5th Global Mental Health Summit, SA 2018
Door: Jolijn Santegoeds
05 Maart 2018 | Zuid-Afrika, Johannesburg
However, just before going there, I had a number of very harsh disappointments in my activist-life. At 23 January 2018 a new horrible law on forced psychiatric treatments was adopted unanimously in the Netherlands. This means my country acts in violation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD). It hurts to see that my actions haven’t resulted in change. I tried so hard to raise awareness on the counter-productivity of coercion in mental health care. And we had the UN CRPD on our side. Yet still the Netherlands didn’t arrange care instead of coercion, but just maintains the same old repressive paradigm... I had never thought that the Dutch politicians would go against human rights treaties, such as the UN CRPD. I was really shocked when the law reform happened. Even though I somewhat saw it coming. I had thought that the Netherlands would show innovative leadership.
When the bad law reform happened, I thought: I still have my court case going to the European Court of Human Rights, and I will make sure that the Dutch authorities get the message that the practice of forced psychiatric treatments is in violation of international human rights. Then, at 31 January 2018, to my utmost shock, I received a letter from the European Court on Human Rights, saying that they don’t even want to investigate my case… It is appalling. They apparently are not interested in the struggle of teenage girls who are dumped naked in an isolation cell under the disguise of “care”… They don’t consider this an issue where there could be a concern for human rights, hence no investigation. (and they didn’t even list my case in the public registry, so it is like I never made a complaint about Dutch mental health care…. As if it’s all fine, like I don’t exist, and I am systematically ignored….and my case is symbolic for many more people. We are all hurt now).
And now, my government probably thinks they can get away with anything… It’s really terrible for past, present and future generations to see the harm continuing. So many of us tried so hard to bring change. We even had a UN treaty on our side. Why aren’t we heard?? My country was said to be “fair and just”. I invested so many years, with so little outcome. I question everything right now. I was just genuinely trying to bring injustices to light, as a responsible citizen, but they ignored it. It seems that certain lives don’t matter in Europe. How can this be??? The system fails. I keep hitting a brick wall. It is very hard to keep faith that my efforts could make any difference. I feel broken, and I question everything.
And with this painful background of harsh disappointments, my trip to South Africa came up. In a way it became an escape. I really needed a break.
I had found a donor (Lister in Utrecht) who funded my participation to the 5th Summit of the Movement for Global Mental Health (MGMH, http://www.globalmentalhealth.org/events/5th-global-mental-health-summit-2018 ), which was held at 8-9 February 2018 in Johannesburg, South Africa. It was good to experience that there is also still Dutch support for my actions, illustrated by the donation of the Dutch organization Lister. – It is actually a fact that more and more people learn about the UN CRPD, and that our support is growing. Yet apparently, we haven’t yet reached the critical mass needed for actual change. We should keep the hope alive. Maybe things will be different in the future. Anyway, it was positive that I had a Dutch donor for this trip.
I decided that I wanted to forget about the disappointments when I travelled to South Africa. I knew it would hit me again when I came back, but I really needed a break too. So I focussed on joining the conference of the Movement for Global Mental Health (MGMH) and I was lucky that the cheapest ticket allowed me to stay a bit longer in South Africa.
On Monday 5 February 2018 I departed from Eindhoven, went by train to Amsterdam, and then continued on a flight to Paris, to have a long flight overnight to Johannesburg. I arrived the next day, Tuesday 6 February, around noon. Annie Robb (Ubuntu Centre) had also arrived at O.R. Tambo Airport in Johannesburg. It was really great to see her again. We sat down to have a burger at Spur, and smoked some cigarettes while trying to figure out how to move on best from the Airport into Jo’burg, especially because we couldn’t get hold of Dominique, who would host us for a couple of days. Eventually it all worked out and we took an Uber taxi to Dominique, a great man with many interesting stories. We had a great evening chatting together with some bites and drinks. Then we all went to bed.
On Wednesday 7 February, we first slept long, and then had a nice meal with bacon and eggs. We decided to have a chill day at Dom’s place, doing some work, unwinding, preparing for the conference, and seeing if we could join the Closing Arguments of the Life Esidimeni Arbitration, which is a justice-process concerning a harsh recent tragedy where over 144 people died from neglectful acts by a mental health care institution. The hearings had been going on for over a month, and I had followed some of it online via livestream. It seemed possible for us to attend the Closing Arguments on Friday 9 February.
