Paris conference on CRPD article 12 - Day 3

On Friday 30 October 2015 was the third and final day of the 3 day international conference at INALCO University in Paris, with the long title: “Guaranteeing persons in vulnerable situation the capacity to enjoy and exercise their civil and political rights / The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) – focus on article 12: A legal turning point in care and support relationships?”

The conference had started at 9 AM, but again I arrived later, after having found my way in the French metro-system, and the numerous exits (I couldn’t find the same route twice).

I joined the workshop with simultaneous interpretation (C3) on “the enforcement of fundamental rights: the role of the judge, activists and the state”. I had missed the first speaker.

When I walked in I heard the speaker Mr. Gilles Devers (Attorney registered with the Lyon bar) explain that lawyers can only use French laws in court, and they cannot apply the UN Convention on the Rights of Persons with Disabilities directly, unless the content is more specific, without ambiguity and forms no addition to existing laws and existing court case precedents. For article 12 this is not the case, since it invokes a paradigm change. So what is needed is a French law to make article 12 applicable.

The next speaker was Mrs. Emmanuelle Fillion (University lecturer in sociology, MSSH-EHESP) who spoke about the role of activists and NGOs as key promotors of change. The Disability Movement started around the 1980s, following the civil rights movement in the 1970s. Persons with disabilities started to advocate for their rights, promoting alternative concepts and demanding self-representation. This gave rise to emancipatory research, and Disability Studies were created as a specialism by the end of the 1990s. The French are late. There is no university chair for Disability Studies in France.

Mrs. Ailbhe Finn (Human rights officer, Mental Health Europe) was the next speaker. She explained that Mental Health Europe (MHE) has a diversity of members (service providers, family organizations and organizations of persons with psychosocial disabilities), and has to deal with a diversity of opinions. Sometimes there is slow progress in bringing stakeholders together, and sometimes positions have to be compromised. But there are common grounds. Also psychiatric care providers want to move from substitution to support, and speak out against the medicalization of mental health, and emphasize the lack of biological markers for diagnosis. The ”best-interest”-approach has failed. The right to make choices is key to prevent human rights violations. The discussions on substitute decision making generally move immediately to the most serious cases, but one has to remember that these hard cases are not the rule, and we need to slow down and change the mind-set, eliminate stigma, and provide more real support, like the Personal Ombudsman in Sweden. The UN CRPD Committee has issued Concluding Observations on the European Union, in September 2015, which emphasise the need to foster the exchange of data and good practices. Instead of focussing on the hard cases, we should worry about why the required change is still not happening, and how judges and care providers can be sensitized.

Mr. Antoine Bosquet (Hospital Practitioner, AP-HP, Hopital Louis Mourier) spoke about the right to vote and the assessment of voting capacity. Mr. Antoine Bosquet referred to Mr. Appelbaum’s questionnaire in the Capacity Assessment Tool for Voting (CAT-V) , which contains a set of simple questions: Can you understand the voting procedure? Can you express your choice? Which arguments did you use? Can you reason why this is your choice? This Capacity Assessment Test for Voting is strongly criticized, because violates the right to confidentiality and secrecy of voting. Additionally, statistic research shows that 92% of persons with psychosocial disabilities do not pass this test, resulting in their exclusion from the right to vote. And the capacity test is discriminatorily applied to persons with a certain health status, not all persons are tested (if all persons were tested, probably a lot of persons without diagnosis would fail too). So the norm should be: Supporting everyone to vote, and eliminate barriers, eliminate personnel shortages, maybe using technologies and getting the registrations to vote, which is better than the capacity assessment for exclusion.

Again there were critical questions from the guardians, claiming that guardianship gives people more capacity, and that the society is not ready to put individual rights above the interests of the state, for example : when tax files are submitted too late, this can have terrible consequences, and these files really need to be done in time. In response it was remarked that when you take over all the responsibilities, for sure the person does not learn how to deal with that.

