COSP CRPD 2018 - painful situation
Door: Jolijn Santegoeds
Blijf op de hoogte en volg Jolijn
20 Juni 2018 | Verenigde Staten, New York
From 10-15 June 2018 I have been to New York, to join the COSP, Conference of State Parties to the UN Convention on the Rights of Persons with Disabilities (UN CRPD). Also see the official website: https://www.un.org/development/desa/disabilities/conference-of-states-parties-to-the-convention-on-the-rights-of-persons-with-disabilities-2/cosp11.html The COSP CRPD is a large conference with delegations of States who ratified the UN CRPD and also a lot of organizations of persons with disabilities (DPOs/OPDs) and non-governmental organizations (NGOs) who come together to discuss the implementation of the UN Convention on the Rights of Persons with Disabilities.
The overarching theme was “Leaving no-one behind through the full implementation of the CRPD”. I was part of the delegation of the World Network of Users and Survivors of Psychiatry (WNUSP). On 11 June there had been a Civil Society Forum, prior to the start of the official COSP CRPD. (also see: http://punkertje.waarbenjij.nu/reisverslag/5027923/civil-society-forum-dgd-on-art-4-3-at-cosp-crpd ).
On Tuesday 12 June 2018, the 11th Conference of State Parties to the UN Convention on the Rights of Persons with Disabilities (CRPD) started. There was an official programme, and also there were side-events organized by various organizations of persons with disabilities (DPOs/OPDs) and NGOs.
At 8.15 in the morning, there was a side-event by TCI Asia: “Transforming Communities: from Mental Health to Inclusion”. Unfortunately, I overslept a bit, and I came late (around 9 AM).I really felt bad about that. I had missed most of the presentations, and I only heard Yeni Rosa Damayanti making a very powerful presentation, on how persons with psychosocial disabilities are subordinate to the psychiatrist, while in fact an equal level of dialogue is needed. Yeni also highlighted the dominance of medication (It’s pills pills pills and that’s it). But medication is only 1 segment. Life is not pills. What is needed is support. It was very clear and powerful. Also the report of Human Rights Watch on the horrifying situation of mental health care in Indonesia was mentioned: Living in hell, see https://www.hrw.org/report/2016/03/20/living-hell/abuses-against-people-psychosocial-disabilities-indonesia
Then there was proper time for debate.
There was an interesting discussion about identity questions in the movement of persons with psychosocial disabilities. A remark was made on the fact that a number of persons with lived experience are in medical-model organization, and some are organized outside the existing medical model, e.g. opposing what psychiatry does to us. Some people feel that the word Disability is not appropriate for their situation of psychosocial problems, and they may hesitate to join the ‘disability-movement’.
Bhargavi Davar responded that the Disability-framework is at least far better than the medical-model framework. As long as persons with psychosocial disabilities are viewed through the lens of the mental health acts, the only focus is the treatment of the so-called illness, medication is overdominant and all the rest is lost - they get pills and bills and loose all rights, - while identifying as persons with disabilities entitles us to all rights under the UN CRPD. Psychosocial disabilities should not be approached through a mental health-gate, but by a development gate which encompasses all aspects of life.
The term ‘users and survivors of psychiatry’ may apply to people who have been harmed by the system, yet there are also people who have no anger at the system (e.g. because the system is not there) and their empowerment does not come from combatting the colonial framework.
Vicky Lee then gave a summary of key messages of the side event. Persons with psychosocial disabilities in Asia face exclusion and traditional views may lead to stigma and discrimination. The colonial framework of medicalizing and psychiatrizing psychosocial disabilities is harmful. Positive practices that further inclusion move beyond the medical mental health models and focus on social aspects, such as housing and work, and supporting community inclusion. Persons with disabilities must be the voice in the centre. Investments are needed to mobilize DPOs, and solidarity in the disability movement is needed.
After the side-event, I went to the big plenary room, for the General debate. It was already full, and therefore I had no access. (but the session is available on webcast - Also see the official website: https://www.un.org/development/desa/disabilities/conference-of-states-parties-to-the-convention-on-the-rights-of-persons-with-disabilities-2/cosp11.html )
There were an extra large number of participants in the room at this day, because the Elections for the new CRPD Committee members were held, and many people had come to lobby for support of their nominee. The results of the elections can be found here https://www.ohchr.org/EN/HRBodies/CRPD/Pages/Elections2018.aspx .
Some strong allies have been elected, but also some people who may not fully see the new paradigm regarding psychosocial disability yet.
In the afternoon, I did get an access badge for the main floor, since I was on the speakers list for the General Debate. During the General Debate, country representatives made their statements (profiling what their country does on CRPD implementation). And also representatives of civil society were given the opportunity to speak. All interventions were limited to 3 minutes.
(I didn’t hear all the state interventions, but the only country that impressed me positively was South Africa, e.g. because they included the Life Esidimeni tragedy in their presentation, see https://en.wikipedia.org/wiki/Life_Healthcare_Esidimeni_Scandal )
By the end of the afternoon (around 16.30), I made a statement on behalf of WNUSP and CHRUSP, which you can read here:
***
COSP CRPD, 12 juni 2018, Joint intervention of WNUSP and CHRUSP
I am Jolijn Santegoeds, co chair of the World Network of Users and Survivors of Psychiatry (WNUSP), and this is a joint intervention with the Centre for Human Rights of Users and Survivors of Psychiatry (CHRUSP).
