ENUSP Open Day: Very interesting presentations

On Saturday 13 December 2014, the meeting of the European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP, www.enusp.org) continued. This was the Open Day of the European Conference, which meant that the conference was open for other participants, such as members of LAP (the Danish organization which was hosting this conference). The day was full of empowering presentations.

At 10 AM, Karl Bach Jensen (LAP) opened the conference, and we started with a moment of silence to remember the people who died. After that, we sang “We shall overcome”. It was intriguing.

The first part of the conference was about organizing and research.
The first speaker was Jasna Russo from Germany, who spoke about Survivor-controlled research: exploring our own knowledge. She explained the difference between knowledge from the first person, or the third person, by quoting David Webb (2010): “The essential experiential data of consciousness are subjective, inviable and unmeasurable first-person data which cannot be reduced to third-person data without losing their most important properties, which are the subjective value and meaning of an experience to those who live it. The reductive, third-person methods of traditional science will simply not help us to understand, describe and explain the first-person, lived experience of consciousness. “

Jasna Russo gave an analysis of the ways that knowledge is produced (epistemology), and how users and survivors have been traditionally excluded. She illustrated this by 2 other quotes: “The dominant epistemology has worked to prohibit mental health service users from being producers or knowers of their own knowledges. Psychiatric knowledge has been based on the ‘knowledge claims’ of others about the experience of mad people and mental health service users. They have played the key role in interpreting service users’ experience, while the latter’s own interpretations have, as has been argued, been excluded or devalued.” (Beresford and Boxall, 2013).
“For psychiatrized people, being constructed as ‘incompetent’ and ‘dangerous’ becomes a powerful mechanism leading to their disqualification as legitimate knowers”. “[Epistemic violence] is a very denial of a person’s legitimacy as a knower – their knowledge and their ways of knowing – that renders that person out of existence, unable to be heard and to have their interest count.”(Maria Liegghio, 2013). Jasna explained that the traditional scientific research models are not a good framework for research and knowledge production in mental health care. The denial and the disqualification of the first-person knowledge is damaging the knowledge-base, and doesn’t help to develop knowledge. Therefore it is called epistemic violence.

The various ways of including users and survivors of psychiatry in research is categorized in: consultation, collaboration, contribution and control. Of which consultation, collaboration and contribution are the most common. And survivor-controlled studies are relatively rare. The development of meaningful knowledge is still at its start, and faces a lot of challenges, such as a lack of resources and recognition, and a lack of an underpinning theory on what is madness and a systematic evaluation. Currently, good research is being dismissed based on the methodology used to generate the knowledge. It is very much needed to research our experiences as users and survivors ourselves, to produce the knowledge needed, including methodology. Jasna closed by quoting from Russo and Shulkes (2015): “As people who know madness and distress, and have also experienced dominant societal responses to it, we are responsible for further exploring, advancing and sharing our knowledge to achieve a different, non-damaging and non-medical framework. Inspired and encouraged by the social model of disability, we also see no one better equipped for this task than ourselves. Our joint efforts in this direction could lead us beyond divisions based on psychiatric assessments to a ‘society brave and moral enough to eschew the whole paradigm of mental health and illness, replacing it with a creation of real community, and real help’ (Shimrat 2013).” It was an impressive presentation which clearly stressed the need for survivor-controlled research.

The next 2 speakers spoke about organizing user and survivor movements.
Naomi James (UK) spoke about the National Survivor User Network (NSUN) in the UK. NSUN is an organization which enables users and survivors to be consulted by all fields, and aims to develop a national voice for all who face oppression. It shows that the professional concept of madness as a so-called defect is disconnected from the lived experience, which often relates to past experiences of abuse and power imbalances. Instead of asking “what is wrong with you” , the question is “what has happened to you”. Also the journey to recovery is different for different people. NSUN is actively involved at the policy making level, and has also developed a set of involvement standards as a framework of values for practical guidance. The NSUN network enables consultation to be meaningful and ongoing, by facilitating a solid platform for user/survivor experiences. She stated “The most common way people give up their power, is by thinking they don’t have any” (Alice Walker, 1982). NSUN empowers users and survivors. To illustrate the involvement processes at NSUN, Naomi showed us a video on the National Involvement Standards (called 4PI): https://www.youtube.com/watch?v=62tDQd9Livs
It was a very nice and practical presentation about organizing user involvement at various levels.

