We did not want this to happen to us. We did not want this to happen to anyone. Anger gradually gave place to sophistication. We learned how to advocate for ourselves, how to overcome shame and stigma, how to be proud of our madness, how to change the bad for the good. We started to change ourselves and started to learn about lives of our peers and also tried to understand the system, which is centred around institutions. We had to understand why institutions are bad if we wanted to demand for something better.

When I am writing these lines I am looking forward to spending time and working in India. I am willing to share my experiences with my friends, peers in that huge and for me unknown country in this article and later also in person. I want to do this not because I think I can teach you. I know that I know nothing of your country, of your institutions, of your everyday difficulties, of your sorrows and of your happiness. But I strongly believe in mutual learning. I want to learn from you and I want you to have my experiences available to you.

What is an institution?

When talking about mental institutions we often think of large, old, Victorian style buildings in a bad state of repair, warehousing thousands of inpatients. Even human rights literature criticizes the physical conditions, overcrowdedness, lack of hygiene and the like. In the past 15 years I visited hundreds of institutions in a number of European countries and in North America. In poor countries and in rich countries. I had the privilege to work in post war Kosovo, where I had to witness how foreign funding was used to refurbish an old institution. They made a four star hotel looking building from a ruined down block of houses. The renovated institution had marble stairs, luxury bathrooms with expensive Italian tiles. And then I became angry again. The bathrooms were closed all the time I visited the place. I could hardly see any residents outside their bedrooms where they spent their time sleeping, sedated by strong medication, or purposelessly wandering in the corridors. They had to wake up and get up at 6 o’clock in the morning, they were given their meals when it was scheduled, not when they were hungry. They had no opportunity to choose what they wanted to do in their spare time. They had no say in whom they wanted to live with. They had to follow house rules on which they had no influence at all. They were treated as objects in a factory. The luxury institution was certainly not a home but a service to keep residents alive.

I saw institutions in rich Finland. Every unit had its seclusion room with special bed and sophisticated restraint tools. In the States I visited a so called group home where residents were not allowed to talk to me directly. The social worker spoke on their behalf. The house rules were more rigid than in some of the large institutions I had seen before. Literally every minute of the residents was controlled by the social worker on duty and users had to ask for permit for virtually everything.

Institution, in my understanding, is about power. Goffman published his famous book on total institutions decades ago. At a time when deinstitutionalisation had just started. Mental health professionals often say, and many of them genuinely believe that those total mental institutions belong to the past. There are several problems with this approach. Firstly, deinstitution-alsation has happened only in the smaller part of the world. In poorer countries institutions are just being built nowadays. Like in India, where the Supreme Court obligated states to build and run institutions for people with mental health problems. But India is not an exception. In my country, Hungary, which joined the European Union, one of the most propsperous regions of the world, proud of their sensitivity to human rights for all, the government decided to build new institutions, each housing up to hundred people.

Another problem with deinstitution-alsiation is that institutions form their own infrastructure. In an economy driven age like ours existing infrastructure needs to be used. And institutions can hardly be used for any other purpose. Thus instead of deinstitution-alisation even in ‘progressive countries’ one can see transinstitutionalisation. Former mental institutions are being transformed into elderly houses. And too often those elderly people living in these elderly ’homes’ are the very same people who used to live in the very same buildings as “chronically mentally ill”.

The third problem is that even small scale residential facilities can be total institutions. The typical attitude towards people with mental health problems is paternalism. Even “best people” act “in the best interest” of the person with psychiatric labels. The presumption is that those people, like myself and some of my readers, are incapable of understanding what is good for us. Consequently others need to decide what shall happen to us. Where we shall live, what we shall do in the 24 hours of the day, 7 days a week, 52 weeks a year...till we die. Our right to make our own choices are taken away “in our best interest”. The power of the managment of the institution and also of the staff is unlimited. Residents of institutions, of large

seem to be important to, at the very least, have guidelines in place that protect the best interests of the prospective resident.

More generally, the emphasis on the opinion and approval of the prospective resident’s family and psychiatrist raises questions about the voluntariness of treatment. This is an important question for practical as well as legal reasons.

As Helen Killaspy et al. have written in What do Mental Health Rehabilitation Services do and What are they for? A National Survey in England, “[r]ehabilitation psychiatry is practically an ‘evidence free’ zone in modern psychiatry.” It would seem, however, that rehabilitation would be less likely to be successful when it is not voluntary. In particular, it is difficult to reconcile involuntary treatment with the goal of “promoting independence and autonomy.” One provider emphasized that a major factor in its admission decisions is whether the prospective resident is motivated to participate in the rehabilitation programme.

The use of force is highlighted by the practices of the five rehabilitation centres that find some or all of their residents on the street. Two of these five providers described their admission procedures in detail. One stated that staff members sometimes have to use “mild force” to lift the person and put him or her into a vehicle. If the individual is going to be admitted to the rehabilitation centre, a Magistrate is involved in the admission process. If more than one admission has to be processed, the Magistrate will come to the facility to issue reception orders. Otherwise, the facility brings the patient to the Magistrate. It is generally a three-day procedure to produce a person before the Magistrate and receive a reception order. During that time, the “rescued” individual is kept in an isolation room unless he or she is calm.

