Certificate from participants to trainers

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

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)?

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

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

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

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

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

Lecture on Human Rights Defenders for Law Students

Socially sensitive, rights-based thinking lawyers can be important agents in Human Rights defence. I shall give a lecture at NALSAR University, Hyderabad on what makes someone a Human Rights Defender. I am pleased to give similar lectures during my stay in other Indian Law Schools as well.

Speaking Truth to Power: The Institution of Human Rights Defenders

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

Human Rights Defenders need to have

Cause, commitment and motivation
Regular engagement with the issue and the affected people
Vision and Strategy
Find Resources, Tools, Organizations
- if none available then have to be created
- Basic knowledge of international human rights law

Persistence
Publicity is Power
Information to people
Politics not Law
Politics in the Broad sense
Cooperation and Confrontation
Risks Varies from Issue to Issue


There are some norms and how to interpret and use them. Do not need to become an expert whether of law, media etc. You can seek support on expertise but need clarity on cause.

Objectives :
- Engage with cynicism
- Inform on the fact of deprivation of human rights
- Explore available possibilities to challenge deprivationEnthuse young persons towards cause lawyering

Disabilty is not a deficit

The essence of the rights based approach to disability challenges the old stereotypical, pityful ways of looking at disability as a deficit. In my atypical advocacy work I shall give two lectures on blind mathematicians contribution to the development of mathematics. I shall argue that they achieved important and beautiful results in mathematics not in spite of their disability but because of their impairment they had to develop a deeper vision in mathematics. The lectures are hosted by the National Federation of the Blind and will take place on 13 and 15 September in Bhubaneswar and in Delhi.

Vision of Blindness: A Celebration of Blind Mathematicians

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

Disability is often associated with deficits. It is believed that particular impairments render persons with disabilities incapable of or unable to carry out certain kind of activities. However this is an incomplete understanding of the lived reality of persons with disability. Persons with disabilities can, like all others, undertake all activities with appropriate capability development in an empowering environment.

It is this deficits perspective which causes people to think that blind persons would be unable to do mathematics. The lecture would illustratively demonstrate how blindness contributes to mathematical vision and would argue for requisite support to blind persons to do mathematics.

Uncertain Physics and Certain Psychiatry

During my programme in India I shall try to do some pieces of atypical advocacy work, where I can also use my late professional background in theoretical physics. The idea came from prof. Amita Dhanda who kindly convinced me that the scientist me is still accessible and can be used to challenge the foundational grounds of the one-sidedly biomedical approach in psychiatry.

As part of this atypical advocacy I shall lecture in universities, starting with a presentation at the Department of Philosophy of the Central University of Hyderabad on 31 July (see photo).

The Department is eminently known in the country for research in diverse fields of philosophy. It has been recognised by the UGC as a Department of Special Assistance since 1987. The thrust areas of research under this programme are (1) Philosophy of Language: Indian and Western: (2) Cognitive Science (including Logic and Philosophy of Mind). The Department has also received grants under ASIHSS for a period of five years since April 2006 to March 2011. The thrust areas under this scheme are (1) Philosophy of Science and (2) Moral and Political Philosophy – both from Indian and Western Perspectives. In addition to these, the Department also carries on research in Philosophy of Wittgenstein, Contemporary Western Philosophy, and systems of Indian Philosophy like Nyaya and Buddhism.

The abstract of my lecture follows here:

Changing Paradigms and Competing Influences in Physics and Psychiatry

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

With the onset of quantum theory in the early twentieth century, physics proposed healthy skepticism as an integral way of doing science. In doing so physics departed from the Newtonian paradigm of: Cartesian causality; objectivity of the observer and the observation process; and acknowledged uncertainty as an inherent characteristic of existence; interdependence of observation and observed; and probabilistic interpretation of causality.

Unlike the Newtonian paradigm which had an overarching influence on all fields of knowledge including psychiatry; the “Quantum Paradigm” has remained marginal to the knowledge making process. This is particularly problematic in the case of psychiatry because of the current hegemony of the biomedical school. This school operates on the theoretical assumption that all mental phenomenon are caused by molecular interactions and yet ignores the “Quantum Paradigm” even when any molecular level description cannot be done without relying upon quantum theory. And thus Biomedical Psychiatry has retained a paradigmatic inconsistency in its knowledge formation.

