Gábor Gombos in India

Back in Budapest, Hungary

2008-12-02T14:57:00.002+05:30

After an intensive six months life and work in India I returned back to Budapest last Friday. I shall gradually update the blog with important events that took place in November in Pune, Chennai and Hyderabad. I am also planning to open a new blog with the lessons I have been learning, professional and personal.

Thanks to all people in India who provided unbilievable support, friendship, companionship, peership, colleaguiality and more.

Special thanks to Bhargavi Davar, director of Bapu Trust Center of Advocacy in Mental Health, pune, a peer, experienced manager, scholar, activist, survivor. I wish I could express my gratitude to her and apologize for all the troubles I have caused.

Thanks to all people at Bapu, including Yogita, Sandeep, Hari, Ketki, Prashan, the Mumbai team.

Thanks to Elizabeth.

I am grateful to Amita, founder trustee of Bapu, professor of Law at NALSAR, colleague and friend.

Choice and Self-Advocacy: Day 2 of the User Workshop

2008-10-26T10:11:00.009+05:30

Day 2 of the National User Workshop was attended by 23 users/survivors.

The central themes of the day were: What makes self-advocacy unique among the various forms of advocacy? Why choice is crucial to self-advocacy? What skills and knowledge are useful for self-advocates?

The day started with my presentation on self-advocacy. Much of the learnings came from the experiences participants gathered on Day 1. Communication and negotiation skills were illustrated through role play exercises.

The afternoon role play session illustrated why self-advocacy is unique and why choice is crucial to self-advocacy. The scripts for the role play were:

User choice for opening an account in a bank

You are a user of mental health services. You are not fully employed and have had a difficult time in finding suitable full time employment. You live in a shared apartment with three other users. You have a disability certificate from the local authority. With this, and photographs of identity, you present yourself for the meeting to a senior bank officer with a request for the opening of a bank account.

You are a senior officer in a bank. You have the responsibility of investigating all applications for new accounts according to the new “Know your customer” bank policies. A person with mental problems has also applied for a new account and is now standing before you, waiting for your response. The person has a disability certificate which says “schizophrenia”. You have to make a response to the applicant.

Group house on rent for users

You and your friends from your user support group have decided to rent a house and live independently. You have found a place that you can rent and which you can afford together. The locality is also good and it is close to everybody’s place of work. You are not employed yet, but are hopeful. You take the responsibility of talking to the land lord about renting the flat for a year. You have a meeting with the landlord today. You have to prepare your strategies for clinching the deal and meet him.

You have a small flat in a good locality. You are looking for people to rent it out to for a year. Some young people have approached you with a reference from a nearby NGO. The NGO works with mentally ill people. You have promised to talk to them at least, saying that you will keep an open mind. You can give them only 10 minutes, though, because you have a very important meeting after that. You have to decide what to tell the young people and meet them.

Psychiatrist and medications

You have been on medication with a diagnosis of manic depression for over 2 years. You are having many uncomfortable side effects, including putting on lots of weight. The doctor listens to all that you say patiently but gives you the same hand full of drugs. You don’t know most of the drugs, excepting for one anti depressant. You are fed up of taking all these unknown drugs which is keeping you dazed. You want to talk to him about the medications today.

You are a psychiatrist and you have to see at least 25 patients in the evening today. A young person is sitting before you telling you how she is now. She is manic depressive and you have been treating her for the last 2 years. You listen patiently but you think that she is over talkative and manic. She is also not willing to accept her illness and she needs these medicines. You psychoeducate her and give her the same prescription as before.

Within the family for inviting user to marriage / festival or other celebrations

You live with your family after you received a psychiatric diagnosis. There is soon to be a marriage in the family. Your sister is getting married. Last time there was an important function they sent you to the friendly mental health center close by for a few days. You could not even call up your family during your stay there. You don’t want them to do that this time. You want to attend the wedding. After all, she is your sister and you care.

Your adult child has been living with you and your family after he received a psychiatric diagnosis. There is soon to be a marriage in the family. Your daughter is getting married. Last time there was an important function we sent him to the friendly mental health center close by for a few days. It was a sad thing to do, but we did not have a choice. We missed not even being able to contact him. This time too we will send him there. After all, she is the only daughter we have and we want nothing to go wrong.

Carer's perspective and interest is not the same as users'.

2008-10-26T09:44:00.003+05:30

One of the most important outcomes of the first day of the National User Workshop was that the care giver group (who attended the first day of the three day event) understood and expressed that care givers' perspectives and interests are not the same as users' interests and perspective.

This discovery came up as part of an interactive group session, in which participants were asked to consider everyday situations and decide whether that was something they would have liked for themselves or not. Then the groups were asked to deliberate on wether the situations they would prefer for themselves is typically present and accessible for users of psychiatry in India. If not, why not? Similarly: are the situations participants saw as undesirable typically part of users' life? If yes, why?

Life situations elaborated upon in the session included:

People help you in ways you don't like.
Being able to decide about your holiday programme.
People don't believe what you are telling them.
Doctor talking about your health to your relatives not even looking at you while you are there.
Your opinion about a service is regularly sought for.

Many participants, typically the care givers, felt that users should accommodate the expectations of the larger society or otherwise they will fail in becoming equal members of the community. For example, if they do not get used to wake up early in the morning, they will likely loose their jobs, in spite of the heroic efforts on behalf of their care givers to mediate between the user and the employer. This observation gave an opportunity to talk about reasonable accommodation and that the UN Convention on the Rights of Persons with Disabilities clearly identifies denial of reasonable accommodation as discrimination. Not the person but society needs to accommodate settings, environments, procedures so that people with disabilities can equally participate. Later beginning of working days, flexible working hours are examples for reasonable accommodation users may demand in the employment context.

Some participants had more than one identity: they were both carers and users themselves. It was interesting to see and reflect on how these identities interacted in the same persons' minds. A young psychiatrist came to the workshop as a care giver, then understood that his user identity was stronger and continued his participation and valuable contribution on the following two days.

National User Workshop: Pune, 17-19 October

2008-10-26T09:28:00.002+05:30

The three day event was a great success. Day 1 was a joint event with care givers and users/survivors of psychiatry. 42 people attanded, participated in and contributed to the proceedings. The spirit was constructive, the sessions were interactive, besides the conventional verbal forms non-verbal of communication was also encouraged and space was given to it to enable everyone to be part of learning from each other.

Day 2 and 3 were for users and survivors only. More than 20 peers participated in being with each other, listening to each other and learning from each other. Key themes covered what self-advocacy may mean in the mental health context, why choice is crucial and what are the links between self-advocacy, peer support and empowerment.

The spirit of co-operation was exceptionally strong. Typically, in the West, this is something we first need to reach. Here the willingness to co-operate was a given from the first minute of the workshop. It was then not too surprising that most sensitive issues came soon and people could address our own stereotypes and prejudices in a self-reflective way.

The three days provided ample opportunity to learn. To learn through experience and sharing. There was fun and there was silence, there was a lot of interaction, at various levels among the participants. There were moving minutes and there was laughter.

All agreeed that these 3 days just started something that calls for follow up and continuation.

Buliding Leadership Among Users of Psychiatry: Training on Self Advocacy

2008-10-17T00:05:00.005+05:30

From today till Sunday Bapu Trust runs a three day training on self advocacy in mental health. The programme is as follows:

17th, Friday, Open House

9.30-10 AM Registration

10-10.30 AM Introductions, Norm setting –Bhargavi

Objectives- Gabor

10.45 AM – 1 PM New Life Styles : A workshop* Gabor

* Separate groups for care givers and user / survivors

Lunch Break

2.30 PM – 3.00 PM – Healing Drums Circle -- Bhargavi

3.00- 3.15- Film

3.30 PM – 4.45 PM –Re-scripting Life-I – A workshop

Gabor

Concluding session – Gabor and Bhargavi

DINNER at a local restaurant

18th October, Saturday

9.30-11.00 AM – Self as Myth- A personal Journey - Bhargavi

11.15- 1 PM – Lecture by Gabor Gombos on Self Advocacy

Lunch Break

3.00 PM – 5 PM – Rescripting Choice – II A workshop

Gabor

6.30 PM – A Film

19th October, Sunday

9.30-10.30 AM - Reflections Gabor and Bhargavi

10.45- 1.30 PM – Empowerment – Gabor and Bhargavi

Lunch Break

3 PM – 3.30- Bamboo Dance

4 PM – 5 PM – Resolves and resolutions

5 PM – 5.30 PM – Concluding session

Once more on Global Mental Health Movement

2008-10-15T19:28:00.002+05:30

In early September I have already raised my concerns about the Global Mental Health Movement. Now there are new developments which, unfortunately, seem to confirm my worries. The movement launched its website. According to it:

The Movement for Global Mental Health aims to improve services for people with mental disorders worldwide. In so doing, two principles are fundamental: first, the action should be informed by the best available scientific evidence; and, second, it should be in accordance with principles of human rights. The Movement is a global network of individuals and institutions who support this mission.

The Movement has emerged from the recent Lancet series of articles on Global Mental Health. Its goal is to implement the final Call for Action article of the Series which demands the scaling up of treatments for mental disorders, for the human rights of those affected to be protected, and for more research in low and middle income countries. We believe that the Movement for Global Mental Health will facilitate a vigorous and sustained response to the Call for Action. Furthermore, the Lancet will designate mental health as one of its ‘campaign focal points’ in the coming years. Ultimately we aim to ensure that, through a range of activities, the Movement for Global Mental Health takes its place alongside those promoting HIV/AIDS treatment and maternal and child survival, and is identified as one of the great public health successes of our times.

The Movement has set up an advisory group. This consists of 57 experts. Let us make a little statistics. 3 of the 57 members come from the user community, which is 5.3 per cent. 27 experts represent the academia, mostly biomedical psychiatry, this constitutes 47.4 per cent. 31.6 per cent of the advisory group come from low income countries. I hold there is no need for comments to see the predominance of first world professionals in a movement that is supposed to prioritize the needs/interests of the users and of the developing world.

The material available on human rights starts with a reference to the UN Mental Illness Principles, which is an outdated document, heavily criticized by both the user community and increasingly by the UN human rights mechanisms also. There is no reference to human rights violations caused by psychiatry itself, no mention of informed consent. The UN Convention on the Rights of Persons with Disabilities is just mentioned, nothing substantive is written about its content. This is even more surprising in the light that the majority of the countries who have ratified the convention are developing countries, the supposed priority area for the Movement. Hardly any human rights information comes from the developing world.

This is sufficient to summarize: the launch of the website and the steps taken since my previous blog entry are highly discouraging.

Building Leadership Among Users of Psychiatry: Workshop in Pune

2008-10-15T10:57:00.004+05:30

Life beyond medicine

EXPERTS TO HOLD A THREE-DAY, SELF-ADVOCACY WORKSHOP FOR USERS OF PSYCHIATRIC SERVICES

Rahul Chandawarkar

Pune: Users of psychiatric services now have the opportunity to learn self-advocacy skills, when city-based Bapu Trust, a centre for advocacy in mental health, holds a three-day workshop in selfadvocacy skills for people with psycho-social disabilities at the YMCA, Quarter Gate, from October 17 to 19.
Internationally acclaimed mental health activist Gabor Gombos of Hungary will be the principal facilitator and will be assisted by Bhargavi Davar, founder-trustee, Bapu Trust. Both Gabor and Bhargavi are user-survivors of psychiatry services and will be the role models for the participants.
Gabor, a former theoretical physicist, has become an advocate for the rights of people with psycho-social disabilities. He was profiled in the project, ‘Speak truth to power’ as one of the 51 leading human rights defenders, along with the Dalai Lama and Desmond Tutu.
Gabor, a user of psychotropic medication for 15 years, experienced a two-month period of heavy depression following the death of his mother, a psychiatric patient, in a suspected case of drug overdose during a clinical drug trial in Budapest. He was nursed back to health by a close friend without any medication. This is when Gabor realised that alternative therapies were possible in mental health treatment.
Gabor, who proceeded to conduct research in the field of clinical drug trials with the help of ‘The Washington Post’ newspaper, says, “We realised that abuse was very frequent and the user’s consent was almost never taken.”
This led Gabor to join a grassroots NGO in Hungary working in the field of human rights and alternatives to conventional bio-medical psychiatry. He even chaired the European network of users and survivors of psychiatry.Today, he works as a senior advocacy officer in the Mental Disability Advocacy Centre in Budapest.
According to Gabor, the stigma of mental illness is so overwhelming and the legal regimes in many countries so disqualifying that unless users become self-advocates and present their case effectively, they end up losing jobs, feel discriminated, etc. Says Gabor, “Therefore the basic objective of this workshop is to teach participants self-advocacy skills through role plays, our own life stories and instances where self-advocacy has succeeded.”
According to him, Hungary and India are among the first countries to ratify the latest UN Convention on the Rights of Persons with Disabilities. “The Indian government will soon have to interact with organisations in this field. Usually, it is the doctors and family members of the users who end up interacting with the government. It is high time the users themselves were empowered to state their own case,” Gabor stresses.
Bhargavi Davar, a user-survivor herself, recounts the severe depression she underwent following the loss of her child. Bhargavi, who has a doctorate in ‘philosophy of the mind’ from the IIT, Mumbai, weathered the storm by exploring alternative therapies like painting, writing, physical workouts and a shift to a high protein diet. “Despite my depression, two of my books on women’s mental health were published internationally and I set up the Bapu Trust 10 years ago,” Bhargavi says. “I am convinced that people suffering from psycho-social disabilities have this great strength and capacity to use their life’s experiences to build new lives.”
Those interested in attending ‘Building leadership among users of psychiatry’ can contact Bapu Trust on info @camhindia.org or phone 2683-7644/47.

Visit to Jantar Mantar in Delhi

2008-10-15T10:38:00.006+05:30

Between 1727 and 1734 Maharajah Jai Singh II of Jaipur constructed five astronomical observatories in west central India. The observatories, or "Jantar Mantars" as they are commonly known, incorporate multiple buildings of unique form, each with a specialized function for astronomical measurement. These structures with their striking combinations of geometric forms at large scale, have captivated the attention of architects, artists, and art historians world wide, yet remain largely unknown to the general public. (www.jantarmantar.org)

I, as a former amateur astronomer was very much excited to see this beatiful and smart collection of structures.

National consultation on citizens' charter of human rights in mental health: 10-11 October, New Delhi

2008-10-15T09:44:00.002+05:30

The National Alliance on Access to Justice for Persons living with a Mental Illness [NAAJMI] was created in the year 2005 to serve as a dialogue forum and to build a bank of insights on Mental health and Human Rights, across a diversity of constituencies and stake holders all over the country. The alliance is a strong collective voice around the country demanding justice and access to justice for persons living with mental illness based on the values of dignity, respect and autonomy. Fueled by the Law for All Initiative of the Ashoka [Innovators for the Public] NAAJMI has held "Bill of Rights"(BOR) consultations in each of the four regions. Through this collective brainstorming and negotiation process, a compilation was made of non-negotiable and absolute human rights that must prevail in the mental health sector.

India signed and ratified the Convention on the Rights of Persons with Disabilities [CRPD], and with the requisite number of countries ratifying it, the CRPD has come into force on 3rd May 2008. In the present CRPD environment, various laws and policies in the mental health sector have to be rights compliant. The BORs achieved success in the incredible number of questions thrown up for dialogue and the breadth of solutions sought by various stake holders, in coming up with a consensual human rights language for persons with psychosocial disabilities.

NAAJMI partners, Bapu Trust, Anjali, and Basic Needs, in collaboration with the Human Rights Law Network and Snehi organized a two day National consultation on "Citizens' charter of Human rights for persons living with a mental illness" on 10th and 11th October, 2008 at the Indian Social Institute, New Delhi. The objective of this consultation was to invite civil society, mental health, legal and human rights fraternity to engage with NAAJMI's proposal of rights for persons living with a mental illness, in the context of law, access to justice and the CRPD.

Amita Dhanda and I facilitated the program.

We again adopted the bottom up approach: we started with the NAAJMI Bill of Rights (BOR) jurisprudence of rights and looked at the various rights they have identified in the consultation process. Then we looked at CRPD and answered the question: How can CRPD strengthen advocates' hands in our work? We used the Right to Health to illustrate this approach. On the second day we focussed on legal capacity and force in psychiatry, the two most contentious issues both in CRPD and in BOR.

The presentations were followed by lively discussions.

Seminar on Gandhi: 2-4 October, Hyderabad Central University

2008-10-15T08:54:00.003+05:30

I attended a seminar on Gandhi's moral and political philosophy, organised by the Department of Philosophy of the Central University of Hyderabad. The three day event was a good opportunity for me to learn to see Gandhi as a complex thinker whose thoughts and life serve with powerful lessons for us today.

About half of the presenters spoke about Gandhi and his philosophy as part of history. I could see how difficult it is not to deify such a great person. However understandable can the temptation to deify Gandhi, it is undesirable as deification creates a distance between us and the deity. The other half of the presentations addressed contemporary issues in the light of Gandhi's philosophy.

For me Professor Sunil Sahasrabudhy's lecture on a Gandhian approach to knowledge politics was the most inspiring part of the seminar. It gave a brief summary of the paradigm shift taking place in the field of knowledge activities. Modernity privilegized science. Science was seen as the only desired way to knowledge. All other forms of knowledge have been seen, at best, as auxiliary. Knowledge activities primarily took place in universities. The concept of knowledge was construed through the scientific method. Knowledge spread throughout the entire society was not seen as equally valuable as it lacks the rigor of science.

With the dawn of the Information Age the absolute nature of science was questionned. Knowledge has been seen as anything that can be organised using information technology. Knowledge management has become the crucial knowledge activity.

This paradigm shift creates an opportunity for grassroots, common knowledge, using an Indian concept: lokavidya, to gain unprecedented status. As far as lokavidya can be organised into formats processable for computers, grassroot knowledge can serve as a source for knowledge activities. Knowledge activities increasingly take place in the virtual space rather than being restricted among the walls of the university. While this paradigm shift is potentially empowering for the lokavidya and for grassroot people, empowerment happens only if people themselves have the control over their knowledge. That is why a new knowledge politics is needed. Professor Sahasrabudhey called for a new movement of satyagraha (Gandhi's non-violent resistance) in the field of knowledge. Knowledge Satyagraha is to cleanse the world of knowledge. It stands for a reorganisation of the social logic of knowledge on the bases of equity and human concerns. It is the chief method to oppose hierarchies, privatization and restrictive use policies in connection with knowledge and knowledge activities. It intends to rediscover the principle of legitimization in the knowledge activity of the people.

Mental health users' lived experiences and experiential knowledge, user controlled alternatives to coercive psychiatry are all parts of lokavidya, which has not gained due recognition yet. I suggest that user/survivor communities join in the Knowledge Satyagraha.

Another exciting paper was Professor Amita Dhanda's lecture on Gandhi and law. The major morale of her presentation was her request to each generation to understand what "rule of law" means and when non-compliance with a legal regime is warranted. Again I found this idea directly applicable in the mental health field: in a world of disqualifying mental health related laws, a mere adherence to the existing laws without challenging them acts against the deeper meaning of a rule of law society.

I am thankful to Amita and Professor Raghuramaraju for allowing me to participate in this exciting scholarly meeting.

CRPD Advocacy: Top Down versus Bottom Up Approach

2008-09-30T12:56:00.002+05:30

The UN Convention on the Rights of Persons with Disabilities entered into force early this May. The first session of the Conference of States Parties, which is to elect the treaty body responsible for the international monitoring of its implementation, will meet in November. Disability rights activists, Disabled People's Organisations (DPOs), civil society organisations are now busy with advocating for a universal ratification and meaningful implementation of the Convention.

Efficient advocacy requires consciousness. Advocates need to design and execute strategies that are capable to bring about the paradigm shift emerging in the Convention. As the old paradigm of pity, protection even at the cost of prevention of personal capability development, deficiency, charity has been ruling for centuries, we need tremendously powerful strategies.

There can be two different approaches. The top down strategy starts with CRPD as an international legal instrument. This deductive way explains what implications CRPD has for the lives of persons with disabilities. The strength of this method is the authority of international law. Its weakness comes from the very same: for many people international law is abstract and distant, hardly ever related to real life. There are so many examples of States' non-compliance with their internatioal obligations. This top down approach needs to work with the necessarily open textured Convention language, open to various interpretations. The one with better technical knowledge of law has better position in winning with their interpretations. Grassroots people and their movements are disadvantaged in this mostly technocratic competition of interpretation. The State and its concern is central in such a discourse. People's participation is seen as one of the State obligations, as it is in the text of the Convention, rather as the overarching sine qua non condition for bringing about social change with the leadership of persons with disabilities. Lawyers are the central actors who teach civil society, which is often sceptical about its usefulness. People who had been denied our opportunity to assert our rights to protect our dignity and interest have not had much benefit from the law. All these are hardly empowering for those whose rights are to be promoted and protected.

The bottom up strategy, on the other hand, starts with the already identified needs, aspirations, dreams and hopes of the grassroots. Looks at the Convention as a tool to strengthen our hands in our ongoing advocacy efforts. This gives us a chance to interpret the open textured language so that it reflects what we want to achieve. Interpretation then is no longer a technocratic game but an expression of the lived experiences of persons with disabilities. People's participation is not just an obligation of the State but the driving force and the medium of an open and broad human rights discourse and the Convention is a powerful framework for it. The strenght of this approach is given by the authenticity of people rather than the authority of law. Law becomes what it should be: empowerment of those who had been deprived of equal participation. Central actor is civil society with the leadership of persons with disabilities. They teach lawyers how to interpret the Convention. This approach is potentially much more empowering and the emppowerment comes from the process itself rather than from the good will of the State and of the legal experts.

What can CRPD mean for Bapu Trust?

2008-09-30T12:04:00.009+05:30

Last weekend I participated at the Bapu Trustee and Staff Retreat. The meeting took place in a hill station, one hour drive from Pune on the Pune-Mumbai highway.

The retreat started with a session held by Amita and myself on CRPD. We adopted a bottom up approach, attempting at illustrating how CRPD reflects everyday work experiences of Bapu Trust.

Bapu Work Ethics and CRPD

Amita Dhanda

Gábor Gombos

The first international human rights treaty in the new Millennium.

Why was it needed?

- The rights enshrined in previous treaties are not accessible to persons with disabilities (pwd).

- The lack of reasonable accommodation, even in the absence of intention, results in social exclusion for pwd.

What is the advantage of international law?

- Pressure of the international community.

- The advantages of international cooperation.

- Larger movement backing.

- Obligates states parties to develop, execute and monitor legislations, policies, programmes.

Negotiating history

- Adopted within five years – a UN record.

- Unprecedented participation and contribution by civil society with the leadership of Disabled People’s Organisations (DPO).

- Record number of signatures at the opening.

Purpose and Objectives

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

CRPD’s image of a human being

- interdependent

- autonomous with support and reasonable accommodation

- both same and different

- contribute to human diversity

CRPD is a comprehensive human rights instrument covering civil-political (e.g. liberty, freedom from torture, integrity, participation) and economic-social-cultural (e.g. education, right to work) as well as developmental rights.
What does CRPD mean for us in India?

