FULL report of Day 2 of the PANUSP conference

Here is the full report of Day 2 of the PANUSP work conference. If there are any remarks or mistakes in it, I would like to know, please email to: tekeertegendeisoleer@hotmail.com

The second day of the PANUSP conference, 14 October 2011, started at 9.00 am again. First Heléne Combrinck gave a short overview of what was discussed yesterday, and gave a preview of today’s topics.
Yesterday we had explored the Convention on the Rights of Persons with Disabilities, looked into different rights and how it can be used, and we have also matched it to the concerns. Today we will see what we can do, what are the options, we will develop strategies and look into mechanisms and advocacy. At the end of the conference we want to have an Action Plan for PANUSP that is workable regarding resources and circumstances.

At 9.10 there was a block about Mental Health Legislation in Africa, facilitated by Allison Hillman and Gabor Gombos.
First we will gather some more insights in Mental Health law reforms in Africa, by presentations from various participants, and then Gabor will tell some more on the common background.

Dan Taylor gave a presentation on Mental Health Law reform in Ghana. In 1888 the British brought the Lunatic Asylum Act to Ghana, and under that law the persons with mental problems were arrested and treated like prisoners. In 1906 the Mental Health hospital in Accra was built as an asylum to house people with psychosocial disabilities with prison wardens in charge. In 1972 the Mental Health Decree passed, and in 1996 attempts were made to amend this law. In 2004 the Mental Health Bill was drafted, and completed in 2006. This bill is currently waiting for discussion in Parliament. The Mental Health Bill is said to have a human rights-approach in accordance with international agreements for mental health care needs, and contains provisions for proper treatment, privacy and autonomy, confidentiality, information, free movement etc. However, the bill will enable police assistance in situations where mentally ill persons are let loose on the streets and communities. Involuntary treatment will still be possible, so the human rights-approach is questionable.
There will be a Mental Health Authority to promote humane care including treatment and rehabilitation, and a Mental Health Review Tribunal for reviewing complaints and appeals against involuntary treatments, having the power to direct discharge of people who are detained under the Act. There will also be a Visiting Committee for inspection of the institutions. Mental Health Service will operate independent of the Ghana Health Service, and will get 8% of the overall Health Care budget. Seclusion and restraints need to be monitored under this bill.

The second presentation came from Mwape Mulubwa from Zambia. In Zambia, mental health care is arranged in the current Mental Disorders Act from 1951, which advocates for detention in institutions, such as asylums and prisons. The Mental Disorders Act is more a human rights violator than a protector for the human rights of persons with psychosocial disabilities, and also uses derogatory words like imbeciles and idiots. There is only one mental health hospital in Zambia, so especially in rural areas this is out of reach. Also there is an absence of organized community based mental health care. So most of the population goes to traditional and faith healers.
MHUNZA, the user organization of Zambia, was involved and consulted in the mental health law reform. In 2010, the Mental Health Bill adopted a human rights approach in line with the UN CRPD, and this has been sent to line ministries for comments, before it goes to the Ministry of Justice for drafting. The last week of October MHUNZA is engaging the drafts men with the aim of lobbying them to speed up the process of drafting so that it can be taken to parliament for discussion in parliament. Parliamentarians have been engaged already through a one day workshop for parliamentarians on the need for a new mental health law with a human rights approach, in order to stimulate a positive outcome of the debate on the draft law in parliament.

Then Daniel Iga from Uganda told us about the mental health law in his country. Uganda has a very old Mental Health law, dating from 1938, and revised in 1964, with unfriendly words like lunatics, imbeciles and so on to describe people with mental illness. It is non-Human Right-compliant. Especially user involvement, active participation or consulting is not in the law, which is concerning. This old law is promoting guardianship, and has a medical-model-approach. The life after institutionalization is not addressed. This law is so old, that in 2008 a Mental Health Policy was made, which is used by mental health services, but that policy is not legally binding.
There is a need to reform the mental health law. The Mental Health Department is currently reviewing this law and drafting a new bill, and has put in place a drafting committee in which the user movement is involved by selected representatives. The title has been changed from Treatment Act to Mental Health Act, and respectful language is now used that promotes dignity of users. The law is being made CRPD-compliant, instead of MI principles (which are WHO guidelines from the 90s, and which are outdated since the entry into force of CRPD). The new law comprises a holistic approach and multidisciplinary mental health care including the role of peer support groups. Also rehabilitation and reintegration into the community after the mental hospital is now being addressed.