Relying on Kuhnian framework the speaker will elaborate on the Quantum Paradigm developments in physics and will challenge the Newtonian foundations of Biomedical Psychiatry.

Az első hét Puneban

Múlt hét csütörtökjén Hyderabadból egy órás repülőúttal Puneba érkeztem, ahol időm legnagyobb részét fogom tölteni a Bapu Trust alapítványnál. Ez a civil szervezet, melyet Bhargavi Davar és Amita Dhanda alapítottak, kutatásokat végez az alternatív elmeegészségügy terén, a kutatási eredményeket az érdekképviseleti, jogvédő munkában hasznosítják.

Első közös munkánk június 27-28án egy tréning lesz, melyet pszichiátriaviselt embereket gondozók (hozzátartozók, segítő szakmák munkatársai) számára tartunk az önérdekérvényesítés fontosságáról, s amelyre nem csak Maharashtra államból, hanem India távolabbi részeiről is jönnek résztvevők.

Vendéglátóim kedvesek, intelligensek, segítőkészek. A lakás (l. fotó) belakása lassan, de biztosan halad.

My next destination: Pune

Pune is the second largest city in the state of Maharashtra in western India, around 160 kilometers south-east of the state capital, Mumbai. Situated 560 metres above sea level on the Deccan plateau, at the confluence of the Mula and Mutha river^[1], it is the administrative capital of Pune district and the eighth most populous metropolitan area in India^[2].

Pune has existed as a town since at least 937.Chatrapati Shivaji spend his early years in this city. He and his associates initiated lot of development activities in the city, as a result Pune became one of richest, culturally developed city on 'Maharastrian Deccan plateau' and this status is unchanged even today.After 1730, Pune rose to national level as a power center due to Peshwe – the prime ministers of Maratha Empire reporting to their master,Chatrapati of Satara.After the town was brought under the control of British India in 1817, it erved as a cantonment town and as the "monsoon capital" of the Bombay Presidency until the independence of India. In independent India, Pune is known for its educational facilities, having more than a hundred educational institutes and nine universities^[3]. It also boasts a growing industrial hinterland, with many information technology and automotive companies setting up factories in Pune district. (After Wikipedia http://en.wikipedia.org/wiki/Pune).

Last hours in Hyderabad

Wednesday night I had the privilege to enjoy the Light and Sound Show in Golkunda. It is a fortress and ruined city (see picture) lying 5 miles (8 km) west of Hyderabad in north-central Andhra Pradesh state, southern India. From 1512 to 1687 it was the capital of the Qutb Shahi kingdom, one of five Muslim sultanates of the Deccan. The show nicely features the history of the city and area through light, music and narration.

Today is the last day until late July in Hyderabad. After lunching with the head of the Central University of Hyderabad's Philosophy Department where I shall be lecturing on my return to the city, I shall depart to my next destination, Pune.

The days I spent in Hyderabad are unforgettable and they were also quite productive. With Prof. Dhanda we finished three draft papers: one on the rights of the child, another one which is a draft for a larger piece on what legal advocacy (shall) mean and we elaborated on the draft Supreme Court intervention on unmodified ECT.

Life and work in Hyderabad

Thanks to my host I have had the privilege to combine work with learning about the city which with its suburbs has a population comparable to my country, Hungary. I did some shopping and walk in the market area, combating my fear of height with support climbed up to Charminar (see picture on the left), the most enduring symbol of Hyderabad (http://en.wikipedia.org/wiki/Charminar) where I met a guard who knew where Hungary is (I wonder how many Hungarians know where Andra Pradesh, the state of which Hyderabad is the capital city), went to a perfume shop where the owner also knew that Hungary's capital is Budapest.

We also spent time in the Nehru Zoological Park. It was with some regret to see that even in the lion safari some of the lions were in cages. Inevitably this observation triggered some loose analogies between the "kings of animals" and people with psychosocial disabilities. The prejudice, the fear from "dangerous beings", ignorance, lack of reasonable accommodation result in detaining both lions and people with psychosocial (mental health) disabilities.

