Paris conference on CRPD article 12 - Day 2

On Thursday 29 October 2015 was the second day of the 3 day international conference, 28-30 October 2015 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?”

It was again a long day and also very interesting. The conference had started at 9 AM, but I was a little late and arrived at 9.30, but I was told that they were also starting late and I had not missed a very substantial part, only the introduction.

The first speaker was Mr. Jean Paul Delevogue (president of the French Economic, Social and Environmental Council (CESE). He started by saying that the law should protect the weak and call for solidarity. In our current society we tend to reject differences, and we tend to see talking as a waste of time, and prefer to check files and over-rely on digitalization, while we actually need more face to face interaction. It is possible to reverse this, and to adapt the system to more listening, breaking down the barriers of isolation. Professionals have a role to play, and should be aware of new discoveries and changes in their discipline, and participate in a lifelong learning and training. People are trained to obey, and often fear rebellion, and this low self-esteem is a barrier in the dialogue. The inability to dialogue is a system effect, often leading to a trial of strengths at points of conflicting interest, and then rebels are treated bad. We need a new change, towards a mediation dialogue and restorative justice. The Berlin wall fell about 25 years ago, and now we build new walls? We lack hope, and instead are exploited by fear. New hope must emerge, and the positives of diversity needs to be readdressed. There are too much managers and not enough leaders. Dignity means respect for every individual that is part of the community of human species, and the tensions nowadays should not make us regress into barbarity. We have to defend the singularities and uniqueness of every individual. Instead of investing in procedures it is better to educate about human relations and to defend the values, individually and collectively. There are moments in history when the crowd prevails over the people in power. It is not easy to promote restorative justice, since many people are suspicious, and the society is concerned about their sense of individual fulfilment, and tends to see differences as disturbing. Now, for example, children are judged on their curriculum at schools, but it is needed to learn them to empathize with others, since we want quality of life and not only money-making. Many people nowadays face the question: What is the meaning of life? The human dimension is needed. Einstein already asked: Are we controlled by algorithms? The legal, medical and brain-studies robotize us. We need to discuss humanitarian issues, and not emphasize our differences, but our commonalities. We need to revive the lost value of solidarity.

The second speaker was Mrs. Marie Gaille (director of Research in Philosophy, SPHERE-CNRS, France) who spoke about the difficulties in wordings. She mentioned that the title of the conference is referring to “persons in vulnerable situations ”, which is not a clearly defined group. In the CRPD, disability is defined as an environmental barrier which prevents the person from equal enjoyment of rights. So disability is a situation, resulting from the impairment plus barriers. Article 12 has 3 objectives: to ensure legal capacity, to ensure support, and safeguards, such as respecting the persons preferences with no conflict of interest. Mrs. Marie Gaille emphasised that this means to support autonomy and to disassociate from dependency, and not to make a list of capabilities like Mr. Appelbaum suggested. Autonomy is about individual interrelating identity , and it is not the same as capacity nor rational capacity. It is needed to explore the limits, and yes, when somebody refuses care sometimes you cannot do anything. What is needed, is to make a support system without such a stigmatizing list or definition, and to explore the directions of supporting autonomy. Autonomy is a relation to the environment, and it is needed to focus on the supports system and not just focus on the person concerned, but focus on environmental change.

The next speaker was Mrs. Ingrid Maria (university lecturer in Private Law, Grenoble, France) who spoke about the enjoyment of rights of persons under French protective measures. She believed that under French laws all adult persons have legal personality, and therefore all have the right to fully enjoy rights, even when they are under protected status. This is the Euro-Latin doctrine of having rights in 2 degrees: to have rights, and to exercise/act. This is a binary division in law: inert law and active law. The exercise of subjective law is the so-called will. And the rights that are protected in law are the interests worthy of protection, in line with the purpose of the law: to enjoy rights. There is a distinction between the individual exercising free will and the individual interests and goals to be achieved. There is only 1 group that he law can really go against their will, which is young children with mental/intellectual impairments. Under French law it is always asked: is the distinction still legitimate?, and it was shocking to the French public that the CRPD Committee rejected this construction and said that no restriction of legal capacity is acceptable. The Human Rights Committee does allow for the ability to separate rights, and they say restrictions can be legal if reasonable. The French laws do not have legal inequalities to have rights, but only limits the right to act. Why would there be 2 sides of rights recognized, when they are treated the same. So she questioned the value of the CRPD Committee’s General Comment, and she claimed that the French laws are not so far from the goals of the Convention. It is a question of the rights of the adult versus the will of the adult, and protective measures are merely a cooperation measures. Respect for the rights of the person is at the heart of protection measures, and the protection needs to take into account the needs, the proportionality and subsidiarity of the measure, and the procedural rules and screenings, and there is the option to appeal, so the measure can always be reversed. So she claimed that the French do recognise the human rights of persons in vulnerable situations, and that persons benefit from the protective measures. According to Mrs. Ingrid Marie, “curatele” is an assistance measure and it is a cooperative measure, and “tutelle” is also allowing to support the person.