Also representatives from Tanzania and Malawi gave their responses.

Tanzania has ratified the UNCRPD in 2009. In 2006 a Mental Health Act was drafted, and in 2008 the Mental Health law passed, but the civil society was not involved, only one person from an NGO. The review by Disabled Persons Organizations was also not involved, but however they are a bit satisfied with the substance of the law, because it is in common with the UNCRPD. The fact is that if the doctor says you are not okay, then you are not allowed to participate, and the officials do not understand that mental health is not static but dynamic. Also there is a problem of regulations mandate, which is government-driven and doesn’t function well. Mental health gets over 1% of the health budget, of which most goes to psychiatric drugs, only available in the hospitals, at a big distance of most homes.

Action Amos gave a short reflection on the situation in Malawi, where they are still running on the Mental health Act from 1948. The situation is like Uganda, which was also a British colony in the past. In 2000 there has been made a Mental Health policy that expired in 2009. In 2004 a new Mental Health draft Bill was made, but it hasn’t moved since then. This bill is government-driven and there is no user involvement. In 2010 the mental health users and carers organized a movement, and had persons from Kenya, Uganda and Zambia over for a visit.

Allison Hillman concluded that all countries have a separate Act for Persons with Disabilities and a separate Mental Health Act…

After the tea break, at 11.00, Allison Hillman was supposed to give an introduction to article 29, the right to vote, but first we had some more discussion on law reforms.

Gabor Gombor lead this discussion.
Law reforms are on the agenda in every country, and governments are trying to bring their laws in line with the UNCRPD. But what does compliance with the UNCRPD mean.

Article 12, Legal Capacity, is the key article of the Convention. Several people may say that legal capacity is not identified as a prior issue, but it is the major issue. Users need to be seen as equal human beings in order to have equal human rights.
When persons with mental illness are taken to a psychiatric hospital, they almost automatically lose their rights. They are treated involuntary, meaning against their will, and “without informed consent” (art. 25), which is a violation of human rights, as is put in the UNCRPD. Also voluntary treatment without information means there is no informed consent, or when users are given no option to chose (only the “choice” to agree). You could simply ask yourself: what happens when I say NO.
Article 12 (legal capacity) is closely related to article 25 (informed consent). And informed consent can only be given by the person him/herself, so that means that no guardian, spouse or friends can decide for another person, because that is not what is meant by informed consent. Also article 14, right to liberty implies that a person cannot be forced into any facility, including psychiatric hospitals, or outpatient services.
So far there is not any government that really understands that the existence of a disability can never justify to take away someone’s rights. Most government think they are compliant because they take away those rights not only or solely on the basis of a disability, but they also include other criteria, such as dangerousness, lack of capacity, but those are often all disability criteria.
The CRPD committee is very clear on this, that using those disability-linked criteria is not compliant with the CRPD standards. Any disability based deprivation of liberty, or even is disability is a factor, this is a violation of the CRPD. Disability cannot be mentioned or linked, or play a role in judging. It should be only the criteria of danger (disability-neutral). Governments need to be made aware of this interpretation. There is no law in the world that is compliant (yet), so there is no answer yet.
So what the UNCRPD means in terms of positive rights is yet unknown, so far only the negative rights have been addressed (that means what can NOT be done for compliance). So reforming laws by copy-pasting what progressive and advanced countries do is not the way to go.

Also, explanation is needed on article 14, right to liberty and security of the person and 17, physical and mental integrity of the person.
Involuntary treatments are prohibited mainly on the basis of article 17, integrity, rather than article 14, liberty.
Article 17, integrity, is an offspring of the anti-torture framework, and torture and ill treatment are absolutely forbidden: every person has the right to integrity no matter where you are. While the right to liberty isn’t absolute, and there can be justifiable grounds to deprive someone of their liberty (such as within the judicial prison system).