We also strolled to the supermarket nearby to get some nice food and some wine and cheese, and in the evening we had a really nice BBQ with Dominique. It was a good day.
On Thursday 8 February, the Uber taxi came to pick us up in the morning, a little bit later than expected, and we arrived a bit late at the Wits school of Public Health (University of the Witwatersrand), where the MGMH conference was held. Charlene Sunkel had taken care of our registration and welcomed us. An outline of the conference programme can be found here: http://www.globalmentalhealth.org/5th-global-mental-health-summit-2018-1
We were given a goodiebag with “equal access to justice” written on it (ouch!). Notably, there was no attention for the topic of access to justice at the MGMH conference (which was not a real surprise). The goodiebag made no sense (we even got a pill-box with ‘access to justice’ written on it…, what do pills have to do with access justice???? – to me it sounds like it says “shut up about complaints and take a pill”). The goodiebag was filled with advertisements of psychopharmaceuticals, with slogans like “revive normalcy” (as if the pill will make you “normal” again?). Like I said, it was rubbish being given out. It is really disturbing to see the senseless goodiebags and giveaways at many big mental health conferences. At MGMH it was not different than at WPA or any other.
I joined the sessions in the plenary room, and very soon it was depressing me. Overall, the medical model of mental health was being promoted, as if it’s a chemical illness, delinked from social interaction. I didn’t agree to the medicalized conceptualization that was portrayed. It was wholly out of balance. It was a commercialized event, marketing the mental health industry into the Global South. Yet they did use some human-rights related slogans (like “access to justice”, delinked from substance). So in this way, they create the image of a human-rights-driven movement, while the actual substance didn’t reflect the human rights based model (e.g. they were not addressing the global burden of obstacles, but stayed with “global burden of disease”). There were some high level speakers at the conference, and in a way, I was disappointed to see the lack of attention for a number of human rights issues. Notably, also the issue of bad practices occurring in mental health services were mostly unaddressed, except for the Life Esidimeni tragedy, which was basically addressed as an isolated incident of bad practice, ignoring the large scaled injustices in the mental health field, such as the widespread practice of forced treatments (including isolation, chaining and restraints, forced drugging) and inhumane conditions in institutions. At the MGMH-conference, they seemed to promote the idea that the western, medicalized model of mental health care is a saviour, which we know is questionable. I missed the innovative mindset. The UN Convention on the Rights of Persons with Disabilities (UN CRPD) obviously requires change at all levels of mental health care, including the conceptualization of services. It was a pity that the MGMH-conference was merely a marketing event, rather than a deep reflection on the direction of developments.
Some speakers were interesting though, and tried to bring a higher level of reflection to the mental health field. And also the importance of community based services was repeatedly addressed and stressed throughout the conference, yet often in a rather medicalized view (like outpatient support). It sounded like a charity model, where persons with mental health problems are seen as “being vulnerable”, instead of recognizing that the society actually is the cause of the “position of vulnerability” by the existence of exclusion (which reflects the social model). And instead of the medical model, which only focusses on “repairing the individual”, it is important to “repair inclusion”. Mental health cannot be medicalized. Social aspects are crucial for mental health, both for origin and recovery, prevention and so on. Yet at the MGMH-conference, the medical model of “curing illnesses”, and supporting “vulnerable persons” seemed to dominate.
I listened to the sessions, and exchanged some critical reflections with Annie. During the break, we found some likeminded allies (Akriti and Raluca), and we stayed together for most of the conference. We were all shocked by the pill-box and the medicalized advertisements. We wondered how this could be changed. It has been widely exposed that the psychopharmaceutcal industry doesn’t adhere to ethical and moral standards (e.g. presenting unreliable research to promote their drugs, silencing the harm done by their drugs). The goodiebag was full of shocking examples (“revive normalcy”, psychotropic medication for 5-year old kids??). The role of the drug companies in preventing the shift from medical to social model must be discussed and addressed. The MGMH-conference missed that reflection. Yet, during the breaks of the conference, our circle of critical exchange seemed to grow, and eventually some interesting discussions and ideas arose, on which we will follow up with some key partners. (for example, there is a babymilk-code, which could be an inspiration).