Another rehabilitation centre that finds residents on the street stated that the person is “caught” and put in a jeep. Then the person is brought to the rehabilitation centre and cleaned. Next, a psychiatrist is called and told the person’s symptoms. If the person is violent, a night duty nurse watches the person overnight.
One of these providers has developed a relationship with a government mental hospital. After the provider “rescues” an individual, the individual is brought to the police station where a memo is written to allow temporary shelter at the provider’s facility. At the facility, a medical certificate is completed by three or four doctors and a complaint is filed with the police department requesting assistance. A “First Information Report” is used to file the complaint because there is no other legal form available. The Joint Commissioner then reviews the paperwork, and the Commissioner signs a reception order. The person is then taken to a government hospital for admission. Approximately thirty people a month are being admitted to the government hospital through this program.

Several aspects of these “rescue” procedures are disturbing. First, even though such acts are presumably done with the best of intentions, the use of force to “catch” a person on the street is an incredible assertion of power. These rehabilitation centres appear to be invoking an authority that is generally reserved for the state. At one rehabilitation centre, this blurring of the edges between private and governmental power is highlighted by the Magistrate’s visits and the close relationship the facility has with a government hospital.

Second, after it “rescues” a person, one of the rehabilitation centres files a “First Information Report” (FIR). According to the Commonwealth Human Rights Initiative, an FIR is “a written document prepared by the police when they receive information about the commission of a [crime].” The use of an FIR potentially criminalizes being an individual with a mental health problem, and it brings mental illness out of the realm of health law and into the realm of criminal law.

Third, the “rescued” individuals are being deprived of liberty without the benefit of legal counsel. Section 91 of the Mental Health Act (MHA) provides for the free legal representation of a “mentally ill person” “in any proceeding under this Act before a District Court or a Magistrate.” However, based on the above-stated descriptions of admission procedures, it does not appear that “rescued” individuals are being provided with legal assistance when they are produced before a Magistrate for the issuance of a reception order. This is an important topic for future research. As Professor Michael L. Perlin has written in a recent article entitled International Human Rights Law and Comparative Disability Law: The Universal Factors, “[t]he development of mental disability law in the United States tracks – inexorably and almost absolutely – the availability of appointed counsel to persons facing commitment to psychiatric institutions, to those being treated in such institutions, and to those seeking release from such institutions.”

Fourth, the use of force by rehabilitation centres violates the Convention on the Rights of Persons with Disabilities (CRPD). Professor Amita Dhanda has concluded that, although the CRPD

text “neither expressly prohibits nor permits forced intervention,” the ambiguity should be construed in light of the complete document’s emphasis on the dignity and autonomy of persons with disabilities. It is clear, however, at the very least, that the CRPD prohibits forced interventions with regard to rehabilitation: Article 26 specifically states that “habilitation and rehabilitation services” must be “voluntary.”

More generally, the CRPD emphasizes that a person with a disability has legal capacity. The CRPD requires that, if and when it is necessary for a person with a disability to be given support in exercising his or her autonomy, this support is subject to stringent limitations in scope and duration. Pursuant to Article 12(4), the safeguards must ensure that any measures relating to the exercise of legal capacity “respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body.”

As opposed to the CRPD, much of the MHA seems to assume that a person with a mental health problem does not have legal capacity. For example, pursuant to Section 19 of the MHA, a relative or friend of a person with a mental health problem can apply to have the person admitted to a psychiatric hospital or psychiatric nursing home. This “admission under special circumstances” provision gives extraordinary power to other individuals to act on behalf of a person with a purported mental health problem. For example, for an admission pursuant to this section of the MHA, there is no provision for a hearing unless and until the person who has been committed applies to the Magistrate for discharge.

Although involuntary treatment would seem to be out of place in rehabilitation centres, India is not the only country where it occurs. For example, according to Killaspy’s national survey of mental health rehabilitation services in England, eighty-nine percent of short-term rehabilitation services accept patients detained under Great Britain’s Mental Health Act.

India’s ratification of the CRPD means that change will have to happen relatively quickly. Pursuant to Article 33, India is required to “maintain, strengthen, designate or establish . . . a framework . . . to promote, protect and monitor implementation of the [CRPD].” Within two years after the CRPD comes into effect, India will have to submit “a comprehensive report on measures taken to give effect to its obligations under the [CRPD] and on the progress made in that regard . . .” Given the evidence of the use of force by rehabilitation centres, there is much work that remains to be done.

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As part of my Clinical Psychology coursework I was required to read a book called ‘Soul Searching: Why Psychotherapy must promote moral responsibility’. I baulked at the title. Mostly expecting sentimental mumbo jumbo. Till I read it.

There is a reason they tell you to never judge a book by its cover.

Dr. William J. Doherty, besides being the author of this book is a remarkably gritty therapist for daring to say that therapists have a far greater responsibility to their clients than they previously realized. The details of his argument, I leave for another time. However, for right now I want to dwell on Dr.Doherty’s remarkable views on forced treatment. I like the fact that he chose to speak about ‘forced treatment’ in a chapter titled ‘Courage’. Throughout the chapter, Doherty attempts to lay the groundwork for his belief that there is something wrong “both clinically and ethically in not taking responsibility for how our own insecurities influence our clinical decisions.”