The third speaker was Sera Davidow (USA) of the Western Mass Recovery Learning Community (http://westernmassrlc.org/ ), who spoke about peer run initiatives. She first shared her personal experiences of childhood traumas and terrible misunderstanding by mental health care professionals. Psychiatry only confirmed her feelings of being “unfit”, by giving her many diagnoses and avoiding to talk about any feelings. Her traumas were not recognized, it was never asked why she had trouble trusting persons, and she felt increasingly lonely. At some point she came out for her feelings, and experienced understanding, which made her realize the power of peer support and the importance of having someone who is on the same level. There are different roles one can have in peer support. The Western Mass Recovery Learning Community provides a space for peer support services varying from simple things such as having a coffee together or helping someone cleaning up, to advocacy and training. The most important aspect of peer support is that it is based in equality, and that it is not the professional, but the user who is in control. Peer support can help people to realize that they have power, and support people to be heard. Professional mental health services always imply a form of power imbalance concerning advises, while peer support is really based on equality and the expressed needs of a person. Therefore peer support has an unique value incomparable to professional mental health care services.

The next speaker should have been Wilma Boevink from the Netherlands, but unfortunately, she was unable to come to the ENUSP conference. Instead she had sent a very impressive documentary of the TREE-programme Towards Recovery Empowerment and Experiential Expertise (also see http://www.trimbos.org/projects/treatment-and-reintegration/tree-programme ). In the video, several persons gave their testimonies on their experiences of trauma, the wrongdoings by the psychiatric services and their real needs for recovery. It was very moving, and very recognizable.

After the lunch, there were several workshops on practices for the future: Hearing Voices network, Open Dialogue approach, Peer run crisis services, Getting off psychiatric drugs, and Peer initiated recovery and empowerment training.
I went to the workshop on the Open Dialogue approach by Orion, a sheltered living- and work centre for persons with psychosocial disabilities in Hillerod, Denmark. In the workshop, a service user and a caregiver were open to answering any question anyone had about this model. It was very interesting. The main value of the approach is not to interrupt, but to listen to each other. In times of disagreement persons use different means of communication, but this can change again. It is very important to talk about distress, and to be included, to be a part of life. It is important that the user is heard, and able to express his/her own wishes for the present and the future, and that everything can be discussed openly, to find out how to move on together. The Open Dialogue approach implies listening, which also implies that using force is really not on the minds of the carers, since they recognize the social need to be on the side of the person during times of distress. And they recognize the value of trust, and re-establishing trust by showing goodwill and respect for the wishes of the user. The Open Dialogue approach at Orion has started 10 years ago, and the model isn’t as fully implemented throughout all services as the full model in Finland, but it is currently additional to other mental health care services. The Open Dialogue approach is a way to confront issues in life. Equal communication is key, and it also requires not to rush to a conclusion, but to tolerate uncertainty, and sometimes even discomfort and ambivalence. Listening to the user, being open for contact, and moving along with one’s wishes as much as possible, even when these wishes vary quickly, proves to be helpful in building trust and eventually recovery. The caregiver stated that she was happy that it was now legal for health care workers to be a human being with a professional background, instead of executers of an impersonal hospital-approach with power imbalances. Open Dialogue is based in equality, and the approach goes beyond a form of therapy, but it is merely an attitude towards each other, featuring an atmosphere where anything can be discussed. It was very interesting to hear both from a service user and a caregiver about their positive experiences with the Open Dialogue approach in practice.
And since the Open Dialogue approach is based on some similar values as Family group Conferencing, I found this very interesting.

Then, the final plenary session started. It was about human rights issues.
Tina Minkowitz (USA) of the World Network of Users and Survivors of Psychiatry (www.wnusp.net) spoke about the UN Convention on the Rights of Persons with Disabilities (CRPD). She explained that with the CRPD, finally the rights of users and survivors of psychiatry have become international law. The CRPD ensures full equality in the enjoyment and exercise of all human rights and fundamental freedoms, and calls for a shift from the medical model to a social model. An actual or perceived disability cannot be a basis for discrimination, which means that when other people think that a person acts strange, this still is no reason to take away fundamental rights. Equality means that everyone needs to be protected. No one but ourselves can define whether we experience our human rights such as respect and equality. We need to name our experiences and define our reality when it comes to violations and understanding of altered realities and distress. This role is expressed in CRPD article 4.3, which says that persons with disabilities need to be meaningfully included in law and policy making, which gives us a leadership role in the implementation of the CRPD.