The Washington Group short set of questions does not count persons with psychosocial disabilities. One cannot say ‘leave no one behind’ and promote that data gathering tool. It makes a difference which groups of persons with disabilities are counted and which groups are not, just as it makes a difference to count persons with disabilities at all. If states use a tool that ignores persons with psychosocial disabilities, state officials and the general public internalize an assumption that persons with psychosocial disabilities do not matter, or that we are not persons with disabilities. With such a tool, they are unable to gather information about how persons with psychosocial disabilities are enjoying our rights or being deprived of our rights, or about what we need to remedy the deprivations. It is not acceptable to leave us behind. It is not acceptable to treat us as an afterthought to the disability community. It is not acceptable to assume that our experiences and needs are the same as those groups of persons with disabilities who will be counted.
We are deeply disappointed that states have not followed through on commitments made in the CRPD to end the practices of forced institutionalization, forced treatment, guardianship and substitute decision making. We remain under constant threat of being taken out of our homes, out of our lives and being put under the control of other people who will have the power to do whatever they want to us and call it treatment - whether it be restraints, isolation, or mind-numbing drugs and electroshock. These are inhuman and degrading treatments amounting to torture and arbitrary detention. Where is the claim to leave no one behind when millions of us throughout the world are being subjected to the worst abuses, not only unhindered by states parties to the CRPD but actively enforced and promoted by those very states parties?
People with psychosocial disabilities have many additional concerns and needs. Most of us live in poverty and many remain excluded from work because of discrimination in hiring and also because of denial of reasonable accommodation. Many of us remain institutionalized and cannot get out because there is no social assistance framework to provide housing and income - this is not a mental health need, it is a survival need. Yet these issues too remain isolated from the mainstream of disability rights policies, and are generally put under the jurisdiction of health ministries. Like other persons with disabilities, we are not ill, we are not an illness, and we insist on fulfillment of all our human rights guaranteed in the CPRD.
In countries which have a mental health care system, forced institutionalization and forced treatment of persons with psychosocial disabilities is currently practiced and authorized in law. Even after ratification of CRPD. We see in many countries that law reforms actually expand options for forced treatments.
A point of concern is the Council of Europe’s Additional Protocol to the Oviedo Convention for “the protection of human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment”. As one can see already from the title, this protocol, if adopted, will instead of protecting our rights and dignity, legitimize grave human rights violations, discrimination, and ill-treatment of persons with psychosocial disabilities and create impunity for perpetrators.
The protocol is a medical model-based instrument that runs counter to the CRPD by authorizing mental health detention and non-consensual psychiatric treatment.
Adopting this additional protocol will certainly and deliberately leave us behind….
We are urging State parties and UN bodies to take action to stop this additional protocol in Europe.
In the meantime, we should look to other regional mechanisms than Europe to be inspired. In particular, we congratulate DPOs in Africa with their advocacy, and the African Union on its newly adopted Disability Protocol to the African Charter on Human Rights. This protocol, unlike the draft Oviedo protocol, is aligning with the CRPD and its jurisprudence in ensuring rights of persons with psychosocial disabilities on an equal basis with others, and the right to be free from forced treatments.
***
Unfortunately, my microphone was cut off, just before I could mention the African Disability Protocol. There were only 3-4 minutes time to speak.
After my speech, I got quite a lot of compliments from people who thought it was a strong, powerful and necessary statement. I know there were also some people who don’t like the criticism on the Washington Group set of Questions, as they want to achieve agreement on these indicators. But in my opinion, it is a premature tool. And actually, nobody criticised my speech, but I had some discussion on the Washington Group set of Questions in the hallways, and noticed there was a real difference of opinion on this between various organizations.
It is a fact, that if we, persons with psychosocial disabilities, are left out now, from the start, we will still remain “that special group”, again “too complex to be included?”, “left behind AGAIN??” as if the massive torture and widespread neglect by failing mental health services is not a priority for our global situation on the rights of persons with disabilities? Personally, I cannot ignore it and look away…. I feel a growing gap to the cross-disability movement. I hope we can counter this exclusion.
The General Debate was closed around 18.00, and there was a last round of side-events going on. Hege went with Beate to a ballet, and I went with Tina, and we had very nice food from a hot and cold buffet at an Amish Market nearby. I really loved it. Then I went back to my hotel relatively early. I didn’t want to be late again the next day.
*
On Wednesday 13 June 2018 the second day of the COSP took place.
In the morning, the general debate continued, followed by a plenary session on National fiscal space, public-private partnerships and international cooperation for strengthening the implementation of the UN CRPD.
I had joined a side-event on “Who gets a seat at the table – Global south and global north perspectives – when all means some”. It was highlighted that persons with psychosocial disabilities and persons with developmental disabilities are systematically being left behind globally. And strategies and means to increase and strengthen efforts to reach the Sustainable Development Goals were presented by a panel of change agents from the global North and the Global south, highlighting the work that remains to be done before everyone has a seat at the table. It included the initiative of CitiesRise (which I am sceptical about as it is led by service providers with a kind of medical model undertone). It was emphasized that persons in institutions are at high risk of having (all) of their rights violated, and they are deprived of their voice. Their rights are often not even taken serious by others (e.g. when a woman in an institution was raped, the staff thought ‘an apology by the perpetrator’ would be sufficient ‘remedy’, which obviously is not).