- Impact of binding International Law on Indian law and policy

- Guiding Force for Change of Indian Law and Policy

Despite its progressive character CRPD too remote from our work lives

- Limited bearing on the legal dimension of our work

Relevance of this forward looking instrument to Bapu’s Work

- Right to participation and Awareness Raising

- Concept of Reasonable Accommodation

- Legal Capacity and Support

Awareness Raising

States Parties undertake to adopt immediate, effective and appropriate measures:

(a) To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities;

(b) To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life;

Awareness Raising at Bapu

- Relationship between internal work culture and social advocacy

- Presence of user –survivor

- Perception towards and perception of user-survivors

- Interpersonal Relations

- Service provision

- Administration

CRPD: The Right to Participation

In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.

Right to Participation at Bapu

- Relationship between participation and awareness raising

- Various Models of Participation

- each person involved in decisions affecting them

- all persons to understand the mental health advocacy positions in Bapu

- persons with disabilities to be actively consulted in the formation of all Bapu policies

CRPD and Reasonable Accommodation

- Non Discrimination means that persons with disabilities are treated on an equal basis with others

- It also means that general policies are modified and altered to accommodate the specific needs of particular persons with disabilities

- This customisation of general policies is called reasonable accommodation

Reasonable Accommodation at Bapu

- Concept of Flexible Time

- Idea of Safe Spaces

- Giving Value to Varied Perceptions

- Insight these Accommodations provide to general policy

CRPD : Legal Capacity and Support

- All persons with disabilities have both capacity for rights and capacity to act

- Realization of capacity to act may require support

- Support to be provided in an empowering and non threatening manner

Capacity and Support at Bapu

- Support Mechanisms Available in Different Parts of the World

- Provisioning of Support in Bapu

- Developing of Suitable Designs for Support

Deliberative Democracy and Full Participation of Persons with Disabilities

2008-09-24T10:57:00.005+05:30

The mere fact that the United Nations, against all the fears of the inflation of human rights, adopted the Convention on the Rights of Persons with Disabilities, demonstrates that we, people with disabilities, have been lacking equal recognition in our societies. Disability, according to the social model, comes from the barriers created by the inadequate societal response to the person's impairment. Barriers result in social exclusion: persons with disabilities are socially excluded persons. Adults with intellectual and psychoscial ( mental health) disabilities often have a legal status less than of an adult person. Legal incapacitation through guardianship and other forms of substitute decision making deprive us from the capacity to act. Attitudinal and legal barriers need to be removed along with physical, communicational and informational barriers. There is no easier, more "Royal" way to implement the UN CRPD.

Disabling laws need to be replaced by enabling ones. This will require tremendous legislative work, and in that endeavor persons with disabilities need to play a decisive role as demanded by CRPD. Enabling laws then need to be used as frameworks for societal action with the view of full inclusion of all persons with disabilities, in all fields of life.

My recent experiences both in Hungary and in India make me cautious: the involvement of persons with disabilities through their organisations, while necessary, will not be sufficient to get closer to the CRPD objectives. Let me reason why I think so, and then let me come up with proposals on how full inclusion can be achieved.

Social exclusion, among other things, has also prevented persons with disabilities to be equal part of the public sphere. The public sphere is an area in social life where people can get together and freely discuss and identify societal problems, and through that discussion influence political action (http://en.wikipedia.org/wiki/Public_sphere). Jürgen Habermas, in his historical analysis of the public sphere (Habermas, Jürgen (German (1962) English Translation 1989). The Structural Transformation of the Public Sphere: An Inquiry into a Category of Bourgeois Society. Cambridge Massachusetts: The MIT Press, p 36), identified three principles that govern the institutionalization of the public sphere: disregard of status of the person; domain of common concern enabling the sphere to problematize areas that hitherto have not been questioned; inclusivity to enable everyone to participate.

None of these has been typically the case for persons with disabilities. Legal incapacitation is the clearest example for how the disregard of status principle is breached: persons under guardianship are legally deprived of being part of the discourse. More subtle forms of the violation of the disregard of status are rooted in the prejudices, stereotypes and stigma associated with disabilities.

Disability as an issue has only recently become a common concern. Only a few countries have enacted legislation on the rights of persons with disabilities and comprehensive action plans, regional, national or local, are exceptional. Even in those countries where such laws and plans exist, persons with disabilities have been hardly in a position to contribute to the problematization of areas, at best we have been consulted on ready frameworks. Existing democracies, more or less functioning on the grounds of a social contract tradition, do not feel the need to deal with the concerns of those who are seen as lacking the capacity to be and to act independently and rationally, as societal cooperation in this tradition is based on mutual adventages of parties of approximatly equal power. What is adventageous, in the framework of the social contract tradition, shall be decided by contractors as independent actors of relatively equal stature, thinking rationally. (A good critique of the Rawlsian approach can be found in (Nussbaum, Martha C. (2006). Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge Massachusetts: The Belknap Press of Harvard University).) Consenquently, the concerns of persons with disabilites as perceived by themselves, have become common concerns only accidentally.

The problems with inclusivity of the current public sphere are obvious. Accessibility and reasonable accommodation are still goals to be achieved.

Conventional consultations with persons with disabilities will be unlikely to bring about the needed change in the nature, attitudes and interactional dynamics of the existing democratic public sphere. And without such change people with disabilities remain excluded, albeit at a different level of exclusion. Consultations with disabled people's organisations only will not create broad enough consensus in society at large on what needs to be done to end exclusion and promote full inclusion and equality. In a broader consultation with all the stakeholder groups there is no guarantee that people with disabilities' agenda will substantiate the problematization on disability. Tokenism in such broad consulations is so typical that one needs to believe there are systemic causes for tokenism. I submit that because of the historical deprivation and power imbalance, more powerful stakeholders do set the agenda and the rules for discourse. In this process powerful stakeholders stakes are mistakenly defined as rights, forgetting that rights are to be asserted by the powerless to empower them to end exclusion. The most bizarre, though not at all exceptional example I know of is the Social Care Act in my country, which lists the regulation of physical and mechanical restraint in psyhiatric institutions among the rights of the user.

Isn't there a way out? In my opinion a multi-level deliberative approach may be successful. Deliberative democracy has a number of techniques which, if employed properly, can ensure both the leadership role for people with disabilities in the societal problematization of disability and the broadness of the societal discourse needed to create the necessary ownership in society at large.

What is deliberative democracy?

"Deliberative democracy rests on the core notion of citizens and their representatives deliberating about public problems and solutions under conditions that are conducive to reasoned reflection and refined public judgment; a mutual willingness to understand the values, perspectives, and interests of others; and the possibility of reframing their interests and perspectives in light of a joint search for common interests and mutually acceptable solutions.

It is thus often referred to as an open discovery process, rather than a ratification of fixed positions, and as potentially transforming interests, rather than simply taking them as given. Unlike much liberal pluralist political theory, deliberative democracy does not assume that citizens have a fixed ordering of preferences when they enter the public sphere. Rather, it assumes that the public sphere can generate opportunities for forming, refining, and revising preferences through discourse that takes multiple perspectives into account and orients itself towards mutual understanding and common action.

Deliberative democracy in its predominant usage today means expanding the opportunities of citizens themselves to deliberate." (Carmen Sirianni and Lewis Friedland, http://www.cpn.org/tools/dictionary/deliberate.html)

Study circles of people with disabilities deliberate on what shall be on the community's agenda to dismantle disability-based exclusion. Then citizens' juries with participation of experts with disabilities formulate recommendations on law and policy making. This can be followed by a broad and open consultation, making use of accessible information technologies, on the issues identified by the study circles. A deliberative poll shall accompany the broad consultation. This poll shall give an evidence on how members of the community at large change their attitudes after being informed by the expertise coming from the study circles and citizens' juries. This then can be used as an evidence base for and by the law and policy makers.

This process is inherently empowering and contributes to capability development both in the communities of people with disabilities and in society at large.

Self-Advocacy: The Art of Negotiating; the Politics of Dignity

2008-09-24T10:13:00.004+05:30

Together with colleagues from the Hamsayeh Peer Support Group I have been involved in the creation of a material that can be used to train self-advocates working in the field of mental health. The material is prepared in a series of conversations on self-advocacy, mental health, dignity and fundamental rights. The sessions are recorded, then transcribed.

The conversations have been most educational for me. I had to go back to the basics and understand again the intimate links between self-advocacy and peer support. The objective of self-advocacy is to exercise the right to express freely, to promote self-determination and protect dignity in the field of mental health, where both in the institutional system of psychiatry and in the informal systems of family and community all these rights are at permanent risk to be ignored. Self-advocacy is rather a process than an act and negotiations play central role in the process.

I am grateful for the title "Self-Advocacy: The Art of Negotiating; the Politics of Dignity" to my colleague Dalip Daswani.

Photo source: http://www.uexpressit.com/_StandUp_SpeakOut.jpg

Celebrating Changemakers: Meeting with Newly Elected Ashoka Fellows

2008-09-19T08:35:00.006+05:30

"Ashoka is the global association of the world’s leading social entrepreneurs—men and women with system changing solutions for the world’s most urgent social problems. Since 1981, we have elected over 2,000 leading social entrepreneurs as Ashoka Fellows, providing them with living stipends, professional support, and access to a global network of peers in more than 60 countries.

With our global community, we develop models for collaboration and design infrastructure needed to advance the field of social entrepreneurship and the citizen sector.

Our Fellows inspire others to adopt and spread their innovations - demonstrating to all citizens that they too have the potential to be powerful changemakers."(www.ashoka.org)

On the 18th September Bhargavi and I attended a meeting for newly elected Indian Ashoka Fellows. About 25 colleagues and some of the Ashoka staff participated in the meeting, which was part of a three day initiation to the world of Ashoka: The Global Association of Leading Social Entrepreneurs. 7 of the new Fellows work in the mental health and intellectual disability fields.

Bhargavi shared her experiences as an Ashoka Fellow and spoke about the collaborations she has been involved to strive for access to justice for people living with mental illness.

I gave an introduction to the Fellows Exchange Programme under which I spend this six month period in India. I spoke about my involvement with the negotiations of the UN Convention on the Rights of Persons with Disabilities and about how ow we are working on the implementation of it for people with mental health problems (psychosocial disability) both in India and in Hungary. Talking about the principle of "Nothing about us without us" I emphasized the importance of self-advocacy. The exchange programme gave us an opportunity to design democratic deliberations on the implementation.

Both Bhargavi and I were elaborating on what opportuntiy means in social change. What opportunity meant for us as changemakers in our endeavour to bring about tangible changes in the lives of people with psychosocial disability? How we can use legal and other forms of advocacy to create opportunity for ourselves and our peers.

The Taj

2008-09-18T10:18:00.004+05:30

In Agra we went to the Taj Mahal in a camel cart.

"The Taj Mahal (pronounced /tɑdʒ mə'hɑl/ or pronounced /tɑʒ mə'hɑl/) (Hindi: ताज महल); Persian/Urdu: تاج محل) , is a mausoleum located in Agra, India, that was built under Mughal Emperor Shah Jahan in memory of his favorite wife, Mumtaz Mahal.
The Taj Mahal (also "the Taj") is considered the finest example of Mughal architecture, a style that combines elements from Persian, Turkish, Indian, and Islamic architectural styles. In 1983, the Taj Mahal became a UNESCO World Heritage Site and was cited as "the jewel of Muslim art in India and one of the universally admired masterpieces of the world's heritage." (http://en.wikipedia.org/wiki/Taj_Mahal)

Akbar's tomb

2008-09-18T10:10:00.003+05:30

Last Saturday we made a full day trip to Agra. On our way there we stopped at Sikandra to see Akbar's tomb. Akbar, the third Mughal Emperor (1542 - 1605) was one of the great rulers in India. His religious tolerance is comparable to another, much earlier, great emperor, Ashoka.

Sightseeing in Delhi

2008-09-18T08:59:00.009+05:30

Last week, while in Delhi, I did some sightseeing. My guide was Amita and we both benefited from a guidebook by Y.D. Sharma (Delhi And its Neighbourhood, Archeological Survey of India, New Delhi, 2005).

We visited the Museum of Parliament. This high-tech facility currently lacks soul. The invested money and human resources call for a rethinking of how to use the museum to raise awareness and promote the Indian pluralistic democratic values.

We also went to see the famous Qutb-Minar. Here we experienced how some of the government licenced guides express anti-Islam propaganda under the disguise of guiding tourists.

Another place we visited is Humayun's tomb. In this mausoleum several of the Moghuls have been buried. The architectural complex is seen as one of the models to the Taj Mahal.

In Kotla Firoz Shah, on the top of a pyramidal structure there is one of the Ashokan pillars. This one among the numerous pillars and rocks with the famous emperor's, Ashoka's edicts was the first to decipher.

We also saw the Red Fort. This citadel was built between 1639 and 1648, after Shah Jahan transferred his capital from Agra to Delhi.

Uncertain Physics, Certain Psychiatry: Lecture at the Jawaharlal Nehru University

2008-09-15T11:48:00.003+05:30

On 12th September I was lecturing at the Jawaharlal Nehru University. My talk on "Uncertain Physics, Certain Psychiatry was organised by the Centre of Social Medicine and Community Health.

The paradigm of biomedical psychiatry, associated with the name of Kraepelin, was modeled on the Newtonian paradigm of physics. While physics underwent several radical paradigm shifts in the early twentieth century, bringing about the recognition of the inherent uncertainty in nature, biomedical psychiatry has not learned from these changes and still maintains the view of a certain world.

The hegemony of this reductionist view in psychiatry in conjunction with the widespread use of force to hospitalize and treat people against their will results in a mental health care sector that is not inviting for many of those who experience mental distress.

I argued that a prohibition of force in psychiatry would result in better mental health for the population at large. Alternative paradigms would be encouraged (or at least not marginalised), people in distress would feel safe to proactively seek help. The price to pay would be at most a marginal increase in violence committed by people in distress.

Attending a lecture by Martha Nussbaum

2008-09-15T11:30:00.003+05:30

Thrsday evening I attended a lecture by Prof. Martha Nussbaum. Martha Nussbaum was born in New York in 1947. Her father was a lawyer, her mother an interior designer. Nussbaum gained a BA from NYU and an MA and PhD from Harvard. Currently professor of law and ethics at the University of Chicago, she is considered one of the world's foremost philosophers. She is an award-winning author whose many books include The Fragility Of Goodness, Sex And Social Justice and Hiding From Humanity. Earlier this year she published The Clash Within: Democracy, Religious Violence and India's Future. (From an interview by Rosanna Greenstreet, The Guardian, Saturday October 27 2007).

Nussbaum has been working closely with Nobel laureate Amartya Sen on the capability approach and also applied it to disability.

This time Nussbaum lectured on American constitutionalism and the capability approach. The lecture was a satellite of the annual conference of the Human Development and Capability Association.

On the photo: This photo is used with permission of Professor Martha Nussbaum (the subject) and the photographer, Robin Holland. The photographer has given a blanket license, including all internet use. Taken from http://en.wikipedia.org/wiki/Image:Martha_Nussbaum_authorized-wikipedia.jpg

The Promise of CRPD: Lecture at the Knowledge Workshop of the National Trust

2008-09-15T08:50:00.004+05:30

On the 11th September Amita and I were co-lecturing at the Knowledge Workshop of the National Trust. We were talking on what persons with disabilities dream, hope and aspire in our lives. What parents of persons with disabilities dream, hope and aspire? How the UN Convention on the Rights of Persons with Disabilities addresses these dreams, hopes and aspirations in a human rights framework?

The differences between the person with disabilty's and his/her parents' perspectives was emphasized. The lecture was concluded by the statement on the importance of self-advocacy: Nothing about us without us.

The lecture was well received. I got a number of invitations from various disability organisations and programmes.

Travel to Delhi

2008-09-10T10:49:00.003+05:30

Today I am flying to Delhi, where I shall lecture with Amita at the Knowledge Workshop of the National Trust, preceding their annual General Assembly. The presentation shall deliberate on the aspirations of persons with disabilities and their parents. It next dwells on how social discrimination and exclusion prevents persons with disabilities from obtaining their just due. And lastly examines how the Convention generally and the construction of legal capacity more particularly would assist persons with disabiliites in obtaining their just due.

On Friday I shall talk at the Jawaharlal Nehru University which is among India's premier Universities. My lecture will be about "Uncertain Physics, Certain Psychiatry", challenging the scientific status of the hegemony of the neurotransmitter based biological psychiatry. Implications on mental health policy making will be also addressed.

Peer Support: The First Issue of the Hamsayeh Diary Published

2008-09-05T14:16:00.003+05:30

Hamsayeh, the first user/survivor peer support group based in Pune published the first issue of their newsletter, which they humbly call diary. This issue reports on the first five meetings of the group.

A sufi saying particularly drew my attention:

To your mind I am mad

To my mind, you are all sane

So I pray to increase my madness

And to increase your sanity...

... my madness is from the power of love;

your sanity - from the strength of unawareness.

I am proud that I could be present at the birth of Hamsayeh and wish the group all the success and happiness such initiatives deserve.

Global Movement for Mental Health: a Well-Paved Road to Hell?

2008-09-03T22:04:00.008+05:30

The prestigeous medical journal Lancet launched a campaign to set up a global movement for mental health exactly one year ago. The envisaged movement has two main aims: (1) to scale up the availability of evidence-based treatments for mental health and (2) to ensure full human rights for people with mental health disabilities. The Lancet has been publishing a series on the theme, which gives us more insight on what the campaign initiators really mean under these noble goals. As no one can deny that the aims of the movement are most respectable. Of course, the devil is always in the details.

What are those "details" that make me the devil's advocate in this seemingly laudable effort? Below I am summarising some of my concerns.

The keynote of the Lancet articles leaves no doubt that the major focus is the globalisation of Western mental health services and treatments to the developing world. Much is said about evidence based drug treatment and (Western based) community mental health services and nothing, or just negative things are mentioned about the traditional community resources and healing methods available in developing countries, such as India. A famous (and because of the unexpected conclusions, repeated) major WHO study on the comparison between the prognosis of schizophrenia in a number of developed and developing countries has found that the outcome of this major mental health problem is significantly better in the developing world. The Lancet series, and the proposed campaign has not been informed by this finding. Advocating the globalisation of the Western, drug treatment based therapeutic regimes and services, when there is available scientific evidence that in the West major mental disorders have less promising prognosis, seems to be irresponsible.

Low and middle income countries are seen as retarded societies and civilizations who need to be emancipated by the Western wisdom. The initiated global movement clearly has not learned from the pitfalls of our Western colonialism. Instead of advocating a global discourse on what mental health is and what resources, methods, frameworks have been developed in various cultures across the globe and over the centuries to promote mental well-being, the movement want to sell the industrialised Western approach.

Human rights mostly means the right to treatment in this context. The Lancet series does not reflect upon its own self-contradiction: on the one hand involuntary treatment and hospitalization is mentioned as a human rights concern and source of stigma in the West, on the other hand there is no discussion on the causes of this reliance on force. Without such a deliberation advocating the right to treatment may easily end up in advocating force.
Human rights violations in the traditional healing regimes are widely popularised. All this being done without listening to those who voluntarily seek help at traditional healing centers. The fact that no one can be legally coerced to traditional healing, and all human rights breaches taking place in such centers are prosecutable offences, while caging people, depriving them of their liberty and their right to make own choices are backed by mental health laws and thus seen as lawful, is overlooked. Whether the declared full respect for the human rights of people with mental health disabilities is premised on this distinction? Depriving people with disability on grounds non-disabled people would never be lawfully detained is compatible with this "full respect"?
The approach adopted by the global movement does not feel a need to seek evidence base for traditional healing. Pioneering scholarly work on the effectiveness of traditional healing, such as the one conducted by the Bapu Trust, is ignored.

The entire movement is based on the premise that the task of defining mental health, developing indicators to measure it, is a professional task of the medics. What constitutes evidence is being decided by psychiatrists. Users of services are not seen as central experts in a broad, cross-cultural and multi-sectoral and interdisciplinary (i.e. genuinely global)discourse on what is mental well-being. No need for such a discourse is envisaged, as it is premised that medical professionals in the West and in intergovernmental organisations already know all the basics.

The global movement as it was initiated and as it has evolved so far is not a joint venture of equals. It is a colonisation attempt with hegemonical role and power of the Western industrialised countries, their psycho-pharmacological industry, which, if succeeds will globalise the legitimised human rights violations in the Western mental health sector. It is a hegemonical appropriation of mental health by the medical profession, ignoring the lived experience of the users and survivors of the services.

And this is certainly something that no one can want, who genuinely believes that human rights and human rights of persons with mental health disabilites are not two separate things.

Ganesh Chathurthi: The Largest Festival in Maharashtra

2008-09-03T01:00:00.008+05:30

Today a ten-day festival begins, the largest one in Maharashtra. The festival commemorates and celebrates the birth of the elephant headed, most popular deity, Ganesha.

Ganesha or Ganesh is the son of Shiva and Parvati, Ganesha has an elephantine countenance with a curved trunk and big ears, and a huge pot-bellied body of a human being. He is the Lord of success and destroyer of evils and obstacles. He is also worshipped as the god of education, knowledge, wisdom and wealth. In fact, Ganesha is one of the five prime Hindu deities (Brahma, Vishnu, Shiva and Durga being the other four) whose idolatry is glorified as the panchayatana puja.

Significance of the Ganesha Form

Ganesha's head symbolizes the Atman or the soul, which is the ultimate supreme reality of human existence, and his human body signifies Maya or the earthly existence of human beings. The elephant head denotes wisdom and its trunk represents Om, the sound symbol of cosmic reality. In his upper right hand Ganesha holds a goad, which helps him propel mankind forward on the eternal path and remove obstacles from the way. The noose in Ganesha's left hand is a gentle implement to capture all difficulties.

The broken tusk that Ganesha holds like a pen in his lower right hand is a symbol of sacrifice, which he broke for writing the Mahabharata. The rosary in his other hand suggests that the pursuit of knowledge should be continuous. The laddoo (sweet) he holds in his trunk indicates that one must discover the sweetness of the Atman. His fan-like ears convey that he is all ears to our petition. The snake that runs round his waist represents energy in all forms. And he is humble enough to ride the lowest of creatures, a mouse.

How Ganesha Got His Head

The story of the birth of this zoomorphic deity, as depicted in the Shiva Purana, goes like this: Once goddess Parvati, while bathing, created a boy out of the dirt of her body and assigned him the task of guarding the entrance to her bathroom. When Shiva, her husband returned, he was surprised to find a stranger denying him access, and struck off the boy's head in rage. Parvati broke down in utter grief and to soothe her, Shiva sent out his squad (gana) to fetch the head of any sleeping being who was facing the north. The company found a sleeping elephant and brought back its severed head, which was then attached to the body of the boy. Shiva restored its life and made him the leader (pati) of his troops. Hence his name 'Ganapati'. Shiva also bestowed a boon that people would worship him and invoke his name before undertaking any venture.

However, there's another less popular story of his origin, found in the Brahma Vaivarta Purana: Shiva asked Parvati to observe the punyaka vrata for a year to appease Vishnu in order to have a son. When a son was born to her, all the gods and goddesses assembled to rejoice on its birth. Lord Shani, the son of Surya (Sun-God), was also present but he refused to look at the infant. Perturbed at this behaviour, Parvati asked him the reason, and Shani replied that his looking at baby would harm the newborn. However, on Parvati's insistence when Shani eyed the baby, the child's head was severed instantly. All the gods started to bemoan, whereupon Vishnu hurried to the bank of river Pushpabhadra and brought back the head of a young elephant, and joined it to the baby's body, thus reviving it.