The CRPD says that all treatments should be based on informed consent by the person, but it does not say that all involuntary treatments are forbidden. If there is a situation when a person is to be treated without consent, this should be the same for people without a disability.
For example: diabetics can be treated without informed consent when they are in a coma, then it is a life-saving treatment. That is claimed as a treatment in their best interest. But treating them without informed consent before they are in a coma would be a derogation of existing rights. That cannot be justified.
But when persons with mental disabilities are treated against their will, this is very, very seldom a real life-saving intervention (we are the experts ourselves). And treating someone against their expressed will when their life is not at stake is an abuse of force, which is illegal and unlawful. Forced mental health interventions are typically done because the persons with mental problems are seen as “too crazy and not sound of mind”. But what is a sound mind???
People who are seen as “having an unsound mind” are temporarily treated as less than a human. The CRPD clearly states that even people who would have an unsound mind are people too, and they are entitled to have human rights too.

The CRPD committee has already done a lot of important work by addressing the negative rights (what can not be done), but the governments still do not understand the positive rights. It’s not the CRPD committee’s task to prescribe how these rights should be carried out. It is the task of each government, to make laws that fit to the situation in their own countries. User/survivors must play a substantial role in answering these open questions. Often the user involvement is only tokenistic, but the users should have the most important expert voice.
For user movements it is therefore important to be well prepared as an expert, ready to be actively involved and consulted and to demonstrate positive rights. That is why we need to spend time on capacity building and defining a strategy, as what we are doing now.

Mental health care is not only about having resources. Also in “rich” countries, like Hungary, the situation is very sad. People are chained and caged in facilities, and this is backed by the law, and not seen as unlawful by the government. This also means that regional lawsuits generally do not address this as ill treatment, but still find it medically justifiable.
For torture in traditional healing centres this might be the same, and the involuntary treatments, chaining and shackling may not be recognized as ill treatment, but justified by the community and the governments on various grounds, even while this is not.

It is important not to advocate for the allocation of torture, and basically move the forced treatments and restraining from traditional healing to professional institutions, who seem to think that the persons with mental problems are so crazy that they need to be saved at any cost, even by using force at large. Some professional protocols obligate the use of force, and there must not even be danger (such as the administration of anti-psychotic drugs during a psychosis, when not administered this is called “negligence”)

What is needed is awareness, training and change.
The west learns to find alternatives. We know that mental health care isn’t innovative of their nature, so they need to be pushed by user movements, laws and the public opinion. There are some evidence based good practices, such as peer support, Soteria-projects, the Open Dialogue for schizophrenia (Finland) and the Eindhoven Model (Open Mind Support group)

The resources that are needed are not professional psychiatrists, but trained intensive centres that focus on people. It is important to identify the existing resources that are there. If traditional healers are the existing resources, it is important not to prohibit or execute them, but to advocate for compliance with the CRPD.
The western alternatives are developed under the despair of users, family and also some professionals. The resources are clearly found in the lay of people in different circles around a person. The question is: Who can be valuable to support people, or this specific person, and what makes an important contribution to the wellbeing of the entire population.
The CRPD is not against mental health care, but sees mental health in a much wider view, as an important value for all, going beyond those who are already dealing with an ill health. Mental health is important for everyone. And the existing lay of resources should not be underestimated. The existing resources need to be identified, and then questioned what is needed for capacity building, regarding the real needs of users (which are not forced treatments or medication alone). But if medication is a real need, then this should be made available.
However, the decade of the brain has expired. Drugs were not a true solution. Schizophrenia hasn’t been resolved. The real needs for psychosocial rehabilitation and psychosocial recovery are mainly social needs. The comprehensive laws and policies from the CRPD do not focus on treatments, but are based on social needs.
International cooperation is needed to identify useful resources. The pharmaceutical industry will be happy to sell their drugs in Africa, but beware that this can become an enemy, because it doesn’t address the social needs on the long term. There is growing awareness on other resources, social human resources, also not just regulation.

And also what is happening at the PANUSP conference is a way of international cooperation, with the use of international and intensive grassroots support, such as participation from various countries, and even from beyond Africa by Gabor, Jolijn, Allison and Heléne. This is not traditional, but a new good practice.