Persons with disabilities are not a homogenous group, but there is a wide variety of voices, e.g. by gender, race, age, disability. All these voices must be IN.
Jane Akinyi stressed the need for self-advocacy of persons with disabilities, while Sue Svenson of Inclusion International once more defended her view on the issue of family representation, which she considers ‘crucial for persons with high support needs’. The role of family in terms of representation of persons with disabilities was an ongoing point of debate throughout the COSP. It was a sensitive point for the family-organizations who have so far represented a certain group of persons with disabilities (especially but not exclusively on intellectual disability and autism). The CRPD Committee will take this discussion into account in the upcoming General Comment on participation (art 4.3 and 33.3). As persons with psychosocial disabilities, WNUSP has been very clear in saying that we don’t want family to substitute our voice.
Next was a plenary session on the rights of women and girls with disabilities.
I missed the speakers of the session, but I was just in time to hear the statement by Hege Orefellen (WSO Norway) on behalf of WNUSP.
***
Intervention COSP June 2018
Hege Orefellen – World Network of Users and Survivors of Psychiatry (WNUSP)
This is a joint intervention by the World Network of Users and Survivors of Psychiatry and Center for the Human Rights of Users and Survivors of Psychiatry.
As we know, women and girls with disabilities experience multiple and intersecting forms of discrimination and violence, including forced medical and psychiatric interventions. Intrusive medical practises like forced sterilization, forced electroshock and drugging, restraints and solitary confinement are widespread, and some of these practices are used more on women. Also some practises can be especially retraumatizing for women with previous experience of sexual or other violence, like to be put in restraints or being held down, while your underwear are pulled away to forcibly inject you with psychotropic drugs.
Various researches show that a large number of women and girls in psychiatric units have experienced violence or abuse earlier in their lives. Violence against women, and women’s reactions to such violence, often becomes an entry point to coercive psychiatric measures. Psychiatric diagnoses can take away women’s power to name their own experiences and create a basis for mental health detention and forced treatment. As these violent acts against women and girls with disabilities are tolerated and authorized by domestic laws, they are not recognized as acts of violence and ill-treatment. Instead of being abolished and prosecuted, such acts go with impunity under the guise of care and treatment. Women and girls with disabilities are not only left behind, but in large numbers locked up, segregated from society, and deprived of all possibilities for inclusion and participation.
State parties cannot with credibility talk about leaving no one behind without letting us out of institutions and into society. There can be no full inclusion of all persons with disabilities, including women and girls, without opening the locked doors to all mental health facilities. There can be no full equality without respecting our physical and mental integrity, our right to be free from both sexual violence and psychiatric violence.
A crucial point of concern is the Council of Europe Additional Protocol to the Oviedo Convention for “the protection of human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment”. As one can see already from the title, this protocol, if adopted, will instead of protecting our rights and dignity legitimize grave human rights violations, discrimination, and ill-treatment of persons with psychosocial disabilities. The protocol is a medical model-based instrument that runs counter to the CRPD by authorizing mental health detention and non-consensual psychiatric treatment. Adopting this protocol will certainly and deliberately leave us behind and we call on all human rights bodies and State parties to take action to stop the protocol from being adopted.
In the meantime, we should look to other regional mechanisms than Europe to be inspired. In particular, we congratulate the African Union on its adopted Disability Protocol to the African Charter on Human Rights. This protocol, unlike the draft Oviedo protocol, is aligning with the CRPD and the jurisprudence of the CRPD Committee in ensuring persons with disabilities on an equal basis with others the right to not be subjected to forced medical interventions. Thank you.
***
I also went to a side event of Human Rights Watch, on Persons with Disabilities in Prison: Challenges and Good Practice. There was a presentation of the report of Human Rights Watch on persons with disabilities in prison in Australia: “I needed help, instead I was punished” ( see https://www.hrw.org/news/2018/02/06/australia-prisoners-disabilities-neglected-abused )
It was a good session, with a good debate. (I really liked the answers of Human Rights Watch, they DO understand the new paradigm).
Now, I will describe some other informal parts of the COSP. The unpleasant part. This year, there was a certain situation of impasse between various groups of persons with psychosocial disabilities. We had all hoped we could solve this by meeting together, but eventually, we didn’t get to meet all together . There have been various loose conversations in the hallways. I didn’t manage to solve all the barriers.
During the day, I had some painful conversations with some persons. I will call them: person A and person B (just to be discrete). I am explaining this, because WNUSP has become fragile by this situation.
Person A used to support WNUSP as a professional assistant, but we came in an impasse for various reasons. I had a number of painful conversations with A. and I addressed my views and questions of some situations, e.g. about the meeting in Amsterdam to which I was not invited (which seemed like deliberate exclusion to me). Or on sharing draft reports with others instead of the persons consulted (something I personally find very unethical). We tried to solve the issues, but we didn’t reach a unified position. Further cooperation with his assistance seems impossible due to the multiple disagreements, with several people involved.
