NUI Galway Summer School Int. Disability Law
Door: Jolijn Santegoeds
24 Juni 2016 | Ierland, Galway
It is quite exhausting to travel so much. A couple of days ago, I walked on the Brooklyn Bridge and enjoyed the atmosphere of New York, feeling like a rockstar with all the positive attention given to me in New York. Then I had a long travel home in the weekend, and I was totally exhausted after such an intense week. So I mainly slept a lot when I returned home. And then I quickly did my laundry, which luckily dried in time to be packed in my suitcase again.
At Wednesday 22 June 2016, I left home just before 9 AM and went to Eindhoven Airport, nicely close by. My flight to Dublin was delayed with an hour, but no problem for me. From Dublin to Galway I took a 3-hour bus-ride, and I walked to the Corrib Village (NUI Galway Campus) where I arrived around 6 PM. I checked in to my apartment, and iIn the beginning I thought it would be a lonely night, but when I stepped outside I met some people that I knew from other events, and they invited me to join them to go to the centre of Galway for some social time. So I did, and we had a great evening, with fish and chips, and good conversations, and enjoying the happy Irish folks who were celebrating the victory of the football match (European Championship games). It was a great evening.
The next day, Thursday 23 June 2016, was the day of my speech at the NUI Galway University – International Disability Law Summer School 2016. Unfortunately I overslept, and woke up at 9 AM, so I really had to hurry, skipping breakfast, only grabbing a quick coffee on my way in. The programme had already started when I arrived in the auditorium of the ILAS building.
Prof. Amita Dhanda was already speaking about “The intentions of the Framers: What we meant by the right to liberty during the treaty negotiations.
Much information , including videos, of the International Disability Law Summer School 2016 will be available online soon at http://www.nuigalway.ie/cdlp/
After Amita Dhanda's presentation, it was my turn. I spoke about Experience based advocacy on mental health law reform in the Netherlands. I shared how I became an activist: I told about my personal horrible experiences and anger because it is still happening, which led me to become an activist advocating against forced psychiatric treatments. I told about several scandals, which were followed by national projects to reduce coercion and especially solitary confinement, and the development of High/Intensive Care in Psychiatry (HIC, http://www.hic-psy.nl ). And I told about the law reform process of BOPZ into WVGGZ, and how I was consulted, and that it was a bad proposal, and that I developed an alternative, with a redefined goal and a practical method called Eindhoven Model, which is based on using Family Group Conferencing (http://www.eigen-kracht.nl ) to prevent and overcome crisis-situations in the field of mental health. (if you want to read more about this model: http://punkertje.waarbenjij.nu/reisverslag/4567654/presentation-text-on-eindhoven-model-cosp )
The Dutch NHRI is weak, and the government has only ratified the UN CRPD last week, and politically the climate for persons with psychosocial disabilities in the Netherlands is still bad. But bottom up change is possible. Progressive nurses, together with users/survivors, and others, including the Dutch Museum of the Mind (Dolhuys, www.hetdolhuys.nl ) have launched a manifest today to ban solitary confinement from mental health care by 1 January 2020, It has been signed by 14 Dutch mental health institutions (all connected to HIC development), so that should bring more change, even while the laws are going backwards. And Dutch politicians say “the law follows the practice”, so there is still hope. (but I don’t agree to their argument that the laws should follow the practice- abuse just needs to be prohibited, and the government should use the steering tools it has).
A bit extra information here (not part of my speech) :
The Manifest is officially called: Dolhuys (“madhouse”) Manifest: Dutch Mental Health Care Seclusion Free!
Translation: We conclude that, despite all dedicated interventions, seclusion is still in use.
Therefore we, the signatories, declare to take care of making seclusion cells belong to the past, by latest at 1 January 2020, for ever, to be placed in the collection of the Dolhuys, Museum of the Mind!