Work has also been progressing. We made a first draft of a paper on the rights of the child in the light of the Convention on the Rights of Persons with Disabilities and also started to work on an intervention to challenge the wide-spread use of unmodified electroshock (http://www.camhindia.org/campaign_against_direct_ect.html), that is electroshock without anaesthesia and muscle relaxation, exactly the one which was powerfully imaged in One Flew Over the Cuckoo's Nest, and which is identified by among others the European Committee for the Prevention of Torture as cruel, inhuman and degrading treatment. Bapu Trust had already sent a submission on te issue to the Indian Supreme Court, but then, because of the then progressing negotiations on the Convention on the Rights of Persons with Disabilities a delay was asked for the court process. Now that CRPD entered into force and India has both signed and ratified this treaty, it is high time to resubmit the intervention.

Professor Dhanda, my host in Hyderabad

Professor Amita Dhanda is a leading legal scholar inthe field of mental health and law, disability rights in India and internationally. Her pioneering book "Legal Order and Mental Disorder" (Sage Publications, 2000) http://www.sagepub.com/booksProdDesc.nav?contribId=522160&prodId=Book220396 explores critically the legal situation of people living with mental illness. More importantly, she concludes that meaningfulchanges may happen in the field only if users, former users and survivors of psychiatry are given due recognition as lead persons in societal discourses and in challenging the way law handles the human rights of people with mental health problems. Prof. Dhanda is at NALSAR University of Law. During her sabbathical she spent one week in Budapest, where she was lecturing at the Budapest University College of Special Education on legal capacity ad supported decision making, at Central European Universtity on how CRPD treats women with disabilities and had a number of meetings with key actors in the field ofdisability rights.

I had the privilege to meet her at the UN while CRPD was negotiated. We both were delegates of civil society and the discussions and joint thinking in the UN Ad Hoc Committee contributed to a large extent to mycurrent project in India.

Retreat to Ramoji film city

From Wednesday until today we have made a retreat to think thorugh the coming months, the ways of joint working, to do brainstorming, identifying the work prioritites but also to have fun and to relax. The venue for this two and a half days retreat was the famous Ramoji film city (http://www.ramojifilmcity.com/), which on workdays in this season provided with a quiet and inspiring atmosphere for work and also lots of fun. The place is within 45 minutes car drive from Hyderabad, so that it was easily accessible. The weather was pretty hot, the first rain has just arrived today after we came back to Hyderabad.

On the work front we drafted the detailed pan for CRPD related activities, joint publications on legal advocacy, child rights in the light of the Convention on the Rights of Persos with Disabilities and more.

First day in Hyderabad

The first day was mostly about resting after the travel exhaustion and anxiety. As amusement we visited the famous NTR Park, of which the following should be known: "One of the most recent and glamorous attractions of Hyderabad is the NTR garden which is located at Hussainsager lake. It is a memorial to the late N T Rama Rao, one of the most charismatic Chief Minister of Andhra Pradesh. The sprawling NTR Gardens, set up in an area of 36 acres, offer a serene atmosphere and yet provide recreation facilities such as a Machan tree, Japanese Garden, Car Cafe, Souvenir shops, Fruit Restaurant and Children's Playing area and lot of more. A monorail system takes the visitors around the garden."

On the work fron today with Prof. Dhanda we shall work on a comparative analysis of the Convention on the Rights of the Child and of the Convention on the Rights of People with Disabilities. Our hypothesis is that CRC is mostly centered around the "best interest of the child" and while the evolving capacities of the child are given recognition, the latter is outweighed by the "best interest" argument. On the other handin CRPD the evolving capacities and children's right to access support to exercise his/her evolving capacities has been made much stronger. We expect that with proper advocacy CRPD can also be used to reinterpret CRC.

I arrived at Hyderabad

At night on 1st June I arrived at Hyderabad where my colleague and friend Prof. Dhanda met me. But the trip was not without adventures. The Lufthansa check-in software system broke down world-wide, so for about an hour there was no check in at all. Then poor airport staff had to manually check in the passengers which was not a great fun either for them or for the travellers.

Finally I arrived late night at my destination where had to wait to find my luggages. Because of the manual check in the luggage identification was also problematic.

Nevertheless, everything is good if the ending is good. After a good sleep we with Prof. Dhanda started to plan in detail the work we are going to execute in the two weeks. More on this will come tomorrow.