Then after the coffee break, at 11 AM the second workshop (A4) started. Title: “The use of compulsion, intervening in other people’s lives and the risk of abuse”.

The first speaker was Mr. Baptiste Brossard (Doctor in sociology, University of Montreal – University Chair in psychosocial disabilities and substitute decision-making CNSA-ENS-EHESP).
To be honest, I was quite shocked by the title of his discipline, and I expected an old-paradigm approach.
Mr. Baptiste Brossard spoke about the variety of daily tasks that nurses in elderly homes perform: emotional work (not stressing, but smiling during the work), non-verbal deductions (detecting needs), adapting to personal daily rituals (tailored approach), taking into account the past of the person when interpreting behaviour (past occupations may clarify certain habits), and use some skills and knowledge to speed up productivity (making jokes to make people move faster). He then claimed that “paying respect to someone may also mean that you have to lie to a person just to alleviate the suffering , for example by saying that the daughter will come to visit soon, while this is not the case”. Obviously , this remark caused quite some discussion in the room, and many seemed to find it unacceptable to lie to elderly people. The speaker defended himself by saying that the issue of lying and jokes should not be taken too serious.

This was quite a distasteful presentation in my opinion, and I wasn’t the only one who felt like that.

Then Mrs. Alice Casagrande (director of training FEHAP) presented a model for identifying abuse and mistreatment, which is called “the Constellation of Abuse”. This model recognizes 6 main categories of abuse: targeted abuse, institutional abuse, professional abuse, domestic abuse, unethical practices and social exclusion and stigma.
Mr. Claude Ethuin (user-expert, Advocacy France) then continued by giving numerous examples of persons with psychosocial disabilities who are exposed to various forms of abuse and mistreatment. Illustrating stigma, exclusion, a widespread lack of support in the community, physical health problems as “side-effects”, discharge without support, the list went on and on. The reality is that person with psychosocial problems are human beings, and that many are abused. These persons are vulnerable and need support, not substitute decision making. Mr. Claude Ethuin also mentioned that practical support is needed. Such as helping a person go shopping, because the stigma on the streets can be so big, and people can be scared of persons with psychosocial problems, which makes the person vulnerable in many ways. This was a powerful presentation.

Mr. Cyril Hanzif-Thomas (psychiatrist specialized in geriatrics and chair of ethics committee, Regional University Hospital of Brest) then repeated once more that we are facing ethical dilemmas in the context of coercion and care. He illustrated the dilemma by giving an example of restraining an old man to prevent self-mutilation, which clearly shows the huge difference between the “logic of the care-provider” (restraining is a cheap and easy way to prevent self-mutilation) and the “logic of the patient” (restraining aggravates the suffering ). This brings up the ethical question: What is worse? Being restrained or self-harming? Clearly, without support, there is no care. Psychiatric care providers too often act like technicians, practicing procedures. The so-called “logic of care” seems to prevail over all other logic. We need to return to the “logic of freedom and choice”.
The CRPD brings a change, it is a historical moment, and also a philosophical moment, since we cannot follow all choices always, and what about the obligation to care? How to put the knowledge together and in which hierarchy?

A remark was made: We are spending 2,5 days on the tensions in the paradox between care and consent. Aiming for zero risks is just not helpful.

The last speaker of the session was Mr. Peter Bartlett (professor of law, Nottingham University) who spoke about the links between CRPD article 12 (legal capacity) and CRPD article 14 (liberty). When capacity becomes a reason for exclusion, it is discrimination. Article 14 states that there can be no disability based deprivation of liberty. This means that the current wide-spread mental health legislation which is based on presumed dangerousness and need for treatment is not in line with the CRPD. Non-consensual treatments need to be prohibited, which also links to other articles of the CRPD (15, 16, 17, 19, 25). This will be a big work to implement.
The UK is not the only country that tries to “size down” the meaning of the UN CRPD in an attempt to claim compliance, as if only the margins and edges need some improvement, and as if human rights violations only happen in other countries. It is obvious that persons with psychosocial disabilities cannot enjoy rights equally to other persons, and significant change is needed. No more business as usual. Terrible situations in the UK, which should have been a national scandal, were not even reported in the media. There is a large systemic error. We have to get real. Mr. Bartlett mentioned that after 30 years of conferences, it was absolutely clear that the criteria for deprivation of liberty in mental health care are not good. There is no proof of its claimed benefits, and it results in overprotection. So we need to design new services, and find out together how to do it.