Eventually, the most important part of the conference, for me, was in the break times, when I was meeting people. And during the conference itself, I really felt like some essential reflections were missing. The UN CRPD is now over 10 years old. I expect the high level professionals to act accordingly.
I just listened to the rest of the sessions, and I had my own opinion about it.
At the end of the conference day, Annie and I took the Uber taxi back to Dom’s place, where we joined a communal dinner. That was really nice. Elizabeth and Dom had cooked the meal, and most of the 8 people living there joined. It was really nice. We had a delicious dinner and a very good time with good company.
Late in the evening, Annie and I went to check on internet for a ticket to Cape Town. The city of Johannesburg is actually almost fully built from barbed wire and electric fences. There are guard dogs and guards with armed response everywhere. It is advised not to go anywhere by foot for safety reasons, and even the Uber taxis stop driving after a certain time (too dangerous). Therefore, we decided that we should get out of Johannesburg and spend our free days in Cape Town, which is a completely different area, much safer, and with beaches. We decided that we should have a relaxing time at Annie’s place (Stanford). It was a great idea! So we checked the cheap ticket options, and found out it was possible. We decided to make the booking the next day.
At Friday 9 February, we were picked up by an Uber taxi again, early, because we wanted to stop at the supermarket (Pick and Pay with Money Market) to buy an airticket to Cape Town for me, because at the supermarket I could pay in cash or with ATM-card (since I have no creditcard online booking wasn’t possible). I found it hilarious to buy an airticket at the supermarket. It seemed to be new for the girl behind the counter too. I got a receipt which was my ticket, and then we moved on.
We continued with the Uber driver to the venue of the Life Esidimeni Arbitration hearing. It was close to the conference venue, at Emoyeni, Parktown in Johannesburg.
The Life Esidimeni Arbitration is a justice-process concerning the horrifying deaths of at least 144 people, who had been carelessly transferred from the Life Esidimeni institution, into various places of neglect and violations, including locked sheds and homelessness. They suffered and died, from thirst and hunger and other preventable causes. This could have been easily prevented if proper attention had been given to these persons. Their lives have been lost, and their families are grieving. It is a nationwide scandal. And now the Life Esidimeni Arbitration is taking place to try to do justice, to find out what happened to the loved ones, and to expose who played a role in this horrifying tragedy that costed the lives of 144 individuals.
The Life Esidimeni Arbitration is a so-called alternative dispute resolution (truth and reconciliation). The hearings were public and had been ongoing for over a months, and have been broadcasted online. (e.g. news and videos can be found at: http://ewn.co.za/Topic/Life-Esidimeni-Arbitration )
During the hearings, families of victims were present in the room, and others were behind them, to watch the tribunal take place. You could feel the emotions in the atmosphere.
Several lawyers represented the families and questioned the persons who played a role, and they had to answer publically. The judge was (s)elected because there is a big amount of trust in him by the people: Judge Dikgang Moseneke. After many days of intense hearing, with horrible details of ignorance and suffering, the Closing Arguments were made by the lawyers, and the representatives of the state (ministry). The state delegation took a terrible position by trying to dodge the responsibility over the deaths, and by suggesting a minimal amount of compensation only for the “grief of families”, but stating “they couldn’t issue compensation to the lives lost as those people are no longer alive”. It was repulsive, and it lacked respect. The shock was feelable in the room. Then the judge asked the state delegation to read out the defined purpose of the hearing, twice, so it echoed in the room that the lives lost are definitely part of the justice-process, and the misplaced attitude of the state representatives was exposed publically. I really loved how judge Moseneke handled the situation. At the end of the hearing, the names of the 144 individuals were read out, with some loving memories of who they were. It was incredibly intense and emotional.
Judge Moseneke will present his decision in 30 days from the Closing Arguments.
The hearing of the Closing Arguments took longer than expected, but finished around 14.00, followed by a delayed lunch buffet. I was really hungry by then, and the food was delicious, as it should be, in respect to the grieving families. I had also noticed that there was attention for emotional support to the grieving families, such as people handing out water and tissues, and offering a shoulder to lean on, and there was a counselling room for support. Also the venue was spacious, and allowed people to easily step out and take their time. There was a space with flowers. I found it well organized.