Doherty is clear and upfront in saying that there are clients, such as highly suicidal clients, who will fare better if they are in the hospital than outside. It however rues the fact that numerous hospitalization decisions are made out of a sense of anxiety. He acknowledges the deep seated fear that many therapists have – that they cannot bear the thought of their client committing suicide. However, he places his loyalty to clients on a higher pedestal than loyalty to the fear of consequences of suicide.

Doherty further surports the strong-willed statements he made

We are presently engaging with the issue of forced intervention in mental health and why such interventions are counter-indicative to both the health and the liberty of persons living with mental illness. Whilst danger to self and others is put forth as one explanation for the use of forced intervention, the loss of ability to make decisions is put forth as the other explanation. Any person can, by a Mental Health Advance Directive state how they want their care and treatment to be organized, in case they lose the ability to make or express such decisions. This directive can state both what the executing persons want or do not want. If they so desire, and primarily to ensure that, the wishes recorded in the directive are duly executed, the executing persons can nominate one or more persons as their agents to ensure that their treatment happens in accordance with their directive. The executor of the Directive can anticipate as many questions on which decisions may be required and give instructions for the same. The executor can also decide how much finality they wish to confer on the Directive and in what circumstances would they wish to change it.

It is pertinent to note that whilst any person can execute and register a mental health advance directive, the need to execute such directives is primarily impressed on persons living with mental illness. And this is the case even when for example the reasoning given by the legislature of the State of Michigan for observing May 2006 as Advance Directive month could be equally appropriately be extended to Mental Health Advance Directives. The House Resolution stated that Advance Directives were required because “each of us values dignity, independence and self determination. There are many circumstances in which we may lose the ability to express our decisions about our medical and personal care”. If persons sign an advance directive then such decisions can be made in accordance with their will without “the need for guardianship, a legal proceeding by which an individual loses many basic rights”. The House thus adopted the aforementioned Resolution in order to overcome the informational and emotional barriers to the signing of advance directives.

The Bazelon Centre of Mental Health has hosted a template for a Psychiatric Advance Directive on its website. This Directive has been formulated to enable persons living with mental illness to ensure that their treatment is carried out in accordance with their wishes, without questioning or problematizing the legal attribution of incapacity to persons living with mental illness. I accept that all persons including persons living with mental illness can lose the ability to make decisions with regard to their treatment and care; and persons living with mental illness like all other persons need to take steps to protect their dignity, independence and self determination. However such steps are not especially required by persons living with mental illness and the standard form for a Mental Health Advance Directive should be constructed in acknowledgement of the fact. I have therefore reworked the template formulated by the Bazelon Centre as a form which, can be used by persons who so desire, to Advance Direct their mental health treatment. This form has no legal status in India today, insofar as there is no legislation by which advance directives have been recognized or a procedure for their registration specified. However section 18 (f) of the Registration Act 1908 gives the all inclusive residuary option to register any document. This section can be employed to register advance directives. In availing of the registration option, executors of advance directives would stamp their will with the solemnity and formality of law, whilst retaining the autonomy to organize their own affairs.

Advocacy News

On the 3rd October 2007, in the Bombay High Court, there was petition [No 89] about foreign adoption by a mentally ill woman from Bombay who had delivered a child. The child was kept at an adoption centre for care and treatment. But the adoption centre had directly filed a petition to the high court, that mother of child was mentally ill and that she was not capable of taking care of the child; and so, for the child’s better future it is good if the child is given for adoption. But the High Court gave a very good and sensitive decision that child can not be adopted because the woman can take a decision about her child and this case was dismissed on the ground that, mental illness is curable and only abandoned children or parents who are not capable of taking care of children can be put up for adoption.

But there are many mentally ill women who are vulnerable, and they can be in a position where her parental rights can be violated. And if she became pregnant, due to any reason she can be in a position to have no right over her child.

Motherhood is one of the beautiful and happiest moments of any woman’s life but it is not so for many a woman, if she is unwed or if the child is born out of wedlock. There is much social stigma attached to these.
Mental Health Act, 1987, Chapter 5 Section 52 clearly says that if a person is mentally ill, the person is incapable of taking care of himself or of managing property; or incapable of managing his property only. And S 53 says to appoint a guardian to take care of him; S 54 says to manage his property.

According to S 53, the guardian of the mentally ill person is not the guardian of mentally ill persons’ child or children. But it is assumed that the guardian has the right to take a decision on behalf of the children of a mentally ill person, which is not true. In many cases of mentally ill women, if they are became pregnant due to any reason or child born out of wedlock, many times the family takes the decision that child should go for adoption or the family forces the woman to surrender her child.

Women are not counseled on this topic. It is believed that it is better for the child’s future if he / she can go for adoption; and that she will be selfish if she wants to keep her child with her. The women are not told about their rights, they are not told about other options. And most importantly, after relinquishing her child she will not have any further contact with her child, ever.

We need to keep these in mind, when we say that it is for the child’s better future it is good to go for adoption. We also need to think about this fact that, in India all adoptions are confidential or close adoptions. And a biological mother has simply NO opportunity to know where her child is, after she has signed the relinquishment document. So after relinquishing / surrendering the child, women and child will lose all contact with each other.