A remark was made in response, saying that the world is facing a historical moment, and it is needed to try to follow the users accurately. The UK is not a good example.

After the lunch break, at 2 PM the plenary sessions started again in the big auditorium. I was a speaker in the Roundtable Discussion of representatives of users, families and institutions. There were 2 other speakers before me.

First Mrs. Marie-Helene Isern-Real (attorney, member or the Scientific Committee of the International Federation of Elderly Persons Associations, FIAPA) spoke about the rights of elderly people. In her opinion, the CRPD is not suitable for the needs of elderly people, and her organization was advocating for a specific UN convention on the rights of elderly people. “Aging is not a disability” she said. And also according to the World Health Organization “aging is not an illness”. Aging is just a change of a person’s condition in life, which for example brings more dependency and higher financial costs for health care, and more vulnerability to fraudulently commercial sales activities etcetera. She suggested that a system of pre-financing support could be installed, to ensure that all older people can have access to supportive services for their practical needs as they are getting older.

(To me it was clear that the word disability had caused a big misunderstanding here, which is rather unfortunate. In my opinion, elderly people also face barriers in the enjoyment of their rights, and the specific needs of elderly people can also be approached from the disability-perspective, implying a focus on support, and a shift away from testing, categorizing and excluding people).
Anyway, the programme went on without stopping for question.

Mrs. Brigitte Lamarre (Board member of the French National Union of Family Associations, UNAF) first shared her personal experiences of her son with physical disabilities, and how hard it had been to find a house for him where he could live with his friends independently. The amount of barriers is enormous, such as the practical challenges to find a rental house that is accessible, and the arrangement of personal support, and then the financing, and dealing with the stigmatizing attitudes and expectations of individualsm and autonomy. It is also about taking risks. Family can be overprotective, or sometimes just have another opinion. And family can be limited, such as by fear or ignorance. But family can also be capable of understanding and serve as a mediator. The family is close, but also needs help, because they don’t have all the solutions.

Then it was my turn, Jolijn Santegoeds (Founder/Chair of Mind Rights, Co-chair of the World Network of Users and Survivors of Psychiatry WNUSP, and Board member of the European Network of (Ex) Users and Survivors of Psychiatry ENUSP). I spoke about the “Eindhoven Model” of using Family Group Conferencing for supported decision making to avoid forced psychiatric interventions. I explained that I had developed this model in the context of the Dutch law reform on forced treatments, as a counter-proposal. Family Group Conferencing gives people the chance to consult with their own people of their own choice, voluntary, to identify desirable solutions to prevent, overcome or live through a crisis situation together. They make a plan together themselves. The plan can combine formal and informal care. This provides an alternative to the procedures for unwanted forced interventions. Persons have the right to make their own plan first. The concept of Family Group Conferencing originated in child care services in New Zealand. By Family Group Conferencing people can keep ownership over their own lives, and it empowers people and communities as a whole, which brings us closer to the world we want to see.
The full text of my presentation with a more detailed description of the Eindhoven Model can be found at: http://punkertje.waarbenjij.nu/reisverslag/4567654/presentation-text-on-eindhoven-model-cosp

There were no questions on my presentation (and I guess most persons were numb and tired after the intense programme of the past days).

The last speaker of the session was Mr Juan Canneva (honorary chairman UNAFAM). He expressed firmly that he did not understand why France has ratified the UN CRPD, which was in his opinion missing balance. He stressed that families already face many situations where they are getting no support at all when they are concerned about a family member with mental health problems. He stated that the CRPD must be a judicial error and needs to be revised. He claimed that new forms of care and drugs will bring relief, but that the need for support is linked to the psychiatric pathology. He asked: What is justice? He referred to the case of the pilot of Lufthansa, and stated that the justice system needs courage to defend the rights of the population against the liberty of individuals.