I could see that she was not happy with the criticism on the old-paradigm approach, and the call to abolish guardianship, a system which she just defended obviously. And it is true that the Human Rights Committee also still is in the old paradigm. It was interesting to see the responses in the room.

The first one to respond was Mr. Jean Francois Ravaud (Sociologist), who was on the panel of the session. He said that all fundamental rights are empty unless they are enforced and implemented. Of course there is a difference between state level and UN level, but rights are practices, and if not implemented, there is no right. There are studies on how to implement rights, and not so much goes via courts, but most rights are implemented via politics and policy making, which is a field with a lot of tensions and powers, and even the national human rights agencies have not been given enough power or resources to effectively defend the human rights of individuals and groups. The constant reforms and changes in the field also challenge the relations and positioning of the national human rights agency with the other partners in the field. The state focusses only on budgets and not on human rights.

Mr. Wayne Martin (philosopher, Essex Autonomy Project) also member of the panel, responded on Ingrid Marie’s presentation. He explained that we stand at a crossroads, with on the one side the French tradition with universal rights and restrictions in certain circumstances, and on the other hand the UN CRPD which says: no restriction of legal capacity and only support. The diversion is fundamental and we need to choose. It is a common cause to implement the UN standards, and the issues are not only affecting France, also the UK. According to the French laws persons only have a will when they can understand the cause and consequences, and if there is no such will, then the will cannot be followed. But philosophers say that a will means a determinate intention to act, which can have many routes. The will is the output of decision making capacity, and only if there is no output, the will cannot be followed.

Mrs. Liona Israel (sociologist, CME, EHESS) also member of the panel, mentioned that the recognition of legal capacity in a way confirms the paradigm of what is called “the politics of rights”, as an extended myth of rights in the actual absence of rights. She said that a non-unilateral approach, and differences in terminology make it harder to influence public policy. She also mentioned that personal choices are conditioned by society (for example suicide). Autonomy is linked to the ability to express oneself. Only a few social studies investigate the positions of people concerned.

Mrs. Ingrid Marie replied by saying that she was being optimistic when she said that the French laws comply with CRPD article 12, since the respect for the will and preferences is also mentioned in the national law. She said it was about the interpretation of the word “will”: What is a will? What is the manifestation of a will? Is it an ability? Or should it be an assumption that everyone has a will? How is it determined? By Appelbaum?

Mr. Gabor Gombos, (Ex-user, former member of the UN CRPD Committee and Adjunct Professor of Law, Galway and Nalsar University of Law), was then given the word, and he replied that the CRPD Committee will say that the French law is not compliant with the UN CRPD. He stressed that he was missing the voice of persons with disabilities themselves in the debate, especially those under curatele and tutele. It is a general principle to consult all people affected.
One question is: Can judges really listen and comprehend what the person says, because if they cannot hear the person, it will not change. Are people listening and interested in the positions of persons with disabilities? Generally the participation of persons with disabilities is not resourced, and professionals substitute us and represent us since they have more resources. And while the user movement is not getting proper resources, the state asks for more participation. Also national human rights agencies are an illusion when they are not properly resourced or lack any power. Then representation becomes symbolic. Is it a right to speak, or a right to be heard? Many persons in psychiatry are actually victims of abuse. And since criminals are presumed innocent till proven otherwise, why not assume that everyone is healthy, and acknowledge that a family can drive a person crazy. If researchers can listen to users, this can be a way forward.