The other most important thing is that, the Mental Health Act doesn’t say anything about what should be done for mentally ill women’s children and if the woman had a child without marriage. There are many wandering mentally ill women who became pregnant, and they are in the mental hospital and their children are at some children’s shelter home. In many cases, the women want to keep their child with her, which is her right. The authorities give the child away in adoption without consent.

There is debate on this issue that women, if mentally ill, is not able to take care of herself, then how she can take care of her child? Many times it is said that mentally ill women become violent, and so they can harm their children. Here we are talking about a very sensitive issue of mother and child. It is every mother right to take care of her child and raise her child. When she is not in the position to take of her child, she can stay at the institution which should take care of both the woman and the child.

Of course, we need to know that, mental illness is curable, and with proper treatment it can be cured. But here the issue is not only of care, treatment and shelter for child. We need to think about mother and child’s emotional states. Every mother and child has the right to know about each other and live together. That is very natural. How can the mother and child live the rest of life knowing that they have lost each other forever, how can they deal with their loss, grief, sorrow, and a very natural desire to meet each other. Can giving a child for adoption by force solve these rights issues……..?

Freedom in the mental health scenario is hidden or an unseen factor as far as I am concerned. I strongly emphasize on that because I am psychologically strong. When I am in a crisis situation I can think about basic principles of the facts there and I can see others’ problems and their roles. It helps me to see the naked truth about the situation. Most of the time due to normal/abnormal terms, professionals give some space to function but they always try to make corrections in behaviour in comparatively fast methods so that it is acceptable by the society easily. In the real sense they should think about what in the reason behind this behaviour.

To achieve emotional stability, I have experimented on myself several times and I have also been successful at it. But I never wanted to do that in the conventional way. My parents pushed very hard for me to go the conventional way. Because of that I started looking at everything in a very negative manner. I couldn’t just do what was the demand of the hour. My parents had made me into a newspaper of the living room. Anybody came, read and gave their unnecessary free advice. That probably came out of their hopelessness.

From time to time, my parents kept looking for flaws in me, nagging me about it and wasted a lot of time on that. Because of which I failed to bring out my inner strength and resilience. As a result I became more introvert. I didn’t feel the need to indulge in emotional sharing with anyone under any circumstances. I worked by myself on my shortcomings without involving anyone else in it and in turn the misunderstandings about me kept increasing. I ignored what others felt about me and kept myself pleased with what I felt about myself. I yearned for emotional happiness more than materialistic things because of which the differences just increased.

Except F M, each one who tried to understand me failed in that attempt. She familiarized me with each individual’s responsibilities and duties through my perspective. She was aware that my dependency was not superficial and knew how much freedom I should be given. Each individual has her / his abilities and they keep changing but I was not interested in such a long list of responsibilities and this she understood very well. She understood my need to get involved in intellectual level work. These days what my parents expect out of me is at a moderate level but till the age of 27 ½ I had a strong feeling that I wasn’t born to just fulfill my parent’s dreams.

F M had accepted my rash and slang manner of talking. Once, while we were in the process of building rapport, she asked me how I was feeling and asked me to share without any hesitation and I told her that “When a prostitute who has been asked to do several acts for hours together with so many people and then is asked what interests her. The way she feels at that moment is what I am feeling right now”.

Her trust in me and the freedom she gave me, won me over. In the beginning whatever small mistakes I made, she was careful not to immediately pass comments on them but rather allow me to say. Whatever she said at the right times helped me clear my thought processes. While building rapport with me, she explained that psychiatrists/psychologists have custom-built questions and there are several reasons for it and also have custom-built answers. She also explained that there are a lot of people here whom I need to give time to and she asked me whether I would be willing to use my potential there. She made it clear that she would not force her theoretical knowledge or practical experience on me and that my non-hesitant and to the point manner of speaking would not even allow it to be forced on me. In my interactions with my family in the past 20-22 years they has a controlling and skeptical attitude of ‘handle with care’ – I did not see this in my interactions with her. I used to talk in-depth about my family as well as with moderate seriousness about my life but why it was not working was something she experienced and understood.

In my personal relationships I’m very comfortable, but when my family gets involved in it, it’s very difficult to maintain a free and fair relationship. She tried to explain this in the beginning as a complex that I’m experiencing but later she, from her experience, accepted what I had to say. She guided / encouraged me to mould myself about how I can survive in a contaminated atmosphere.

The therapeutic relationship that develops during counseling is very helpful. But it doesn’t give you a lot of life answers. But it definitely helped me start that journey and mould myself to survive.

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I recently met a person, Chandra Fowler, working in an organization which supports user / survivor work in the UK. We talked about how the systems in the UK are different from here in India. What struck me most were the new legislations being implemented which are taking forced treatment, previously restricted to the institutions, into the community under the name of ‘Compulsory Community Treatment’.

I started to question then, which system was better and more conducive to freedom. Does the more chaotic, unplanned, unregulated, existing Indian system give more freedom to a person with psychosocial disability or the over-structured and progressive system of the west?