Ganesha, the Destroyer of Pride

Ganesha is also the destroyer of vanity, selfishness and pride. He is the personification of material universe in all its various magnificent manifestations. "All Hindus worship Ganesha regardless of their sectarian belief," says D N Singh in A Study of Hinduism. "He is both the beginning of the religion and the meeting ground for all Hindus."

Ganesh Chaturthi

Birthday of Lord Ganesh is one of the most popular Hindu Festival. It is celebrated on the 4th day (chaturthi) of the bright fortnight month of Bhadrapada (August-September) in Hindu Calendar. The celebration continues till Anantha Chaturdasi which is for 10 full days.

There are interesting stories associated with Ganesh Chaturthi and its significance. One of the most popular legend found in Skanda Purana says, once Ganesha was invited for a feast in Chandralok. The joyous Ganesh feasts himself to his heart's content. But he grows very restless and feels that his stomach would burst out. In order to prevent the stomach from bursting out, he ties a snake around it. But he was not able to balance himself after the huge meal and stumbles and falls. The moon watches the scene from the sky and laughs at Ganesh.

Angered, Lord Ganesh curses the moon to vanish from the universe. However because of the moon's absence, the whole world began to wane. So the gods asked Shiva to persuade Ganesha to relent. The moon also apologized for his misbehavior. On Shiva's intervention, Ganesha modified his curse. He announced that the moon would be invisible on only one day of a month, and would be partially seen for the Ganesha Utsav most part.

On the occasion of the Ganapati festival a large number of images are made of all possible sizes, and people buy them to keep in their houses as a divine guest for one and a half, five, seven, or ten days. On the day of the Chaturthi, shrines are erected, firecrackers let off, huge images of Ganeshji are carried in grand procession for 'Ganesh Visarjan' accompanied by the sound of devotional songs and drums. The idol should not be kept after this day, as it is considered inauspicious.

The festival culminates on the day of Ananta Chaturdashi, when images (murtis) of Ganesha are immersed in the most convenient body of water. In 1893, Lokmanya Tilak transformed this annual Ganesha festival from private family celebrations into a grand public event. He did so "to bridge the gap between the Brahmins and the non-Brahmins and find an appropriate context in which to build a new grassroots unity between them" in his nationalistic strivings against the British in Maharashtra. Because of Ganesha's wide appeal as "the god for Everyman", Tilak chose him as a rallying point for Indian protest against British rule. Tilak was the first to install large public images of Ganesha in pavilions, and he established the practice of submerging all the public images on the tenth day. Today, Hindus across India celebrate the Ganapati festival with great fervour, though it is most popular in the state of Maharashtra.

I have my own baby Ganesha, who, on the occasion of a prosaic shopping several times fell into my shopping basket. Then I understood that he wanted to come with me.

Amita's brother has a beautiful art gallery in Chennai with a particularly rich collection of Ganesha idols. Most of the photographs in this entry were taken in his gallery.

New Template for the Blog

2008-09-02T21:33:00.001+05:30

As the first half of my India programme expired, I decided to change the template of the blog. I also included a new facility that will enable readers to easily email some of the blog entries to their friends.

Can User/Survivor Advocacy Learn from Indian Tradition?

2008-09-02T01:55:00.007+05:30

It would be hard to deny that current user/survivor advocacy has been very much shaped by the American (or Anglo-Saxon?) advocacy traditions. This approach has resulted in a number of achievements, we, user/survivor advocates can rightly be proud of. But certainly this approach has its limits. It looks like the American/Anglo-Saxon way reached its limits. After decades of advocacy we are not much closer in eradicating force from psychiatry. Some of my colleagues, especially from the States expect significant changes from the UN Convention on the Rights of Persons with Disabilities. It is a shame that it is most unlikely that the US will sign, let alone ratify CRPD in the foreseeable future. My position is that CRPD is a good basis but only if we can innovate our advocacy philosophy.

Martin Luther King went to India to learn from their tradition before launched their civil rights movement. Can we also learn something timely from the Indian tradition? After three months in India and after numerous discussios on Gandhi and the Freedom fight with Amita and many colleagues, and after reading on the topic and from the leaders of the Indian freedom fight, my proposal is that yes, we can learn a number of timely lessons that may help utilize the opportunity brought by the entry into force of the CRPD.

I state that Gandhi's most important advocacy principle was not the principle of non-violence, as many of us believe. While non-violence has been enormously (and for the West most unexpectedly) powerful, the Gandhi follower Mandela, who emphasised the superior value of non-violence, had resumed to violence on occasions. This was not in contradiction with Gandhi himself, as he had written: "'that where there is only a choice between cowardice and violence, I would advise violence". Simlarly, I am advocating for non-violent user/survivor advocacy, but together with Gandhiji's precaution. I think Gandhi's major advocacy innovation was that he was able to present the concepts of freedom and liberty in a language and historical context that was natural and easy to understand for Indians. Through presenting these ideals and goals as inherently Indian ones he managed to convince masses to follow the route and adopt also the non-violence principle.

What this may mean for our current day user/survivor advocacy is that we need to learn how to present CRPD in the language and historical context of the user/survivor culture. So far most of the advocacy efforts have started from CRPD and explain what it means for users/survivors. What the Gandhiji tradition tells me is that we need to follow the opposite way: let us go back to the user/survivor culture and link the values discoursed there with the CRPD. Then we can mobilise much more users/survivors than following the "let us translate CRPD to user/survivor language" approach.

Another proposal I am making based on my lessons in the Indian tradition is that we both need to mobilise our peers to become their own advocates, as the father of the Constitution of India, dr Ambedkar did with the dalits AND to change the hearts of the majority society, as Gandhiji did with caste Hindus. Self-gettoing is an ever-present danger in any marginalised groups advocacy movement, and this twin-track approach can help us prevent it.

Sources for the photos:

Gandhi: http://www.khaasbaat.com/may2007/images/may07/gandhi.jpg
King: Library of Congress. New York World-Telegram & Sun Collection. http://hdl.loc.gov/loc.pnp/cph.3c26559 Date=1964 Author=Dick DeMarsico, World Telegram staff photog
Ambedkar: http://www.unm.edu/~rhayes/ambedkar.jpeg

Legal Advocacy in Mental Health - a Concept Note

2008-09-02T01:18:00.003+05:30

The adoption and recently the entry into force of the UN Convention on the Rights of Persons with Disabilities have generated unprecedented interest in legal advocacy in mental health. What has been a professional interest of a marginally few will and should become a public concern if we want CRPD to be more than a failed promise.

But what does legal advocacy mean? And what does it mean in the field of mental health? These are hitherto unanswered questions.

Advocates can also benefit from the old Hippocratic maxima: Cause no harm. The likelihood of causing unintended harm is non-negligible if conscoius reflection on the basic questions is missing.

That is why Amita Dhanda and I developed a concept note and have started elaborating it. Here comes the concept note.

Legal Advocacy : Concept Paper
Questions arising in Legal Advocacy
· What is meant by Advocacy?
· What is the purpose of Advocacy?
· Where do we situate the user – survivor
· The prioritization between stakeholders – psychiatrists, caregivers.
What is meant by Legal Advocacy?
- Filing test cases
- Client centered Legal Advocacy
- What should dictate the filing: the possibility of winning or the needs of the client.
- The travails of varied opinions between u/s groups in the process of consultation for law reform
- How should the varied opinions of different groups be addressed in law reform exercises?
- At present the differences are being handled on a cats& monkey strategy , necessary to ask how should negotiation be undertaken and resolution obtained?
- How to ensure that the consultation of stakeholders is a real and not a symbolic one?
What to do with litigation outcome?
- You may never get the perfect result – do only a press release but ignore the counter position
- What should be the principles?
What else beside litigation should fall under legal advocacy?
How to reach people to convince them that they have rights but those rights to be real require assertion. So what innovative means and methods should be employed to reach the concerned people?
This of course also raises the question as to who are the concerned people? Is only a person living with MI a concerned person? Or should this information be disseminated to society at large as in effect everyone is a concerned person?
Destigmatization through legal advocacy
One body of opinion that litigation and advocacy should be grounded in present law? If that line taken then what do you do about the entire body of legal rulings/ principles/ precedents which have been arrived at by a prejudicial understanding of Persons living with Mental Illness.
Important to appreciate that legal advocacy in mental health is not a choice. Cannot begin from the social end of the discrimination as the challenge to social discrimination can be rendered null at any point by legal discrimination. In the wake of this reality that the above stated questions have to be addressed.

Human Rights and the Right to be Human

2008-09-02T00:34:00.004+05:30

The title of this article I borrowed from Prof. Upendra Baxi, though I may use it in a different sense. I have been thinking a lot about prejudices. For the first time in my life I have been staying in a part of the world where white people are a minority. In addition, the role they played in the history of the country is highly controversial. After many years I had the exposition to a huge number of professionally trained (biased?) psychiatrists, whose training can easily make them sanists. Every now and then I face ableism. Many of my friends have been activists or beneficiaries of feminism, so I became quite aware of sexism...

One is tempted to raise the question if it is possible at all to be free from these and many other "-isms"? This question is more urging if we work in the field of human rights.

I don't believe that anyone can be absolutely free of prejudices. If someone tells me he/she has no prejudices, I frankly don't believe it. And I don't think I am cynical. It may happen that we are unaware of (some) of our prejudices. But remember: unconscious prejudices are the most dangerous, the most killing ones.

Fairness and common sense reasoning requires that we admit our prejudices. Our vulnerability. Only then have we chance to fight them.

I met many human rights activists and scholars who were eloquent anti-racists, or feminists, etc. and still when speaking about "mentally ill" people, that is about me, forgot about the universality and indivisibility of human rights and thought it is just legitimate to deprive me of my liberty, of my equality before the law, etc on the ground of my disability (maybe in conjunction with some other attribute).

Human rights, if we take it seriously, is about a world without prejudices. But human rights activists are human beings and share all human vulnerabilities, including prejudicial thinking. And the more intelligent a human is, the more easily can rationalise his/her prejudices. Human rights activists are not necessarily the least prejudiced people.

We need to know that a rigid distinction between me and non-me automatically leads to prejudices. But how can we, if at all, go beyond that distinction? Just knowing that every one of us is equal and this means both same and different, is insufficient. Social psychological defence mechanisms, such as cognitive dissonance prevent us from conducting ourselves in accord with this knowledge whenever highly marginalised groups are at stake. Honestly, what do you feel and think when pass a homeless person in the street?

I had the privilege to feel and live that the 6 billion of us is just one being. Yes, this happened in a psychotic episode. Or it resulted in a psychotic crisis? The experience was wonderful but too much.

Knowing that all we are one seems to be insufficient, feeling and living it seems too much. Is there a way out? Prof. Baxi's phrase on human rights and the right to be human can be useful. Let us think about it. And let us feel about it.

Source of the photo of Siquerios' paitning entitled The March of Humanity:
Jason & NathaliePhotographer: Jason & Nathalie From: The story of D.F.

India-Taoism-and Me: an even more subjective mid-term evaluation

2008-09-01T22:41:00.004+05:30

The previous evaluation was subjective - and superficial. It remained on the surface, described various activities as if they were isolated, non-interfering, non-interacting. This is certainly not the case. Likely the most important feature of my first three months in India has been interaction. Or the lack of it. Or where to draw the line between me and non-me. Where and when and how to say no to interaction. Where and when and how to become angry, sad, depressed, mad for facing walls not allowing me to interact. And finally, can I not interact with myself? Can activities where I have been involved in be non-interacting if I, per definitionem, am interacting with myself?

If you want to disappear, go to a country which is huge, diverse, crowded. Go to India, for instance. If you want to meet yourself without any chance to escape from yourself, go to India. For instance.

I had known, before I came here, that I shall be meeting myself. Noone, even myself can prevent me from that. I had wanted that.

Now, it has happened. I am facing myself. I see myself from the outside. I am dissatisfied. This me has nothing to do with any of the personae attributed to me.

This three months gave a stage for many of my personae. The physicist. The human rights defender. The poet. The user/survivor activist. The teacher. The colleague. The philosopher. The friend. The lover. The cook. And so on... The cured mentally ill foreigner.

Each persona has a justification and a legitimacy to exist. Thus none of them, no superposition of them, no masala of them can barely approximate the one who is staring at me. Almost wrote: the real me. Be cautious, this is already dangerous.

None of them and no combination of them can describe GG who has been constructed on illegitimacy. Whose deeper identification has been rooted in being an illegitimate child. Whose birth was welcomed only by two people. One committed suicide. The other died much later, as a victim of an involuntary medical experimentation.

Illegitimacy demands for justification. Illegitimacy cannot be justified.

Do I want to be myself? If yes, why do I pretend to be some of my personae? Why do I, who values autonomy stronger than anything, want to behave according to others' expectations? Why am I telling lies instead of truth when hiding my emotions? When making secret of very simple and good feelings? To comfort others, why? How can I speak truth to power on the rights of persons with disabilities then?

Why can I not go with the flow, if I understood and learned through painful lessons that it is the way to go? Why do I want to do and to have things instead of just being? How can I teach about the healing power of being with the other if I cannot be?

Why do I hate myself when I know that this is destruction? That I cannot love anyone if hate myself?

Why do I want to do something with my wounds instead of letting them be healed?

Why do I internalise those people's hatred who collected money for an abortion to prevent my birth?

How can I advocate human rights if I do not believe that I am entitled to them?

Why can I not exercise wu-wei? Of which I had already written as a physicist.

Wu-wei is: "The writings of the legendary Taoist sages, Lao Tzu and Chuang Tzu, furnish us with specific principles as a guide to attaining this state of oneness. Through understanding these principles and applying them to daily living we may consciously become a part of life's flow.A key principle in realizing our oneness with the Tao is that of wu-wei, or "non-doing." Wu-wei refers to behavior that arises from a sense of oneself as connected to others and to one's environment. It is not motivated by a sense of separateness. It is action that is spontaneous and effortless. At the same time it is not to be considered inertia, laziness, or mere passivity. Rather, it is the experience of going with the grain or swimming with the current. Our contemporary expression, "going with the flow," is a direct expression of this fundamental Taoist principle, which in its most basic form refers to behavior occurring in response to the flow of the Tao.The principle of wu-wei contains certain implications. Foremost among these is the need to consciously experience ourselves as part of the unity of life that is the Tao. Lao Tzu writes that we must be quiet and watchful, learning to listen to both our own inner voices and to the voices of our environment in a non-interfering, receptive manner. In this way we also learn to rely on more than just our intellect and logical mind to gather and assess information. We develop and trust our intuition as our direct connection to the Tao. We heed the intelligence of our whole body, not only our brain. And we learn through our own experience. All of this allows us to respond readily to the needs of the environment, which of course includes ourselves. And just as the Tao functions in a manner to promote harmony and balance, our own actions, performed in the spirit of wu-wei, produce the same result.Wu-wei also implies action that is spontaneous, natural, and effortless. As with the Tao, this behavior simply flows through us because it is the right action, appropriate to its time and place, and serving the purpose of greater harmony and balance. Chuang Tzu refers to this type of being in the world as flowing, or more poetically (and provocatively), as "purposeless wandering!" How opposite this concept is to some of our most cherished cultural values. To have no purpose is unthinkable and even frightening, certainly anti-social and perhaps pathological in the context of modern day living. And yet it would be difficult to maintain that our current values have promoted harmony and balance, either environmentally or on an individual level.To allow oneself to "wander without purpose" can be frightening because it challenges some of our most basic assumptions about life, about who we are as humans, and about our role in the world. From a Taoist point of view it is our cherished beliefs - that we exist as separate beings, that we can exercise willful control over all situations, and that our role is to conquer our environment - that lead to a state of disharmony and imbalance. Yet, "the Tao nourishes everything," Lao Tzu writes. If we can learn to follow the Tao, practicing non-action," then nothing remains undone. This means trusting our own bodies, our thoughts and emotions, and also believing that the environment will provide support and guidance. Thus the need to develop watchfulness and quietness of mind." (Taoism - The Wu-Wei Principle, Part 4 by Ted Kardash, http://www.jadedragon.com/archives/june98/tao.html)

Why can I not be a whole? Why do I want to escape? Why am I so weak? Who will stop me?

Is there a meaning in these at all?

Three of Six Months Passed: a Mid-Term Evaluation

2008-09-01T17:34:00.021+05:30

It is simply unbelievable that the first half of my programme in India has passed. Sometimes I feel if I had just arrived a week ago, other times it looks as if I had been staying in this unique country for a major part of my life. Anyway, half-term is always a good opportunity to make a preliminary evaluation of achievements, answering questions like: what went well, what did I fail, what were the greatest minutes? The below assesment is subjective, though every sentence is strictly based on evidence. Nowadays, in the era of evidence based medicine, we are told that evidence based approach is strictly objective and scientific (in the Newtonian-Cartesian sense). I do not claim such an objectivty here, as the mere selection of which evidences I am using and which I am not, makes this experiment highly subjective. (As it is also the case with evidence based medicine. Psychiatrist David Healy's courageous work helped us understand how selectively data are used in psychiatry when submitting research data for the marketing licence for new medications, and also how selectively evidence is understood when publishing about the effectiveness and safety of drugs.)

The most useful activities during the first three months:

National Care Givers Workshop: The event was attended by about 25 family members and professional care givers. The group worked in a highly cooperative and constructive spirit. Likely this was the first time in the country for such a group to openly address such sensitive issues as force in psychiatry. Bhargavi and I worked smoothly, as if we had facilitated dozens of trainings together. The two-day event ended with a number of unanswered questions. I understood participants' needs to receive concrete help in their everyday struggle, nevertheless still hold firmly that instead of attempting one-size-fits-all recipes the only useful way is to understand how human rights considerations should be translated to everyday situations and why self-determination of people with psychosocial disabilites (mental health problems) is crucial to respect to dignity.

PARIVAAR Training on Self-Advocacy: My participation at this event, though not part of my original programme, has been one of the memorable days in India. My role was minimal: I facilitated a short session with the brilliant self-advocates with intellectual disabilities and witnessed the election of the officers of the first national intellectual disability self-advocacy group. Since then I have had the privilege to meet some of the self-advocates in other meetings.

Hamsayeh Peer Support Meet: I had the privilege to contribute to the preparations for the first user peer support group in the country and to participate in their first meetings. I will never forget the anxiety before and during the first 10 minutes of the meeting and the positive experiences afterwards. I hope my schedule and health will allow me to attend more meetings of this wonderful group.

Interview for the Sanchit Oral History Archive: This marathon 3 hour video interview has been the longest one in my life. For the first time I had the opportunity to share my life as a user and then survivor of psychiatry to such an extent. And still looks like much has to be told.

International Child Rights Consultation: This two-day event in Hyderabad enabled me to meet a number of committed experts covering various disciplines and areas of child rights. I was most impressed by the presentations of Shantha Sinha, chairpaerson of National Commission for Protection of Child Rights and Veena Shatrugna, president of the prestigeous women's organisation Anveshi. Also this was the first time that we had a joint presentation with Amita. The presentation was very well received and we both enjoyed the success. Two important outcomes of this meeting are my invitation to speak on non-coercive mental health services at Anveshi and the initiation of a CRPD implementation project by the National Commission for Protection of Child Rights.

The use of the Kuhnian theory on paradigm shifts for mental health advocacy: I had a number of lectures on paradigms and paradigm shifts. The major goal of these lectures was to challenge the hegemony of the Newtonian paradigm in psychiatry, social sciences, law. At the NALSAR Law University the students had important questions that enabled me to address sensitive issues that could hardly be raised in more politically correct environments than the in the audience of open-minded students. At the Department of Philosophy, Central University of Hyderabad I had the opportunity to address the paradigm adopted in the theory of complex systems as well. The discussion improved my advocacy to challenge biomedical psychiatry by understanding that any consistent theory of human conduct shall reflect on both the quantum and complex systems paradigms.

Drafting the Consultation Paper on the Amendment to the NTA on the Recognition of Full Legal Capacity with the Right to Support Networks: It is not an easy task to demonstrate why substitute decision making such as adult guardianship of people with disabilities is per se a human rights violation. With Amita we made an attempt to this task in our consultation paper which we shall revise in the light of the two consultations we have had. Also we learned important lessons from the consultations and the learnings can serve as a basis for a future research on People’s Participation in Law Making: a Case Study of CRPD. The consultations also enabled me to meet Poonam Natarajan, chair person of the National Trust, a wonderful mother and professional. Our joint presentation with Amita in the emotionally heated Bangalore consultation was like a public dance of two people who are proud to be close to one another and who enjoy the harmony of steps.

Speaking Truth to Power: Lecture on the Institution of Human Rights Defenders: I spoke on this most important issue at the NALSAR Law University, Hyderabad and at the ILS Law College, Pune. Human Rights will be respected only if all citizens, all persons are aware of them and if more people will feel that human rights is about them, for them. Sensitising future lawyers is vital. In Hyderabad I received a large number of questions which helped us understand the way someone can become a human rights defender.

Lecture on Non-Coercive Alternatives to Mental Health Care at Anveshi: I had a long and whole-heartedly received personal lecture at the famous women's organisation in Hyderabad. In spite of the flooding rains 25 people attanded the event which was followed by a good discussion. As the organiser put it: "Gabor's talk again confirmed about what it means to have control ofone's own body and how psychiatry wrests it away from you."

The biggest failure:

My contribution to the Indian Psychiatric Society's Continuing Medical Education meeting: This event held in Chennai was my first encounter with a thousand psychiatrists in one room after many years. I had to discover that this sort of an encounter, especially if the audience does not know how to treat me, a survivor of psychiatry as a human being, an intelligent and sound mind, is retraumatising to me. Thus, I not only had no impact, but also entered an emotional crisis.

Places I have visited:

Hyderabad
Pune
Bangalore
Chennai
Mahabalipuram
Guwahati
Darjeeling

States I have visited:

Andra Pradesh
Maharashtra
Karnataka
Tamil Nadu
Assam
West Bengal

Groups of people I have interacted with:

Users/survivors of psychiatry
Self-advocates with intellectual disability
Family and professional care givers
Parents of adults with intellectual disability
Academics: lawyers, social scientists, philosophers
University students
Activists working in the fields of child rights, women's rights
Representatives of donor agencies
Policy makers, government representatives
Psychiatrists

My life savers in India have been:

Amul Icecream: My old malabsorption problem became so bad that for weeks I could hardly eat anything else than Amul icecreams (especially Strwberry). Amul is one of the oldest and most successful co-operatives in India. Unlike in the Post-Soviet world, here co-operatives are effective and popular enterprises.
Coconut Water: "The water of tender coconut, technically the liquid endosperm, is the most nutritious wholesome beverage that the nature has provided for the people of the tropics to fight the sultry heat. It has caloric value of 17.4 per 100gm."It is unctuous, sweet, increasing semen, promoting digestion and clearing the urinary path," says Ayurveda on tender coconut water (TWC)." (http://coconutboard.nic.in/tendnutr.htm)

Unienyzme tablets: This old Indian miracle drug helped me digest my food and relieved me from the discomfort and pain I had xperienced after even the smallest amount of food intake.

And of course my unbelievably patient and helping colleagues: Amita, Bhargavi, Elizabeth, Hari, Sandeep, and my peers from the peer support group.