After the Life Esidimeni hearing, we walked back to the venue of the MGMH-Conference, which was very close by, just down the road. We arrived just after 15.00, right in time to join the session where the MGMH would launch a “global mental health peer network”.
To me this was another controversial point on the MGMH-agenda, and it was the main reason why I joined this conference, to observe this development, and to see if there are ways to avoid division and achieve unity in the global movement of persons with lived experience in all variety. To me it is strange that this network is launched without a close consultation with the existing global organization of users and survivors of psychiatry (WNUSP, www.wnusp.net ). And I am worried about a potential crack in the global advocacy, with the risk of a non-unified message, or a message that doesn’t reflect all diversity of persons with lived experience. With WNUSP we aim for inclusion of voices, and we offer room for both critical perspectives (as survivors) and consumer-based perspectives (users and ex-users).
The session on the launch of the “global mental health peer network” comprised a kind of marketing event: launching a facebook-page, a leaflet, a forum, a list of ambitions. There wasn’t much room for deep discussion as time was limited, and it was presented as a celebration. So I just listened and observed, while I had many mixed feelings about it.
Of course it is positive when peers unite, but then again, real unity would be preferred. So it’s hard for me to understand why this network came up out of the blue, with that specific title of “Global Mental Health Peer Network”, which in this context bears the suggestion that the “global voice” is narrowed to merely a “consumer-based” perspective. (especially since the link to MGMH and consequently also the psychopharmaceutical industry is implicitly there, e.g. by funding structures). And we know that the medical model holds a lot of power over people’s lives, as an authority. It is hard to prevent the status quo of power imbalance in a structure of financial and material dependence. Therefore I am already worried about the independence of this new “global mental health peer network”. It is my worry, that the network will exclusively host consumer based perspectives on medicalized mental health industry, in the margins of the existing dominance of the medicalized views. While there are many persons with lived experience who do not feel comfortable in these margins, and want to challenge the fundamental concepts of mental health and care from a broader social perspective and a human rights based model.
I wasn’t the only one with these worries. Again I met some interesting people with critical perspectives outside the conference room, and we decided to talk about some of the issues, while enjoying a drink.
On my way out, I met Vikram Patel, and he asked my opinion on medication. I stated: I am not fully against all use of psychopharmaceutical medication, but I think it’s role is generally really misunderstood and overpromoted in mental health care. I think it could sometimes be a tool, but not a remedy. Fair information is highly needed. And medication can only be based on choice, otherwise it is not helpful but disturbing. Vikram Patel then said “You are actually quite reasonable” (afterwards I laughed a lot about his surprise of me being “actually quite reasonable”).
It is exactly this attitude that survivors face, where criticism is confused with “being unreasonable” (or “lacking insight”).
It is important that the “global voice” of persons with lived experience includes the diversity of perspectives, also survivors, who may have had very negative experiences with mental health care, or were wholly neglected and never had any support. WNUSP aims to include all this diversity.
I tend to conclude that I am somewhat sceptical to the scope of the Global Mental Health Peer Network, due to its intrinsic links with the MGMH (and medicalized views), for which it may be generally narrowed to a consumer-based perspective within the existing margins of the status quo (leaving out more critical perspectives, such as survivors). We will see how it unfolds.
With a group of about 8 people (including some key partners of WNUSP, like OSF and CBM), we went to have a drink at a terrace of a hotel nearby, and we had a very interesting conversation about the role of pharma, and possible actions to re-balance the powers in the field (like the babymilk marketing code).
Because Annie and I stayed a bit further away, we couldn’t stay to have a dinner together with the others. We left with our Uber taxi, and dropped Akriti off at her hotel on the way. Then we had another nice night at Dom’s place. Since it was my last evening in Jo’burg, I didn’t want to limit my time with Dominique, and we have been talking until very late at night. Then Annie woke up, and we talked about our plans for Cape Town. I then decided to check the details on my ticket closely, it was around 3 AM. I then suddenly found out that there had been a mistake, and saw the departure time on my ticket was 5.55 AM, which actually meant that we had to leave to the airport immediately. What a shock it was to find that out! And then we faced the challenge to find a taxi at night in Jo’burg, which appeared really hard. But after trying a lot of taxi-numbers, we finally found one. Then we quickly got our luggage together, and waited for the car. Then we faced the challenge of closing the gate, and it appeared challenging to wake up any of the residents to close the gate behind us. But we succeeded in that too. Then the car was making weird noises, and Annie and I were just hoping the car wouldn’t break down and leave us stranded in the middle of Jo’burg. We made it safely to the airport, arriving in time for the flight. And then upon check-in, there appeared also a mistake on the ticket concerning my name (which was put as “Netherlands”, which is obviously not my name but my nationality). Anyway, also this was overcome, and then I eventually boarded the airplane to Cape Town. I had had no sleep at all that night.
