Again a very intense day at the summerschool

Today was very intense. Like 4 seasons in one day. But it was also a great day with a very nice evening, so it’s a happy end :)

This morning we started with a little bit of classical music :) before Anna Lawson started her lecture on the Right to education (art 24).
The CRPD mentions that States Parties shall ensure an inclusive education system at all levels and lifelong learning. The Millennium Development Goals mention education for all, which means free primary education and aiming for secondary education for all as well. Inclusive education means non-segregated.
Article 24.3.c says “Ensuring that the education of persons, and in particular children, who are blind, deaf or deafblind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development”. This is a kind of compromising article, because there were concerns about adequate support and adequate standards for deaf, blind and deafblind persons. Skills like sign language and Braille needs to be taught to be able to communicate.
Article 24.1.a mentions the purpose: “The full development of human potential …” and 24.1.c. “Enabling persons with disabilities to participate effectively in a free society”.
Article 24.2 says how this should be achieved: (c. ) by providing reasonable accommodation, and (e.) “Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion”.
Reasonable accommodation is to remove disadvantages (obligated by non-discrimination), and effective individualized support is to maximize skills (progressive realization).
There is a difference in Inclusive education, Segregated education and Integrated education. Segregated education means that persons with disabilities go to special schools. Integrated education means that persons with disabilities go to a normal school, but are for example in separate classes, or just ‘dumped’ in a mainstream school. Inclusive education means that reasonable accommodation is really provided at school, and persons with disabilities are no longer segregated.
In special schools the standards are often lower, but inclusion means the same standard of education with the same exams, which should be dealt with by the Ministry of Education and not the Ministry of Health. Inclusive education has a positive effect on (reducing) stigma and isolation, which is also articulated under Awareness-raising in art. 8.1.c. “To promote awareness of the capabilities and contributions of persons with disabilities”. This leads to less stigma, more confidence and interaction, more skills for others, higher expectations and standards (self and others), non-discrimination and learning to respect differences (understanding and feeling comfortable with persons with disabilities as friends, parents or sibblings), and it is said to be cheaper (70% of budget).
Then we watched a youtube video about an inclusive university “living the dream” (http://www.youtube.com/watch?v=YD5-oXszf30 )
And then we watched another video, which is about integrated education and a testimony of abuse. http://www.youtube.com/watch?v=rxVJMY7ZeOY

UNESCO found in 2006 that 77 million children were not at school, of which 25 million had disabilities. In developing countries about 1-5 % of children with disabilities attend school.
Barriers towards inclusive education are: the schools reputations , lack of awareness, training of teachers, society (fear of the unknown) and parents and family, who fear abuse. It takes generations to end prejudice.

There are some cases of litigation on the right to education.(MDAC vs Bulgaria 2007 and Autism Europe vs France)

Then Peter Bartlett gave a lecture about Legal challenges to detention and treatment. We were asked to name things that would be useful for litigation on detention and treatment. We came up with a list of things: Such as: Should a guardian be able to consent to treatment? should a guardian have detention power? Is a cell treatment? (Milieutherapy?) Criminal detention? 48-hour trial rule? Different warrants? How do you proof dangerousness? Least restrictive alternative? Conditions? Restraints? Right to medical treatment? Regular review? Procedural time-limits? Appeal? Misdiagnosis? Independent second opinion? voluntary/involuntary ‘threat’? Awareness and information on rights? Preventive detention? Assessment of damages? Consent to treatment?

In some countries courts cases on admission procedures only take about 15 seconds, and there is no real hearing. Judges often don’t perceive that this procedure is actually about the rule of law and justice in a nation. There is no tradition of carefully weighing the aspects. The quality of courts varies, but is generally sad. This creates tension on litigation.
There is the bazooka-approach (win big or loose big) or the eating edges approach (small steps solely). Small steps only work if countries follow the law, and not ignore judgements. Also you have to look at the bigger picture, such as when you advocate for smaller homes or institutional upgrades, and then as a next step ask for abolition, this may just not be smart.