Pilgrimage to the Grave of the First Tibetologist

2008-08-29T19:29:00.005+05:30

On the 25th August I visited the cemetary where Kőrösi Csoma Sándor, alias Alexander Csoma de Koros is buried. Wikipedia writes: "Sándor Kőrösi Csoma, also known as Alexander Csoma de Kőrös, born Csoma Sándor (March 27, 1784 [2] - April 11, 1842), was a Hungarian philologist and orientologist, author of the first Tibetan-English dictionary and grammar book. He was born in Kőrös, Transylvania. His birth date is often credited as April 4, which is literally his baptism day. Hoping that he would be able to trace the origin of the Magyar ethnic group, he set out for the East in 1820, and after much hardship along the way, arrived in Ladakh. Under great privation there, despite being aided by the English government, he devoted himself to the study of the Tibetan language. In 1831, he settled in Calcutta, where he compiled his Tibetan Grammar and Dictionary and catalogued the Tibetan works in the library of the Asiatic Society. He died in Darjeeling just as he was setting out for fresh discoveries. He is said to have been able to read in seventeen languages. De Kőrös is widely seen as the founder of Tibetology."

On February 22, 1933, Csoma was officially canonized as a bodhisattva in Tokyo. To honour the occasion, a statue of the Hungarian lexicographer seated in meditation posture was installed in the Japanese Imperial Museum.

Towards the Wonderful Himalayas

2008-08-29T18:47:00.004+05:30

After the Guwahati consultation, on the 24th August Bhargavi, her daughter Prabha and myself travelled to Darjeeling. The home of tea, the Queen of the Hills is described by Wikipedia as: "Darjeeling (Nepali: दार्जीलिङ्ग (help·info) ) is a town in the Indian state of West Bengal. It is the headquarters of Darjeeling district, in the Shiwalik Hills on the lower range of the Himalaya, at an average elevation of 6,982 ft (2,134 m). During the British Raj in India, Darjeeling's temperate climate led to its development as a hill station (hill town) for British residents to escape the heat of the plains during the summers, becoming known as the Summer Capital.
Darjeeling is internationally famous for its tea industry and the Darjeeling Himalayan Railway, a UNESCO World Heritage Site. The tea plantations date back to the mid 19th century as part of a British development of the area. The tea growers of the area developed distinctive hybrids of black tea and fermenting techniques, with many blends considered among the world's finest.[1] The Darjeeling Himalayan Railway connecting the town with the plains was declared a World Heritage Site in 1999 and is one of the few steam engines still in service in India.
Darjeeling has several British-style public schools, which attract students from many parts of India and neighbouring countries. The town, along with neighbouring Kalimpong was a major center for the demand of a separate Gorkhaland state in the 1980s, the democratic movement for a separate state has begun again, this time without any accompanying violence. In recent years the town's fragile ecology is threatened by a rising demand for environmental resources, stemming from growing tourist traffic and poorly planned urbanisation."

We were flying to Bagdogra via Calcutta. In Bagdogra we visted an inclusive education programme for children with disabilities.

As it was a weekend day, we met only a few blind children who were singing and playing the tabla.

After a 3 hours drive up to the clody, rainy hills we arrived at Darjeeling, where after some adventures found our hotel, the beatiful Dekeling Resort.
"Hawk's Nest Resort combines every comfort and convenience with a unique experience of British and Tibetan history. Constructed in the late 19th century by Sir William Ferguson Ducat. The mansion is typical of those built by British of the Raj period who favoured Darjeeling as a summer retreat from the heat of the Indian plains. Recently restored to its original splendour by the Dekeva family. Hawk's Nest is now available for discriminating vacationers and honeymooners looking for a very special experience.

Each of the four luxury suites include two large rooms cable television plus a large private bath with adequate supply of hot and cold water. The authentic wood and glass work in each room is complemented by original tiled fireplaces which have been carefully restored to working order. A supply of fuel is always at hand and our staff is at your service to assist in keeping a warm glow in the hearth and to bring delicious meals from our Resort kitchen. Each suite enjoys a view of our floral gardens and the Darjeeling hills, crowned by the spectacular Kanchenjunga range." (http://dekeling.com/#Dekeling%20Resort)

23 August: North-Eastern Consultation on Legal Capacity and Supported Decision Making

2008-08-29T18:11:00.005+05:30

This consultation was attended by about 50 participants, coming from civil society and the academia. Learning from our experiences in Bangalore we slightly modified our presentation. Amita started with placing the National Trust Act and its provision on limited guardianship into the historical context. I gave concrete examples for support networks and spoke about the Swedish personal ombudsperson programme and the work by the Canadian Association for Community Living.

Several unexpected barriers disabled the success of the meeting. Lawyers from the Law School's disability law unit prepared a textual recommendation on how to amend the National Trust Act to become compatible with the Convention on the Rights of Persons with Disabilities. We, as resource persons were unaware of this work. Further complicating the situation the textual proposal conceptually differed from our consultation paper which had been sent to all the participants well in advance in the sense that their proposal allows for guardianship in cases of acute conditions of disability when the person is unable to form an opinion and communicate that.

The other barrier was that most participants were unprepared for the consultation. We understand that the new paradigm of recognition of full legal capacity in conjunction with the right to support in decision making takes time to understand, however if people come to consultations without making the effort to even read the consultation paper, no substantive discussion can be expected.

Amita and I decided to rewrite the consultation paper with including a more in-depth historical context and concrete examples for support networks. We also need to think about how to organise effective consultations.

The most troubling aspect of this consultation was the effectiveness of consultations. CRPD is explicit about the states' duty to consult and involve persons with disabiltiies through their organisations in every decisions affecting their lives. The question is what will guarantee that those consultations will contribute to the affairs in a substantive manner. In our case we had the most supportive chair of the National Trsut, who has full understanding of the rights based approach to disability in general, and legal capacity in particular. We had organisers of high academic and civil competence. And the outcome is still very poor.

We are convinced that a meaningful participation of persons with disabilities who advocate for themselves is a sine qua non condition for successful consultations. At the Bangalore meeting we had a dozen well empowered, skilled self-advocates. In Guwahati no one with an intellectual disability was present.

Heading to the Land of Tea: Flying to Guwahati

2008-08-29T17:51:00.004+05:30

On the 22nd August I travelled with Bhargavi and her daughter to Guwahati, where we participated at the North-Eastearn consultation on the Amendment to the National Trust Act. We were flying via Calcutta and Delhi. At the Guwahati airport we met Amita Dhanda, the other resource person to the consultation.

Guwahati is the largest city of the state Assam. Assam, one of the North-Eastern states is famous of its tea, and recently unfortunately also of terrorism.

The nature around the city was what I desparately needed to calm me after my crisis. My hotel, the Bellevue had a wonderful view on the river Brahmaputra, the second longest river in the world.

In the evening our hosts organised a lovely party in the restaurant of the hotel.

Sightseeing in Pune

2008-08-29T17:36:00.007+05:30

On the 20th August I had another day with sightseeing in Pune. First I visited the cave temple, Pataleshwar. Pataleshwar cave is an example of Rock cut architecture.

Located in the city of Pune in the Maharashtra state of India, Pataleshwar is not really a cave at all, but one of many modest examples of the Maharashtran temples carved from living rock.
The "cave" is a Shiva temple and out buildings carved of living basalt. The black rock has been carved into pillars, seating areas, rooms, and so on. Notable is the heart of the cave, a cube-shaped room about 3-4 meters on each side, that houses a lingam. Still in use, the lingam is anointed with ghee and yogurt. A brass temple bell hangs outside the basalt entryway.
Unlike other nearby 'caves' such as Ellora, Pataleshwar is fairly simple...there are a very few ornate carvings. (Retrieved from "http://en.wikipedia.org/wiki/Pataleshwar_cave")

Then I went to the Raja Dinkar Kelkar Museum.

The Raja Dinkar Kelkar Museum is in Pune, Maharashtra, India. It contains the collection of Dr Dinkar G. Kelkar (1896–1990), dedicated to the memory of his only son, Raja, who died early.
The collection was started around 1920 and by 1960 it contained around 15,000 objects. In 1962, Dr Kelkar handed his collection to the Department of Archaeology within the Government of Maharashtra.
The museum now holds over 20,000 objects of which 2,500 are on display. These consist of Indian mainly decorative items from everyday life and other art objects, mostly from the 18th and 19th centuries. There is a particularly fine collection of musical instruments. (http://en.wikipedia.org/wiki/Raja_Dinkar_Kelkar_Museum)

Finally I visited the famous Aga Khan Palace, where Gandhi, his wife, Kasturba and his secretary were detained after the Quit India. Aga Khan Palace is situated in the Yerwada area of Pune. Sultan Mohammed Shah, Aga Khan III, had the palace constructed in the year 1892. The aim behind the construction of the Aga Khan Palace was to provide employment to the people of the nearby areas, who were hit by famine. Prince Karim El Husseni, Aga Khan IV, donated the palace to India in 1969, in the honor of Gandhiji and his philosophy. Aga Khan Palace is also known as Gandhi National Memorial because of its close association with Mahatma Gandhi.
One of the major attractions of the Aga Khan Palace is the samadhis (memorials) of Kasturba Gandhi (wife of Mahatma Gandhi) and Mahadev Desai (a long-time aide of Mahatma Gandhi). Since both of them breathed their last in here, Charles Correa had their samadhis built in the grounds of the palace itself. Gandhi's ashes are also interred at the Gandhi National Memorial of Poona. Exhibitions are held at the palace on a regular basis to acquaint people with the life and career of Mahatma Gandhi.

The palace served as the venue for the famous movie Gandhi. Since 1980, the management of the museum, samadhis and campus of the Agakhan Palace is under the Gandhi Memorial Society. The museum inside the palace complex has rich collection of pictures, depicting almost all the important incidents in the life of Mahatma Gandhi. There is also a wide assortment of his personal items like utensils, clothes, mala, chappals (slippers), letter written by Gandhiji on the death of his secretary, etc.

Recovering from Crisis - Visit to Shaniwarwada

2008-08-21T12:08:00.002+05:30

I spent three days out of office, recovering from my crisis. Unfortunately I had to cancel my planned programme in Calcutta, where I was to participate in a meeting on the Convention on the Rights of Persons with Disabilities. I am regretful and hope that I shall be able to spend time with colleagues in Calcutta later.

Tuesday evening I went to Shaniwarda in the hope to see its Light and Sound Show. The website I used said that the show is on every night. This was not the case as it turned out that the only day when there is no show is Tuesday!

Shaniwarwada (Marathi: शनिवारवाडा) is a palace fort in the city of Pune in western Maharashtra, India. It covers six and a quarter acres in central Pune. It was constructed in 1732 as the seat of the Peshwa (prime ministers of the Maratha Empire), and remained the political capital of the Empire until its annihilation. The fort itself was largely destroyed in 1828 by an unexplained fire, but has the surviving structures are now maintained as a tourist and archaeological site.

Psychiatrists for Force?

2008-08-18T15:02:00.002+05:30

If I were a star journalist I would give the headline: Psychiatrists in India advocate for force. Not being a journalist enables me to be more objective. It was only a number (and not all) of psychiatrists who advocated for force in psychiatry. And there were some others. though silent but clear in eyes who disagreed their colleagues. Me in crisis. I am not exposing danger to myself or others. Will they still come and incarcerate me in a locked (subintensive) ward? I am scared. Who are the persons there behind their psyhiatrist's masks? And why?

Encountering Crisis

2008-08-18T14:17:00.003+05:30

Encountering psychosocial crisis is not nice an experience anywhere, let alone in another continent. The meeting of the Indian Psychiatric Society triggered retraumatization. I am in a crisis thanks to distinguished highly qualified helping professionals. C'est la vie.

Meeting the History: Visit to Mahabalipuram

2008-08-18T09:39:00.002+05:30

Attempting to relax the trauma triggering IPS event on Sunday I went to Mahabalipuram. "The monuments are mostly rock-cut and monolithic, and constitute the early stages of Dravidian architecture wherein Buddhist elements of design are prominently visible. They are constituted by cave temples, monolithic rathas (chariots), sculpted reliefs and structural temples. The pillars are of the Dravidian order. The sculptures are excellent examples of Pallava art.
It is believed by some that this area served as a school for young sculptors. The different sculptures, some half finished, may have been examples of different styles of architecture, probably demonstrated by instructors and practiced on by young students. This can be seen in the Pancha Rathas where each Ratha is sculpted in a different style.
Some important structures include:
Thirukadalmallai, the temple dedicated to Lord Vishnu. It was also built by Pallava King in order to safeguard the sculptures from the ocean. It is told that after building this temple, the remaining architecture was preserved and was not corroded by sea.
Descent of the Ganges - a giant open-air bas relief
Arjuna's Penance - relief sculpture on a massive scale extolling an episode from the Hindu epic, The Mahabharata.
Varaha Cave Temple - a small rock-cut temple dating back to the 7th century.
The Shore Temple - a structural temple along the Bay of Bengal with the entrance from the western side away from the sea. Recent excavations have revealed new structures here. The temple was reconstructed stone by stone from the sea after being washed away in a cyclone.
Pancha Rathas (Five Chariots) - five monolithic pyramidal structures named after the Pandavas (Arjuna, Bhima, Yudhishtra, Nakula and Sahadeva) and Draupadi. An interesting aspect of the rathas is that, despite their sizes they are not assembled — each of these is carved from one single large piece of stone."

The 2004 tsunami had a major impact here. "An ancient port city and parts of a temple built in the 7th century may have been uncovered by the tsunami that resulted from the 2004 Indian Ocean earthquake. As the waves gradually receded, the force of the water removed sand deposits that had covered various rocky structures and revealed carvings of animals, which included an elaborately carved head of an elephant and a horse in flight. A small square-shaped niche with a carved statue of a deity could be seen above the head of the elephant. In another structure, there was a sculpture of a reclining lion. The use of these animal sculptures as decorations is consistent with other decorated walls and temples from the Pallava period in the 7th and 8th centuries.
The Archaeological Survey of India sent divers to begin underwater excavations of the area on February 17, 2005." (Quotes from Wikipedia)

Bharatanatyam: Classical Indian Dance

2008-08-18T09:32:00.002+05:30

In the evening after the Indian Psychiatric Society meeting there was a Bharatanatyam session. According to Wikipedia "Bharatanatyam traces its origins to the Natya Shastra written by Bharata Muni, a Hindu sage. In ancient times it was performed as dasiattam by temple Devadasis. Many of the ancient sculptures in Hindu temples are based on Bharata Natyam dance postures karanas. In fact, it is the celestial dancers, apsaras, who are depicted in many scriptures dancing the heavenly version of what is known on earth as Bharatanatyam. In the most essential sense, a Hindu deity is a revered royal guest in his temple/abode, to be offered a standard set of religious services called Sodasa Upacharas ("sixteen hospitalities") among which are music and dance, pleasing to the senses. Thus, many Hindu temples traditionally maintained complements of trained musicians and dancers, as did Indian rulers.
Bharata Natyam as a dance form and carnatic music set to it are deeply grounded in Bhakti. Bharata Natyam, it is said, is the embodiment of music in visual form, a ceremony, and an act of devotion. Dance and music are inseparable forms; only with Sangeetam (words or syllables set to raga or melody) can dance be conceptualized.

Essential ideas
Bharatanatyam is considered to be a fire-dance — the mystic manifestation of the metaphysical element of fire in the human body. It is one of the five major styles (one for each element) that include Odissi (element of water), and Mohiniattam (element of air). The movements of an authentic Bharatanatyam dancer resemble the movements of a dancing flame. Contemporary Bharatanatyam is rarely practiced as Natya Yoga, a sacred meditational tradition, except by a few orthodox schools (see Yoga and Dance)."

Celebration of Brothers and Sisters

2008-08-18T09:23:00.001+05:30

On 16th August I had the privilege to see the Raksha Bandhan festival. Wikipedia writes: "Raksha Bandhan (the bond of protection in Hindi) is a Hindu festival, which celebrates the relationship between brothers and sisters. It is celebrated on the full moon of the month of Shraavana.
The festival is marked by the tying of a rakhi, or holy thread by the sister on the wrist of her brother. The elder brother in return offers a gift to his sister and vows to look after her same as elder sister return offers to younger brother. The brother and sister traditionally feed each other sweets. It is not necessary that the rakhi can be given only to a brother by birth; any male can be "adopted" as a brother by tying a rakhi on the person, that is "blood brothers and sisters", whether they are cousins or a good friend. Indian history is replete with women asking for protection, through rakhi, from men who were neither their brothers, nor Hindus themselves. Rani Karnavati of Chittor sent a rakhi to the Mughal Emperor Humayun when she was threatened by Bahadur Shah of Gujarat. Humayun abandoned an ongoing military campaign to ride to her rescue.
The rakhi may also be tied on other special occasions to show solidarity and kinship (not necessarily only among brothers and sisters), as was done during the Indian independence movement."

Panel Discussion on the Right to Marriage at the Indian Psychiatric Society

2008-08-18T09:03:00.002+05:30

Last Saturday I participated in a panel discussion on the theme "Marriage, Mental Illness and Law: an Indian Context". The unusual discussion at the Continuing Medical Education event for the first time covered user and carer perspectives as well as the views of a psychiatrist. The discussion was moderated by Amita Dhanda. The session resulted in a rather incoherent and emotionally driven debate on the need for force in psychiatry and other issues. The user and carer perspectives were more or less treated as if they had not been articulated the debate focussed on Amita's comments. The experience raises the question if such meetings are useful for human rights advocates at all. For me this was just exhausting time waste and trigger of traumatic experiences.

Flying to Chennai

2008-08-15T09:13:00.005+05:30

Today I am flying to Chennai where I shall participate in a moderated panel discussion on Marriage, Mental Illness and the Indian Law. The discussion will be part of the Indian Psychiatric Society's Continuos Medical Education programme. The session will be moderated by Amita Dhanda, beside me a care giver from Delhi (who also attended Bapu's National Care Givers' Training) and a psychiatrist will be on the panel.

Chennai (Tamil: சென்னை formerly known as Madras (help·info), is the capital of the Indian state of Tamil Nadu. Located on the Coromandel Coast of the Bay of Bengal, Chennai had a population of 4.2 million in the 2001 census within its municipal corporation.[2] The urban agglomeration of Chennai has an estimated population of 7.5 million,[citation needed] making it the fourth largest agglomeration in India.
The city was established in the 17th century by the British, who developed it into a major urban centre and naval base. By the 20th century, it had become an important administrative centre, as the capital of the Madras Presidency.
Chennai's economy has a broad industrial base in the automobile, technology, hardware manufacturing, and healthcare industries. The city is home to much of India's automobile industry and is the country's second-largest exporter of Software, information technology (IT) and information-technology-enabled services (ITES), behind Bangalore.[3][4] [5] [6] Chennai Zone contributes 39 per cent of the State’s GDP. Chennai accounts for 60 per cent of the country’s automotive exports and is sometimes referred to as Detroit of India.[7][8][9]
The city is served by an international airport and two major ports; it is connected to the rest of the country by five national highways and two railway terminals. Thirty-five countries have consulates in Chennai. [10]
Chennai hosts a large cultural event, the annual Madras Music Season, which includes performances by hundreds of artists. The city has a vibrant theatre scene and is an important centre for the Bharatanatyam, a classical dance form. The Tamil film industry, known as Kollywood, is based in the city; the soundtracks of the movies dominate its music scene. Chennai is known for its sport venues and hosts an Association of Tennis Professionals (ATP) event, the Chennai Open. The city faces problems of water shortages, traffic congestion and air pollution. The state and local governments have undertaken initiatives such as the Veeranam project, Rainwater harvesting and the construction of mini-flyovers to address some of these problems. (After Wikipedia)

Independence Day

2008-08-15T09:10:00.002+05:30

Today India celebrates her Independence Day. Here comes the history of the day after Wikipedia.

On 3 June 1947, Viscount Lord Louis Mountbatten, the last British Governor-General of India, announced the partitioning of the British Indian Empire into India and Pakistan, under the provisions of the Indian Independence Act 1947. At the stroke of midnight, on 15 August 1947, India became an independent nation. This was preceded by Pandit Jawaharlal Nehru's famous speech titled Tryst with destiny.

"At the stroke of the midnight hour, when the world sleeps, India will awake to life and freedom. A moment comes, which comes but rarely in history, when we step out from the old to the new, when an age ends, and when the soul of a nation, long suppressed, finds utterance..... We end today a period of ill fortune, and India discovers herself again."

Prime Minister Nehru and Deputy Prime Minister Sardar Vallabhai Patel invited Lord Mountbatten to continue as Governor General of India. He was replaced in June 1948 by Chakravarti Rajagopalachari. Patel took on the responsibility of unifying 565 princely states, steering efforts by his “iron fist in a velvet glove” policies, exemplified by the use of military force to integrate Junagadh, Jammu and Kashmir, and Hyderabad state into India. J&K became a part of India when Pakistan laid siege and the then king Maharaja Hari Singh signed the Instrument of Accession with India to save J&K from Pakistan. India responded on behalf of J&K by sending in its armed forces to counteract the Pakistani attack. Later PM Nehru went to UN and a cease fire was declared. Pakistan has not withdrawn its military forces from the occupied Kashmir, and the territory termed as POK (Pakistan Occupied Kashmir) has ever since been a cause of contention between India and Pakistan.
The Constituent Assembly completed the work of drafting the constitution on 26 November 1949; on 26 January 1950 the Republic of India was officially proclaimed. The Constituent Assembly elected Dr. Rajendra Prasad as the first President of India, taking over from Governor General Rajgopalachari. Subsequently, a free and sovereign India absorbed two other territories: Goa (liberated from Portuguese control in 1961) and Pondicherry (which the French ceded in 1954). In 1952, India held its first general elections, with a voter turnout exceeding 62%; in practice, this made India the world's largest democratic country in the history of the modern and ancient world.

Lecture at the ILS Law College

2008-08-14T15:44:00.002+05:30

Today I gave my lecture on the institution of human rights defenders at the Indian Law Society's Law College in India. The lecture focussed on my personal experience and history and also outlined a number of systemic human rights violations in the mental health care system in Hungary, in Europe and worldwide. The discussion was centered about human rights abuses, force, discriminatory practices and legislations as well as on traditional healing. I emphasised that more research is needed on the traditional healing centers and on their possible contribution to mental health. The experiences of those who seek help at those centers is central. A major difference between scientific psychiatry and traditional healing is that unlike in the former, in traditional healing people cannot be legally forced. People go there on their feet and leave on their feet also. Many of the users of those centers seek help there after failing in receiving help they find useful in the mainstream services.

Speaking Truth to Power in Pune

2008-08-13T11:45:00.003+05:30

On the 14th August I shall talk about the institution of human rights defenders at the Indian Law Society Law College.

The Indian Law Society was established in 1923 as a Public Charitable Trust registered under the Societies Registration Act. The Indian Law Society established the Law College in 1924, which has since then established itself as a premier institute for legal studies in India. In 2004, the ILS Law College was accredited the A+ level by NAAC. Set amidst a sprawling green campus in the heart of Pune, it offers students a holistic environment that encourages exposure to social, cultural, and physical activities that complement the top-of-the-class legal education imparted by the college.