Wow!…. And now my reflection; The manifest against solitary confinement in mental health care is a wonderful step forwards (although I know that “the State obligation for immediate realization of release” is not the same…). Still it is recognition for my cause, and recognition for the need to end the suffering, recognition that solitary confinement has nothing to do with mental health care. And January 2020 is the end date, it should end right away. It can be applied immediately (like a transition period). Anyway, it should stop today, and otherwise in 3,5 year the latest… in 14 institutions out of over 50 big ones… - but what will they do with forced medication? Clearly we have to focus on that now. And also monitor the other institutions that are not part of the HIC-development (they should not become the substitute). All institutions should follow and sign the Manifest of course. I have also been involved in this manifest in the background (on my sleeping days). Once I found out about it, I was so happy with this “present” of seeing awareness grow, it’s like a victory. But I have some reserves, since we are not there yet. (and I needed my mind also to focus on the Summer School). It was good (and intense), blasting so to say, and special to also see the name of the institution that treated me so bad, on the list of signatories, actually the first on top…. It was a deep “wow” and “yes!”. So this was a very special day for me, and it was great to mention the Manifest For Seclusion-Free Mental health Care in my speech.
After my contribution, Facundo Chavez Penillas spoke about liberty from the perspective of the UN Office of the High Commissioner for Human Rights (UN OHCHR) and after the coffee break, there was an interactive session for questions and answers, led by Rosemary Kayess, with Amita Dhanda, Facundo Chavez Penillas and me, and we were joined by Alberto Vasquez and Elizabeth Kamundia. It was very interesting, but I am not going to summarize it now.
Overall during the day, I felt a little bit distracted, and I couldn’t focus as much as I had wanted to. Of course I was still tired, but apart from that, now, afterwards, I am starting to understand why I found it so hard to focus at this occasion – it was the many feelings brought up by the Manifest, which I tried to suppress and ignore in an attempt to focus on the Summer School… but it was too big to really be able to ignore it. – but anyway, I was feeling good, and learned a lot from the presentations and discussions. But at times like this it is hard to summarize and reproduce detailed high level information.
The information of the Summer School itself, including videos, will be made available on the website of the NUI Galway Centre for Disability Law and Policy: http://www.nuigalway.ie/cdlp/
In the afternoon after the lunch, there was a session on the experiences of several persons who had been involved in the drafting of the UN CRPD 10 years ago, with Rosemary Kayess, prof. Amita Dhanda, Osamu Nagese, prof. Gabor Gombos and prof. Gerard Quinn, also with time for questions.
At the end of the day, a video was shown: the Great Fight for Disability Rights, which is about the persons with disabilities who pushed for the Americans with Disabilities Act (ADA) . You can see the trailer on Youtube here: https://www.youtube.com/watch?v=LG2KryP89Eo
Another part of the video is: Lives Worth Living. Trailer: https://www.youtube.com/watch?v=RlXm9NJDacM
It was very impressive.
Afterwards, many participants went out to have another nice evening in Galway’s city centre. I also went along, and I had some Fantas and we shared some fries. I really had a great evening and I made some new nice friends coming from all places of the world :) I love the Summer School, even though I participated only 1 day, it was really great.
Today at 6 AM I started my journey back to Eindhoven.
It was actually quite overwhelming altogether. The release of the Manifest coinciding with my speech, right after returning from New York, and still lacking sleep… (but that is also a bit my own fault, for ignoring the little voice in my head that said: be smart, go to sleep… but I found working and socializing more important, and I still do ;)
So now, 6 PM, I consider my work done, and it’s time for socializing, and digesting the many new and beautiful experiences, celebrating the manifest, and enjoying my home.
The next really big thing will be 12 July, when I will have a Court hearing concerning the decision of the Dutch Public Prosecutor not to start an investigation or prosecution concerning my personal case. I am considering various scenarios now. (of you want to read more about my personal case: https://tekeertegendeisoleer.wordpress.com/2014/12/10/persoonlijke-verklaring-16-years-old-depressed-and-tortured-in-psychiatry/ )
Anyway, I will first take some time to celebrate the achievement of the Manifest. It is a victory!
And it is weekend!!!!!!!
And finally time to relax after my tour from Brussels to New York and then Galway, and now final destination: Eindhoven!!
Cheers to all :)
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