On Saturday 10 February, I arrived safe and sound at Cape Town airport at around 8 AM. Then I sat down for a breakfast at Spur, while waiting for Annie, who was arriving around 10.00. Now my trip had become a holiday (it was actually really long ago that I had a real holiday). I felt so lucky.
Annie arrived, and her friend Anine came to pick us up from the airport by car. We then had a really beautiful drive along the beach road, viewing the ocean, the mountains. It was beautiful like a paradise. I felt so lucky to be there, and to witness and experience this beauty of nature. It was a long drive, but I enjoyed every minute.
We made some stops along the way, including to dip ourselves in the ocean, buying cigarettes in a township, saying hi to some friends of Annie at “blue moon”. The Blue moon is quite a big piece of land owned by a community of people who live there. There are some small houses and a very big vegetable garden, and a lot of existing nature, even with a small lake. At one end there is a part called “the last resort”, which was like a nicely decorated camp-site with some small sheds where people lived more permanently, with fire places, hangouts, toilets, a kitchen-trailer, even a stage for social entertainment, and everything was hand-built, with nice pieces of garden everywhere. It was really lovely place, it had the atmosphere of freedom.
I still hadn’t slept, so we had a relaxing evening, had something to eat, and then went to bed to sleep.
On Sunday 11 February, we got up early to go outside and watch the sunrise at the jetty on the lake near the “haunted house”. It was divine and serene. We pictured ourselves as living in the “haunted house”, which looked really nice, and is nowadays open for public at certain times.
We continued our chill day by picking up Annie’s friend Shawn, who joined us for a nice walk along the shores and in the village called Hermanus. We had a really nice time strolling around together. And it was hilarious to pretend that the parked sports cars were ours! We really had fun.
Then we made a drive to Grotty beach, where we went for a swim in the ocean. Although swimming wasn’t really possible due to the force of the ocean, every wave could drag you either to the beach or into the ocean. I was surprised to feel the immense force of the ocean, since the sea in the Netherlands is actually much calmer. So we stood in the powerful waves, wiggling our feet searching for mussels, together with dozens of other people there. It was a beautiful experience.
Then we returned to the Last Resort at Blue moon, and had a nice walk around there, eating fresh passionfruit (granadilla) right from the tree! And we swam in the small lake, together with tortoises. It was so divine.
Upon return at the Last Resort, there was a gin tasting party, and we were invited to join. A guy had displayed his brewing equipment, and explained the process, and how one could make different colours of gin and even absinth. Of course there was a possibility to taste everything too. It was a cosy circle of people snacking and drinking, tasting different things. It was very nice and relaxed.
At some point, Annie and I left and went home, to unpack our groceries, which were getting hot in the car, and we had a little nap. We walked around in Stanford a bit, and then stayed at home for the rest of the evening. It had been a really great day. I enjoyed every minute of it.
On Monday 12 February, we got up early again. We had planned to explore the beaches more southwards. Again it was a beautiful drive full of pretty views. We came accross Gansbaai, famous for its shark cage-diving (but I don’t like cages, nor the operations of such wild life tourism e.g. feeding sharks to stay near). Yet we could still enjoy the pretty view of the ocean. It was quite windy, and a bit more chilly than expected. The waves splashed on the rocks. We drove to Frans Kraal beach, where we saw a snake in the dunes. We spent quite some time collecting sea shells, until it became a bit rainy, and we decided to sit down in a place for coffee and a hotdog. Then we continued our trip southwards, to Pearly Beach, and Birkenhead, where we kept on searching for nice shells. We found many, and filled our pockets and bags, inspired with many decorative ideas. Then we started making our way back to Stanford, and again we made some nice stops along the way. We spontaneously saw a shop which had dresses on discount, and eventually, both Annie and I bought really nice clothes there. It was lovely.