The dilemma still persists but here I would like to explore and understand the circumstances in which forced treatment operates and what are the experiences of persons undergoing these inhuman means of forced ‘treatment’. At the Center for Advocacy in Mental Health, Pune, I’m involved in an activity called the Archives, which creates a space for persons with mental illness or distress to share their stories. The Archives provides a space to share emotions, experiences, as well as creates a political space to narrate experiences with the mental health system.

The Archives have made evident the very stark experiences of persons with mental illness. These experiences are mainly in the context of the mental health system and the abuses faced by individuals who have accessed these systems. Freedom within a system means that the system presents choices before the individual so that they can take informed decisions about their lives. But this is not how things work out at all. The system generally equates mental illness with being unable to make your own life decisions. When an individual is fitted into certain diagnostic criteria, force is executed at various levels.

When it is first understood that an individual in the family is suffering from a mental illness, that individual’s right over his/her life is taken away and persons with apparent complete capacity take all the further decisions. These decisions range from the nature of treatment to what they can and cannot do in their daily lives. The treatment is generally limited to medication to reduce intensity of the symptoms. This form of treatment gives little choice to the “patient” in terms of either time or options where they can discover their own method of healing.

When others choose treatment, it is usually based on what is most convenient to them rather than what is appropriate and sensitive to the one in distress. Here, it is assumed that medication necessarily improves the outcome without actually exploring other less intrusive and less painful options.

When treatment is forced it defeats it own purpose of being a path of healing and recovery. An environment is conducive to healing when the space is safe, secure, provides atmosphere of freedom and dignity and gives the individual the right to choose for her/himself.

At times some “experts” can also have the authority to choose a treatment modality for a “patient”. When this expert terms an individual as a patient, the individual’s right to choose the treatment for himself or herself is taken away. What will be done with the body or mind is no more that individual’s prerogative.

The nature of the doctor-patient relationship inherently survives on hierarchy. The individual is automatically denied any rights regarding her/his course of treatment due to the very nature of this relationship. The hierarchy automatically transfers the power to one faction of that relationship leaving the other group vulnerable and subject to oppression.

Often one is told that an individual with mental illness does not have insight and is not capable of taking any decisions regarding her/his own life. There is a general disbelief in an individual’s judgment about the choices s/he would make for her/himself. This automatically leads the state or any authorities to believe that they have the right to decide for this person regarding any further interventions. This disbelief in an individual with mental illness is manifested through restricting a person by chaining her/him or by putting them in an institution.

There is a “fear” that mentally ill people are dangerous and it is for the good of the society at large that they are being restrained. What this does is that it only makes the society more unjust and inhuman but automatically takes away the responsibility of the society towards that individual. The society does not have to deal with anymore disturbance and differences. The

I was in the hospital just as a prisoner. The hospital has wired windows and nobody can say that I’m jumping off and go. These people used to just give me tablets. I was never sick in my life and I never used to have tablets on a regular basis. I used to hate it. They used to watch me and they used to say that you have to have this. I was just having my tablets and eating my food and sleeping .. getting up… sleeping .. getting up… having a bath… After some time I realized that my fingers didn’t work properly and trembled. I was feeling very weak and working was becoming very difficult for me. I did not know what was happening to me and nobody was visiting me at all. I think I used to ask questions. Then I remember that many times in the hospital, I think it was on every second day basis, I was unconscious. I did not know what was happening.

Forced treatment is not only about forcefully receiving treatment but it also means denying someone a treatment modality that they want and may benefit from. Denial of treatment not only leads to exacerbation of the problem but also leads to stagnation in the condition of the individual rather than an effort in the direction of healing.

The observation ward has cells. There are about six to seven cells attached to it. They don’t give the injections and then the patient gets violent and so he is kept in the observation ward. He gets more violent because he is kept in a lock up. The injections are not given. That’s another thing. They just tick mark that they have given it. Some people are not sincere.

Everybody goes home after half day. Psychiatrists also go home. In the afternoon it is so boring in the hospital because there is nobody there. Doctors also leave by 2. All of them have private practices. There is nobody to provide any activities. Occupational therapists, psychiatric social workers also go off at 2. Through out the day we do nothing. We used to just roam around the hospital or sleep. There are very bad conditions.

As to my knowledge I haven’t seen anybody there sitting and counseling patients. If anybody wanted to talk they used to. But then it wasn’t exactly like counseling.

There wasn’t enough space for everyone in occupational therapy. There is one room and some people come and make bags, some people do embroidery, and then these occupational therapists just observe the patients and probably in the file mark that she is doing well or whatever. Then they weigh the material and decide what remun-eration she should get out of that. They see all that.

There is a thin line between not denying treatment and forced treatment. One needs to understand the nuances of the issue like freedom, rights, sensitivity, and choice before falling back on any form of treatment. Also, what needs to be explored are the alternatives to forced treatment. While working on the Archives what has come through strongly is the dire need for a change in the way the system functions, abolishing some of the old and barbaric forms of treatment and looking for user led treatment options which give dignity, respect and freedom of choice to the individual.

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“Oral histories archive” is a collection of mental health experiences of people. This is based on our belief that people who have undergone mental distress have memories, histories, personal experiences and a coherent story to share.

We invite you to connect with us and share your experiences, your story, creative writings, poems, photographs, music, arts and artefacts with us. We are also interested in the political materials you may have published, such as posters, fliers, campaign letters, etc. Users have also willingly contributed their correspondence with their therapist or doctor. We share this invaluable collection with the community through our library and documentation center.