Meeting with Mental Health policy Makers Cancelled

2008-08-13T11:33:00.002+05:30

Yesterday's meeting with Mahrashtra mental health policy makers was cancelled because of the traffic blockades caused by the heavy rains.

Monsoon

2008-08-11T14:04:00.002+05:30

We missed rains in the first two months of the monsoon both in Andra Pradesh and in Maharashtra, resulting in several hours of power cuts each day and problems with accessing water. Before I traveled to Hyderabad the heavy rains arrived there. But the heavy monsoon resulted in tragedies as well.

"Hyderabad: A truck was washed away in a flash flood in the Buddhist town of Amaravati in Andhra Pradesh on Sunday killing 10 people as the death toll from the incessant rains in the last three days mounted to 59. The state government put the toll at 30. As many as 12 people were missing in the incident at Amaravati when the driver took the vehicle into a stream unable to distinguish between the river and the road which was under 7 ft of water. Transport minister Kanna Lakshminarayana said 13 people swam to safety. The state continued to grapple with large-scale loss of human lives and destruction caused by the deluge. Fourteen people have died in Hyderabad alone. The other deaths occurred in Krishna district (16), West Godavari (5), East Godavari (3), Guntur (9), Nalgonda (4), Medak (3), Visakhapatnam (2) and Warangal (3). Most of the deaths were either due to house collapses or floods, officials said. Chief minister Y.S. Rajasekhara Reddy said the government has opened 85 relief camps across the state for the displaced people. TNN "

By the time I arrived back at Pune, the situation here in Maharashtra became as bad as in Andra Pradesh.

"Pune: The trekking adventure of a man and his daughter turned tragic after they were feared drowned at the Vikas Valley canal at Khandala on Sunday evening. Rajendra Chingle (36) and his daughter Snehal (13), residents of Karvenagar, were part of a 22-member trekking expedition which had gone to Khandala on Sunday afternoon. As Snehal neared the canal, she slipped and fell in the water. Rajendra jumped in to save her, but both were swept away by the force of the canal water. Their bodies could not be traced till late on Sunday night. A case has been filed with the Lonavla police station. The only confirmed casualty of the day was in Bhiwandi, Mumbai, where a portion of a building came crashing down, killing a six-year-old girl and injuring nine others.

The mechanical workshop building of the Sinhgad Institute of Technology at Lonavla (left) caved in on Sunday morning after it was hit by a landslide (background). What is visible is only the top floor of the ground-plus-two storey structure."

Meeting with Maharashtra mental health policy makers

2008-08-11T10:50:00.003+05:30

Tomorrow, on the 12th August I, as member of the Bapu Trust's Centre for Advocacy in Mental Health's team, shall meet with Maharashtra State mental health policy makers. I will talk about the experience of the user/survivor controlled Hungarian Mental Health Interest Forum on how to bring about changes in mental health policies via a meaningful involvment of the user community. The meeting will be part of the Bapu Trust led Jan Manasik Arogya Abhiyan (JMAA) campaign.

Background information on mental health in Maharashtra

JAN MANASIK AROGYA ABHIYAN [JMAA]
A people's campaign for the fundamental rights and freedoms of persons with a psychiatric disability, MaharashtraConcept Note
History of the movement
The Goals of JMAA
The Objectives of JMAA
Scope of the mental health sector
Condition of mental hospitals in India
Private care
Medico-legal interventions in mental health
Mental health, budgets and spending
State policy in mental health
Mental illness and disability
Mental Health Act, 1987
Traditional knowledge in mental health
Media
Nameless people
Building partnerships
Scope of rights for persons with a mental illness :
Jan Manasik Arogya Abhiyan (JMAA) is a human rights based, people's campaign in the area of mental health. It is a state level forum working in Maharashtra aiming to humanize the mental health system and restore the self determination, rights and dignity of persons with psychosocial disabilities. It is a platform built in order to engage various stake holders on the vital issue of the “right to mental health care”. The people’s campaign aims to press for service related reform in the mental health sector, and good quality mental health care, while being equally concerned about the entire scope of human rights violations in mental health. The JMAA aims to foster and strengthen a societal discourse on “human rights” for persons with psychiatric disabilities based on the values of citizenship for all, full autonomy, personal liberty, total well being and access to justice.
Persons with psychiatric disability are considered by modern mental health discourses (law, science, services, social attitudes) as lacking “capacity” and as non-persons. For example, persons with psychiatric disabilities do not have the right to vote, to hold public office, to marry, to adopt a child, to enter into contract, etc. In the service sector, such persons are seen as not being capable of taking decisions about their own care and treatment. Consent from psychiatric patients is mostly not taken. In society at large, they are seen as not being capable of taking major life decisions. JMAA challenges these negative views.
JMAA also challenges the various legal, scientific and social practices that result from these views. Such views have led to a situation where the rights of persons with the disability are not recognized in any sector: legal, service or societal. Most socio-economic and civil political rights are taken away from them. JMAA endorses the fundamental rights and liberties of persons with psychiatric disability, on a par with all other persons in society. JMAA emphasizes the fact that a regime of equal opportunities and non-discrimination must be created to enhance the quality of life of persons with such disabilities.
History of the movement:Why is there a need to start another campaign? Is it not possible to mainstream the agendas in mental health through other existing people's movements or human rights forums?
Persons labelled with a "mental illness" are the most marginalised in society. They are treated as people without histories and as voiceless people. There has to be a space for their mobilisation and political participation in decisions made about their lives, health and well being. JMAA is founded on principles of "self-determination" of persons with a psychosocial disability.
Maharashtra has seen the emergence of the self help movement in mental health. The first user mobilisation for mental health patients in India was started in Pune, called Sihaya Samooh, leading to the formation of other self help groups. JMAA is linked to these user led initiatives in mental health.
JMAA is also linked to the spirit and vision underlying other movements: health care rights, women’s rights, and other human rights campaigns in the development sector. We however, note that, in these forums, issues of the psychosocially disabled and of those with a mental illness, remain low priority areas or totally invisible. Various mental health forums exist (such as the National Federation for the Mentally Ill) in India, but these do not address the self determination of users of mental health services or issues pertaining to their fundamental rights and freedoms. In other states (e.g. Karnataka) forums exist for influencing the judiciary, the policy makers and the state department in mental health sector reform. In Maharashtra, there is no such forum. We have much to learn from initiatives in other regions of India, which can be consolidated for Maharashtra as well.
The problems of persons with a psychiatric disability are different from other vulnerable groups (e.g. health care patients) and needs to be addressed as an independent area of activism. Bapu Trust initially proposed this Campaign for these reasons.
The Goals of JMAA are:
To build a mental health platform / coalition comprising of diverse groups of organisations and individuals for bettering the quality of mental health services in the state of Maharashtra
To educate various constituencies in society on the civil as well as care and treatment rights of persons with mental illness
To bring forth relevant information and materials on the status of mental health services in Maharashtra and to lobby with the local government and relevant authorities
To advocate the fundamental rights and freedoms of persons with psycho-social disabilities in the state of Maharashtra
To connect with local or national platforms for bringing about changes in thinking and practice within the mental health system in India
The Objectives of JMAA are:
To mobilise users of mental health services in the State of Maharashtra
To spread awareness about the self-determination, and the rights and freedoms of persons with a psychosocial disability in our society
To conduct advocacy research on issues pertaining to the rights of persons with mental illness
To take JMAA to all human rights, policy and legal forums, and to mainstream our issues in other people's movements
To advocate for a human rights compliant law and policy for persons with a psychosocial disability
To bring national and international human rights thinking into the local campaign
Scope of the mental health sectorThere are huge numbers of men and women who are diagnosed with a mental illness every year in India. This is only the tip of the iceberg, however, as psychiatric diagnosis captures only the most disabling layer, viz. those whose distress levels reach a clinical stage. Psychological and psychosocial studies show that a continuum exists from good mental health up to mental illness and disability, and that the number of people in situations of psychosocial distress is quite high. Studies which measure psychiatric symptoms are probably more reflective of community need, than diagnosis based studies. Qualitative studies are even richer in the presentation of community needs. Social vulnerability is surely a dimension associated with mental distress and disability.
It is generally accepted in the Indian context, that approximately 2-3% of the population suffer from Severe Mental Disorders (schizophrenia, bipolar disorders, organic disorders), whereas the prevalence of common mental health disorders, a broader spectrum of clinically significant mental distress, could be in the range of 10-25%, depending on the socio-demographic context (age, educational status, marital status, whether in conflict or disaster situation, economic status, etc.) Sex / Gender are important determinants of being diagnosed with a mental illness. Vulnerable groups (women, elderly, poor, etc.) are picked out more often on such psychiatric surveys than other groups, showing higher levels of stress relating to social inequality, violence, trauma and deprivation. Domestic, cultural and child related abuse and violence are highly pertinent in the context of women’s mental health. Typically also, going by the data gathered from primary health care sites in India as well as elsewhere, physical health and mental health are inter-related. This has particular significance for women, where the prevalence of vitamin and mineral deficiency, malnutrition, anaemia, and thyroidism after pregnancy are quite high, showing up as psychological distress.
Condition of mental hospitals in India:The mental health research in the country has shown a high “need” among communities for good mental health services, particularly those types of services, which will address psychosocial problems (psychotherapies, counselling, community mental health programs, peer support, home visitors, etc.) The condition of mental hospitals in India is described in the NHRC report, 1999.
The NHRC report, 1999, covered 37 government facilities. 37.8% of mental hospitals in India, including Maharashtra, still retain a jail like structure they had at the time of their inception. 56.8% have high walls. Low patient : cot ratio (1:1.3), suggests over crowding in hospitals. Toilet : patient ratio is 1:5. 35% of hospitals had very dirty toilets, where there was no running water. 37.8% had inadequate lighting. 89.2% had closed / locked wards. 51.3% had only closed wards. 43.2% of hospitals had solitary confinement cells. Cells do not have linen, water, beds or toilets. Patients remain locked all the time. They have to urinate and defecate in the cell itself. Criminal wards are worse off than other wards. In gross violation of the Mental Health Act, separate facilities for children were present in just 10.8% of the hospitals. Dinner is served at 5.30 or 6 pm in most hospitals. So patients have virtually nothing to eat for 13 to 14 hours. 70.3% of hospitals had very inadequate maintenance of hospital infrastructure. Privacy for patients in wards was there in only 41% of the hospitals. In 59.5% of hospitals clothes of patients are changed once in 2-3 days. In other hospitals frequency is even less. Case file recording is extremely inadequate. Only 51.4% of hospitals fully complied with the mental health law (Mental Health Act). Even routine blood and urine tests are not available in more than 20% of the hospitals even for the inpatients. Psychosocial investigation facilities are available in even fewer places. This is because of a lack of awareness of a multidisciplinary approach, the lack of trained professionals and absence of role clarity and functions. Direct shock treatment is still practiced in half the hospitals. Rehabilitation therapies are available in only two thirds of the hospitals. Only in 68% hospitals are family members allowed to visit patients. Even in these hospitals, there are restrictions in the visits to the patients in locked wards. Only 2% to 30% of patients used the facility to write letters, possibly because they are not encouraged or helped to write these letters. 75% of hospitals reported that the staff was sensitized about the rights of the mentally ill, but the visits revealed that most staff members were neither aware nor sensitized about the same. Emergency services are available only in 59.5% of the hospitals. Only 32% of the authorities felt that there were adequate facilities in the casualty. 51% of hospital authorities reported that they rated their own OPD service as inadequate. The psychiatrist : patient ratio in a majority of the hospitals are skewed, being as poor as 1:150 or even 1:200, when the ideal prescribed ratio is 1:10. In 21.6%, there are no posts of clinical psychologists. Even where there were posts, half of them were vacant. 50% of the hospitals therefore did not have a clinical psychologist. In 30% of the hospitals, there was no post of a psychiatric social worker. Wherever there are, one third of the posts were vacant. They were deskilled, being reduced to clerical staff or history takers. The MOs do not have any special training in the care of the mentally ill. 51% of the hospitals did not have a post of psychiatric nurse. 10.8% of the hospitals are functioning without the services of any nursing staff. This brief presentation of data shows that the overly medicalised mental health system in India is not able to match the needs even in terms of sheer numbers, not mentioning quality of care.
Studies have shown that
There are fewer beds for women than for men in most mental hospitals. The overall hygiene and environment of the female wards are far inferior to that prevailing in the men’s wards.
The female wards are often closed wards, whereas the men have better access to open spaces and open wards.
Visitors are fewer for the female patients, and long stay patients are higher in the female section.
Women’s emotional expression particularly dissent or anger is seen as a symptom and further treatment begun. Women are expected to conform to their stereotypes to be considered as a “good” patient.
Women’s reproductive health needs are least attended to in the mental hospitals. Menstrual hygiene is not provided for.
Self grooming, an important cultural and social expectation placed before women, is least attended to in these sites. Women’s heads are shaved, their clothing is inappropriate and undignified, other aspects of personal grooming (comb, oil, face powder, mirror, etc.) are not provided for.
Rehabilitation for women is also another huge area where thought has to be processed and work planned in a more gender sensitive manner.
More women than men with a severe mental disorder run the risk of desertion and homelessness, loss of custody of children, family, employment, etc.
Medico-legal procedures for men and women are differential, needing to be reviewed.
These are only examples of the inequality, discrimination and poor opportunity for women in the mental health sector. Other vulnerable groups (children, those with a different sexual orientation, the poor) have equally disempowering experiences within the mental health sector. Various Supreme Court directives, the directives of the High Court (Mahajan Committee Recommendations) and the NHRC recommendations are empty words before these large institutions of Maharashtra.
MaharashtraMaharashtra has a total of 4 state run mental hospitals. The total bed strength is 5695 in the 4 mental hospitals, which is one fourth the entire bed strength of mental hospitals in India. Long stay patients (who have stayed for more than 2 years) is the greatest in Maharashtra, indicating that these facilities are perceived as dumping grounds by the communities.
Thane mental hospital: All wards are locked wards. About 50% of patients have adequate cots and bedding. Most of the wards are overcrowded. The number of mental health professionals is far less when compared to the bed strength (1880 beds). Only 10% admissions are voluntary admissions. All others are involuntary commitments. 26% of patients are “long stay”, who have been there for five or more years. Women are not discharged without an escort. Facilities for medical emergencies are poor. The hospital does not have a casualty and emergency service. There is no short stay ward. The average time spent with an old patient is 5 minutes, and with a new patient is 15 minutes. As a result, interventions are mainly medical. Patients reported that bathing facilities are not adequate and clothes are dehumanizing, as they are not changed as frequently as they would like. Although the quantity of food may be adequate, it is not sufficient in terms of nutritive value. Management of patients is mainly medical, with the use of drugs and modified ECTs. Solitary confinement is being used. Patients complained that they were not being able to contact family members. There is hardly any psychosocial intervention. The occupational therapists have had no training in dealing with psychiatric conditions. Very few patients attend these facilities.
Pune mental hospital: Bed strength: 2540. The number of cots is inadequate, at the ratio of 1:5. Existing toilets, fans and lighting arrangements are not adequate. The staff patient ratio is inadequate considering the bed strength. Voluntary admissions: 27%. Female patients are not discharged without escort. There is an absence of psychiatric facilities at the district level, and so the hospital is the only service center. No emergency or casualty services. The average waiting time is 30 minutes to an hour, with 10 minutes being spent with each patient. No individual or family counseling. No separate wards for patients in acute and chronic phase. Both direct and modified ECT are being used. Pharmacotherapy is the mainstay of treatment. Physical restraint and solitary confinement are being used. The occupational therapists have had no training in dealing with psychiatric conditions. Very few patients attend these facilities. All are closed wards. Newer drugs are not available.
Nagpur mental hospital: Bed strength: 910. There are no open wards. Bathing facilities, toilets are inadequate. Voluntary admissions: only 14%. 46% of patients are long stay. Female patients are not discharged without escort. No casualty and emergency services. New cases: 15 minutes; follow up: 3-5 minutes. Newer drugs are not available. Direct ECTs are administered in OPD. Modified ECT is being given to inpatients. Psychosocial input is not provided. Pharmacotherapy is the mainstay of treatment. The occupational therapists have had no training in dealing with psychiatric conditions. Very few patients attend these facilities.
Ratnagiri: Bed strength: 365. All locked wards. Voluntary admissions: 79%. 25% patients are long stay. Female patients are not discharged without escort. No emergency or casualty services. New cases: 15 minutes; follow up: 5 minutes. Modified ECT administered when required in OPD. No psychosocial intervention. Management of patients is mainly medical, with the use of drugs, direct and modified ECTs. Very few patients attend occupational therapy facilities.
Private care
Population of Maharashtra and the number of doctors / clinical psychologists:There is a huge deficit of mental health services in Maharashtra, as in the rest of India.
Total population: 96752247
Estimated major mental disorders: 967522
Estimated minor mental disorders: 4837610
Existing hospital beds (government sector): 6073
Existing hospital beds (Private): 652
Available psychiatrists: 456; Ideal number: 967; Deficit: 481
Available clinical psychologists: 33; Ideal number: 484; Deficit: 451
Available psychiatric social workers: 44; Ideal number: 1934; Deficit: 1890
Available psychiatric nurses: 117; Ideal number: 672; Deficit: 555
Districts with psychiatric facilities: 17
Districts without psychiatric facilities: 18
Failure of the government machinery to address the mental health needs of communities has led to a surge in the number of private practitioners and rehabilitation centers. Over 70-80% of doctors in Maharashtra are in private practice, often working only in urban areas. While being educated on government subsidy, their contribution to the public health system is negligible. Large numbers of government posts remain unfilled. The local chapters of the professional organisations such as the Indian Psychiatric Society have not set standards of care for mental health practice in Maharashtra. The social context of people's lives is often not considered by the treating doctors. Over prescription, irrational drug treatments, and poly pharmacy plague the sector. Standardised tools for clinical assessments do not exist. Diagnosis is left to the subjective evaluations of doctors. Aspects of preventive and promotive services are overlooked. ECT is unregulated. The abuse of shock treatment in the Indian set up is a human rights issue. In Maharashtra, direct ECT is still being practiced by private mental institutions.
Medico-legal interventions in mental healthIn the medical sector, a clinical action may or may not have legal implications. In the mental health field, a clinical action has at the same time, legal implications. Data in the field shows that out of a 100 divorce petitions filed on the ground of “insanity”, 97% are filed by husbands against wives. This shows structural layers of vulnerability in the community, to a finding of mental illness. Everyday actions and decision making such as managing a bank account, or a property / financial asset, having a family, participating in social functions, etc. becomes extremely difficult given the present scope of the law. Many people who are employed get sacked when their diagnosed status is disclosed. Persons labeled with a mental illness, more significantly the women, live a life of stigma, discrimination and exclusion because the legal administration has allowed it. The law has in no way tried to alleviate this situation. Instead, it has set up its own barriers in every dimension of life.
Every time a person is diagnosed with a “mental illness”, certain medico-legal implications such as the above follow because of the way our laws are written up or executed. These legal implications can be used or abused by others with a vested interest in the personal or other aspects of the diagnosed patient’s life. Medical professionals called upon to execute the law (e.g. certification of legal capacity) often do not have the necessary legal trainings required for this responsible job. Corruption by professionals is not unknown, and neither is legal negligence. Recent cases reported in the press with respect to the Agra mental hospital show that false certification of a woman as mentally ill for purposes of easy divorce is a profitable business.
In order to effect the legal implications of a finding of mental illness, a certification is necessary. Psychiatrists have the power to issue such certificates of mental fitness. However there is no procedure in the profession by which the psychiatrists are trained in law to measure fitness or capacity. Therefore judgments by the psychiatrists become subjective and personal. This increases the risk of causing harm to the person and the risk of unfairly taking away a person's rights. Among all medical professionals, only psychiatrists have the power to direct the course of the lives of their patients legally.
The medico legal sector in mental health is totally involuntary, posing serious ethical contradictions with the larger biomedical sector, which is bound by patient consent and voluntarism. The implications of being diagnosed with a “mental illness” are also not there for a general health care patient. A charge of being of “unsound mind” can take away a range of human rights and opportunity for self determination (contracting, holding public office, employment, being married, adopting a child, voting, etc.) This charge of USM can result in the take over of a person’s life through guardianship arrangements. A charge of being “mentally ill”, in terms of legal scope and format, entails the same status as being accused of a crime, as the care & treatment laws are of a custodial nature. A person is committed to a hospital, often through the use of the many provisions in law for involuntary commitment and forced treatment. Therefore, before the eyes of the law, a person is an alleged mentally ill person, a perception in law which completely undermines the identity of the sick and the disabled. As noted above, most commitments to the mental hospitals in India are involuntary. Four out of the five commitment procedures written in law are involuntary, while even voluntary commitment is determined within the scope of the law.
The recently signed United Nations Convention on the Rights of Persons with Disability [CRPD] is providing an opportunity to foundationally challenge these presumptions. The Convention is giving us an opportunity to create an alternative legal framework for people with psychosocial disabilities.
Mental health, budgets and spending:Mental health is an invisible subject in public health debates and in policy. India spends a fraction of its total health budget on mental health. As we all know, public health itself is a highly neglected area. Money available has been spent mainly on hospital / tertiary care. Upto 80% of the money allocated to psychiatric hospitals are being spent on salaries, leaving very little for user centered programs or client rehabilitation. Recently, under the 10th five year plan outlay a budget of Rs. 190 crores was released to strengthen the mental health sector in India. However, much of this budget is towards upgradation of the mental hospitals and further creation of medical facilities. While the whole world is moving towards community, very little money has been allocated for strengthening the community mental health services. The situation for the XI five year plan does not appear to be very different. Hitherto, monies unutilised on the community mental health program has been returned back by the nodal agencies to the Govt of Maharashtra. The Government needs to also publicly account for the monies received under the X Plan.
Like the health industry, the mental health industry is working for profit. The pharmaceutical and instrumentation industry are economic beneficiaries of private practice. Many private residential facilities charge fees, which range anywhere between Rs. 8000/= to Rs. 20-25000/= per month to care for a client. Psychiatrists may charge between 250/= rupees to 600/= rupees per session. An ECT dose (6-10 ECTs) will cost anywhere between 1000/- rupees to 10000/- rupees depending on the type of facility. Families have to spend a lot of money on an everyday basis on expensive drugs. Often, for what is considered as chronic disability, this expenditure may be life long.
State policy in mental health: Mental health services have not kept pace with the demand or improved as much as the rest of the Health Services. The National Mental Health Program has not been revisited, since 1982. The NMHP emphasised community level interventions through District mental health programs. It resonated with the Alma Ata vision of mental health care for all. In 1996, a blue print for the District Mental Health Program was laid out for India, giving the following guidelines:
To provide sustainable basic mental health services to the community and to integrate these services with other health services
Early detection and treatment of patients within the community itself
To see that patients and their relatives do not have to travel long distances to go to hospitals or to nursing homes in cities
To reduce the stigma attached to mental illness through change of attitude and public education
To treat and rehabilitate mental patients discharged from the mental hospital within the community
The state will set in motion the process of finding suitable personnel for manning the DMH team. They can take in service candidates who are willing to serve in the pilot projects and provide them the necessary training in the identified institution
Catchment Area will be the patients from the district itself and adjoining areas
DMH team will be expected to provide services to the needy mentally ill persons and their families as follows
Most parts of India are largely underserved to address the needs of persons with a mental illness at the community level. India does not have a mental health policy.
The models developed in the state of Karnataka, by NIMHANS, were proposed to be replicated everywhere. In Maharashtra, there are 6 DMHP programs running, of which the one in Raigad district is the oldest. These programs have not been evaluated. The quality of services in these programs is very poor, being limited to drug dispensing at the community level. Psychosocial interventions are absent in all of the DMHPs dotting the country, and also in Maharashtra. It is quite clear that the mental health services are not matching up the service reality.
Mental illness and Disability The Persons with Disabilities Act, 1995, includes "disability caused by psychiatric problems". It is the last category of disability listed in the Act. States like TN and Karnataka are bringing about reforms in the mental health sector. The Maharashtra state government gives very low priority to this disability. There is no state initiative or program for persons with a mental illness. Officers in the commissionerate are not even aware that psychiatric disability is represented in the Act. There is no representation from this disability group in the state level committee. Very few people with a psychosocial disability in the state have received a disability certificate due to lack of awareness and tiring administrative procedure. Complaints filed in the disability department take many months, if not years, to be addressed. There are also inherent limitations of the Act, such as the exclusion of persons with psychosocial disability from job reservations. In a progressive move, a recent Bombay High Court judgment reinstated a mentally ill nurse who was forced to resign by the hospital management.
Mental Health Act, 1987The mental health sector is driven by the mental health law (MHA, 1987). MHA has been criticized for its many problems. It talks only about the procedure for admission. Three out of four types of admissions in the Act are involuntary commitments. The process of applying this Act is humiliating for the patients. Often unlawful deprivation of liberty happens. There are limitations on voluntary discharge. A cardiac patient may be discharged on his own reason and will, but a psychiatric patient will not be so discharged under our present statute concerning the custodialisation of the mentally ill (section 40 –44 of The Mental Health Act, 1987). The Act does not say anything about the rights of users within institutions. The NMHP is community based, whereas the law is completely custodial. There is no relationship between the two. The Act does not talk about rehabilitation at all, or how persons in hospitals can be mainstreamed in society and live lives of dignity. Therefore, it remains organ oriented in its approach. There are active forums now for law reform in this sector, which JMAA will participate in.
Traditional knowledge in mental healthSeveral traditional healing practices exist in Maharashtra, which offer psychological succor to communities. They exist in outlying areas where mental health services are simply not available. There is growing evidence base, which suggests the value of these practices in mental healing. However, the mental health system does not take this aspect into consideration.
Media The media characterises people with psychosocial disability as criminal, bad and violent. They become the subject for humour and ridicule. They are shown as sexually abnormal, helpless, weak and incapable of participating fully in community life. They are shown as a subject for sympathy, pathos or pity. They are shown as a burden on the society. A popular newspaper in Maharashtra literally witch hunted a patient and her family, when she attacked the editor of the said paper. Her photograph was put up in every article concerning the event and her mental health status was open to wide public scrutiny and display. The criminal case filed against her is still alive in a local court.
Mentally ill people are rarely shown as productive members of the community, as students, teachers, workers or as parents. Nor are they ever shown as normal people, with their usual joys and sorrows, who may sometimes have periods of distress. Their potential, capacity and creativity are not shown. Their lives are depicted as one of total and abject misery and lack of capacity.
The nameless peopleMost custodial institutions in Maharashtra (beggars' home, jails, state homes for women, remand homes, etc.) have a large proportion of people who are psychologically disabled. These institutions are literally parallel “mental hospitals”. These people are living in highly degraded conditions without any basic facility or mental health care provision. There is also a huge population of the homeless wandering mentally ill. There is no service facility in all of Maharashtra to serve this population. Mental hospitals, following a human rights PIL in the late ‘80s, have started placing severe restrictions on taking care of this population. The human rights violations of these groups are enormous.
Building partnerships: Through JMAA, we raise a call to solidarity, allying and partnering with individuals, groups, organizations and professionals, working in the field of human rights, people's rights, advocacy, mental health, disability and allied areas in the state of Maharashtra. This collective will give vision, direction, set the agendas and plan action for the campaign.
Scope of rights for persons with a mental illness :Right to life and liberty including
The right to bodily integrity; the right to a safe and violence free environment; the right to survival and to a life of quality; the right to voluntary care and treatment; the right to refuse treatment; Right to full legal capacity including
The right to marry; to enter into contracts (e.g. property, insurance); to adopt a child; to have children; right to work and opportunity; right to receive speedy justice; to hold professional licence; to legal representation; and the right to political representation.
Right to care and treatment including
The right to full information regarding care and treatment; informed choice; right of access to affordable, quality health care; right to non-medical care and treatment approaches; right of protection against cruel and degrading treatments; right to privacy and confidentiality.
Right to Community life and development
The right to education, livelihood, food, employment, housing, cultural life, sports and recreation, social security, the right to have intimate relationships, right to have children, the right to vote and hold public office.
JMAA convenor since 2005: The Bapu Trust, Pune.JMAA co-ordinator: Sadhana Khati (Susamvaad and Bapu Trust, Pune)JMAA organiser: Chandra Karhadkar (Bapu Trust, Pune)
Center for Advocacy in Mental HealthA research center of Bapu TrustKapil Villa, Plot no. 9Survey No. 50/4, Kondhwa KhurdPune-411048Tel: 020-26837644/47Email: wamhc@dataone.in; info@camhindia.org
The Campaign is supported financially by Action Aid India, Mumbai Regional Office.