In some countries you need to go to a constitutional court to change the law.
The European Court of Human Rights (ECHR) isn’t comfortable with the substance of mental health detention, and finds it hard to criticize medical professionals. The ECHR is more comfortable with process issues and procedural cases. Procedures are safeguards who are supposed to protect against abuse and ill-treatment. Taking legislation seriously would already be a big step. After that maybe more substantive matters may be addressed. International case-law can serve as a guidance. (a judge in Ireland decided that “a substantial likelihood for dangerousness” needs concrete evidence.) This may help courts in making decisions. Stanev’s case shows that you have to select care based on needs, which implies a duty to have alternatives.

At the end of his lecture Peter Bartlett made a remark about that some will argue that ECT is barbaric, but that is hard as a procedural case. Some will say it was good, and then this treatment must be available. He said “I don’t know what is worse: ECT, which fries the brain, or medicines that destroy the nerve system”.
I was totally blown off my feet by this remark, and I was really upset. During lunchtime I was now and then fighting my tears, because it was such a lot to take in. I had to sort out my mind. I was supposed to talk about my personal case after lunch, but I had lost faith in litigating my case, because “if there were persons who like ECT, cells, forced drugging and maybe even caged beds, they might not abolish them” – according to Peter Bartlett’s theory. That upset me. How could these horrible practices be unrecognized?
I had to sit down and sort it out. And I realized that “these people just don’t know any better”, that’s why they accept it and agree with it. They think this is the best option. So that means that public awareness raising and promoting alternatives would be my only way to realize change, because the laws won’t save us (again: same conclusion, different day..). For a moment I asked myself what I was doing at this course. Why did I go, when I already knew how insensitive laws are.. It’s about laws, not about justice.. It was tough to get my head around this. Yesterday I had been so full of hope when I found out that the Netherlands had ratified the Rights of the Child in February 1995, which meant I could claim those rights, because I was institutionalized at the end of 1994. Now I lost that positive vibe again, and I felt hurt and sad, like all hope was lost. It was heavy.

After the lunch break we had “Litigation Surgery nr. 2”. Those of us who hadn’t presented our case yet, were to do so in this session. Me too, but I had just been upset by the lecture of Peter Bartlett. I listened to the other cases, and then it was my turn.

I told about my history of suicide attempts at age 16, and how that led to long term seclusion (almost 2 years), body cavity search, bed strapping, forced drugging and eventually the prohibition of music, reading and conversations. I told about how they neglected my broken Achilles tendon, which led to the closing of that ward, and how patients and nurses were relocated at other wards. I was transmitted to a psychiatric intensive care ward, with more staff and a more humane approach. I started to get a life, and appealed my forced stay by sending a letter to the judge, saying that I wanted to live. I then was free to leave, so I left, without support of the institution, which insisted that I should finish my treatment. I went away, and became homeless for 2,5 years. I had always been wanting to bring my horrors to court, and in 2002 I found a lawyer. Unfortunately he got a brain tumour, so he quit his practice. Since then I haven’t been able to find a new one (they have no time, or just don’t respond). I have sent everything to Juan Mendez, the Special Rapporteur on Torture, hoping he is willing to address these violations. And I’m still upset for not having access to justice.
I then told, quite emotionally, that I had just lost my faith again in litigation. Within Dutch law “danger to self” is a criteria, and that was the case, so the law isn’t violated. They say “I had my legal rights”. Also at the European Convention there is this phrase about “unsound mind”, so I doubt if I have any chance there. And also the lecture of Peter Bartlett had demotivated me, because “if there were persons who like cells, they might not abolish them”. But these persons just don’t know that there are other options, so then I need to raise awareness and promote alternatives. To me, litigation seemed really useless for my case. I was really quite emotional about this, I was trembling, and holding my tears.
The entire class was shocked by my story, and they were very supportive. They asked the MDAC-lecturers if they could help me with this case. And some had even offered to help me personally. That really warmed me, and it was a very important moment for me, to see that these legal experts were sensitive (so unlike many of my experiences). It was very special. I was still overwhelmed by emotions, so I was glad to have the noon break and smoke a cigarette. I really needed to calm down internally to be able to take new information in at the next session. And after the break I was back on my feet.