By now, as a result of the broken contact with A., WNUSP actually has no direct contacts or ongoing relations with funders anymore. It was all in the hands of person A., who now supports other groups. I can now see he worked FOR us and not WITH us. He took the knowledge with him. WNUSP will have to start new. I hope the other groups won’t have to go through this loss of network when person A. leaves them.
I also had a very painful conversation with person B. There is a pre-existing history of WNUSP, and some people have strong opinions on who should represent WNUSP, and who should not. There is criticism on WNUSP being run by “big ego’s” and “white people from the Global North”. For some time, B. doesn’t want to be associated in any way to WNUSP anymore, and mentioned “WNUSP should be dissolved and be replaced by another network”. It hurted me to hear this. I felt like there was nothing I could do to change this perception, since invitations by WNUSP are not appreciated. It made me very sad. It seems like we can cooperate in co-existence, if that works out.
The situation is very sad and sensitive. But it is a fact that WNUSP has a lot of support across the world, across regions. WNUSP will not be dissolved, but we will try to make it grow, and hopefully one day we can achieve unity and positivity again.
WNUSP must also become more independent (not depending on assistants who may hide the contacts with funders, or who transplant the networks based on their own vision. This doesn’t leave WNUSP empowered, but leaves us disempowered…. ). This is our reality we must face.
WNUSP board is composed on the basis of elections, and the organization has an impressive history, e.g. being involved in the drafting of the UN Convention on the Rights with Persons with Disabilities. WNUSP lacks financial resources and some technical capacities, but personally, I don’t feel like trusting another assistant again. I would like to increase the independence of the network now.
In my opinion, WNUSP is worth to invest time/energy/resources in. It is sad that the issue of representation is dividing the movement now (and actually this has been a longer debate, involving disagreements among past leaders and activists in WNUSP, which brought forth a very delicate and sensitive, even emotional situation for some). The situation is loaded by what happened in the past.
Since I have been elected to foster WNUSP, I will continue to try to foster WNUSP to my best abilities. I may not be perfect, and I may be white, and to some extent a bit privileged as well (although that could be a matter of perspective too, but globally yes). However, as co chair of WNUSP, I will keep on trying to fulfil the role that was entrusted to me. I will not support to dissolve WNUSP, but I will try to make it better, and I hope, one day, there will be unity and positivity again.
At this point in time, WNUSP appears to be under pressure, (and in my personal view, it seems to me that assistant A did a transplant of networks, in favour of B. and in disadvantage of WNUSP). Personally, I don’t want B. to dissolve her organization. But I also don’t want WNUSP to be dissolved. For now, it seems like the only way to move on in peace is by co-existing, and giving each other room in respect.
For a moment, it seemed that we were getting closer to each other at the COSP, but unfortunately, directly after the COSP, the situation with A. and B. and the respective networks and stakeholders climaxed and escalated on email. It will take time and efforts to see if we can achieve unity again in the future. For now, I think there is a difference of opinion, but I think we can work side by side with respect for each other.
So this is how I saw the situation at COSP.
It had been a tough day actually. I have been upset several times, and emotional. I couldn´t understand why we couldn´t work together, and why the negativity (we all try to do our best). I know I haven´t been at my best in the past months due to my personal situation, but I have been open about that, and I had hoped for support for maintaining WNUSP. There seems to be a really nasty part of WNUSP history involved here. We can only hope that the future will be better.
In the evening , I bought something to eat from a shop, and sat in a small park (which was merely a group of trees on the pavement actually). Then, spontaneously, a homeless guy started singing for me, and we talked. It was nice. We talked about the deeper meanings in life, and about ´careless society´. I was happy to connect from one human to another, without complications. It was exactly what I needed, and the homeless guy seemed to feel the same. Just being gentle and nice to each other. It was perfect. It gave me air.
Later that evening, I went in the direction of Times Square to meet Beate and Hege for a drink. We went to a bar, and I randomly ordered the ´seasonal shake´, which then appeared to be a rainbow/coloured milkshake(can you believe that!!!). It was a fabulous coincidence, and we had great fun together. I was happy to be able to unwind a bit after such a day.
It was past midnight when I reached my hotel, relatively late. I knew I had to get up at 6 again the next day.
*
On Thursday 14 June 2018 was the third and last day of the COSP,
At 8.15 I joined a side event on leaving no-one behind – How to include persons with intellectual disability. It was interesting.
During the day, again I met with A, but the situation didn´t change much. We were still on speaking terms though. (I´m not sure how the situation is now)
I had many other conversations during the day, and spent most of the time networking. I was less active in joining side-events. I met many inspiring people though, including people who would like to link up with WNUSP, so that made me feel a bit better.
It had been a tough COSP for me. But since I just had a hard time, and I am finally getting back on my feet again, I just refuse to be feeling broken again. I will do my best to build a better WNUSP, in which all voices can feel safe and included.
After the COSP, I had a nice Mexican dinner with Tina and Amba, and then a nice cup of coffee at the rooftop of a hotel. We had very inspiring conversations, about what we CAN do. It is important to look at what we CAN do, and not be defeated by the things we could not solve at this point. It remains a very sad conclusion, but I cannot make it nicer than it is. It is a very sad reality.
*
On Friday 15 June 2018, I checked out from the hotel around 9 AM, and made a quick walk around at Times Square and then went to JFK airport with the metro again, for a long flight back home, arriving the next day early morning.
