More experiences at COSP NY

I’m home again. I went from New York’s heatwave (40 degrees) to Europe’s heatwave (in the 30’s). It’s a little less sweaty here, but I really start to miss the air-conditioning, as it is very hot in my home-office now. And I’m still tired from this very intensive trip, and maybe a little jetlagged. So I’m taking it slow.
I didn’t write my blogs on the last 2 days of the conference yet, because I felt like I shouldn’t spend all my time indoors, but also enjoy New York city. So here’s what happened at the rest of my trip:

At 18 July 2013, I went to the UN building again for the Conference of State Parties (on the CRPD-treaty). At 10 AM he first session started about Mental Disabilities: a Mental Health perspective, by the International Psychoanalytical Association.

The first speaker was John T. Walkup, M.D. He worked in child and adolescent mental health care.
In fact, his speech was awful. He spoke about mental illnesses. According to him, some mental illnesses were brain-diseases (like ADHD, Autism, Schizophrenia, Mania) and others were preventable mental disorders, such as: extreme human characteristics (such as temperament, intelligence), maladaptive behaviour (anorexia, substance abuse, antisocial) and live-experiences with mal-adaptive narratives (loss, trauma).
I was shocked by his outdated analysis. He really labelled many mental illnesses as brain-diseases, like it has no social component at the origin !! And “maladaptive narratives”, which need to be straightened. Like there is a norm to adapt to, set by who?? And who decides whether something is maladaptive?? I was getting upset, and I really considered walking out of that room, but I stayed, to see where it was going.
The man spoke about how preventable mental disorders can lead to substance abuse, obesity, teen pregnancy, violence and deaths by suicide/homicide and so on, which has a high impact on the community. According to Mr. Walkup these ‘high impact-situations’ could be prevented by early childhood screening and adolescent screening in every family home, and by teaching parenting skills to the parents (especially with the first born). And training local community workers as parapsychologists who can give support to their communities.
He was obviously promoting psychiatric interventions for every family. (which sounds to me like assuming that nobody knows how to live together, and psychiatrists have to teach the world how to do it, by going into every house,.. ??). I totally disagree with that!! This is intrusive and biased, which is old-style psychiatry.

I really disliked what this man said, and I was searching for words to address it politely and constructively, but I couldn’t find the right words, like many of us. I was struck to find this kind of speech at the UN.
Then Jeremiah Bach (from Mad Pride Toronto) raised a very smart question. He asked: Can you please explain how this relates to the UN Convention of the Rights of Persons with Disabilities (the CRPD)? The man answered that he wasn’t really aware on the substance of the UN CRPD. This was probably the worst thing a presenter can say inside a UN conference which has the UN CRPD as overall theme, and it gave a sense of relief in the room. He was no expert and he was de-masked. Maybe needless to summarize that his presentation totally didn’t fit in the atmosphere of the room.


I guess that everybody was suspicious on what the second presenter had to say.
The second speaker, Mr. Andrew Solomon,PhD, started by quoting that homosexuality was an incurable disease, before saying that this quote comes from the 1960’s and by now homosexuality is recognized as an identity. This is a concrete paradigm shift.
By now the same shift seems to be happening with the autism spectrum, which is currently more and more perceived as an identity (neurodiversity), rather than a disorder.
But on the other hand, a shift in the other direction, from identity to disorder is also possible. For example: they are finding a “cure” for Down’s Syndrome, and when it’s curable, it can shift from an identity into a disorder. He made a parallel to the deaf community, where there is well-known debate around the issue of curing deafness. There can be a thin line between whether something is perceived as an identity or a so-called illness or disorder.
He talked about how parents often struggle when they have a child that is ‘different’ than they are, and how parents try to balance between unconditional love of their imperfect children, and trying to save them from harm by seeking ‘adjustments’, mainly because of attitudes in the community.
Also there are many so-called undesirable personal features which are labelled both as an identity AND as an illness which can sometimes be ‘adjusted’ (such as dwarfism). And several ways to achieve this ‘adjustment’ were valid in other times, but are now perceived as barbaric and outdated. Maybe in the future psychiatry will be considered as barbaric too.
Sometimes treatments don’t exists, and for some features that used to be called illnesses, raising awareness on that has helped to create acceptance for the identity (for example the gay-community is creating acceptance on homosexuality).
However, generally, when treatments do exist, it is often preferred to get treatment. Adjustment generally makes life easier. There is a pressure to conform. Also testing and screening creates certain attitudes.

I must say he was a very good speaker, and it was very interesting to hear this speech on how perceptions on whether something is a disorder or an identity vary over time and place, and how the role of treatment can change. I think we all experienced relief to hear this relevant contribution after the shocking contribution of the first speaker. This was really clearing things up.


The third presenter was Ms. Adrienne Harris, PhD. She spoke about trauma, and the impact on human lives and communities. And how trauma can be passed on, through generations and communities, and also to support workers. She plead it was necessary to address this. Social pain takes the same neural pathways as physical pain, and causes physical reactions. Failing to recognize this, and neglecting traumas is even worse. Ms Harris said: trauma needs to be addressed and cared for, also at support workers.
I could relate to her general story on trauma, but I did get some second feelings when she stressed the support for support workers several times, which appeared as one of her main messages. She didn’t mention psychiatric traumas at all, and in that way I didn’t really know whether she was advocating for scaling up psychiatric services or not.