We had a fantastic day together, enjoying so many things. It really made me forget about the recent disappointments in my life. I could just take a break, and take in the beauty that surrounded me, in so many ways. I felt lucky to be there, and lucky to have Annie as a friend.
On our way home, we stopped at the supermarket to get some nice food and snacks for the evening (and a salad for the next day). And then we stayed at home, snacking and relaxing. It was such a great day.
Tuesday 13 February was already the last day of my holiday. Again we got up early, and went to the petting farm nearby, where we sat near another small lake, and drank the coffee that we brought. After this nice picnic, we went to Hermanus, initially to buy a nail file, but we ended up buying bandanas and tattoo sleeves as well. It was fun. We sat in the dunes, finished our coffee at the beach, and then we continued to drive north. We made another stop at Pringle bay, and spotted another nice shop, where I got a new bikini top, and Annie found some great shoes. We were like divas now. We continued to drive along the shore, and went to Hangklip, which is a very nice area, with impressive rocks all over the beach and in the water. The rocks break the waves a bit, so we could really swim. It was a very hot day, 36 degrees Celsius or so, and the sun really burnt on my skin despite the suncream. Swimming was great. We picnicked in the shade of the rocks, with salad and bread. We had a private beach to ourselves. The villas nearby were all abandoned (mostly owned by people who only come there for a couple of months a year). I felt like I was actually living in paradise at that time. It was amazing.
At some point, I even felt a bit emotional, grateful that this experience was given to me at such a hard moment in my life. Grateful that I could still experience paradise, and just enjoy the sand on my bare feet, see the beauty of nature in front of me, breathe fresh air, feeling free and joyful in company of Annie. “not everything is lost”. It was a very precious experience.
We drove a bit further, and Annie took me to a waterfall. It was absolutely amazing. We climbed over the rocks, careful as they could be slippery, and sat in the river, massaged by the waterfall, a natural whirlpool. It was so incredibly divine. I could only feel blessed. I felt like it was washing some of my sorrows away. I had the best time I could have. I was in a paradise, together with Annie. After that brilliant experience, we had become hungry and we stopped to buy fish and chips, which we then ate on the beach again, until a bit of rain came. At a cheap shop nearby, I found myself a small bag to repack my luggage, since I wanted to take some shells home. And then I couldn’t resist also buying a full range of coloured earrings with skulls, as a real shopping diva. Again every minute of the day had been so perfect. I was really happy.
In the evening, we visited Shawn again at the Last Resort, and we had a nice coffee. Then finally, after a long period of drought, a big shower of rain came by. It made everyone happy, and we sat and watched the rain. When it cleared up again, we returned home.
It had been such a perfect day, but I knew I had to pack my bags, and leave this paradise behind. It gave me many mixed feelings.
On Wednesday 14 February, we had a little bit of time in the morning to visit the elementary school nearby, where a friend of Annie works. When we entered the gate of the school, the children, age 3-5 were enthusiast, and each came to give us a welcome hug. It was so sweet. And no surprise that they liked the colours in my hair, which they tried to name correctly. So sweet. I really enjoyed it.
Then it was time to put my bags in the car, and we started driving from Stanford back to Cape Town, to the airport. I was again enjoying the beautiful views, taking them in to remember.
At the airport, I went to the desk to have the name on my ticket corrected, and I found out that also the luggage wasn’t registered on my ticket (apparently that was also forgotten, but it got corrected and that wasn’t expensive). My flight to Johannesburg appeared to be delayed, and upon arrival, I just made it in time to catch my flight to Paris, and then to Amsterdam and then finally a train trip to Eindhoven. I arrived home on Thursday 15 February in the afternoon. The trip from door to door had taken over 24 hours. I was exhausted.
My holiday in South Africa has been one of the best experiences of my life. It was divine, and it helped me to forget about the recent disappointments, and just enjoy the present.
Upon homecoming, I felt pain again, and I knew I had to face the disappointments in my own life, and find a way to overcome the loss of hope. It’s not an easy task, but I know I can do it.
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Je kunt nu ook Smileys gebruiken. Via de toolbar, toetsenbord of door eerst : te typen en dan een woord bijvoorbeeld :smiley