Again there was not much response from the room, which may have had various reasons.

When I came down from the stage after this session, Mrs. Amita Dhanda congratulated me, and gave me a very nice little present. She said “the teacher is giving prizes, and you got the prize”. That was really so nice! It was a sweet hand crafted animal. And it made me feel very proud, with a big smile :)

Then there was a change in the programme, because Mr. Appelbaum couldn’t stay much longer, so the session with feedback from international guests was advanced as a next item. Mr. Appelbaum, Mrs. Amita Dhanda and Mr. Gabor Gombos were invited on stage to share their feedback on the conference.

Mr. Appelbaum (professor of psychiatry, Columbia University, New York, USA) was the first to speak, and said that he was aware of the CRPD, but had not focussed on it in his work, which was maybe naïve. He elaborated on several things that had struck him in the past days. He mentioned the issue of discrimination. He had always thought that discrimination means to treat someone differently for irrelevant reasons, but according to him the issue of mental capacity is not irrelevant for decision-making. As a second point, he mentioned that in his opinion the General Comment on article 12 was not realistic, and just “one side of the story”. It is needed to experiment before implementing changes, and there are always unexpected consequences attached to any change, which needs to be dealt with. As a third point he was concerned about reality, referring to people who are paranoid, suicidal or at starvation by dementia. He felt he could not just wander off from these situations. He said he had not heard a solution here, stating “nobody knows what supported decision making looks like”. (I coughed very loud on purpose, as a statement. It was obvious that Mr. Appelbaum had not paid any attention to the conference and the variety of good practices that had been presented, such as Personal Ombudsman, Family Group Conferencing, Supports Circles, extended personal support in decision making processes etcetera . – Note that Family Group Conferencing was a top 4 winner of the Scotland Dementia Awards in 2013 for Best Community Support Initiative). Anyway, Mr. Appelbaum finalized his feedback by saying that under criminal law, if disorder based detention is banned, this will mean that persons will be transferred from hospitals to prisons. He said he would watch it, and wished us a good outcome.

Then Mrs Amita Dhanda (Professor of Law, Nalsar University of Law, Hyderabad, India) gave her feedback on the conference. She explained that she understands the apprehensions. All voices need to be heard on how to deal with people in distress. The old laws were made without the involvement of persons with psychosocial disabilities or intellectual disabilities. So that clarifies why it is not so simple to progress now.
The jurisprudence of “incompetence” leads to exclusion of persons who need help, and installs the believe that they cannot help themselves. She emphasized that the CRPD is drafted from a multidisciplinary view, and recognizes the universality of legal capacity and accessibility. The CRPD does not say “now we stop caring and neglect everyone to death”. It is about supporting persons to live life as full as possible. If reaching out is needed, then this should happen. The support that persons with disabilities need, is as much needed by all people, gradually, for example when aging.
Any change is perceived as a risk to what we are familiar with. We need to evaluate the reality.

Mr. Gabor Gombos Ex-user and former member of the UN CRPD Committee, and Adjunct Professor of Law, Galway and Nalsar University of Law) was the third international guest to share his views. He mentioned that he still had some concerns, but also the opposite. He was happy to hear a young psychiatrist say that locked wards are no good. And to hear the remark: “if the future is forms and checklists, this is no good”. Years ago it was not accepted when someone said that unconsented treatment is torture. The system of human rights has no enforcement. Human rights are about humanity, and the laws should facilitate that. There are many perspectives to the discourse. 20 years ago, persons with disabilities raised these issues, and now all of you are talking about it, in a mainstream forum, not a users-only event, which gives reasons for optimism. It shows that human rights do have power. Further, it seems that professionals are not unified on the assessment of mental capacities. For example, in Sweden there is no limitation of the right to vote based on mental capacity, and this appears to be no problem there, so why is it at other places perceived as such a problem: that is because it is a social, economic and political construct. A similar intense, emotional discussion took place at the negotiation of the Convention on the Rights of Persons with Disabilities, and now the same discussion is happening at the national level. This shows that the discourse IS taking place. The CRPD has already changed France, and now we are to deal with the practicalities.