We hope that the stories will mobilize user / survivors in India and the south Asian region, and will bring us courage and self-confidence in speaking for ourselves.

For further information regarding the Archives, please contact Maitreyee / Puja / Seema at the Center for Advocacy in Mental Health, Pune.

Ph: 020-26837644 or 26837647

E-mail: maitreyidesai@gmail.com, pujamodi@gmail.com.

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The Bapu Trust for Research on Mind & Discourse is facilitating a 6 month visit by Mr Gábor Gombos, from Hungary. Gábor Gombos, a former theoretical physicist and survivor of psychiatry, has become a world-renowned advocate for the rights of persons with psycho-social disabilities. For over a decade, and until 2006, he chaired Hungary’s only network of user organisations (Hungarian Mental Health Interest Forum). During this time he liased with self-advocacy groups and local user NGOs with the relevant authorities, including local municipalities, members of the Parliament and the national govenment. The Forum had gained official recognition by the legislature and local and central policy makers while maintaining its grassroots character. Gábor focussed his efforts to train self-advocates and local advocacy groups. He and the Forum has extensively contributed to recent legislative reforms in Hungary, including the legal ban on the cage beds that had been widely used in psychiatric facilities to restrain people. He also contributed to relevant amendments to the social care act and to the development of standards for alternative, non-coercive, community-based services for persons with psychosocial disabilities.

The Mental Disability Advocacy Center in Hungary advances the human rights of children and adults with actual or perceived intellectual or psycho-social (mental health) disabilities. Focusing on Europe and central Asia, they use a combination of law and advocacy to promote equality and social integration. Gábor is Senior Advocacy Officer at MDAC, leading their intergovernmental and national level advocacy. In this role he has extensively advised intergovernmental bodies, such as the Council of Europe, the European Commission and the United Nations on disability rights issues and has participated as a delegate of the civil society in the work of the UN Ad Hoc Committee which drafted the new Convention on the Rights of Persons with Disabilities. Gábor was profiled in the project, Speak Truth to Power as one of the 51 select leading human rights defenders around the globe. He is a Fellow of Ashoka: the Global Association of Leading Social Entrepreneurs.

Internationally, Gábor acted as chair of the European Network of (ex-) Users and Survivors of Psychiatry, a European umbrella of national NGOs of persons with psychosocial disabilities until 2004. Currently he serves as deputy chair and regional board member for Central Europe. Between 2001 and 2003 he extensively worked as a consultant in Kosovo to help self-advocacy initiatives.

Need for this exchange

Persons living with a mental illness can be the best advocates for themselves as well as for their peers. This potential is hindered by many obstacles, each of them rooted in the stigma associated with disabilites in general and with psychosocial disabilities in particular. Discrimination against persons living with a mental illness affect every aspect of private and public life. Having a psychosocial disability or even a family member with such a disability is a taboo in many societies including India. In most societies persons with psychosocial disabilites belong to the most marginalised, disenfrenchised, disempowered groups of people, who are kept invisible, whose voice is not heard and not listened to.

While in India important steps have been made by a number of disability rights activists, human rights defenders and academics working in the field, the movement of self-advocates, advocates who are persons living with mental illness themselves, has not yet started. India has much potential to approach psychosocial disability in an innovative way, partly based on its traditional healing, spiritual sensitivity, and the like.

The objectives of the international exchange:

Gábor Gombos’ work in India has the following objectives:

• To create a non-combative, safe environment where public discourse on the need for and viability of self-advocacy of persons living with a mental illness is encouraged.
• To facilitate such a discourse in different settings and with different stakeholders.
• To engage as much as possible in this short period of time, with the in-country processes of CRPD implementation with respect to various Acts and laws.

• To develop and test training and audio visual materials that can be used by Bapu Trust to train supporters and future self-advocates.
• To inform stakeholders on the issues by doing the activities, including speaking arrangements, lectures, media appearances and the like. All these objectives are planned to be realised through a collaborative and participatory process.

Plans for Gábor’s visit

Gábor aims to work with a wide diversity of constituencies in the mental health sector while he is here. We are looking for collaborations where Gabor can actively interact with groups of users and survivors of psychiatry, and other mental health sector leaders. He will develop and conduct workshops on Self advocacy for persons with psychosocial disabilities, for various mental health constituencies. Training programs for care givers using the Self Advocacy model is also being considered. The Bapu Trust is also happy to receive collaborative proposals for public lectures and seminars from research and training institutions, particularly relating to the CRPD, on which he has expertise. Strategic or policy level meetings, consultations in different parts of the country with legal, research and human rights institutions would also benefit from his contributions.

Organisational support for the Exchange:

Bapu Trust for Research on Mind & Discourse, India.
HQ: Survey No. 50/4, Plot No. 9, Kapil Villa, Ground Floor, Kondhwa Khurd, Pune 411 028
(T): 0091-20-26837644, 26837647
Email: info@camhindia.org, wamhc@dataone.in

If you wish to contact local collaborators, write to Bhargavi Davar (bvdavar@gmail.com) or Amita Dhanda (amitadhanda@gmail.com)

URL: www.camhindia.org

Imagine you leave home in the morning to visit a court, where you are contesting a civil case, and you land up in a mental hospital later, that very day due to some occurrences at the court, instead of returning home- Weird? Why am I asking you to imagine something like this, will be your question… right?