Then it was lunch time, and we sat again with the organizers and other speakers in the cafeteria.
In the afternoon I went to the workshops which had simultaneous interpretation in English, because my French is terribly limited.

The first workshop (C1) was on “Legal reforms impacting capacity and incapacity: national and international prospects”.

First Volker Lipp (Professor of Civil Law, University of Gottingen) spoke about the situation in Germany, where until 1991 there was an old system of guardianship (interdiction, partial guardianship/ tutor and plenary guardianship/curator), where the person is deprived of legal capacity for so-called best interest, and the curator is free to do whatever. Since the reforms there is a new system, with the goal to maximize autonomy, and the measures should support and protect the rights of the person (not the public). Since 1992 there is a flexible instrument that takes into account necessity and proportion, and can be tailored to the need for support or protection, and contains procedural safeguards. It also includes the option for a personal representative by lasting power of attorney, and court appointed representatives. There is a special court for these instruments. The social laws provide support and the mental health laws “protect” the person and the public. The guardian has the duty to follow the will and preferences of the person concerned, and the court decides on the restrictions, such as restricting certain financial transactions (for example mobile phone contracts when bills are rising high) but the person is free to do everything else. Does this comply to article 12? What and how needs to improve? He once more emphasized that the guardianship-tool was a tool to represent and protect persons.

In response it was remarked that this tool to “represent people” takes decisions away from the person and legally leaves the person de facto incapable, which is not in line with human rights standards.

I also replied, and said that I felt like it was becoming a semantic game of words. It is suggested that guardianship respects the will of the person, but the person cannot get out of the guardianship regime, so in that regard the will and preferences of the person are not respected at all. And also the term protection is explained in very different ways. Dignity is an intrinsic experience, and you cannot force someone to experience dignity. In fact, being forced and not-respected when saying NO feels very unprotected and unfree. So what is the aim, is it the interests of someone else, or is it the rights of persons with disabilities? There is a huge difference between support and the protection measures.

The next speaker was Mrs. Elionoir Flynn (University Lecturer in Law , Centre for Disability Law and Policy, University of Galway) who explained that the meaning of CRPD article 12 is clarified by the CRPD Committee’s Concluding Observations on various countries, and in the CRPD Committee’s General Comment no.1 on article 12. These show that there needs to be a shift from substitute decision making to support. There is no country yet that complies. Under the definition of substitute decision making, it is not a violation to choose a Power of Attorney, but it IS a violation when the will of the person is not respected. There is a right to support, also in hard cases. And in the rarest cases, there is the “best interpretation of will and preferences”, which replaces the doctrine of so-called “best interest”, the latter is in human rights law only applied in the Convention on the Rights of the Child, and not for adults.
In Ireland a new Legal Capacity Law is being drafted. Guiding principles are: no more “best interest”-doctrines, and as much respect for the will and preferences of the person as practicable, the least restrictive approach possible, unwise decisions are allowed and participation in the intervention is preferred. Main types of decision making in the Irish law on Legal Capacity are:
- Assisted decision making agreement (but unfortunately the person needs to have mental capacity to agree to assisted decision making, which is a catch 22).
- Co-decision making agreements, which mean that the person can exercise free choice when there is a threshold for capacity, and co-decision makers can veto the decision in case there is harm to self or others.
- Decision making representative (first level of taking over).
- Powers of Attorney
- Advanced health care decisions
The decision support services register the agreements. Court decisions are needed on issues such as organ donation and end of life.

Many persons have no settled pattern of will, or have conflicting will or preferences over their life time, or sometimes people have no views on a certain subject. Do they all lack capacity? Many people would fail the competence test of functional capacity. The old system is dangerous. The competence-tests impose standards to the capacity of persons with psychosocial disabilities and the criteria overlap with the symptoms of psychosocial disabilities, which is discrimination in its nature. Not all people of the population are tested, only those with mental health problems, or intellectual disabilities, which are highly likely to fail the test, and then are excluded. And most people do not want to be tested at all. The concept of proxy-consent, as the best interpretation of the will and preferences of the person concerned, will give a push for doing research into who the person actually is.