Allison summarized what just had been said into 3 main points.
1. In many mental health laws and reforms persons with mental illness or disabilities are seen as special populations. And the OHCHR is very clear that separate laws for “special populations” are discriminatory. Mental health is important for all of us. Everyone has the right to mental health. Mental health laws should detain the highest level of mental health for all people, not just people with a diagnosis, so mental health laws should apply to the entire population. Mental health is to be a part of primary health care, because mental health is a part of a person’s health (holistic approach). If there are separate laws for this segment, then these laws should apply to all of us, which is different from the situation as it is now.
2. We have to look at the causes and roots of emotional distress and human responses to that, which the care sector diagnose as illnesses, like schizophrenia, depression and bipolar. These “mental illnesses” or severe psychosocial barriers do not fall right out of the sky. Our experiences tell us that it originates in a set of factors that contribute to developing such a response, like relationship dynamics, loss, unemployment and so on. It is not just a medical issue, and no pill or psychiatry has been able to solve it. We have to identify the mental illness, and address that we are being human and that our operational capacities are taken away from us. We must also find out what resources are needed to recover, such as social and economic relations, access to employment and so on.
3. The budgets for mental health care in Africa are increasing, and 10% of the national health budget should go to mental health. But what will the governments do with that? Will they build more institutions, hire more psychiatrists and dispense more psychotropic medication? Or will they invest in a holistic approach where people are not just patients, but persons, and look at the root causes? We have to ask ourselves what is needed in times of acute emotional distress.

We all know the WHO Global Action Plan (GAP 2001) called Closing the Gap, which has a list of 10 issues that the WHO consider as a priority. One of the priorities from the GAP-programme is that psychotropic drugs should be made more available in developing countries.
Also a lot of country governments still think in terms of the MI-principles (WHO guidelines from the 1990s, which were outdated the moment the CRPD entered into force), but when we requested new guidelines in line with the CRPD, the WHO says they have “no money” to draft these new guidelines.
So we often question ourselves what role the WHO has in realizing the CRPD.

Mental health is hard to define, and even general health is hard to define without using medical language. We have to unpack the issues and find a match on the ground. Most of the mental health bills should better be called “mental medical service bills”, and we have to question ourselves: do we want that, do we want medical services?
Psychiatrists are paid by tax payers money. We should get people aware that foreign aid and psychiatry doesn’t come for free, but actually it is our fellow citizens money we are spending. How much benefits will come from one more psychiatrist? And how much benefits will come from a workshop of 200 willing people? It’s your own money…
At the World Congress of the World Federation for Mental Health (the Global Summit) there is a campaign that is called The Great Push, which is about more investment in mental health care for developing countries. The concept is rather vague, and it doesn’t say whether this is based on the Human Rights-approach. Actually they mean: more investment in the psychiatric medical model, with more medication and more institutions. This is easily misunderstood. Doctors are trained in the wrong way of thinking. The carers are lost and they don’t know what to do. We need to speak out and clear up the vision. We are not less powerful, we can speak with dignity. It is our job to make a statement.
Tomorrow we will discuss strategies.

It was already past 12.30, so it was time for another delicious lunch at the restaurant across the street. 2 ladies from the Human Rights commission of South Africa joined us for lunch. South Africa has ratified the UNCRPD and the ladies were experts, advising the government on implementation of the CRPD. That is why they came to intensify the relations with the user movement. Right after the lunch we had to rush back into the conference room.