I would have probably found this question equally weird, was I not a witness to an incident of this sort. I remember being so scared that Malvika [(name changed), (the woman who experienced forced institutionalization)] will be stripped off her most basic rights on being institutionalized, angry as to how could a “Justice dispensing system” be so unjust to an individual and family, helpless where my belief in rights and dignity and strategies to restore the same was yielding no results. Eyes still moisten up and head spins round when I recall that day. It happened over 10 months back but this is the reaction that the gross memories still evoke in me.

To lay context of how I got involved in this is that I work with an organization that carries out psychotherapeutic interventions at one of the courts in Mumbai. This incident took place in the same court. I was called by the court to manage an “emergency situation”- the situation being that a woman had become aggressive and was verbally as well as physically abusing the police, arguing and shouting at the Judge etc. She was “not listening to” anyone attempting to pacify her, be it the court staff or other litigants of the court. There was no one from the woman’s family accompanying her, on the court premises that day. The woman had a divorce case filed (by the husband) in the court, but that day was not her court date. When I reached there, she was being taken away by the police.

I later found out that her name was Malvika. Stories of Malvika being affected by mental illness were coming in abundance. In fact one staff member termed her mother “half mad” as they had been telling Malvika’s mother for long to get her treated with psychiatric medication; But the mother always denied the option saying that nothing was wrong with her daughter.

The Judge asked me to follow up the case by attending to the client, to help her calm down and to accompany her to the Magistrate’s court, and to see to it that she was admitted to the Mental hospital. “Mental Hospital”??!!! I said to myself. My body and mind began sending so many warning signals to each other as soon as I heard of it. Trying to not make my internal alarm so evident and not sound ridiculous over the institutional mathematic that the court had worked out, I explored with him the possibility of the court officials accompanying her to a psychiatric OPD or ward. I added- “It is not custodial and she could be discharged from there once she was feeling better.” I told him that there were instances where people had found it difficult to come out from mental hospitals even after they were doing much better and languished there for long time. The Judge was quick to cut me short and to say that people (of course referring to me) held a lot of misconceptions regarding the mental hospital. He added that there were provisions made for such admissions under the Mental Health Act1. He said that this would ensure that she was getting treated properly there. He added that he was not looking at short-term and patch work treatment but rather a comprehensive treatment which he felt would best happen at the mental hospital itself.

I got my hands on the court order / (letter by the Judge, carrying the seal of the Court) addressed to the Chief Metropolitan Magistrate. The order briefed the magistrate about the

incident that had taken place at the court. The Judge stated in the letter that he strongly believed that she required immediate medical help and probably required admission to the mental hospital also. Hence he was sending her to the magistrate so that he could pass the required order. He asked him to kindly do the needful and oblige. In the meanwhile Malvika was taken to the nearest police station- she was now in police custody- officially.

In the meanwhile, a court staff traced the client’s details and got in touch with the mother and told her about what had happened. She asked them, not to take her daughter to any hospital and that she was on her way and would reach the court as soon as possible. After she reached the court, she was taken to the Judge, so that she could explain to him that she would take care of her daughter and did not wish a mental hospital admission. When the Judge was told about her, he refused to even look at her and said that he had nothing to do with what she had to say and that he did not want to talk to the mother. The mother, me and a court official went to the police station to meet Malvika.

From there on, she was taken to the Sessions court and presented there. Her younger brother, who had got to know about it while at work, also joined us there. When the magistrate spoke to her and asked her questions, she was already in a much better state and answered all the questions. The family also told him that she was already undergoing treatment with a psychiatrist who was associated to a government hospital. He asked them if there was any proof of her being on psychiatric medication. They said that they were not carrying any prescriptions at that time, since all this had happened all of a sudden. The magistrate passed a reception order, committing her to the mental hospital. While the Magistrate was dictating the order to the steno, the client could understand some things about it and it led to her getting into an argument with the magistrate. This led to another episode of aggressive behavior that took a lot of our collective energies to pacify her. It also led to Malvika verbally abusing the police constables and also getting equally abused by them.

Malvika was taken to the mental hospital at 11 p.m. after all these legal and administrative formalities were over.

At 11 p.m. while she was being taken inside the hospital, she kept pleading to the officials that she would “behave herself” from thereon. She also told me that the court had been so unjust to her (by not providing her with interim maintenance, not helping her with a job) for 4 years. When she misbehaved with them for once, she was sent away to the mental hospital. “Did I punish them for not giving me justice? But they have punished me straight away”, she said.

Malvika stayed in the mental hospital for 14 days. Her mother would go and sit at the hospital gate every morning hoping to atleast catch a glimpse of her daughter if not meet her. However the walls of the institution were overwhelmingly big and robust, to let her in. She would talk to various employees, ask them for a way out of that place; send undergarments and sanitary napkins for Malvika (she had started menstruating the day she was institutionalized and of course needless to say that the mental hospital she was in, did not provide sanitary napkins and undergarments). Her brother, me and my colleague would talk to the medical officers there, the woman psychiatrist treating her, and the senior psychiatrist to explore some way out of this.

