Three of Six Months Passed: a Mid-Term Evaluation

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

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

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

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

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

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

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.