Lecture at Anveshi

2008-08-10T21:15:00.006+05:30

Saturday evening I met with people from Anveshi, the prestigeous women's studies organisation in Hyderabad and gave a 3 hours lecture on my experiences as a survivor of psychiatry and human rights activist. In spite of the heavy monsoon that made traffic a nightmare about 25 people came to listen to the presentation and to participate in the subsequent discussion.

Anveshi was set up in 1985 in Hyderabad by a small group of activist-scholars to provide resources to research and develop a feminist theory relevant to women's lives in contemporary India. Today they are one of the foremost non-university research centers in India. Their work focuses on six research initiatives: education; health and health care systems; law and critical legal theory; dalits and minorities; development; and public domain. Projects in these initiatives examine the shifts in development theory; the crisis of medicine in the Indian context; hegemonic perspectives in school textbooks; the question of secularism and minority in Indian politics; the problematic nature of law and rights in domestic violence; and thinking about what it entails to be a 'Dalit woman' in modern India.

Their history of campaigns around violence and law in the last twenty years has forced a rethinking on questions of feminist law reform, rights and advocacy. Their involvement in the Uniform Civil Code debates in the 1990s enabled them to interrogate entrenched notions of nation, secularism and religion. All these insights drive their current work on minority. Drawing on their sustained work in women's health and the two health books resulting from it, they are currently collaborating with Christian Medical College, Vellore, on a project aimed at rethinking medical education in India.

Anveshi's work has constantly engaged with caste as it operates in the procedures and institutions of everyday life in modern India. Beginning with a strong focus on caste atrocities, discrimination and reservation policies, their work has since traveled to examining institutions such as welfare and education with the caste question in mind. Their research in school education has foregrounded the problems with existing wisdom on curricular transactions, children from marginalized backgrounds, and notions of ideal childhoods.

In all their research they have found it useful to situate women and their experiences in the relationships, institutions and structures that give them an objective reality: as recipients of health care policies; undervalued participants in political struggles; bearers of the costs of development; and victims of violence seeking state protection. Anveshi has been alert to the problems of dominant perspectives that focus solely on 'women', treating constitutive contexts such as nation, caste, development and culture as mere additive categories. This caution has enabled them to interrogate some of the major impasses of Indian feminism, and work towards crucial alliances in relation to caste, minority and law.

My birthday in Hyderabad

2008-08-10T21:09:00.003+05:30

On the 8th August I took a day off to relax and celebrate my birthday with Amita Dhanda. My Hyderabad stay has been a very intensive work visit with 8 lectures in 16 days. This evening we went to Restaurant Fusion 9 where we spent a nice, relaxing night with good food and wine.

Lecture at NALSAR on patents and innovations

2008-08-10T20:57:00.002+05:30

On August 7 I gave a lecture for 4th year students at NALSAR on patents and innovation. This lecture gave an introduction to how scientific discoveries and technological innovations are made and why current patent laws are problematic in the light of the research and development process. Law students learn about legal issues of intellectual property but they do not learn about the processes of research and innovation.

The history of electricity, the Human Genome Project and current patenting/licencing practices in the field of pharmacology were used to illustrate the need for a paradigm shift in order to protect intellectual property in a fair and just way for both the inventor and the potential beneficiaries.

National Commission for Protection of Child Rights, India Considers Work on Children with Disabilities

2008-08-06T15:24:00.003+05:30

As an unexpected outcome of the joint presentation by Amita Dhanda and myself at the International Child Rights Consultation the National Commission for Protection of Child Rights consider a focussed work on the implementation of the UN Convention on the Rights of Persons with Disabilities. Shanta Sinha, chairperson of the Commission (on the picture) became interested in the potential of the CRPD to advonce child rights for all children after listening to our presentation. Amita will meet Ms Shanta Sinha in Delhi in September to further discuss the planned actions.

We are most happy to learn about this development as in our lecture our aim was to convince participants of the Consultation that the way CRPD deals with the rights of the child shall have a consequence on the general child rights discourse and on the nterpretation of the Convention on the Rights of the Child as well. CRPD is much more child centered than CRC and provides with age and disability appropriate assistance as a right to exercise the evolving capacities while CRC mentions no right to support.

Lecture on Paradigm Shifts

2008-08-04T18:56:00.004+05:30

On Tuesday I gave a lecture for jurisprudence students at NALSAR Law University, Hyderabad. I introduced the Kuhnian theory of paradigm shifts through two examples from the history of physics: the Copernican revolution and the emergence of quantum physics. After the lecture a discussion followed on how the lessons learned from the history of science can be used to understand the progress in social sciences, humanities and legal theory. The discussion also addressed advocacy implications of the Kuhnian framework: how proponents of a new human rights paradigm can help the new model win. The example was the new paradigm of legal capacity with the right to support in decision making in the new UN Convention on the Rights of Persons with Disabilities.

Speaking Truth to Power: lecture on human rights defenders at NALSAR

2008-08-04T18:56:00.002+05:30

Today I gave a 45 minutes lecture for administrative law students at NALSAR Law University on the institution of human rights defenders. After sharing my personal story of how I became a human rights defender, I was talking on the challenges, needs and successes human rights advocates face on a day to day basis. The lecture was followed by another 45 minutes of lively discussions, covering as wide issues as the responsibility of international organisations, legal capacity of persons with disabilities, human rights and democracy, to mention but a few.

Bangalore: National Trust Act Consultation

2008-08-04T18:17:00.003+05:30

Last Friday evening Amita Dhanda and I were flying to Bangalore to participate as resource persons in the Southern Consultation on the National Trust Act amendment needed to bring that law in compliance with the UN Convention on the Rights of Persons with Disabilities. The meeting was held at the United Theological Centre and was attended by care givers, self-advocates and professionals working with people with intellectual and psychosocial (mental health) disabilities.

After the opening session care givers, professionals and self-advocates gave presentations. Self-advocates articulated their demand for their rights being recognised in order to live a dignified life of their choice. Family members expressed concerns about abuses of people with disabilities. Psychiatrist Srinivasa Murthy in his presentation appraised CRPD as a progressive instrument except for article 12, which was a surprising remark as the consultation was expected to focus on the issues emerging from the obligations under that article and because the recognition of legal capacity on an equal basis with others and the right to support in decision making have been seen by the international communities of both people with intellectual and psychosocial disabilities as the most important breakthrough in CRPD. He proposed that the consultation should look rather into the issues of education, rehabilitation and other articles in CRPD than legal capacity.

The somewhat unexpected and chaotic situation was saved by the chairperson of the National Trust, Ms Poonam Natrajan, who explained why these consultations were convened, why the consultation paper was drafted and encouraged the participants to deal with the questions formulated in our consultation paper.

After the other presentations Amita and I spoke rather about our motivations that guided us when drafting the paper than on the document itself, which had been sent to the participants prior to the meeting to enable them to prepare for a substantive discussion on the matter of legal capacity with the right to access support to make own decisions. We emphasised that the deprivation of legal capacity exposes persons with disabilities to exploitation and abuse rather than protect them. Also, deprivation of legal capacity deprives people of opportunities to develop capabilities. Legal capacity is a presumption of law and not an evidenced fact and in the absence of that presumption none of the other rights can be exercised.

Our presentation was very well received by the self-advocates and many of the family members understodd the paradigm shift in article 12 better. There were small group discussions on the questions originally proposed by us in the consultation paper.

The group of self-advocates clearly indicated that they were small in number at this consultation and urged the organisers to involve them more meaningfully in the future. They voted for the recognition of legal capacity with the right to support and gave concrete examples on how they in fact use their capabilities. The group of family members rightly tried to find the delicate balance between protection and empowerment and started to seriously think about the new paradigm. The group of professionals was the least capable one, they were not a group as director of Basic Needs India, Mr DN Naidu mentioned in his intervention. They were unable to appoint a spokesperson for the group and to reach consensus on any of the questions.

Mr JP Gadkari, president of the national family organisation PARIVAAR concluded the meeting with emphasising that it was a most educational consultation and that further learning is needed.

Amita and I arrived back in Hyderabad on Sunday night.

Paradigms in Physics and Psychiatry: Lecture at the Hyderabad Central University

2008-08-01T08:49:00.002+05:30

On the 31st July I had my lecture on paradigms in physics and psychiatry at the Department of Philosophy of the Hyderabad Central University. The lecture argued that the currently dominating bilogical paradigm of psychiatry has its roots in the Newtonian paradigm of physics and that this outdated paradigm, in combination with the legal authority to deprive people with mental disorders of their fundamental rights can easily result in inhuman situations. The lecture and the subsequent discussion called for a challenge to the hegemony of this paradigm enabling competing paradigms co-exist to provide with a more humane mental health care.

On Kuhn for Judicial Process Students

2008-07-31T11:39:00.002+05:30

On the 30th July I was participating in a judicial process class for final year students at NALSAR. After a brief introduction on Kuhn's theory on paradigm shift read by one of the students I spoke about paradigm shifts in more details, based on and reflecting to the presentation. This was followed by a lively discussion on how lessons learned in history of sciences can be transferred to the progress in social sciences and the theory of law. The class lasted one hour longer than scheduled and no one was bored!

Child Rights Consultation at NALSAR: Day 2

2008-07-31T11:25:00.002+05:30

On the second day of the international consultation on the rights of the child there were exciting sessions on female infanticide, nutrition problems of children in India, lost and abandoned children, inter country adoption and the juvenile justice system. These topics were examples of the multiple discrimination children face in the everydays. Amita Dhanda and myself were speaking about Double Discrimination, Double Empowerment: Children with Disabilities. The lecture was followed by a good discussion. As a result of the presentation I received an invitation to speak at a Hyderabad based women's group on alternative, non-coercive mental health services.

The meeting was a great success. The issues were discussed in a multidisciplinary and multisectorial dialogue. Both the presentations and the debates were of a high quality.

Child Rights: Day 1 at the International Consultation

2008-07-25T18:48:00.005+05:30

The first day of the International Consultation on the Rights of the Child provided with a good atmosphere of thinking together and sharing by the participants representing a multisectoral and multidisciplinary pool of experts from India, US, The Netherlands and Hungary. After a conceptualization session on the Paradoxes of Children's Rights, three subsequent sessions dealt with development and discrimination. Education, child labour and child trafficking were explored by the speakers, discussants, facilitators and participants.

Travel to Hyderabad

2008-07-24T10:59:00.002+05:30

Today I am flying to Hyderabad, where I shall participate in the Child Rights Consultation. On the 31st July I shall lecture at the Hyderabad Central University, Dpartment of Philosophy on paradigms in physics and in psychiatry. With Amita we shall fly to Bangalore on the 1st August to participate as resource experts in the consultation on the amendment to the National Trust Act to make it compatible with CRPD. After the consultation I shall lecture at NALSAR University on Human Rights Defenders and on paradigms in physics and law.

Child Rights Consultation at NALSAR University

2008-07-23T12:56:00.004+05:30

This Friday and Saturday I shall participate at the International Child Rights Consultation at NALSAR University, Hyderabad. Below is my draft paper to be presented at the seminar as a joint lecture with Amita Dhanda.

Double Discrimination Double Empowerment: the CRPD Paradigm of Child Participation
Amita Dhanda[1] Gabor Gombos[2]

I Introduction
It has been long contended that human rights circumscribe state power and empower the citizen. It is these motivations which dictated the adoption of the Universal Declaration of Human Rights and the Conventions on Civil Political Rights and Social Economic and Cultural Rights. The rights guaranteed by these general Conventions were deemed insufficient to address the discrimination faced by the more vulnerable populations; hence Convention on Elimination of Racial discrimination (CERD) and Convention on Elimination of Discrimination against Women (CEDAW) were adopted to eliminate racial and gender discrimination. The protections required by a child are not the same as an adult; consequently the Convention on the Rights of a Child (CRC) was adopted to address the concerns of the child. In further acknowledgement of the different needs of specific populations, along with the recognition that certain populations may require different mechanisms to fulfil the same universal needs, the Convention on the Rights of Persons with Disabilities (CRPD) has been recently included in the human rights pantheon.
The thematic Conventions were an acknowledgement that discrimination was not a uni-dimensional experience. This acceptance of the many layers of discrimination however did not resolve the question: how should such like discrimination be addressed and eliminated? These questions of multiple discrimination have arisen both in the context of women and children; in this paper we limit our attention to children and examine how the concerns of children with disability - a constituency which encounters multiple discrimination, has been addressed by the CRC and the CRPD. To this end, we firstly examine how the rights of the child have been constituted in CRC and what are the guarantees extended to children with disabilities. We next elaborate on the manner in which the issue has been addressed by the CRPD; and lastly we compare the two approaches and ponder on the questions raised by the similarities and differences of the two human rights Conventions.

II The CRC Paradigm of Rights
As a general rule[3] the CRC recognizes every human being below the age of eighteen years to be a child. Unlike the other human rights Conventions, CRC is not just an articulation of the duties of the State and the rights of the Child. Rather it spells out the rights of the child in relation to the world of adults. This adult world consists of: the parents and extended family of the child and the State. Whilst the parents and the community are designated as the primary caregivers; the State stands in as guarantor, if the primary caregivers either fail or are unable to, perform their duties. In doing these duties the best interest of the child is required to be a primary consideration and they are to be performed consistent with the evolving capacities of the child.
“Best interests” is how the adult world be it community or State perceive the concerns of the child; whilst “evolving capacity” relates to the child’s view of the matter. CRC uses both parameters; but in the main allows best interests to trump evolving capacity. This is the case per se for the human being who has been defined as child in the CRC. There are no questions being raised here on aggravated vulnerabilities. The issue of special needs comes to the fore in article 23 where CRC addresses the rights of children with disabilities. It is important to note here that the article accepts “that a mentally or physically disabled child should enjoy a full and decent life in conditions which ensure dignity, promote self –reliance and facilitate the child’s active participation in the community”. The rest of the article speaks of providing subject to the availability of resources special care to children with disabilities. This article speaks of social participation and individual development of persons with disabilities but in a manner where the children with disabilities are passive recipient of support and assistance. It could be rightfully contended that Article 23 was included to incorporate the special needs of children with disabilities; the inclusion of the article in no way meant that the other principles of CRC were inapplicable to children with disabilities. However the implementation of CRC by State Parties, as evidenced by their reports to the treaty body, has shown that the concerns of children with disabilities have only been addressed in this article; the impact of the other articles of the Convention on children with disabilities finds no mention in the reports of States Parties. This was the case even when Article 23 mentioned education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities as areas in which children with disabilities have entitlements . Therefore to expect that States Parties shall launch special initiatives to promote the participation rights of children with disabilities, or accord recognition to their evolving capacities, in the face of the general paternalistic outlook of CRC and the silence of article 23 on this count, seems to say the least, unrealistic.
Even as the Convention is titled as the Convention on the Rights of the Child, it is more an instrument which has detailed State and community duties towards the child. A number of articles have recognized the rights of the parents and community of the children, instead of the children themselves. With an overarching emphasis being accorded to the best interests’ principle, children in the main emerged as helpless, immature beings. And though the inclusion of the evolving capacity of the child and the right to participation seemed isolated notes in the CRC; it is their inclusion which kept open future possibilities for the creation of a tune in the children’s own voice. It is these isolated notes which the rule the expression of child rights in CRPD.

III The CRPD Paradigm
Article 23 had been incorporated in the CRC with the understanding that the article would give to children with disabilities that trifle extra they may require to be at par with non disabled children. However as already mentioned this effort of same and different did not work out and the concerns of children with disabilities were ghettoized in article 23. Further the special measures in article 23 expressed the aspiration of inclusion and participation without specifying the mode by which it should be carried out.
Insofar as the needs of children with disabilities were not the same as those of adults with disabilities the need for a explicit expression of their concerns was acknowledged. In order to prevent the rights of children from either getting relegated to a single article or to get lost in the mainstream the CRPD adopts a twin track approach. This approach results in the treaty carrrying a stand alone article (article 7) on the rights of children with disabilities, along with suitable references to children with disabiliites in other substantive articles, where the negotiating ad hoc committee found justification for doing so. This approach gives recognition to both the sameness and the difference needs of children with disabilities and thus provides normative guidance on substantive non-discrimination requirements with respect to the various rights enshrined in CRPD.
Again in contrast to the CRC, the stand-alone article relating to children with disabilities provides assistance to the children themselves rather than to their caregivers[4]. The claims of the child have been similarly centered in the other articles of CRPD. Thus Article 16 (Freedom from violence, exploitation and abuse)[5] requires States Parties to ensure gender- and age-sensitive assistance and support to avoid, recognize and report exploitation.