Finally with the family’s consistent untiring efforts to get her out of there, on the 14th day after her institutionalization she walked out. She constantly kept telling and asking- “I don’t want to come back here. Never. They will not put me in the hospital again, na?”

For the next one month Malvika was in a government hospital “under treatment and observation” since the court wanted to ensure that she was being treated “comprehensively”. So another month of captivity, though not quite like the mental hospital.

Malvika is home now with her family, doing much better as home is where her heart is. But she has stopped coming to the court - I don’t think I need to clarify why. Her interim maintenance has still not started. Her husband who has filed for a divorce was ready to pay alimony of 2 lakhs (before this incident). He now says he will pay only 50,000/- The court itself has done the honors of proving that his wife Malvika has mental illness, which has made seeking divorce for him very simple. Why would he pay Malvika 2 lakhs then?

I wonder at times, what Malvika could have been signifying by being aggressive on court campus. Later in one of my many conversations with her she told me that she had come to the court for creating a noise. Deliberately. She called it “Hungama” And she did just that. Her case had been in the court for the last 4 years and her interim maintenance had not started yet. How was she to support herself financially? She had been hunting desperately for a job (Malvika is a Ph D in Physics), but her identity of being mentally ill was most stark for everybody. So no job. She was labeled with mental illness, and that identity was big enough to hide behind itself all other virtues, reasoning and capacities that she had in abundance. Her biggest identity was that she was “mentally ill”. Yes now I know! This is what went against her! Now I know. That is why they sent her there.

Radhika Sharma works with Seher, a psychotherapy program of the Bapu Trust, and can be contacted at baputrust.mumbai@gmail.com

ooo

course of minor tranquilizers accompanied by in-home crisis intervention (Mosher & Hendrix, 2004, p. 303).

In sum, the Soteria idea has contributed to the fact that milieu- and interpersonal aspects of treatment, especially in German-speaking countries, are taken a bit more seriously.

In the past 15-20 years, we have been continually accompanied, overtly or not, by the Soteria model. It has become a measure of humane treatment methods, a humane approach towards patients, even a measure of the appropriate conduct of doctors (Marneros, 2001, p. 219).

Current Assessment and Outlook

The Soteria-model has provided a notable impulse for rethinking the therapeutic milieu within the acute care system, but has so far not been translated into actual services that would be available to a significant proportion of individuals who might benefit from them. In addition, several program models have emerged that have implemented some of the Soteria-elements within routine services.

Such a treatment model could become a rallying point for service users, friends and relatives. Professionals and family organizations still seem thwarted by the economic dependencies from the pharmaceutical industry that have invaded the entire medical system in an insidious fashion (Angell, 2004), as well as by one-sided beliefs determined by biological reductionism. There is a growing international movement to promote and disseminate Soteria (i.e., www.intar.org, www.soterianetwork.org) and similar alternative treatment programs, because it may offer an alternative treatment for people diagnosed with schizophrenia spectrum disorders (Calton, et al., 2007).

Thus, there is hope that the pioneering work of Mosher (who proved that humane, non-medical support is the best way to help people undergoing severe emotional distress), will continue to provide fuel to an alternative mental health reform movement until alternatives to biological psychiatry are available.

Sources

• Angell, M. (2004). The truth about the drug companies: How they deceive us and what to do about it. New York: Random House.
• Calton, T., Ferriter, M., Huband, N., & Spandler, H. (2007, June 14). A systematic review of the Soteria paradigm for the treatment of people diagnosed with schizophrenia. Schizophrenia Bulletin Advance Access, doi:10.1093/schbul/sbm047.
• Hirschfeld, R. M., Matthews, S. M., Mosher, L. R., & Menn, A. Z. (1977). Being with madness: Personality characteristics of three treatment staffs. Hospital and Community Psychiatry, 28, 267-273.
• Marneros, A. (2001). Stellungnahmen von unabhängigen Experten. In L. Ciompi, H. Hoffmann, & M. Broccard (Eds.). Wie wirkt Soteria? Eine atypische Psychosenbehandlung kritisch durchleuchtet (pp. 215-219). Berne: Huber.
• Mosher, L. R., Hendrix, V., und die Beteiligten des Soteria-Projektes mit D. C. Fort (1994). Dabeisein: Das Manual zur Praxis in der Soteria. Bonn: Psychiatrie-Verlag.
• Mosher, L. R., Hendrix, V. with D. C. Fort (2004). Soteria: Through madness to deliverance. Philadelphia: Xlibris Corporation.
• Mosher, L. R., & Menn, A. Z. (1978). Community residential treatment for schizophrenia: Two-year follow-up. Hospital and Community Psychiatry, 29(11), 715-723.
• Mosher, L. R., Reifman, A., & Menn, A. Z. (1973). Characteristics of nonprofessionals serving as primary therapists for acute schizophrenics. Hospital and Community Psychiatry, 24(6), 391-396.
• Runte, I. (2001). Begleitung höchst persönlich – Innovative milieu-therapeutische Projekte für akut psychotische Menschen. Bonn: Psychiatrie-Verlag.

Copyright by Peter Lehmann 2008

Contact: www.peter-lehmann.de/inter