Despite the existing challenges the COSP had been an inspiring event. And personally, I was happy to be there, surrounded by many positive activists, truly inspiring. It lifted me out of a dark time. Therefore I feel stronger, and back in action now.
But the broken relations are really sad. WNUSP needs to grow, and become what people expect from it. That is our challenge.
The overarching theme was “Leaving no-one behind through the full implementation of the CRPD”. I was part of the delegation of the World Network of Users and Survivors of Psychiatry (WNUSP). On 11 June there had been a Civil Society Forum, prior to the start of the official COSP CRPD. (also see: http://punkertje.waarbenjij.nu/reisverslag/5027923/civil-society-forum-dgd-on-art-4-3-at-cosp-crpd ).
On Tuesday 12 June 2018, the 11th Conference of State Parties to the UN Convention on the Rights of Persons with Disabilities (CRPD) started. There was an official programme, and also there were side-events organized by various organizations of persons with disabilities (DPOs/OPDs) and NGOs.
At 8.15 in the morning, there was a side-event by TCI Asia: “Transforming Communities: from Mental Health to Inclusion”. Unfortunately, I overslept a bit, and I came late (around 9 AM).I really felt bad about that. I had missed most of the presentations, and I only heard Yeni Rosa Damayanti making a very powerful presentation, on how persons with psychosocial disabilities are subordinate to the psychiatrist, while in fact an equal level of dialogue is needed. Yeni also highlighted the dominance of medication (It’s pills pills pills and that’s it). But medication is only 1 segment. Life is not pills. What is needed is support. It was very clear and powerful. Also the report of Human Rights Watch on the horrifying situation of mental health care in Indonesia was mentioned: Living in hell, see https://www.hrw.org/report/2016/03/20/living-hell/abuses-against-people-psychosocial-disabilities-indonesia
Then there was proper time for debate.
There was an interesting discussion about identity questions in the movement of persons with psychosocial disabilities. A remark was made on the fact that a number of persons with lived experience are in medical-model organization, and some are organized outside the existing medical model, e.g. opposing what psychiatry does to us. Some people feel that the word Disability is not appropriate for their situation of psychosocial problems, and they may hesitate to join the ‘disability-movement’.
Bhargavi Davar responded that the Disability-framework is at least far better than the medical-model framework. As long as persons with psychosocial disabilities are viewed through the lens of the mental health acts, the only focus is the treatment of the so-called illness, medication is overdominant and all the rest is lost - they get pills and bills and loose all rights, - while identifying as persons with disabilities entitles us to all rights under the UN CRPD. Psychosocial disabilities should not be approached through a mental health-gate, but by a development gate which encompasses all aspects of life.
The term ‘users and survivors of psychiatry’ may apply to people who have been harmed by the system, yet there are also people who have no anger at the system (e.g. because the system is not there) and their empowerment does not come from combatting the colonial framework.
Vicky Lee then gave a summary of key messages of the side event. Persons with psychosocial disabilities in Asia face exclusion and traditional views may lead to stigma and discrimination. The colonial framework of medicalizing and psychiatrizing psychosocial disabilities is harmful. Positive practices that further inclusion move beyond the medical mental health models and focus on social aspects, such as housing and work, and supporting community inclusion. Persons with disabilities must be the voice in the centre. Investments are needed to mobilize DPOs, and solidarity in the disability movement is needed.
After the side-event, I went to the big plenary room, for the General debate. It was already full, and therefore I had no access. (but the session is available on webcast - Also see the official website: https://www.un.org/development/desa/disabilities/conference-of-states-parties-to-the-convention-on-the-rights-of-persons-with-disabilities-2/cosp11.html )
There were an extra large number of participants in the room at this day, because the Elections for the new CRPD Committee members were held, and many people had come to lobby for support of their nominee. The results of the elections can be found here https://www.ohchr.org/EN/HRBodies/CRPD/Pages/Elections2018.aspx .
Some strong allies have been elected, but also some people who may not fully see the new paradigm regarding psychosocial disability yet.
In the afternoon, I did get an access badge for the main floor, since I was on the speakers list for the General Debate. During the General Debate, country representatives made their statements (profiling what their country does on CRPD implementation). And also representatives of civil society were given the opportunity to speak. All interventions were limited to 3 minutes.
(I didn’t hear all the state interventions, but the only country that impressed me positively was South Africa, e.g. because they included the Life Esidimeni tragedy in their presentation, see https://en.wikipedia.org/wiki/Life_Healthcare_Esidimeni_Scandal )
By the end of the afternoon (around 16.30), I made a statement on behalf of WNUSP and CHRUSP, which you can read here:
***
COSP CRPD, 12 juni 2018, Joint intervention of WNUSP and CHRUSP
I am Jolijn Santegoeds, co chair of the World Network of Users and Survivors of Psychiatry (WNUSP), and this is a joint intervention with the Centre for Human Rights of Users and Survivors of Psychiatry (CHRUSP).