The session ended, and I left the room quickly. I didn’t feel like talking to any of the people there. I just wanted to have some time to digest my inner feelings and thoughts, because it had been an extreme session. What does their presentation mean? What will be their role and impact? How to deal with them?
But during the afternoon I kept on meeting people who were equally shocked by the first presenter, and that was very good to restore my trust. I heard a rumour that the first presenter had left the conference directly after his session. And also I still got a lot of compliments on my own presentation a day earlier. So that made me feel safer again, like I did belong there. That was good.

Then I didn’t feel very well. I was a starting to become dehydrated from the immense heat outside (40 degrees or so) and I felt very weak and shaky. So I sat in the UN cafeteria, having something to eat and to drink talking to some nice people, and I finished my report of 17 July and some emails. I just took some time to reload myself.

At 14.00 I had an appointment to be picked up by a taxi for a filmed interview by Open Society Foundations. It was funny to see that at this location Broadway was just a few steps away :) The interview went quite okay. I was feeling a bit better by then. It was in English. It’s for a documentary on disability rights activists and it will take some months before it is ready (maybe in October/ November). I’m curious to see the result.

I returned by taxi at the UN building around 15.30, and then at 16.00 I joined a side-event on The Right to decide: True empowerment and participation of people with intellectual disabilities, by Inclusion International.

It was about decision making, and how persons with intellectual disabilities generally amaze everyone with their capacities to actually make their own decisions. Persons with intellectual disabilities generally face low expectations and are perceived as “incapable” of understanding or making decisions about their own lives. Often they depend on family support, but these family members won’t be able to do this forever. For the sake of the future of persons with intellectual disabilities, it is important that they are empowered, supported and enabled to make their own decisions. Keys are providing information that is understandable, and training persons with intellectual disabilities in decision making skills. Ensuring that persons with intellectual disabilities can make their own decisions is also the best way to prevent abuse and manipulation.
Various practices were illustrated. All showing a surprising ability of persons with intellectual disabilities to stand up for themselves, and to make choices on life aspects that were not expected for them by the community: the right to vote, the right to marry, the right to found a family. (when a woman isn’t allowed to give birth based on her intellectual disability, a part of her identity is taken away from her – what is needed is support for her to fulfil her life goals, including support to have a family life, to give her the same chances as everyone else in this world).
Connie Laurin-Bowle from Inclusion International then surprised me, by saying that article 12 of the CRPD means that all guardianship systems need to be revised and formulated in a disability-neutral way, so that they apply to everyone on an equal basis, de-linked from disability. She said: The systems for substitute decision making might be still needed for a small group, but then have to be phrased disability-neutral. She then added that she was aware of the fact that the World Network of Users and Survivors of Psychiatry (WNUSP) did not agree on this position, and that she didn’t want to have an extended discussion on that (while looking at me directly). I did disagree, and I was very much surprised by this move of excluding me from teh discussion, which felt like I was already stigmatized, before I had even said a word… Most of these people I met for the first time.. I decided to still raise my hand.
I asked: “You mentioned yourself how attitudes are the biggest barrier, and not legislation. But if you only rephrase the guardianship- and substitute decision making procedures in a disability-neutral way, de-linked from disability; How will you ensure it is not the same group of persons with intellectual disability, that will be subjected to those regimes, based on other grounds, with other words, but it is likely to be the same group because of existing attitudes. I think your suggestion would just create a word-shuffle and no real solution”.
She didn’t go into that, and just thanked me for saying that. I then started to prepare an information package for her. I gave her a copy of my presentation on the Eindhoven Model – an alternative for forced psychiatry (based on family Group Conferencing), which can be a tool to support decision making, also for persons with intellectual disabilities. She had mentioned the word: interdependency, and that is exactly what it is about in the psychosocial domain as well. So directly after the session I went to her and gave her my presentation text, an information leaflet, and my card, and I said to her that I have a brother with Down Syndrome myself, and I suggested that she should take a look at the materials I gave her. The moment I mentioned my brother I saw a change in her attitude. She then also gave me her card, and we decided to have contact about this. I’m glad she didn’t exclude me any further. It wasn’t a particularly pleasant experience.

After this session I left the UN-building and took a boiling subway-ride back to Penn Station, with my hotel opposite to it, where I dropped off my bag. It was already past 19.00.

In the evening Moosa, Branka and I went to the Empire state building. I tried to go to their hotel first, but I hadn’t noticed the difference between East 43rd street, and West 43rd street, and only after a long walk I found that out. So then I went to the subway, but it appeared that the metro had stopped running. So I had to walk. It was still very warm outside. We decided to meet directly at the entrance of the Empire State building at 34th street. It is very nice to walk through New York city Midtown at nights. There are many lights and many people, shops are open, there’s a friendly atmosphere and so much to see, such as street artists and entertainment. I really liked walking there.
And then we found each other, and we went to the top of the Empire State building and enjoyed the great view, and a breeze of warm air (it was less hot than on the streetlevel). We had a very entertaining ‘high-level’ conversation there ;). After that we walked around a bit more, looking for an ice cream bar, but we didn’t find any. Then I was already very close to my hotel, so we split up, and I went to rest. The heat was surely taking its toll on my physical wellbeing, so I decided to blog later.
It had been quite an intense day again.