The discussion on law reforms had taken way to long, so the programme had to be rescheduled. So directly after the lunch, at 13.30 Heléne Combrinck gave her belated introduction to article 29, the right to vote.
One way, probably the oldest way, to change the law is by changing the people who make the law, and putting other people in place who are responsible for the laws of a country. This means voting and political involvement.
The CRPD article 29, the right to vote, is therefore very important and linked to law reform. It is also linked to article 12, legal capacity, which is the right to make decisions, such as decisions about property, where to live and with who, to sign contracts and so on. When persons are denied this right to choose, this is basically done because there is no trust in these people (which is nonsense). Every person has the right to legal capacity and the right to participate in public and political life. Article 29 is a consequence of article 12, just like all articles. The legal capacity of every person has to be recognized, which is an issue related to discrimination and equality.
Just as many articles in the UNCRPD, article 29 says people have this certain right on an equal basis with others. That is the equality-component. With the adoption of the CRPD there have been debates about whether the CRPD focuses on equality (just like the Convention to the Elimination of Discrimination Against Women - CEDAW) or whether it has focus on a substantial, specific rights. In fact the UNCRPD is a combination of substantive liberty rights and the equality basis. Article 2 of the UNCRPD gives the definition of discrimination.

The definition on participation in political and public life (article 29) is based on 2 important aspects: A. the right to vote and to be elected, which is a duty of the states and is explained in 3 sub-articles, and B. Actively promote an environment that enables participation in public affairs without discrimination, with again 3 sub-articles. States must first ensure that there is an appropriate legislation on voting and elections, which is easy to understand and used. Such as anonymous voting without intimidation, and guaranteeing free expressions. In some countries having a safe participation in voting and elections on itself is already a big challenge (intimidation), and especially people who need support in voting (for example blind people) are extra vulnerable.
In Zimbabwe, a country known for harsh election-violence, blind persons were obliged to have their ballot filled in by the police. By now the Supreme Court has granted an amendment which enables blind people to choose a person of their own preference, a person who they trust, who can support them by filling in their ballots. This is in line with the UNCRPD.
In Ghana there is this issue about “soundness of mind” and next year there will be elections. So they are raising the issue on who judges who is sound and who is unsound of mind, and they have asked the psychiatrists to declare users as sound, in order to register users to vote. But the court said there are no means to vote, while prisoners have the right to vote in the prison yard. So the user movement in Ghana is now advocating to enable voting inside institutions, the same as in prisons.

The participation of users in political and public life is a duty of the State, to link up with the obligations of the UNCRPD. And NGO’s, organizations or business can only stimulate that. The right to vote is a big issue.

There was no time left for doing the group work for the OHCHR Thematic Study on Political Participation, which will now be an assignment for tonight for all participants.

Then Eyong Mbuen, a legal officer from MDAC told us about the case of Kiss versus Hungary at the European Court of Human Rights. This case was done by MDAC: Mental Disability Advocacy Centre, based in Hungary. MDAC is an international Human Rights organization who advocates for the rights of persons with psychiatric disability.
Mr. Kiss, a 51 year old man from Hungary was excluded from the right to vote, because he was placed under (partial) guardianship, and guardianship, whether partial or full, implies automatically the loss of voting rights under the Hungarian constitution. Mr. Kiss however, wanted to vote. In 2006 there were elections, but Mr. Kiss appeared not to be on the list of people who can vote. He first went to district court, which said that the Hungarian law wasn’t violated, and Mr. Kiss had to accept his position. Then Mr. Kiss went to MDAC for legal support and in September 2006 they filed a case to the European Court of Human Rights. First the European Court dismissed the case, because the domestic remedies were not exhausted in their opinion, but in a second consideration, urged by MDAC, the European Court decided to accept the case, since it was about the Hungarian Constitution that violated the protocol of European regulation on the right to elections, and it was likely that Mr. Kiss wouldn’t have a fair chance to win this case in Hungary on his own.
As a first response, the Hungarian government answered that the right to vote isn’t absolute, and it can be limited for people who don’t see the consequences of their behaviour, for that same reason children cannot vote, referring to psychiatric patients who are seen as having “an unsound mind”. At first the European Court tended to accept that. But Mr. Kiss, represented by MDAC defended himself, saying that he understands that the government has a duty to protect people, but not ALL of the patients are incapable of voting, and the Hungarian court does not assess mental or voting capacities, so they cannot say that all of the patients are incapable of voting.
Then the European Court of Human Rights concluded that indeed the Hungarian constitution cannot categorize that all of the persons with mental and intellectual barriers are incapable of voting, and decided in 2010 that Mr. Kiss was right in this case, meaning that the categorical exclusion of persons with mental disabilities from the right to vote was unacceptable.
The impact of this case will be mainly on the long term, but the decision benefits all persons who are under guardianship. This was a strategic case from MDAC, who is happy with this result. Disability can be no reason to deprive someone of the right to vote, (only age or nationality can be a valid reason under the Venice Commission). Voting is a legal aspect of life, linked to legal capacity and making decisions independently. People who are seen as “unable or incapable to vote” need support, and measures have to be taken to ensure and enable that everyone can exercise their right to vote. In fact, only willingness to vote can be seen a criterion to define if people can or cannot vote.
Voting is an individual decision, and would need an individual assessment on capability, with objective and reasonable reasons to deprive someone of their right to vote, but the right to free elections, with no manipulation and the right to free expressions basically implies that this is a non-discussion. The general public may respond in derogatory terms, like “is a fool allowed to vote?”, but in history this was the same with women and black persons. It just needs time and efforts to grow awareness on legal capacity. In some countries you can vote when you are “okay”, but when you are “not okay” you cannot vote. MDAC has launched a campaign called “Save the vote” ( www.savethevote.info )