The Washington Group short set of questions does not count persons with psychosocial disabilities. One cannot say ‘leave no one behind’ and promote that data gathering tool. It makes a difference which groups of persons with disabilities are counted and which groups are not, just as it makes a difference to count persons with disabilities at all. If states use a tool that ignores persons with psychosocial disabilities, state officials and the general public internalize an assumption that persons with psychosocial disabilities do not matter, or that we are not persons with disabilities. With such a tool, they are unable to gather information about how persons with psychosocial disabilities are enjoying our rights or being deprived of our rights, or about what we need to remedy the deprivations. It is not acceptable to leave us behind. It is not acceptable to treat us as an afterthought to the disability community. It is not acceptable to assume that our experiences and needs are the same as those groups of persons with disabilities who will be counted.
We are deeply disappointed that states have not followed through on commitments made in the CRPD to end the practices of forced institutionalization, forced treatment, guardianship and substitute decision making. We remain under constant threat of being taken out of our homes, out of our lives and being put under the control of other people who will have the power to do whatever they want to us and call it treatment - whether it be restraints, isolation, or mind-numbing drugs and electroshock. These are inhuman and degrading treatments amounting to torture and arbitrary detention. Where is the claim to leave no one behind when millions of us throughout the world are being subjected to the worst abuses, not only unhindered by states parties to the CRPD but actively enforced and promoted by those very states parties?
People with psychosocial disabilities have many additional concerns and needs. Most of us live in poverty and many remain excluded from work because of discrimination in hiring and also because of denial of reasonable accommodation. Many of us remain institutionalized and cannot get out because there is no social assistance framework to provide housing and income - this is not a mental health need, it is a survival need. Yet these issues too remain isolated from the mainstream of disability rights policies, and are generally put under the jurisdiction of health ministries. Like other persons with disabilities, we are not ill, we are not an illness, and we insist on fulfillment of all our human rights guaranteed in the CPRD.
In countries which have a mental health care system, forced institutionalization and forced treatment of persons with psychosocial disabilities is currently practiced and authorized in law. Even after ratification of CRPD. We see in many countries that law reforms actually expand options for forced treatments.
A point of concern is the Council of Europe’s Additional Protocol to the Oviedo Convention for “the protection of human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment”. As one can see already from the title, this protocol, if adopted, will instead of protecting our rights and dignity, legitimize grave human rights violations, discrimination, and ill-treatment of persons with psychosocial disabilities and create impunity for perpetrators.
The protocol is a medical model-based instrument that runs counter to the CRPD by authorizing mental health detention and non-consensual psychiatric treatment.
Adopting this additional protocol will certainly and deliberately leave us behind….
We are urging State parties and UN bodies to take action to stop this additional protocol in Europe.
In the meantime, we should look to other regional mechanisms than Europe to be inspired. In particular, we congratulate DPOs in Africa with their advocacy, and the African Union on its newly adopted Disability Protocol to the African Charter on Human Rights. This protocol, unlike the draft Oviedo protocol, is aligning with the CRPD and its jurisprudence in ensuring rights of persons with psychosocial disabilities on an equal basis with others, and the right to be free from forced treatments.
***
Unfortunately, my microphone was cut off, just before I could mention the African Disability Protocol. There were only 3-4 minutes time to speak.
After my speech, I got quite a lot of compliments from people who thought it was a strong, powerful and necessary statement. I know there were also some people who don’t like the criticism on the Washington Group set of Questions, as they want to achieve agreement on these indicators. But in my opinion, it is a premature tool. And actually, nobody criticised my speech, but I had some discussion on the Washington Group set of Questions in the hallways, and noticed there was a real difference of opinion on this between various organizations.
It is a fact, that if we, persons with psychosocial disabilities, are left out now, from the start, we will still remain “that special group”, again “too complex to be included?”, “left behind AGAIN??” as if the massive torture and widespread neglect by failing mental health services is not a priority for our global situation on the rights of persons with disabilities? Personally, I cannot ignore it and look away…. I feel a growing gap to the cross-disability movement. I hope we can counter this exclusion.
The General Debate was closed around 18.00, and there was a last round of side-events going on. Hege went with Beate to a ballet, and I went with Tina, and we had very nice food from a hot and cold buffet at an Amish Market nearby. I really loved it. Then I went back to my hotel relatively early. I didn’t want to be late again the next day.
*
On Wednesday 13 June 2018 the second day of the COSP took place.
In the morning, the general debate continued, followed by a plenary session on National fiscal space, public-private partnerships and international cooperation for strengthening the implementation of the UN CRPD.
I had joined a side-event on “Who gets a seat at the table – Global south and global north perspectives – when all means some”. It was highlighted that persons with psychosocial disabilities and persons with developmental disabilities are systematically being left behind globally. And strategies and means to increase and strengthen efforts to reach the Sustainable Development Goals were presented by a panel of change agents from the global North and the Global south, highlighting the work that remains to be done before everyone has a seat at the table. It included the initiative of CitiesRise (which I am sceptical about as it is led by service providers with a kind of medical model undertone). It was emphasized that persons in institutions are at high risk of having (all) of their rights violated, and they are deprived of their voice. Their rights are often not even taken serious by others (e.g. when a woman in an institution was raped, the staff thought ‘an apology by the perpetrator’ would be sufficient ‘remedy’, which obviously is not).
Persons with disabilities are not a homogenous group, but there is a wide variety of voices, e.g. by gender, race, age, disability. All these voices must be IN.