Again, (as usual) Mr. Gabor Gombos’ contribution was very inspiring.

Mr. Appelbaum had already left the conference, and it was as if the discussion had also left the building. There were no further questions for Mr Gabor Gombos or Mrs. Amita Dhanda.

After this session a start was made with the feedback from the workshops. I heard the first bit.
Mr. Christian Laval expressed that he was thrilled by this socio-historic moment. He summarized that Europe changed after the World War, and the USA changed by the civil rights movement. We have a long road ahead to change the legal system. It is understandable that persons can be so angry after all they have been put through. There are clearly 2 sides of the story, the one wants freedom and the other wants protection. Unfortunately France is not like the USA where they have a lot of self-help groups to support persons in getting more autonomous. It is a challenge to go from anger to discussing solutions. It is important to go further in discussions and to learn to go beyond what we know and learn to understand how to move forward. It should not turn into a power-play, but we have to find new ways to design the laws, and maybe we can be inspired by Mental Health Europe on how to find each other in the paradigm shift. In France there is a culture of protection, which is not in line with the UN CRPD. Article 12 can help us to head in the right direction and it could constitute our future.

The session was interrupted by the afternoon coffee break.
I had to leave right after the coffee break, and so I missed the end of the conference. I really regretted that, and I wished that I could have stayed, because it was really very interesting. But I had to go to Brussels to represent ENUSP at the EDF board meeting, which was important too. It was a pity that I hadn’t had more time to spend with Stephanie, my colleague from ENUSP. But we will meet again in December in Brussels at the ENUSP Empowerment Seminar. I am looking forward to that!

I am looking back at the conference in Paris with positive feelings. I found it a progressive and constructive conference. In the Netherlands I am trying to convince a group of ‘thinkers’ from the mental health care field on organizing a similar debate (these Dutch people are inspired by the deinstitutionalization in Trieste Italy, and want to trigger a debate about values in psychiatry, but they seem hesitant to speak about the UN CRPD, which is still not ratified by the Netherlands). So coming from that Dutch perspective, I was really impressed to see this conference happening in Paris, and I was proud to be part of it.
It is really important to discuss the issues that arise from the CRPD with such a diversity of stakeholders with the aim to identify a way forward. And the conference programme was well-balanced, giving room to all views, and freedom of opinion, which creates the climate for constructive discussions, and the freedom to generate an own opinion. I think that most persons became more aware of the spirit of the UN Convention on the Rights of Persons with Disabilities, and I think that many people became more devoted to the realization of the new paradigm where support is key. I had the feeling that this conference was somehow a milestone, a start of further developments. So I left Paris with a lot of inspiring and positive feelings.

Then I went to Gare du Nord in Paris and took the Thalys train to Brussels. I was quite exhausted after a week full of international meetings, and I was glad to find myself in a 4 star hotel at a reasonable time, where I had a good night of sleep.

The next day, Halloween-day, I joined the Board meeting of the European Disability Forum (EDF). The first day of this 2-day EDF Board meeting caused some frustrations on my side, mainly because the representative of the European Commission constantly claims that the EC (EU) has “no power to act” on the terrible and widespread human rights violations on persons with psychosocial disabilities. It made me really depressed, and I asked myself why I was still participating in the follow up of the EU-review by the UN CRPD Committee, when there is no room for improvement. It was really depressing. This was my Halloween-horror.
But I am still having good relations with EDF. (after all, it is not their fault that the EU is soo …….)

On Sunday 1 November 2015, after the second part of the EDF Board meeting, I travelled back home, to Eindhoven the Netherlands. It was a truly exhausting week, but it was also a great experience.