Forced treatment is a severe violation of human rights, doing mental and physical harm. It is torture and needs to be stopped. The standard is (fully) free and informed consent by the persons concerned. Consent under pressure is still force, similar to the concept of consent when it comes to rape and sexual violence. The comparison to gender violence is viable, since the experiences of the severe violations of personal integrity, and damaging practices in psychiatry resemble experiences of rape and abuse. Forced treatments are based in domination, which is force. And considering the harmfulness of the interventions such as mind-altering drugs, deprivation of liberty, violations of integrity and deprivation of legal capacity, there cannot be a standard of “implied consent”, but there has to be explicit, free and informed consent for such interventions. There has to be choice. This new paradigm is reflected several articles of the CRPD, such as in CRPD article 12, right to legal capacity on an equal basis with others, CRPD article 14, liberty and security of the person, CRPD articles 15, 16, 17, freedom from torture, violence, exploitation and abuse, and respect for the personal integrity, and CRPD article 25, free and informed consent in health care. States must abolish laws and practices that allow or penetrate forced treatment, which is an ongoing violation found in mental health care throughout the globe (CRPD General Comment No.1). Also the UN Special Rapporteur on Torture urges for an absolute ban on forced drugging, forced electroshock, restraints and solitary confinement (2013).
Medical professionals may claim that forced treatments are life-saving interventions, similar to unconscious persons in need of medical care, but psychiatric crises are not comparable to medical crises. It is possible to overcome a psychosis safely without medication, with the right personal social circumstances. The claim that persons cannot make decision is also not true, since persons make decisions all day long, even when the decisions are perceived weird or wrong. The CRPD stresses the right to make choices, such as to choose or deny help, and to take own responsibility for the consequences of choices (CRPD General Comment No.1). The abolition of forced interventions doesn’t mean that persons need to be neglected, but it means that it is needed to develop ways to really support persons during crisis situations. Instead of the current situation in psychiatry, with devastating forced interventions, which are only making it worse.

Deprivation of liberty (detention) cannot be justified by an alleged need for care. The right to liberty and security of persons means that persons with psychosocial problems can be subject to criminal proceedings if the law is violated, but otherwise are free to act according to our own will and preferences on an equal basis with others. Detention in institutions without the person’s informed consent is arbitrary detention and violates article 12 and 14 of the CRPD. Disability cannot be a ground for detention, considering non-discrimination.

Deprivation of legal capacity is also a violation of core human rights. Without legal capacity a person cannot make meaningful choices in life. The assessment of legal capacity is always subjective, and again the nature of this violation shows a relation to gender based violence, colonialism and poverty in addition to disability-based discrimination. Respecting legal capacity doesn’t mean neglecting problems. There are already more and more good practices to support a person through a crisis situations, in which the care follows the person according to the will and preferences of the person concerned. The concept of advance directives however, does lead to a problem, because certain situations may be unforeseen, and it is questionable which expression then needs to be prioritized: the advance directives or the will of the person at that moment? An advance directive may make people even more vulnerable for abuse, since the will of the person can be ignored. This issue will need more attention from the human rights perspective.
Tina’s presentation of the CRPD was very clear, and even though I am an expert of the CRPD myself, the explanation of the CRPD still makes me happy, and gives me strong feelings of recognition, support and empowerment. It is so to say, my favourite story :)

As a next speaker, Asmati Augustin from Georgia shared her personal horrible experiences of mental health care in Georgia. She was institutionalized in Tblisi, and the conditions in the institution were dreadful, very poor. There was no heating, there were rats, no attention at all. Some people didn’t even have clothes, so she gave away hers. She was locked in without any access to fresh air, no yard or whatsoever. She couldn’t bear to be there, and after 10 days she managed to be allowed to leave. Her family eventually arranged a short stay in an expensive private hospital, where she eventually started to recover. She is now organizing a mental health union in Georgia, and even managed to help several persons to get out of the horrible hospital to a better place. She tries to contact the family of persons who are dumped in the hospital to inform them that their relative needs help to get to a better place. She speaks out about the issues, and the staff is not happy with her visits. She complains about the food and conditions, and tells the doctors what is mistreatment. Many users do not dare to go back to the hospital for such visits, out of fear that they might be harmed. They have now set up a library where users and survivors can learn how to defend themselves. It was very impressive to hear about her experiences and very important work. She got a big applause.

As a last speaker, Karl Bach Jensen spoke about how psychosis and loneliness go hand in hand. Karl wrote the last chapter in the book on toxic medication of Peter Lehmann, “Coming off psychiatric drugs”. Karl wrote his story, the story of Bent. Karl spoke about the total isolation of a person in psychosis, since there is no audience for communication, meaning no understanding of personal experiences and a life in exile. This is a huge tragedy. Persons with psychosis are excluded, locked up and medicated, until the psychosis supposedly weakens and goes away. But this treatment worsens the situation and leads to more mental exile and even deeper retreat. This treatment carries human rights violations which are experienced as comparable to the treatment of slaves, by the abuses so profoundly against human diversity. But human beings are not to be isolated. We should not wear earplugs all the time. We belong in herds, we need each other, and together we can liberate the persons who are still suffering from these abuses.
Karl continued with a few words of thanks for the sponsors of the conference, and then the plenary part of the conference was closed.
It surely was a very interesting programme.