Jane Akinyi stressed the need for self-advocacy of persons with disabilities, while Sue Svenson of Inclusion International once more defended her view on the issue of family representation, which she considers ‘crucial for persons with high support needs’. The role of family in terms of representation of persons with disabilities was an ongoing point of debate throughout the COSP. It was a sensitive point for the family-organizations who have so far represented a certain group of persons with disabilities (especially but not exclusively on intellectual disability and autism). The CRPD Committee will take this discussion into account in the upcoming General Comment on participation (art 4.3 and 33.3). As persons with psychosocial disabilities, WNUSP has been very clear in saying that we don’t want family to substitute our voice.
Next was a plenary session on the rights of women and girls with disabilities.
I missed the speakers of the session, but I was just in time to hear the statement by Hege Orefellen (WSO Norway) on behalf of WNUSP.
***
Intervention COSP June 2018
Hege Orefellen – World Network of Users and Survivors of Psychiatry (WNUSP)
This is a joint intervention by the World Network of Users and Survivors of Psychiatry and Center for the Human Rights of Users and Survivors of Psychiatry.
As we know, women and girls with disabilities experience multiple and intersecting forms of discrimination and violence, including forced medical and psychiatric interventions. Intrusive medical practises like forced sterilization, forced electroshock and drugging, restraints and solitary confinement are widespread, and some of these practices are used more on women. Also some practises can be especially retraumatizing for women with previous experience of sexual or other violence, like to be put in restraints or being held down, while your underwear are pulled away to forcibly inject you with psychotropic drugs.
Various researches show that a large number of women and girls in psychiatric units have experienced violence or abuse earlier in their lives. Violence against women, and women’s reactions to such violence, often becomes an entry point to coercive psychiatric measures. Psychiatric diagnoses can take away women’s power to name their own experiences and create a basis for mental health detention and forced treatment. As these violent acts against women and girls with disabilities are tolerated and authorized by domestic laws, they are not recognized as acts of violence and ill-treatment. Instead of being abolished and prosecuted, such acts go with impunity under the guise of care and treatment. Women and girls with disabilities are not only left behind, but in large numbers locked up, segregated from society, and deprived of all possibilities for inclusion and participation.
State parties cannot with credibility talk about leaving no one behind without letting us out of institutions and into society. There can be no full inclusion of all persons with disabilities, including women and girls, without opening the locked doors to all mental health facilities. There can be no full equality without respecting our physical and mental integrity, our right to be free from both sexual violence and psychiatric violence.
A crucial point of concern is the Council of Europe Additional Protocol to the Oviedo Convention for “the protection of human rights and dignity of persons with mental disorders with regard to involuntary placement and involuntary treatment”. As one can see already from the title, this protocol, if adopted, will instead of protecting our rights and dignity legitimize grave human rights violations, discrimination, and ill-treatment of persons with psychosocial disabilities. The protocol is a medical model-based instrument that runs counter to the CRPD by authorizing mental health detention and non-consensual psychiatric treatment. Adopting this protocol will certainly and deliberately leave us behind and we call on all human rights bodies and State parties to take action to stop the protocol from being adopted.
In the meantime, we should look to other regional mechanisms than Europe to be inspired. In particular, we congratulate the African Union on its adopted Disability Protocol to the African Charter on Human Rights. This protocol, unlike the draft Oviedo protocol, is aligning with the CRPD and the jurisprudence of the CRPD Committee in ensuring persons with disabilities on an equal basis with others the right to not be subjected to forced medical interventions. Thank you.
***
I also went to a side event of Human Rights Watch, on Persons with Disabilities in Prison: Challenges and Good Practice. There was a presentation of the report of Human Rights Watch on persons with disabilities in prison in Australia: “I needed help, instead I was punished” ( see https://www.hrw.org/news/2018/02/06/australia-prisoners-disabilities-neglected-abused )
It was a good session, with a good debate. (I really liked the answers of Human Rights Watch, they DO understand the new paradigm).
Now, I will describe some other informal parts of the COSP. The unpleasant part. This year, there was a certain situation of impasse between various groups of persons with psychosocial disabilities. We had all hoped we could solve this by meeting together, but eventually, we didn’t get to meet all together . There have been various loose conversations in the hallways. I didn’t manage to solve all the barriers.
During the day, I had some painful conversations with some persons. I will call them: person A and person B (just to be discrete). I am explaining this, because WNUSP has become fragile by this situation.
Person A used to support WNUSP as a professional assistant, but we came in an impasse for various reasons. I had a number of painful conversations with A. and I addressed my views and questions of some situations, e.g. about the meeting in Amsterdam to which I was not invited (which seemed like deliberate exclusion to me). Or on sharing draft reports with others instead of the persons consulted (something I personally find very unethical). We tried to solve the issues, but we didn’t reach a unified position. Further cooperation with his assistance seems impossible due to the multiple disagreements, with several people involved.
By now, as a result of the broken contact with A., WNUSP actually has no direct contacts or ongoing relations with funders anymore. It was all in the hands of person A., who now supports other groups. I can now see he worked FOR us and not WITH us. He took the knowledge with him. WNUSP will have to start new. I hope the other groups won’t have to go through this loss of network when person A. leaves them.