The next speaker was Mr. Wayne Martin (Professor of Philosophy, University of Essex) who spoke about the UK. Legal capacity comprises the passive bearing of rights, and the active right to act. The scope of legal capacity is for all persons on all matters, although it is said that some persons lack decision making capacity also with support. Since the statutes steer the procedures, the article 12.4 safeguards were analysed to find out how to design a framework with the principles of respect with impaired decision making skills, and how to make the standards real practices. The article 12.4 safeguards helped establishing boundary conditions of the field and scope. For example the phrase “taking into account” the will of a person is not enough and doesn’t guarantee respect. And the new paradigm also brings ethical, philosophical and legal questions: If a caregiver goes along with the will of a person, he might omit his duty to aid, or have undue influence in the decision making. There is no guidance, and we have to look for a middle ground. The CRPD Committee is mandated to give an interpretation, but does not give a real solution, which needs to developed. Personal testimonies need to be taken into account. The will of a person is not abstract. There are relevant lessons to be learned.

Mrs. Alexandra Tasiaux (Professor of Law, University of Namur) spoke about the Belgian law to “protect” vulnerable persons (2014), which is a law with a single “protection” system. All adult persons are assumed capable, and a judge can list the issues on which a person is capable or not. She mentioned “if a person has too much freedom, then we may not be able to protect them” , and she stressed that the Belgian law aims for balance between self-determination and protection.
(This was very much in the old paradigm, just like the Netherlands unfortunately)

I asked Mrs. Alexandra Tasiaux how this relates to the fact that Belgium has the highest number of forced psychiatric hospital beds and the highest number of forced psychiatric treatments in Europe? She answered that many things were not yet well-arranged in Belgian practices. (that doesn’t sound like a good practice to me).

The last speaker of the session was Mr. Gilles Raoul-Cormeil (University Lecturer in law, University of Caen Basse-Normandie) who closed the session by a very short reflection on the French situation. There is duality between what the person wants and what is in the person’s best interest. The French guardianship laws are not based on status, but on capacity assessment, and they provide assistance and support, he claimed. “The guardianship system is to ensure that the person’s will is in line with the person’s interests”. There are safeguards in place to define the scope of control, which is decided on by a judge.
(It wasn’t hard to see that this French guardianship system is also still reflecting the old paradigm of substitute decision making).

Someone asked: How to protect someone’s interest? Are we asking the right questions, if we listen to persons with disabilities?

Then, after the coffee break at 4 PM I joined the next workshop (A2) with simultaneous interpretation provided by Stephanie and her colleague. They did a really great job, although the devices were really torturous in my ears. Without them it wouldn’t have been possible for me to participate meaningfully at this event.

The first speaker woke me up again. It was Mr. Thierry Najman (Psychiatrist, Psychiatric Hospital of Moiselles). He explained that an innovative practices is going against what seems evident to others, and not everyone may always agree to taking new ‘risks’. But nevertheless, Mr Najman unlocked the doors of the psychiatric hospital, as an innovative practice. In the 1970s and 1980s the institutions started opening up, which was the dis-alienist period. Then in the 1990s, the Decade of the Brain, a wave of re-institutionalization happened, and the so-called “logic of security” placed everyone behind locked doors, even 80% of the voluntary patients in France are in locked wards. Up to now we are in the neo-alienist period. The testimonies of persons subjected are serious. Using coercion and force in health care is a paradox and triggers questions. What is needed is equality and trust and bonds. So Mr. Najman unlocked the doors of the psychiatric hospital, and studied the effects. He found that there are not more accidents, and not more people were running away, actually less people ran away. He spoke about deconstructing stigma and moving to the social model with a focus on human relations. The medical models that are taught in school are wrong, and this false science has severe consequences. For human relations it is necessary to unlock the doors. Closed doors are detrimental to safety, and legally, opening the doors embodies a greater respect to the rights, laws and human rights conventions. Mr. Najman has written a book about his practice.

I really liked his presentation, and I would like to visit that psychiatric hospital to see it with my own eyes. With my organization Mind Rights in the Netherlands (http://www.mindrights.nl ) I am also advocating to unlock the doors. I found this presentation very interesting.

