start of the training. The shocking stories touched our hearts, and it moved us together, unified to act against this. And the recognition of the horrible practices being human rights violations was surely empowering the participants. I’m grateful that I got the opportunity to be part of this positive movement. I also learned a lot about “how things work here”, and I’m amazed by the strength of the participants, who face so many barriers in life, and still managed to overcome these. It was amazing, and I hope the rest of the training will be equally inspiring.