In Kenya, persons with intellectual disability need to be registered as “adults” before they are allowed to vote, and people in prison are allowed to vote, but not in psychiatry, because the persons with mental illnesses are seen as having an “unsound mind”.
A nice response came from Lizzy, who said that the Nigerian parliamentarians sometimes are throwing chairs in discussions, and that basically means they are all mentally ill.

Gabor Gombos, who used to work for MDAC until 2005, gave a short reflection on this topic, and pointed at the long process (2006-2010) that was needed before Mr. Kiss actually had the right to vote. When the decision from the European Court came, the elections of 2010 had just passed. Most users are totally disempowered, and don’t think that there is someone who can help them. They have no hope, and no financial means to access a regular lawyer. Besides that, social economic issues are often more important for a user, basically they are just trying to survive. MDAC is an advocacy organisation that tries to address the issues that are important in the lives of people with mental problems. The right to vote is the right to have a voice, the right to be counted. In 2006 there was a strong conviction at all levels of the community that people with mental barriers have no right to vote, and MDAC challenged this view and pushed Hungary to implement the Kiss-decision in the constitution.
In the Concluding Observations of Spain, the CRPD Committee urged that the Spanish laws should also be Kiss-compliant, meaning that guardianship doesn’t automatically imply losing the right to vote. Now the new draft law of Spain contains a part that a judge needs to assess and decide if the persons has the capacity to vote (in the guardianship process), but of course it’s an obvious discussion who can make such a decision, and on what grounds people then are excluded from their right to vote. This Spanish draft construction is not compliant with article 29 of the UNCRPD.

Now the right to vote is agreed in some countries, but the right to legal capacity and the right to liberty are still denied, and it is good to look into the real motivations. Probably the governments and psychiatrists are just scared of what will happen when persons with psychosocial disabilities are not locked up. We need to find as much allies as we can, and make a flexible plan to find opportunities that will strengthen us.

It was time for another tea break, and at 15.30 Heléne Combrinck briefly explained the assignment for OHCHR thematic Study on Political Participation. This was a questionnaire that came from the Office of the High Commission on Human Rights (OHCHR), and all participants were asked to answer the questions, so that the OHCHR could identify facts of practices and realities, areas of concern, and priorities for the African continent and individual countries. This will be (anonymously) put into a political document that will be seen by diplomats of many countries. Gabor will make sure that the Special Procedures will be applied to disability rights activists, in order to protect user movements from any possible negative repercussion.

The last topic on today’s programme was Identifying PANUSP strategic priorities, which was group work, which will be put together in the report of Day 3.

This was the end of the training component of the PANUSP work conference, and tomorrow we will proceed in drafting a PANUSP-constitution, election of a new board of PANUSP, a PANUSP Action Plan, and a Declaration of PANUSP for the World Congress of the World Federation for Mental Health. It had been a very inspiring and long day again.

For more information go to www.panusp.org

This report is written by Jolijn Santegoeds, founder Stg Mind Rights www.mindrights.nl , email: tekeertegendeisoleer@hotmail.com the Netherlands, and supporter of PANUSP