Then Mr. Maths Jesperson (Founder and Board member PO Skane, Sweden) presented his initiative of the Personal Ombudsman, which is a concrete example of supported decision making, and shows that supported decision making is possible, also in the most severe cases. He said “it used to be an innovative practice, but now it is all over Sweden”. The CRPD moves from the medical to the social model, and focusses on environment relations. The Personal Ombudsman System is a support system developed on the basis of experiences. Support needs to be 100% on our side. The Personal Ombudsman was created during the Swedish law reform, and Maths noticed that supports persons were missing in the system. So the Personal Ombudsman was created to help people to find what they need and want. Principles for practice were defined, and various models of the PO were tested. Eventually it appeared that the peer run model, run by persons with lived experience of mental health problems, were clearly by far the most successful. Now, 15 years later, there are 310 Personal Ombudsmen in Sweden, helping 6000 individuals. The PO is only focussing on the client, and is not part of psychiatry, social care, authorities or family. The PO only does what the client wants, and sometimes has to wait until the wishes are clear. The PO provides a long term support relation, and has to be flexible and creative in reaching out to the most difficult cases, such as for example person who barricade their doors (it can take weeks to establish contact). The POs don’t have a 9-5 schedule, but are available 24/7 on the basis of 40 hours a week. The PO has no office, since that looks like power. The PO focusses on supports relations and meeting face to face. The PO tries to start contact, develop communication, establish a relation, create dialogue and provide practical guidance. The PO can deal with all matters, practical or existential, and is not segmented. The PO has no formal application procedure, otherwise the most vulnerable persons could be excluded, and the client remains anonymous for the authorities. Also the PO keeps no records, and the papers are given to the client. A video about the Personal Ombudsman System in Sweden can be found here: https://www.youtube.com/watch?v=xqma4wK8sC0

The final speaker was Mrs. Marie Gautier (FEGAPEI-Ajupid), who spoke about “encouraging practices” for access to justice for persons with intellectual disabilities. They have compared the practices in 5 countries and found major differences. They have also identified several so-called encouraging practices, and they made a handbook with these encouraging practices, which can be found here: http://www.ajupid.eu . One of these promising, encouraging practices is the system of “Support Circles” , where the person is centred, and surrounded by others to help with discussion and decision making. Also the lasting Power of Attorney can help, and in some countries NGOs can be contracted for delegating the power, to prevent guardianship. The barriers for exercising legal capacity are not only on the side of the professional, but also on the side of the person self, who may not be aware of his rights. Giving information on rights is very important.

There was only a little bit of time left for discussion. Issues were: How to duplicate the inspiring practices such as the unlocked doors, the PO and the Encouraging Practices? It was said that we need Do-ers and not only Likers.
Mr. Nayman once more took the floor, and summarized: we need to take time to talk. The fundamental rights may be abstract, but we need to take ownership of the concepts. Denying the UN CRPD and the General Comment is depressing. It is good to open doors. The solutions to the difficult questions may emerge from the parameters found by focussing on human bonds. And as a closing remark, Mr Najman firmly stated: “The CPT reports show terrible practices in French psychiatric institutions. And the causes of the mess are not dealt with. If checklists and forms are the future, then I say NO”.

It had been a very long and interesting day again. I was happy with the progressive approaches by several speakers, which showed that there is willingness at various levels to make a fundamental change , away from the medicalized protective incapacity approach by guardianship and substitute decision making, towards supportive practices with respect for the freedom and rights of the person.
I also found it positive that during the conference anything could be said, and neither the old or new paradigm was taboo. Every opinion was treated with respect, which gave the audience the possibility to weigh the information themselves. And in my opinion, the programme was well-balanced, and I think the new paradigm was no longer a minority position at this conference. Nevertheless, I am also aware that the audience of this conference was already interested in the CRPD when they registered for this conference, so the balance in opinions at the conference does not reflect the national French picture. The debate was still quite intense, and it was obvious that several speakers still have a firm belief in the old-paradigm-approach. So the work is not done yet. There is no guarantee for change yet, “we need Do-ers, not only Likers”.

After the conference we, the (ex) users/survivors, went to a very nice Algerian restaurant, where we had a very nice dinner together with several members of the French user movement Advocacy France. Unfortunately there was a language barrier between the French and English speakers, making it difficult to really exchange views together. But we had a very nice time.
It was again late when I returned to my hotel, and I decided to only prepare my presentation for the next day, and then try to catch up with some sleep. But I had only several hours left before I had to get up, so again, I had only a short night of sleep.