I also had a very painful conversation with person B. There is a pre-existing history of WNUSP, and some people have strong opinions on who should represent WNUSP, and who should not. There is criticism on WNUSP being run by “big ego’s” and “white people from the Global North”. For some time, B. doesn’t want to be associated in any way to WNUSP anymore, and mentioned “WNUSP should be dissolved and be replaced by another network”. It hurted me to hear this. I felt like there was nothing I could do to change this perception, since invitations by WNUSP are not appreciated. It made me very sad. It seems like we can cooperate in co-existence, if that works out.
The situation is very sad and sensitive. But it is a fact that WNUSP has a lot of support across the world, across regions. WNUSP will not be dissolved, but we will try to make it grow, and hopefully one day we can achieve unity and positivity again.
WNUSP must also become more independent (not depending on assistants who may hide the contacts with funders, or who transplant the networks based on their own vision. This doesn’t leave WNUSP empowered, but leaves us disempowered…. ). This is our reality we must face.
WNUSP board is composed on the basis of elections, and the organization has an impressive history, e.g. being involved in the drafting of the UN Convention on the Rights with Persons with Disabilities. WNUSP lacks financial resources and some technical capacities, but personally, I don’t feel like trusting another assistant again. I would like to increase the independence of the network now.
In my opinion, WNUSP is worth to invest time/energy/resources in. It is sad that the issue of representation is dividing the movement now (and actually this has been a longer debate, involving disagreements among past leaders and activists in WNUSP, which brought forth a very delicate and sensitive, even emotional situation for some). The situation is loaded by what happened in the past.
Since I have been elected to foster WNUSP, I will continue to try to foster WNUSP to my best abilities. I may not be perfect, and I may be white, and to some extent a bit privileged as well (although that could be a matter of perspective too, but globally yes). However, as co chair of WNUSP, I will keep on trying to fulfil the role that was entrusted to me. I will not support to dissolve WNUSP, but I will try to make it better, and I hope, one day, there will be unity and positivity again.
At this point in time, WNUSP appears to be under pressure, (and in my personal view, it seems to me that assistant A did a transplant of networks, in favour of B. and in disadvantage of WNUSP). Personally, I don’t want B. to dissolve her organization. But I also don’t want WNUSP to be dissolved. For now, it seems like the only way to move on in peace is by co-existing, and giving each other room in respect.
For a moment, it seemed that we were getting closer to each other at the COSP, but unfortunately, directly after the COSP, the situation with A. and B. and the respective networks and stakeholders climaxed and escalated on email. It will take time and efforts to see if we can achieve unity again in the future. For now, I think there is a difference of opinion, but I think we can work side by side with respect for each other.
So this is how I saw the situation at COSP.
It had been a tough day actually. I have been upset several times, and emotional. I couldn´t understand why we couldn´t work together, and why the negativity (we all try to do our best). I know I haven´t been at my best in the past months due to my personal situation, but I have been open about that, and I had hoped for support for maintaining WNUSP. There seems to be a really nasty part of WNUSP history involved here. We can only hope that the future will be better.
In the evening , I bought something to eat from a shop, and sat in a small park (which was merely a group of trees on the pavement actually). Then, spontaneously, a homeless guy started singing for me, and we talked. It was nice. We talked about the deeper meanings in life, and about ´careless society´. I was happy to connect from one human to another, without complications. It was exactly what I needed, and the homeless guy seemed to feel the same. Just being gentle and nice to each other. It was perfect. It gave me air.
Later that evening, I went in the direction of Times Square to meet Beate and Hege for a drink. We went to a bar, and I randomly ordered the ´seasonal shake´, which then appeared to be a rainbow/coloured milkshake(can you believe that!!!). It was a fabulous coincidence, and we had great fun together. I was happy to be able to unwind a bit after such a day.
It was past midnight when I reached my hotel, relatively late. I knew I had to get up at 6 again the next day.
*
On Thursday 14 June 2018 was the third and last day of the COSP,
At 8.15 I joined a side event on leaving no-one behind – How to include persons with intellectual disability. It was interesting.
During the day, again I met with A, but the situation didn´t change much. We were still on speaking terms though. (I´m not sure how the situation is now)
I had many other conversations during the day, and spent most of the time networking. I was less active in joining side-events. I met many inspiring people though, including people who would like to link up with WNUSP, so that made me feel a bit better.
It had been a tough COSP for me. But since I just had a hard time, and I am finally getting back on my feet again, I just refuse to be feeling broken again. I will do my best to build a better WNUSP, in which all voices can feel safe and included.
After the COSP, I had a nice Mexican dinner with Tina and Amba, and then a nice cup of coffee at the rooftop of a hotel. We had very inspiring conversations, about what we CAN do. It is important to look at what we CAN do, and not be defeated by the things we could not solve at this point. It remains a very sad conclusion, but I cannot make it nicer than it is. It is a very sad reality.
*
On Friday 15 June 2018, I checked out from the hotel around 9 AM, and made a quick walk around at Times Square and then went to JFK airport with the metro again, for a long flight back home, arriving the next day early morning.
Despite the existing challenges the COSP had been an inspiring event. And personally, I was happy to be there, surrounded by many positive activists, truly inspiring. It lifted me out of a dark time. Therefore I feel stronger, and back in action now.
But the broken relations are really sad. WNUSP needs to grow, and become what people expect from it. That is our challenge.
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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