The next session was done by Oliver Lewis, about Selecting litigation among other advocacy tools. First we identified a list of alternatives or complementary actions to litigation that we would like to discuss, such as mediation, campaigning, advocacy (public support), use of monitoring reports, counter-activity and risks, authorities, pressuring governments to change, civil society cooperation, what if litigation fails, public awareness, promoting alternatives, how to introduce to the system, prevention of human rights-violations, media, coalition management, peer advocacy.
Then we discussed some various forms of advocacy: such as peer advocacy (self-advocacy), lay advocacy and professional advocacy, and various types of advocacy, such as legal advice and assistance, legal representation, clinical legal education, campaigning and lobbying, parliamentary advocacy, public interest litigation and strategic litigation.

Oliver told us about the power-interest-policy-matrix, which can be used to gain strategic insight in the goals and movements of advocacy. The matrix puts power and interest on a 4-box-square scale, divided in high and low, and then you can mark the place where persons or organizations currently are (high/low power, and/or high/low influence). This generates an overview and more insights in ways and strategies, such as lobbying, or the use of media (increasing interest, increasing power). It can be very useful to know more precisely which movement to achieve. The next step is then to think about How you could achieve this, and which intermediairies can be useful, which values are motivating people (In terms of persons this is often sociological, and in terms of organizations this is often more political).

The use of international advocacy, such as shadow reports or international complaint-mechanisms should only be done after first trying the national mechanisms. Referring to international treaties can be useful or totally useless, depending on the country and context. (This will be addressed later on more specifically). MDAC’s goal is to advance international law by generating influencive jurisprudence in the field of mental health laws and practices.

Then we talked a little bit about the CRPD Committee, who are only able to meet 2 times a year for a week, and are still relatively new and still finding out their optimal ways. There have been only a few country-reports yet (Tunesia, Spain and Peru), and there is a huge need for guidance on the interpretation of the UN CRPD towards governments.
Other treaties, such as CAT (Convention against Torture) also have an option to submit shadow-reports. An example of that is the written submission (shadow-report) submitted by ENUSP, MDAC and others on caged beds in Czech Republic. I was one of the representatives on behalf of ENUSP, who took part in the closed CAT-session on Czech Republic (May 11 2012). In the Concluding Observations, the CAT committee took a stand against these caged beds and net beds, and then added that other restraints had to be regulated. ENUSP and MDAC then released a response to this “unedited” version, also subtly asking to replace some words. In the final version (http://www2.ohchr.org/english/bodies/cat/cats48.htm ) the committee makes recommendations on de-institutionalization, underlining free and informed consent, and it mentions (21.c) “Provide a clear legal basis for the use of all forms of restraint measures in institutional settings. It urges the prohibition of the use of restraint measures such as cage-beds and net-beds.”
In one year the CAT Committee will follow-up on this, to see if progress in Czech Republic is made. Of course MDAC and ENUSP are still closely monitoring the situation, and it’s positive that the CAT Committee pays attention to these horrors.
For advocacy organizations it is useful to study the recommendations of international bodies (CRPD, CAT and so on) and break the statements down into concrete consistent parts, which can be measured or checked, in order to assess the implementation. NGO’s can then ask specific questions in the sessions and pin down the issue in a coherent way.
The inclusion of users and Disabled Persons’ Organizations (DPO’s) in monitoring bodies is obliged by the CRPD (art 4.3 and 33.3)

When the session was over we were asked to go to the Pizza night at the MDAC office. It was really nice to be there. All MDAC staff members gave a very short 5 minute lecture on their activities, and then it was pizza time. There is a very nice atmosphere in the MDAC office. I really enjoyed it.
Also I got a lot of compliments on my presentation of today, and many fellow-students said they really learned a lot from me, and they were very impressed. They would even recommend me as a teacher for next year. That would be cool :)

In the evening I was again at the kitchen table and Madhurima, Abida and Karen had a great idea for my case. I should ask MDAC to write down my narrative, and ask them to give me their expert opinion on the matter. I can then take that to a lawyer in the Netherlands (that would make it easier I guess). I think that is a brilliant idea. Another idea was to file criminal cases against the persons who did it to me (but I don’t really know how that works) There are 3 or 4 persons who did very bad and who I do hold accountable in a way. But I’d rather stay on the positive side: I want my rights, and I just don’t like blaming people. I just want my rights, I want to hear that it was wrong what they did, and that it can not be practiced like that, to protect other people’s rights. That is my mission.

Anyway, it had been another long and intense day, and again it is in the middle of the night (2.30). I hope to have sweet dreams now.