IV Comparative Evaluation of CRC and CRPD
The CRC expressly prohibited discrimination on the ground of disabilty, however this merely non-discriminatory approach proved insufficient to enable equal enjoyment of rights and fundamental freedoms for children with disabilities. This is because solely refraining from negative differential treatment does not help removing the barriers that cause disability; the lowering of such barriers requires more active measures of inclusion, such as reasonable accommodation. A reference to chlidren with disabilities in the CRC affirmed the sameness demands of children with disabilities but failed to recognize their different needs[6].
This twin tracking clearly expresses that the committee did not feel satisfied with the „mere fixing” of the failure of CRC to provide effective protection and promotion of the rights of cwd by either adding one child specific article to the new treaty or by only mainstreaming children with disabilities into the bulk of the convention. There was need for a new approach. Such an approach was possible in CRPD because the Convention reconstituted the human and in the process changed how fundamental rights like individual autonomy, dignity, equality need to be understood . This new image of the human allowed for the right to support and to reasonable accommodation to be guaranteed without negating a person’s capabilities to exercise his or her rights.It is this reconstitution of the human which has allowed the question of what is a child (with a disability) to be reconsidered.
Children without or with disabilities may and do require support in a number of areas of life.Adults without disabilities have been traditionally expected to act independently as mature human beings without seeking any support or accommodations. However adults with disabilties expressly seek support and reasonable accommodation because without such support and accommodation de facto equality cannot be reached. Children with disabilities are at the intersection of persons with disabilites in general who may need support because of disability and children in general who require age and maturity sensitive assistance and accommodations. Access to support is crucial for both adults with disabilites and non-disabled children not only to execute their self-determined decisions and choices but also to reach their decisions. Personal autonomy also entails the right to make own choices and to act accordingly. International human rights law had interpreted individual autonomy as something that is exercised by independent individuals,and consequently excluded all those who may require support from other people to realize their autonomy. Independence was seen as a given rather than a goal that could often be achieved only through interdependent support mechanisms. CRPD by recognising interdependent human existence as a valid and legitimate framework to enjoy and exercise all fundamental rights and freedoms also shifted the paradigm on how to handle children with disabilities in particular and children in general.
Non-discrimination in general is both a general principle in CRPD[7] and an overarching aspect throughout the substantive articles in the convention. The preamble gives due recognition to the fact that certain groups of persons with disabilities face multiple discrimination, here age-based discrimination is expressly mentioned[8]. Non-discrimination of children with disabilities relative to children in general also finds notice in the Preamble[9]. The stand-alone article on children with disabilities, article 7 reiterates this non-discrimination provision[10]. The rest of the child-specific article reiterates two of the guiding principles of CRC: the best interests of the child[11] and their evolving capacities[12].
At first sight nothing more has happened in CRPD than the rights of the child enshrined in the CRC were incorporated into a non-discrimination framework without challenging the image of the child adopted by the child rights convention. Nevertheless, a closer study of CRPD, with a particular emphasis on the twin-tracking and on the way how overarching principles such as individual autonomy have altered the concept of the evolving capacities shows that in fact a new image of the child appears in the first human rights treaty of the new millennium.And this shall not stay without an effect on how human rights discourse shall look at children whether with or without disability.
Respect for individual autonomy plays a central role in CRPD.[13] In the case of children with disabilities this is formulated in the context of the evolving capacities of the child[14]. Article 7 paragraph 3 fills this principle with a dramatically new content. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.”
What the disability rights treaty does here with the evolving capacities of the child is, in our view, no less than revolutionary. The general paradigmatic shift in CRPD to give full recognition to the fact that rights can be enjoyed on an equal basis with others presupposes the right to support, assistance and accommodations demanded the negotiating committee to provide with both disability and age-appropriate support. This combined criteria on assistance reflects the social model of disability that has been the basis for the treaty: It is not only the impairment alone that creates barriers to equal participation and full and equal enjoyment of rights but the interaction between the individual with an impairment and the society at large results in disabled life. Age is not a mere biological factor; it is also a social construct. Providing only one of the two types of assistance (disability or age specific) would be meaningless as could not adequately address the barriers created by the combination of age and disability of the child.
CRC does not provide with any sort of assistance to the child to realize their evolving capacities. CRPD does not create new rights but provides this assistance. The situation thus is that for children with disabilities both disability and age-appropriate assistance would be required under international human rights law; whilst children without disabilities would be left to realize their evolving capacities without having the right to age-appropriate support. Equality between all children would require an interpretation of evolving capacities of the child and the right to realize them in such manner that age-appropriate assistance be seen as an entitlement of all children.
One of the inherent dilemmas in the field of child rights is the dilemma between protection and promotion, paternalism and participation of the child. Children are clearly growing human beings; their major task is to develop their capabilities to realize their full potential. While paternalism can be effective in protecting the child from abuses, it has no tools to enable the child with experiences from which they can learn and grow. This latter can be achieved if the child is seen more than just an immature and thus vulnerable person, i.e. the child needs to experience that they are agents in their matters. Paternalism acts against the active involvement and participation of the child in matters affecting their lives. CRC relies on the principle of the best interest of the child but the recognition of their evolving capacities remains an unfulfilled promise.

Judges, law enforcement professionals, child welfare administrations may find difficult to find a healthy balance between the best interests of the child and giving due weight to the child’s views in accordance with their age and maturity. Especially when the child’s will is in contradiction to the adults’ expectations the two principles rather compete than complement each other and the evolving capacities of the child can hardly win this competition due to the profound power imbalance between the authorities representing the “legitimate” adult views with authenticity given by the law. Thus, in a situation of conflict between child and adult, it seems safer, easier and far less risky to act in the “best interest” of the child and ignore the child’s preferences by a simple reference to its inadequate maturity.
The lack of any provision on age appropriate support in CRC at best relegates evolving capacities to individual concessions. On a case by case basis the maturity of the child can be assessed and if the child is found mature enough, his/her preferences are given due weight, otherwise a decision is made in his/her best interest. In case of a conflict between the child’s preferences and their alleged best interests, it is the latter that will guide the authorities. Thus while the best interest principle in CRC is an overarching one, evolving capacities remain in the individual domain without any clear normative consequences. The effective enjoyment of evolving capacities require more than a vague recognition and the CRC falls short in elaborating on what this more should be.
Only when (disability) and age-appropriate assistance becomes a right implying obligations on behalf of the authorities to provide children with such assistance, the chances that the child’s views will not be ignored and decisions contrary to the child’s wishes will not be taken routinely are significantly enhanced. This is the approach adopted by the CRPD.
The best interest and the evolving capacities principles can find harmony and just treatment only if the disproportionate power asymmetry between children and those around them is removed. CRPD does this by placing the child in the center rather than their parents, families or authorities bearing responsibilities towards the child. While CRC addressed the paternalism and participation dilemma mostly through the best interest principle, CRPD has reinterpreted the principle of evolving capacities through making age and disability appropriate support a right.

V Conclusion
The CRPD has introduced the strategy of double empowerment to deal with the double discrimination faced by children with disabilities. Further the Convention has questioned the pejorative attributions towards support by allowing for a person to seek support without loss of personhood. Insofar as the CRPD addresses the question of child participation in structural terms it offers a more empowering paradigm to children with disabilities. It is hoped that this strategy of structural empowerment shall not be restricted to children with disabilities alone; and child rights activists will engage with the CRPD paradigm to enhance the participation rights of all children.

[1]Professor of Law NALSAR University of Law Hyderabad
[2] Senior Advocacy Officer Mental Disability Advocacy Center, Budapest Hungary
[3] This rule does not apply according to article 1 when according to the law applicable to the child majority is attained earlier.
[4] See article 7 (3).
[5] Article 16 (2) 2. States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender- and disability-sensitive.
[6] Ref to your Twin Track paper
[7] Article 3 (General Principles) (b) Non-discrimination;
[8] Preamble (p) Concerned about the difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status,
[9] Preamble (r) Recognizing that children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children, and recalling obligations to that end undertaken by States Parties to the Convention on the Rights of the Child,
[10] Article 7(1) States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.
[11] Article 7 (2) In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.
[12] See in next section
[13] Preamble (n) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,
Article 3 (General Principles) (a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons,
[14] Article 3 (General Principles) (h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

International Child Rights Consultation in Hyderabad

2008-07-20T16:54:00.006+05:30

On the 25 and 26 July I will be participating in an international consultation on the rights of the child. The seminar is organised by Amita Dhanda. Here follows an excrept from her email to the participants to highlight the need for such a meeting.

This consultation has been prompted by the need to promote a holistic understanding of child rights. We found that persons engaged with child rights rarely dialogued across various child rights issues instead discourse and specializations were limited to specific issues and areas. We thought it was possible to promote a holistic understanding if people working in distinct areas of child rights were to dialogue with each other. In order to underscore this need for connection we begin with a Conceptual Session which addresses the Paradoxes of Child Rights. In the next session which is organized around the theme of Capability Development and Deprivation we have taken up the issues of education, child labour and child trafficking. We next address the theme of discrimination where we look at issues of female infanticide; nutritional discrimination and disability exclusion. The last theme revolves around the interventions geared towards vulnerable children and here we look at lost and abandoned children; children given for inter-country adoption and children in conflict with the law.
As an active effort at integration we would be requesting you to not just be the speakers of your session but also be discussants and facilitators of other sessions. The consultation thus is prompted by the need to make the linkages between various areas of child rights and consequently acquire a rounded understanding of the field.
Coupled with the problem of issue specialization is the difficulty of sectoral perspective which contributes to a fractured understanding of child rights. There is often a chasm between the governmental and nongovernmental between the academic and activists perspective towards child rights. In order to aid understanding, as only with such understanding can any kind of consensus be reached, we have tried to provide representation to varied perspectives at this consultation. Excep tfor students from NALSAR, we have not invited children themselves at this consultation. Such an effort could be made on the strength of the understandings reached at this Consultation.

Recognition of legal capacity for all

2008-07-20T16:41:00.002+05:30

On 2 August the first in a series of four national/regional consultations will take in Bangalore to amend the National Trust Act 1999 to make it compliant with the UN Convention on the Rights of Persons with Disabilities. Amita Dhanda and I prepared the below consultation paper that will serve as the basis for the consultations.

Acknowledgement and Disclaimer
Consultation Paper drafted under the auspices of the National Trust. The opinions expressed in the paper are the views of the paper writers and not of the National Trust.

Harmonizing National Laws with CRPD: Suggested Amendments to the National Trust Act 1999
Amita Dhanda●● Gabor Gombos♦♦

I Introduction
The National Trust Act was enacted in 1999 after a long gestation period. The Act was proposed to address the apprehension of parents (primarily of persons with intellectual disability) on the future of their wards after them. However by the time the NTA was enacted, the protective motivations of the original proposal were diluted with the inclusion of autonomy and self advocacy claims.
The 1999 Act acknowledged that a guardian to manage the affairs of a person with disability could not be appointed merely by looking at the nature of the disability; instead the statute required that the needs of the individual person with disability should be examined and a guardian appointed only if desired. This recognition of limited guardianship in the National Trust Act 1999 was one of the forward looking examples that the Ad Hoc Committee for the Drafting of the Convention on the Rights of Persons with Disabilities was apprised of whilst it deliberated on the legal capacity of persons with disabilities.
Even as the National Trust Act 1999 adopted a forward looking approach, its provisions have been overtaken by events. The United Nations Convention on the Rights of Persons with Disabilities, which has been negotiated and drafted with the active involvement of persons with disabilities from all over the world, alters what States Parties need to do for persons with disabilities . India has signed and ratified the Convention on the Rights of Persons with Disabilities (hereinafter CRPD) and the CRPD having obtained the requisite number of ratifications came into force on 3rd of May 2008. In line with our international obligation we are now required to bring our laws in conformity with the international Convention. It is important that in bringing the NTA in conformity with CRPD we are guided by both the text and the spirit of CRPD. It is also necessary that the suggestions for change are made by reading the CRPD as a whole and by placing the NTA within the context of Indian statutory law.
We have been guided by these considerations in formulating the following proposal for consultation.
II Reconsideration of Underlying Principles of NTA
The NTA regime is based on the presumption that some persons with disabilities, due to the nature of their disability, are incapable of making their own decisions; hence they do not possess legal capacity; and thus special protective arrangements need to be put in place for them. Consequently, the statute makes caretaking arrangements for the named disabilities, proceeding on the presumption that such arrangements are only required for those disabilities.
The CRPD questions these presumptions of the NTA insofar as it recognizes that all persons with disabilities possess legal capacity and are persons before the law. The CRPD also acknowledges that some persons with disabilities may require support for the exercise of their legal capacity; it therefore places an obligation on States Parties to provide such support to persons with disabilities. However the fact that some persons with disabilities need support for the exercise of their legal capacity is no reason to deny the existence of their capacity. Thus the CRPD sets up a universal model of legal capacity whereby all persons with disability are recognized to possess legal capacity. And support arrangements need to be so put in place, that they can be accessed or made available, as required, by persons with disabilities. CRPD recognizes that protection based on legal incapacitation often results in a further barrier to equal participation in society; it therefore introduces an enabling legal framework which supports equal status and safeguards against abuses. This recognition of universal legal capacity in the CRPD mandates that: the NTA should explicitly recognize the legal capacity of persons with disabilities; and national laws which deny legal capacity of persons with disabilities are repealed. The CRPD would also require recognition to and facilitation of support networks. The support networks would be needed so that persons with disabilities are in no way disadvantaged in the exercise of legal capacity.
It is important to note that whilst the CRPD sets up a regime of universal legal capacity by recognizing the legal capacity of all persons with disabilities; the NTA is a law with restricted application because it addresses the capacity deficits of certain named disabilities only.
In the light of the above the Consultation would need to address the following questions:
· How should the NTA be amended to incorporate the CRPD model of universal legal capacity?
· Should the model be only extended to the named disabilities?
· Or should the NTA be amended to make this model available to all disabilities?
· What other amendments should be introduced in the NTA to bring the statute in conformity with the CRPD?
In what follows we provide reasoned answers to these questions

Suggested Amendments with Reasons
The NTA should introduce an Express Provision Recognizing Universal Legal Capacity and the provision should state that
· All persons with disabilities have full legal capacity.
Reasons : Section 12 (3) of the NTA challenges the inextricable association of incapacity with some disabilities; it therefore requires that before appointing a guardian for a person with the named disability, an enquiry on the need of such guardian should be made; and a guardian should be appointed only if upon enquiry such guardian is considered necessary. The NTA accepts that in a particular case a persons with disability could be found to possess capacity; but it does not presume that persons with disability possess capacity like non disabled persons.
The general position of the law, as exemplified especially by the Contract Act 1872, is that all adult persons who have crossed the age of minority are presumed to possess legal capacity. Thus any person who alleges lack of capacity is required to prove it. This presumption does not extend to persons generally found in a state of unsound mind. In their case the law presumes lack of capacity and the person contending presence of capacity is required to prove it. Whilst legislation has restricted the presumption of lack of capacity on persons who are generally of unsound mind; the courts have not insisted on the requirement of generality. Once a person has been found to be with intellectual disability or living with mental illness, they have presumed that such person living with mental illness or intellectual disability lacked legal capacity.
The CRPD requires that this overarching presumption of lack of capacity associated with persons with disabilities should be displaced and they should be treated on an equal basis with others. To fulfill this mandate of the CRPD it is necessary that the NTA states all persons with disabilities have full legal capacity.
The NTA provision should expressly state that Support Does Not Diminish Capacity

· This legal capacity is in no way diminished if a person with disabilities sets up a support network to assist him in the exercise of this legal capacity.
Reasons: Once a person with disabilities is found to lack legal capacity the law handles this situation of incapacity by appointing a guardian to manage the person and property of the person with disabilities. The guardian then assumes the persona of the incapacitated person and takes all decision on his or her behalf. If the guardian is viewed as support, it is necessary to note that this support is not extended by the existing Indian law, without a finding, that a person with disability lacks legal capacity. Art 12 of the CRPD allows for support to be provided without a finding of incapacity. For NTA to provide support without diminishing capacity it is necessary that the new section should expressly state that accessing of support by a person with disability in no way diminishes their legal capacity.
Role of National Trust in Providing Support
This new provision should state the nature of the responsibility assumed by the National Trust and to that end state:
· The National Trust shall accord recognition to support networks and offer assistance to persons with disabilities in setting up such networks.
Reasons: The CRPD places a duty on State Parties to provide support to persons with disability to assist in the exercise of their legal capacity. Insofar as the National Trust is an autonomous statutory body which is supported by the government; and the NTA is aimed at promoting both the autonomy and independent living of persons with disabilities; it may be appropriate to fulfil this mandate of the CRPD by requiring the National Trust to offer assistance to persons with disabilities to set up support networks. This assistance could be provided in two kinds of ways: one, the National Trust could through its Local Level Committees accord recognition to the support networks that are created by persons with disabilities; and two, where it could assist persons with disabilities to set up the support networks.
The National Trust would need to provide this assistance to enable the paradigm of supported decision-making to displace the long subsisting familiar paradigm of guardianship or substituted decision-making. Recognition in the law alone will not without more dispel the long subsisting prejudice against persons with disabilities. For that prejudice to be dispelled, it is important that persons with disability should be seen to in fact function in society. For such functioning to actually happen, it is important to put in place procedures, which would lower the barriers against persons with disabilities. The recognition of the support network of persons with disabilities by the National Trust could be one such procedure.
Whilst some persons with disability would be able to put in place a support network on their own and may only need the National Trust to assist them by recognizing the Network, others may require the National Trust to help them in setting up the Network. The inclusion of this provision in the NTA is being suggested to enable the Trust to devise mechanisms by which the shift from a paradigm of Substituted Decision-Making to a Paradigm of Supported Decision-Making can be made. Furthermore the active involvement of the Trust would also help put in place, the safeguards that required by the CRPD, against abuse by support networks.

Expand the Definition of Disability
The National Trust Act defines “persons with disability” to mean a person with autism, cerebral palsy, mental retardation or multiple disabilities. This restrictive definition needs to be altered.
· The”definition of disability should be altered in the NTA and the present restrictive model should be replaced with a universal model. This could be done by adopting the definition of disability incorporated in the CRPD.
Reasons: As already mentioned the definition of disability in NTA was prompted by the criterion of enhanced vulnerability. Whilst a medicalized standard of enhanced impairment prompted the inclusion of cerebral palsy and multiple disabilities; psycho-social considerations dictated the induction of autism and mental retardation. The creation of a specialized legal regime of the National Trust was also induced by the questionable legal status of the persons with the aforementioned disabilities. The need for substitute legal arrangements was especially felt by parents of persons with mental retardation because both law and practice attributed incapacity to their wards. A similar attribution of incapacity was practiced in reality towards the other disabilities. Whilst some of these were included in the NTA others were not.
The CRPD requires a stoppage of the legal attribution of incapacity against persons with disabilities thus removing a legal barrier that contributes to disability itself. Just the dismantling of the disqualifying regime in law would not alter the situation on the ground but the alteration of the law is a precondition to social change. Social attribution of incapacity is not restricted to persons excluded by the law, hence what the CRPD prompted change in the law would do is that it would bring persons with mental retardation and persons living with mental illness at par with other persons with disabilities. To make this statement is no way a denial of the aggravated exclusion and stigma faced by persons with intellectual and psychosocial disabilities. However it is aimed to emphasize that the new regime of legal capacity affords an opportunity for cross disability solidarity based on the enabling paradigm of supported decision making and this opportunity would be seized if the NTA abandons the present restricted definition and adopts a more universal definition of disability. The continuation of the present definition may cause the named disabilities to be ghettoized in exclusionary regimes.
Further the new model of legal capacity can take off the ground only if imaginative support networks are created. In order to generate the political impetus to release resources for the creation of these networks, it is important for persons with disabilities to speak in one voice. The National Trust would also be able to further the enterprise of garnering support for persons with disabilities when the human interdependence of all persons with disabilities and all humans is emphasized.
With this amendment the NTA could be recast as the legal capacity and support networks legislation for all persons with disabilities; whilst the other rights could be addressed in the Persons with Disabilities Act 1995, again, for all persons with disabilities.

Right to Participation
An express provision should be included in the NTA which states that :
· The National Trust shall devise all approved programmes in active consultation with persons with disabilities and their organizations
Reasons The CRPD requires all programs and policies for persons with disabilities to be formulated with their active participation. The National Trust has resources for initiating approved programs. The CRPD would require the National Trust to consult with persons with disabilities to identify specific areas of action to enable persons with disabilities to exercise their legal capacity and starting programs accordingly with the active participation of and in consultation with persons with disabilities.

●● Professor of Law National Academy of Legal Studies and Research, Hyderabad, NGO Delegate to the United Nations Ad Hoc Committee on the Convention on the Rights of Persons with Disabilities .
♦♦ Ashoka Fellow Centre for Advocacy and Mental Health, Bapu Trust Pune, Senior Advocacy Officer, Mental Disability Advocacy Center Budapest, NGO Delegate to the United Nations Ad Hoc Committee on the Convention on the Rights of Persons with Disabilities .

Legal Capacity and Supported Decision Making: Consultations on the Amendment of the National Trust Act

2008-07-14T16:09:00.006+05:30

Four regional consultations are being organised to consult on what changes are needed in the National Trust Act to make the law in accordance with the Convention on the Rights of Persons with Disabilities. The schedule for the consultations is like this:

2 August, Bangalore

23 August, Guwahati

October (to be confirmed), Chandigarh

November (to be confirmed), Goa

The consultations will discuss a paper drafted by Amita Dhanda and myself (On the picture we are having the first discussions on the consultation while on a retreat to the Ramoji Film City). Then, based on the submitted comments and conclusions of the regional consultations a draft amendement proposal will be adopted.

The questions around which the consultation paper is organised are:

How should the NTA be amended to incorporate the CRPD model of universal legal capacity?
Should the model be only extended to the named disabilities (mental retardation, cerebral palsy, autism and multiple disabilities)?
Or should the NTA be amended to make this model available to all disabilities?
What other amendments should be introduced in the NTA to bring the statute in conformity with the CRPD?

The consultation paper recommends:

The NTA should introduce an express provision recognizing Universal Legal Capacity and the provision should state that all persons with disabilities have full legal capacity.

This legal capacity is in no way diminished if a person with disabilities sets up a support network to assist him in the exercise of this legal capacity.

The National Trust shall accord recognition to support networks and offer assistance to persons with disabilities in setting up such networks.

The definition of disability should be altered in the NTA and the present restrictive model should be replaced with a universal model. This could be done by adopting the definition of disability incorporated in the CRPD.

The National Trust shall devise all approved programmes in active consultation with persons with disabilities and their organizations.

Where I will NOT be lecturing: NIMHANS, Bangalore

2008-07-14T11:01:00.006+05:30

The National Institute of Mental Health and Neuro Sciences (NIMHANS) is India's lead mental health institution, a Deemed University with academic, research and clinical facilities. I was willing to have one of my lectures in this prestigous institution, nevertheless it "was not possible" as psychiatrists are not interested in physics. The reasoning is interesting as I am much more known as a human rights defender, self-advocate working in the mental health and disability field than as a former theoretical phyisicist...

The below news on a rape case from 2003 but one that sounds like an evergreen in mental institutions acroos the globe, suggests that NIMHANS, like any psychiatric facility is in a need to educate themeslves on the human rights dimension of their work. I am patient and a forever optimist. The lecture will not happen now, but maybe later?

