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.


Psychiatrists for Force?

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

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

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

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

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

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

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

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

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

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

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



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

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

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
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

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

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

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

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

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

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

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.