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Mental health, administrative disorder

The rape of a schizophrenic girl at NIMHANS reveals a wide gap betweenthe rhetoric and reality of mental health care in India. March 2003, Bangalore, (WFS)

- On January 12, 2003, a young woman'slife changed forever because she was raped within the precincts of theNational Institute of Mental Health and Neuro Sciences (NIMHANS) in Bangalore. The victim was a 17-year-old schizophrenic girl (an in-patient at that time), and the perpetrator, an HIV positive young man who is an out-patient undergoing treatment for alcohol abuse. The heinous incident occurred in the afternoon when the girl was sitting in the hospital grounds reading a magazine, while her mother, her "guardian", was in the ward. The girl, though severely bruised, was alert enough to inform her mother about her trauma. Her mother got in touch with the hospital authorities immediately, but they made no effort to register a police complaint against the rapist. Matters would have remained at status quo but for the intervention of the office of the Commissioner for Disabilities of the Government of Karnataka, who swung into action the next day as soon as it heard about the rape. A case was registered suo moto under the Disabilities Act, on the strength of which the criminal was apprehended. NIMHANS registered the case almost a fortnight later after pressure was put on the hospital authorities by the Commissioner's Office. Investigations are now under way. That the rapist was an HIV positive man increases the seriousness of the crime and its ramifications for the responsibilities of mental health institutions in protecting vulnerable girls in similar situations. Even today, NIMHANS refuses to take the blame for the crime. Their contention is that it is the responsibility of the guardian to look after the ward while she is undergoing treatment as an in-patient. In this particular case, the patient and her mother had travelled to Bangalore from Kolkata (West Bengal) since the facilities there were inadequate for the girl's treatment and because NIMHANS is rated as the premier institution for mental health in the country. That many patients from different parts of the country come for psychiatric treatment to NIMHANS bears testimony to this fact. Many outstation families confirmed that facilities in other cities are a great deal worse. Many families were reluctant to talk because a mentally ill patient needs lifelong treatment and the families are at the mercy of the doctors who monitor the treatment. However, several confirmed that incidents of rape and ill treatment of patients are not uncommon even in private nursing homes. "It is most unfortunate that legislation permits inspection teams to monitor what is happening in private hospitals but not ingovernment-run institutions." Pradeep Kumar, Assistant Commissioner for Disabilities, Government of Karnataka, says the constitutional rights of a mentally ill person are the same as that of a 'normal' person and a hospital is duty bound to respect these. The Mental Health Act of 1987 has introduced several provisons to protect these rights. "It is most unfortunate that legislation permits inspection teams to monitor what is happening in private hospitals but not in government-run institutions. "Kumar says this should change now and government institutions should also be brought under the purview of the Central or state Government with regard to inspections that should be permitted at frequent intervals. Inspection teams could comprise family members, experts in the field and voluntary sector workers who should be allowed to talk to inmates and freely move around the hospital premises. "There is a need to beef up security in the hospitals as it is humanly impossible for a guardian to watch her/his ward 24 hours a day," adds Kumar. The appointment of an Office of the Commissioner for Disabilities goes a long way in helping to take up cudgels on behalf of the mentally ill or otherwise disabled. However, there is a dire need for officials filling these positions to be sensitised to the problems of the mentally challenged. In most states, an officer of the IndianAdministrative Service holds this post as an additional charge. TheDisabilities Act has a provision that recommends that a person trained or involved in the field hold this post. But as of today, only the state of Jharkhand has implemented this recommendation by appointing a visually impaired person from the voluntary sector to this post. The Chief Commissioner for Disabilities in New Delhi is a woman with many years of experience in the voluntary sector. It would be in the fitness of things if other state governments demonstrate their involvement and support to the disabled by appointing a trained person to the post of Commissioner for Disabilities. "Parents need to be counselled with regard to speaking the truth when it comes to facing problems in mental institutions so that matters can be investigated and set right," says Kumar. In the NIMHANS case, the mother of the victim was very reluctant to reveal the facts because the doctors had said this would affect the treatment of her daughter. Fortunately, that has changed. The victim's mother is now determined to see the case through. Chapter VII of the Mental Health Act deals with the liability of the psychiatric hospital or nursing home with regard to the care of mentally ill persons who are staying within its premises. In the caseof this rape victim, NIMHANS subjected her to a series of tests both within and outside the hospital that the family was made to pay for. The Commissioner's office intends to use the provisions of this act to make the hospital compensate the family. While the Mental Health Act may come in useful to take action against errant hospitals, it is equally important for the people in general to move away from the stigma associated with mental illness and be more sensitive to the needs of the mentally ill. In most Indian families mental illness within the family is kept under wraps for fear of jeopardising the matrimonial prospects of marriageable young men and women. At a recent seminar organised by the Disability Commissioner's Office and Rotary in Bangalore, a courageous mentally ill young man said, "Every day I get up and need to motivate myself to go to work. Most days I succeed, some days I don't, but I don't give up." Hisemployer spoke after him and vouched for his efforts. According to theSuperintendent of a halfway home in Bangalore, "The attitude to mental illness can only change if we accept the illness and the treatment fo rit just as we would for diabetes or blood pressure. "With work pressures, nuclear families and the hectic pace of life, mental illness may well end up being the number one malaise of the 21st century. As always, women and girls are the most vulnerable amongthe mentally ill. The trauma of this young woman clearly indicates that it is time for NIMHANS to set its house in order.

Interview for Bapu archives

2008-07-08T12:16:00.002+05:30

This Thursday I shall be interviewed for Bapu's Oral History Archive. My interviwer will be Puja Modi (picture).

The Oral Histories Archive is a small, but growing collection of people’s stories, testimonies, audio-visuals, personal narratives, case papers, photographs, letters, movement newsletters, campaign materials, audio-visual material and other arte-facts about emotional well-being and ill-health. The Archive stands as evidence of our profound experiences with mental well being, ill health and the diversity of our experiences with the mental health service delivery system in India.
Initially, when we started talking to people about an oral history archive of stories from persons subjected to psychological distress and to inhuman, degrading treatments, we had to face many questions. How can such persons share their stories? Will they remember anything? Can they talk rationally? Oh, well, they are too dangerous to talk to! Will their story be aesthetic enough? etc.
The marginalization of persons with a psychosocial disability from the mainstream human rights movements and intellectual currents was evident in such queries. There was also little recognition of the fact that often our entire personhood has been robbed off by many years of using brain damaging, health compromising, violent, and harmful psychiatric treatments. The memories of those who are surviving or have survived many “doses” of shock, with or without anesthesia, has been damaged to such a degree, that telling their story becomes difficult for them.
There were also questions about the human rights of persons with a psycho-social disability: Can “mentally ill” people have civil liberties or fundamental freedoms? Will they use it responsibly? Should there not be a guardian or a spokesperson? Etc. These questions came from very reasonable and intelligent people, people who were themselves highly effective social change agents and creators of culture in our society.
Our sisters and brothers inside lock ups, solitary cells and isolation wards, tied or chained to their cots, have sordid stories to tell about rights violations. Few of us, users and survivors of psychiatry, have lived to tell the tale of lives lived inside custodial institutions, and if we have survived, it has been at great cost to our creativity, skills and abilities.
The Oral Histories Archive validates our belief that those labeled with a “mental illness” have memories, histories, personal experiences and a coherent story to tell. The Oral Histories Archive is home to the collective memory of a set of persons otherwise erased from cultural, social and political history.

The objectives of our Oral Histories Archive is multifold:
To bring before the reading public, the lives and experiences of persons who have been through a psycho-social disability, their stories of healing and recovery
To bring public visibility to the everyday violations of respect, personal dignity and human rights of persons with psycho-social disabilities
To contest and counter the harmful forces of psychiatry on the lives of users and survivors of psychiatry
To foreground the many thoughts and actions that we take on our own energies to help ourselves and people like us
To inspire and inform our activism and our work on policy, legal and human rights advocacy
To mobilize users of psychiatric services and other mental health care services in the local, regional and national context
To give substance and life context to our community publications on emotional well being
To serve as testimony of the poor and degrading quality of care experienced by users of the so-called modern institutions and mental health services in India
To provide a basis for the sustaining and life affirming quality of traditional healing practices, such as possession and trancing
We will share this invaluable collection with the community through our library and documentation center. We will also regularly publish documents, reports and try to bring them out in the form of publications and documentaries. We will mobilize user / survivor workshops and sharing groups to take our activism forward.

User and Peer Support Meeting at Bapu Trust

2008-07-07T15:44:00.004+05:30

The need

All of us have experienced periods of psychological distress or disturbance at some point in our lives. For some of us it may have been triggered by an event. For others it may be a persistent living experience.

During these period support from our immediate surrounding of family and peers may or may not be forthcoming. If the support is accompanied by "shoulds", "musts", or if the helper is uncomfortable "being with" distress or disturbance, the support will be less than helpful and positive. Traditional mental health services on the other hand often labels distress and disturbances as ‘illness’. This view often inhibits the positives and potentials of the human spirit. For instance, the distressed persons might be capable of supporting another distressed person or creating "works" or be capable of discovering meaning in the distress or disturbance itself.

The invitation

Hamsayeh is a space for individuals experiencing distress or disturbance.

It is a living space that individuals can use to be with themselves, their distress, their God or their “voices”, without a sense of apology.

It is also a psycho-social space for individuals to be with and connect with peers. Peers are people who have had similar experiences and who have a special interest in supporting each other. Connecting with peers helps break down the sense of isolation accompanying distress and disturbance. It also evokes hope and comfort critical for insight and for making choices that lead toward healing and self-recovery.

It is a safe place. This means the space is free of lecturing, advise giving, judging, evaluating and labeling. Since, what is helpful for someone might not be helpful to someone else, so in this space, what is helpful is mutually decided between the people offering it and those accepting it.

In this sense, it is a therapeutic space, although no therapy of any kind is practiced here. In this space, there are no professionals, experts nor patients. There are fellow humans sharing each other’s experiences and “stories” while supporting one another to make positive new movements.

Hamsayeh is a peer support initiative of the Center for Advocacy in Mental Health, (CAMH) a mental health advocacy, research and training organization. It grew out of the center's interest in self-advocacy and community based alternative to psychiatry.

The Venue:
Address: CAMH, Plot No 9, Survey 50/4, Kapil Villa, Satyanand Hospital Lane, Opposite Konark Pooram, Kondhwa Khurd, Pune – 411048

Tel : 020-26837644/47

Schedule for Peer Support Group Launch at CAMH

Day: Saturday
Date: 12th July 2008
Time: 11:00 a.m.
Venue: CAMH premises

Activity Speaker/Facilitator Time
Welcome/Introduction to CAMH & ‘Hamsayeh’, Sachin 11:00 -11:10

Introduction to Gabor Gombos, Ahmed 11:15 -11:20

Key note: Peer support group perspectives, Gabor Gombos 11:30 -12:30

The Origins of Peer Support Group Work at CAMH, Bhargavi/Ahmed 12:30 -1:00

Open Forum: Reflections, Questions & Dilemmas, Gabor Gombos 1:00 -1:20

Ritual to invoke & launch the space, Ahmed 1:20 -1:30

The launch will be followed by lunch at 2:00 p.m

Force in Psychiatry and Mental Health - an Open House Programme at Centre for Advocacy in Mental Health

2008-07-07T10:20:00.002+05:30

Today Bapu Trust's Centre for Advocacy in Mental Health, Pune hosts an Open House for all Bapu people on force in pychiatry and mental health. I shall be talking on the human rights aspects of involuntary institutionalisation and treatment, on perceived coercion and give a brief summary of the - unfortunately limited - research available on the effectiveness of forced interventions. The Open House programme was prompted by the fact that Bapu people all agree on no-force as a principle but find the practical implications worth for further discussions. Bapu is actively preparing for two new, user driven projects, a peer support programme and a drop in centre. These activities also require a common understanding on force and psychiatry.

My speaking schedule in India

2008-07-06T11:40:00.003+05:30

June 27 & 28 “National Care Givers' Workshop”, BAIF, Pune

June 30 – July 1 “Self Advocacy Training for Persons with Intellectual Disability”, PARIVAAR, National Institute of Mentally Handicapped, Secunderabad

July 12 “User & Peer Support Meet”, Bapu Trust, Pune

July 25-26 “Child Rights and Social Duties: A Multi –Sectoral International Consultation” at NALSAR, Hyderabad

July 31st “Changing Paradigms and Competing Influences in Physics and Psychiatry” at Department of Philosophy Central University, Hyderabad

August 4th “Speaking Truth to Power : The Institution of Human Rights Defenders” at NALSAR University of Law, Hyderabad

August 5th “Changing Paradigms in Science and Law” at NALSAR University of Law, Hyderabad

August 6 Southern Consultation on Amendments to the National Trust Act, Bangalore

Date to be finalized “Speaking Truth to Power : The Institution of Human Rights Defenders”

August 23 Eastern and North Eastern Consultation on Amendments to the National Trust Act, Guwahati

August 29 & 30 “National Care Givers' Workshop – II”, Pune

Date to be finalized “Uncertain Physics Certain Psychiatry”, Lecture at JNU, New Delhi

Sept 11 “Self Advocacy by Persons with Disabilities”, Lecture at the Annual General Meeting of the National Trust at, New Delhi

Sep.13 “Vision of Blindness: A Celebration of Blind Mathematicians”, National Blind Federation, Bhubaneshwar

Sept.15 “Vision of Blindness: A Celebration of Blind Mathematicians”, National Blind Federation, Delhi

Sept. 19 & 20 “National Users Workshop”, Pune

Oct. Northern Consultation on Amendments to the National Trust Act, Chandigarh
Date to be finalized “Speaking Truth to Power : The Institution of Human Rights Defenders” at Faculty of Law New Delhi

Nov.1 Public Lecture, Patrakar Bhavan, Pune

Nov. 7 National CRPD Meet, Bhopal

Date to be finalized Western Consultation on Amendments to the National Trust Act, Goa

Back in Pune

2008-07-03T13:03:00.003+05:30

Yesterday afternoon I was flying back to Pune where I shall be working until 24th July when I shall attend and contribute to a seminar on the rights of the child at NALSAR Law University in Hyderabad.

Speaking Truth to Power: The Institution of Human Rights Defenders

2008-07-03T12:55:00.001+05:30

Gabor Gombos,
Visiting Ashoka Fellow, Bapu Trust, Pune, India; Senior Advocacy Officer, Mental Disability Advocacy Center, Budapest, Hungary

The objectives of the lecture series are

- to engage with cynicism especially amongst the youth
- Discuss people’s experiences with deprivation
- Explore strategies available to challenge deprivation
- Enthuse persons especially young persons towards cause lawyering
A culture of human rights requires people who are defending the rights and warding off challenges to them. The lecture series will explore the role and functions of human rights defenders; the opportunities presented by contemporary International Human Rights law; and the threats faced by the people undertaking the task.

Other pieces of work in Hyderabad

2008-07-03T12:51:00.003+05:30

Besides attending the Self-Advocacy Workshop I did other pieces of work with Prof. Amita Dhanda. We agreed on what we shall cover in the proposal on the mandment of the National Trust Act which deals with support and guardianship. The drafting of the proposal will happen in the coming days. We also finalised the abstract of my lecture series on Human Rights Defenders.

Self-Advocacy Workshop for people with intellectual disabilities

2008-07-03T12:36:00.003+05:30

On the 30th June I attended and had a session at the Self-Advocacy Workshop for people with intellectual disabilities in Secunderabad. The meeting was organised by the national parents' organisation PARIVAAR. 15 self-advocates, their family members and a number of mentors participated at the proceedings. In my session I facilitated a group discussion with self-advocates on group formation. As an unexpected outcome self-advocates decided to establish their first association in India and they elected 5 officers to the organisation.

Self-advocacy for people with intellectual disabilities is one of the best safeguards against human rights violations and an important tool to promote a human rights based understanding on disability.

Certificate from participants to trainers

2008-06-29T09:44:00.002+05:30

At the end of the National Caregivers Workshop on Self-Advocacy Bhargavi and I were given a kind certificate from the participants. I was very much moved.

Workshop on Self-Advocacy of people with intellectual disability, Secunderabad

2008-06-29T09:03:00.002+05:30

Today I am flying to Hyderabad to participate in the workshop on self-advocacy of people with intellectual disability. The meeting is organised by the national family organisation, PARIVAAR and hosted by the National Institute for the Mentally Handicapped. I shall be talking on the group formation of self-advocates with intellectual disability and shall be consulted on PARIVAAR's new training module on self-development.

How can caregivers advance human rights of people with psychosocial disability (mental illness)?

2008-06-29T08:39:00.003+05:30

The two days national training workshop for caregivers of people with psychosocial disability (mental illness) is over. Both I and Bhargavi were looking forward to this very first such national training with a mix of anxiety and optimism. The outcome of the workshop exceeds our expectations.

We had a rich mix of family and professional care givers. The spirit throughout the workshop was one of cooperation, opnenness, listening to and learning from each other. Learning was based on the lived experience of the participants. The training provided an opportunity to relate those lived experiences with the spirit and letter of the Convention on the Rights of Persons with Disabilities, of which India is a party.

A constructive sense of humour helped participants and facilitators to address such difficult issues as force and coercion in psychiatry, grave human rights violations in the mental health care sector and the everyday problems of burning out and being stuck.

Participants also learned about alternatives to biomedical psychiatry that promote recovery from severe mental illness. We also identified potential strengths and resources that are available in India to promote the right to choose and respect for dignity. The workshop ended with concrete action planning on how participants and their civil society organisations can contribute to the proper implementation of the UN CRPD.

The National Trust Act of India

2008-06-25T11:56:00.003+05:30

At the end of 1999 the legislature adopted an Act (http://www.disabilityindia.org/trustact.cfm) to establish a national trust to promote the rights of people with certain types of disabilities who were seen as most disadvanteged in terms of community involvement and independent living. The Act covers people with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. The objectives of the Act are to enable and empower persons with disability to live as independently and as fully as possible within and as close to the community to which they belong;
a. to strengthen facilities to provide support to persons with disability to live within their own families;
b. to extend support to registered organization to provide need based services during the period of crises in the family of persons with disability ;
c. to deal with problems of persons with disability who do not have family support;
d. to promote measures for the care and protraction of persons with disability in the event of death of their parent or guardian;
e. to evolve procedure for the appointment of guardians and trustees for persons with disability requiring such protection;
f. to facilitate the realization of equal opportunities, protection of right and full participation of persons with disability; and
g. to do any other act which is incidental to the aforesaid object.

The Act has important provisions on legal guardianship. It recognises that the existence of a disability does not automatically demand the appointment of a guardian and if a guardian is appointed the purpose of that guardianship shall be set up. This in theory enables individually tailored guardianship, though the implementation of the law is different.

CRPD has made a paradigm shift from guardianship towards supported decision-making. This needs to be reflected in an amandment to the National trust Act. I am working together with Prof. Amita Dhanda on a proposal to that amendment. Then in August, Septembe and October I shall participate in three or four regional consultations on the amendment in different States of India.

Self-advocacy of People with Intellectual Disabilities in India

2008-06-24T11:35:00.002+05:30

Over the weekend I was contacted by PARIVAAR, a federation of over 150 Parents Associations and NGOs in 27 States of India working for people with Mental Retardation, Autism, Cerebral Palsy and Multiple Disabilities. Parivaar is a grass - root level organization with 70 urban, 42 semi-urban and 38 rural parents associations (http://www.udaan.org/parivaar/parivaar.html).

They invited me to a meeting on self-advocacy to be held in Hyederabad-Secunderabad between 29 June and 1 July. I was very much impressed to see the materials and concept note of the meeting.

Self-advocacy of people with intellectual disability is a new but dynamically growing phenomenon. In my own country, Hungary, self-advocacy groups have just been formed and they learn how to become actors in the broader advocacy arena.

Prejudices hold that people with intellectual disability are incapable of understanding their interests and advocate for it. Self-advocacy provides capacity building and capability development to enable people with disabilities to become their own advocates. Nobody else can know better what the person wants and needs than the person him/herself. Proper support can enable the growth of self-advocacy movement which has also been started in India. Parivaar has been playing a pioneering role in this exciting new advocacy in India, which is in accord with the spirit, purpose and objectives of the UN Convention on the Rights of Persons with Disabilities. Self-advocacy is integral to the proper implementation of CRPD.

I shall participate in their self-advocacy meeting and consult with the initiators of self-advocacy initiatives on 30 June and 1 July.

Settling down

2008-06-24T11:29:00.003+05:30

My second week in Pune, India has started. Every morning at about 10 am I am kindly taken to Bapu office by Hari. I have regular meetings with Bapu director and trustee Bhargavi, and with my colleague Elizabeth who is coordinating my programme in India. After 5 pm I leave for home, rest, do some more work, walk in the neighbourhood, do small shoppings, enjoying the horns of the motor-bikes, cars, buses.

The streets are very different from our European and North American ones. The difference lies in the everywhere presence of animals and auto-rickshaws (see photo).

Preparations for a training for caregivers in mental health

2008-06-21T14:20:00.005+05:30

Next weekend will be the date for the first National Care Givers' Training Workshop by Bapu Trust in India. By signing and ratifying the UN Convention on the Rights of Persons with Disabilities (CRPD) India took on obligations to respect the human rights of all people with disabilities, including those living with long term mental health conditions (psychosocial disability). The training will try to help natural and professional care givers understand what they can do in their everydays to implement CRPD.

Today I visited the venue of the Workshop, an amazing organisation called BAIF. This was the first time I used an autorickshaw (see photo). Here follows BAIF's brief introduction based on their website.(http://www.baif.org.in/aspx_pages/about_us.asp)

BAIF Development Research Foundation
committed to
Sustainable Rural Development, Food Security and Clean Environment
Genesis

Mahatma Gandhi visited Urulikanchan, a backward village near Pune, in 1946 to establish a Nature Cure Centre. His trusted disciple Manibhai Desai who was assigned the responsibility of management worked closely with the villagers to tackle their problems. He established the Bharatiya Agro Industries Foundation (BAIF), a non-profit, Public Charitable Trust in 1967 to replicate his experiences in rural development. BAIF has now been renamed as BAIF Development Research Foundation.

THE BAIF MISSION
BAIF's Mission is to create opportunities of gainful self-employment for the rural families, especially disadvantaged sections, ensuring sustainable livelihood, enriched environment, improved quality of life and good human values. This is being achieved through development research, effective use of local resources, extension of appropriate technologies and upgradation of skills and capabilities with community participation. BAIF is a non-political, secular and professionally managed organisation.

PROGRAMME APPROACH
To address the problems of the poor families who live in a heterogeneous society, BAIF has developed the following strategy:
* Consider each BPL family as the unit of development* Multi-disciplinary village cluster development approach for socio economic development* Blend development with applied research and training* Promotion of people's organisations for programme implementation and sustainability* Ensure empowerment of women, education and community health for better quality of life* Integrate environmental protection with livelihood programmes

PROGRAMME COVERAGE
Various programmes are implemented by BAIF and its Associate Organisations in more than 45,000 villages in Maharashtra, Karnataka, Andhra Pradesh, Uttar Pradesh, Uttarakhand, Bihar, Gujarat, Rajasthan, Madhya Pradesh, West Bengal, Orissa and Jharkhand.

National Care Givers’ Training Workshop
The Bapu Trust, 27th & 28th June, Pune.

9.30-10.00
Registration

Sess. 1
10-10.15 AM
Welcome
Introduction of participants & ground rules

Bhargavi
10.15-10.30AM
Key note address
The key note address will address the philosophy and framework to the training
Flow of the Training
Gabor Gombos
10.30-11 AM
Care givers’ experiences
This session will bring forward core experiences of care givers in a guided manner
Bhargavi

Tea Break

Sess. 2
11.15-1 PM
Negotiating values
Through experiential exercises, role play and group work, the training group will learn to recognize value conflict in their relationships
Bhargavi

Lunch Break

2 PM – 4 PM
Concepts in self advocacy
The session will introduce the principles and concepts in mental health self advocacy
Gabor Gombos

Tea Break
4.15 PM – 5 PM
Issues for the day
A concluding session which will address conflicted areas and consolidate learnings
Home work and plans for the next day
Gabor and Bhargavi

Day 2
Sess. 3
9.30- 10.30 AM
Film footage on indigenous healing
To consolidate strengths of family and culture as a vital source of support and solidarity
Bhargavi and Gabor

Tea Break

Sess. 4
11 – 1 PM
Scripting agency
Working in groups to identify strengths and take forward steps
Gabor and Bhargavi
1-2 PM
Lunch Break
2-3.30 PM
CRPD
Summary presentation and resolutions
Gabor Gombos
Tea Break
3.45- 5 PM

Concluding session
Internalising learnings from the training
Gabor and Bhargavi