consensus which is so necessary for the making of international law.

However, this Convention was not just an agreement between State Parties. Civil society was a significant third player and it was the emotions and excitement of this third player, which was the mood definer. This third player had a role in not just according approval, but also voicing disapproval. Thus, when a footnote attempting to dilute the substantive content of Article 122 was included, not only did the International Disability Caucus (IDC) voice its own discontent, it also persuaded a number of State Parties to question this inclusion and to keep the matter of the footnote open. It is this unrelenting attitude of the IDC which has got the Convention text to be now finalized without the footnote.

2. What was the mahoul there like when the draft was finalised?

A: It was a festive atmosphere with unceasing cheering and felicitations and hugs were being exchanged between people who both knew and did not know each other. The footnote in article 12 was a bit of dampener but the unity and solidarity of the IDC did not fracture at that crucial moment. Hence, statements were made to both condemn the footnote and celebrate the Convention.

3. What are the implications of having a disabled people's convention for India? There is the view that the UN convention is very far away, and this cannot change anything at the ground level. Even responsible social change agents are saying this.

We will need to equip ourselves in two ways to undertake this lobbying effort. Firstly, we will need to acquire a basic familiarity with the Convention and secondly, we would need to demonstrate that national disability law will be more firmly grounded in a rights based jurisprudence once India becomes a signatory to the Convention.

5. How does the convention influence the mental health sector? What kind of changes will you work towards, both immediate and long term?

A: What I will like to state here is that the Convention makes a paradigm shift and possibly this shift could only have first occurred in International law. This is because in the making of international law, there was a documentation of the discrimination faced by persons with disability across nations. The physical presence of a community of persons with disability across countries effectively challenged social stereotypes on disability. To

explain further, ordinarily the crusade to obtain a rights consonant construction of legal capacity may have been seen as the concern of persons with psychosocial and intellectual disabilities. However, in the making of the Convention all persons with disabilities interacted with each other and consequently understood how all persons with disabilities were denied legal capacity: If the Convention did not recognise the full legal capacity of all persons with disabilities, then the denial will also extend to all and will not stay confined to any one individual or group. The negotiation for the Convention and the resultant text has integrated persons with intellectual and psychosocial disabilities with the disability community and this foregrounding of the social determinants of identification in preference to the medical identifiers is the most major change the Convention has wrought in the mental health sector.

6. What kind of challenges do you expect to face in the mental health sector to the UN convention work?

A: The Convention has founda-tionally challenged the “incom-petent dangerous” stereotype which subsists across countries and cultures for persons with psychosocial disability. It has put in place an empowering, socially integrated image. For me, the challenge is to work at reformulating these national policies and laws in accord with this new paradigm. This would require not just that the dismantling of the discriminatory disqualifying regime which subsists against persons with psychosocial disability, but also the creation of appropriate support networks for those who wish to use them.

Dr Amita Dhanda may be contacted at amitadhanda@gmail.com

They said I was mad
I said they were mad
Damn them
They outnumbered me

- Nathaniel Lee (1655 – 1692)

January 15th or 16th of 1986 – The
first time they took me to the doctor. I had not slept at all the night before, or for almost a week before that. I was getting scared of all kinds of sights and sounds. As I lay on the bed, Amma came and touched my forehead and remarked how cold it was.

On the way to the doctor, I saw that the shops and houses on both sides of the road had been

decorated with palm fronts. My fear increased. I remembered speaking out against the RSS. I was sure they were coming to get me. When we passed the house where Shivakumar Sir lived, I asked them to stop. When I saw Sir, I started crying. He tried to console me. My family asked him if he knew any good psychiatrists. He mentioned a psychiatrist Ramachandran in Vellayambalam.

Shivakumar Sir and I had not been getting along very well. After we left his house, I started feeling dizzy with anxiety. I was sure that he would call the psychiatrist and say horrid things about me.

When we reached the psychiatrist’s house, I got out and sat on a chair on the veranda. A woman came out and said that the doctor would come in an hour. I peeped inside the house through the window. Pictures of Hindu gods were on the walls. This made me think that the doctor was a RSS member and I tried to persuade my family to take me away. They didn’t relent.

I started hearing sounds of drums. People were communicating the message of my capture. Slowly the drums faded and there were sounds of people washing clothes. Were we near an area where Dhobis washed clothes? The feeling of being controlled by

other people was increasing. After a while, the doctor came. He led me inside and examined me, checked my blood pressure. I looked at his eyes; they blinked relentlessly. I was convinced that I was now fully under the control of this RSS doctor. He asked me some questions and prescribed some medicines.

We got back home. I didn’t take the medicines. I said to my mother that those medicines would kill me. She tried to convince me that they would make me alright. Later, I took them and lay there, waiting to be dead. After a few hours, I was neither dead nor asleep.

In 1981, I registered for B.A. at an evening college in Thiruvanan-thapuram. I became actively involved with the SFI, and made lots of friends. Two years later, Narendra Prasad Sir, a well-known literary critic, came to teach us. I was very interested in theatre and attended the rehearsal camps that he organised through his drama troupe, Natyagraham. I was an Eezhava, born in a seaside village, a Latin Catholic by religion. Ideologically I was a communist. Prasad Sir was an existentialist and a researcher into traditions. His effort was to combine ritualistic arts with elite art forms like Kathakali and Koodiyattam in order to develop a new performance language. I found it difficult to agree with his particular mode of reconciling existentialism with an ideology of upper caste Hinduism. Slowly, I started pulling away from him.

I got a third class degree in Malayalam, after which I started teaching in tutorial colleges. A year later, I found a job with an organisation working among fishing communities. The salary was minimal – it was the work itself that was more fulfilling. Prasad Sir and his disciples had

started noticing my dissent. I was in a vulnerable position after a failed love affair and dilemmas of a sexual nature. They used this vulnerability to get back at me. I found myself losing my composure.

After the treatment, I found it difficult to get back into my writing. At this time my friend Manoj said to me: “You should start keeping a diary. It will help if you write down your feelings of sadness, anxiety and fear.” The following are some entries from the diary I kept during that period.

***

There was a property dispute in the family. Police stations, courts, arguments, confrontations… Even under the protection of our step-father, there wasn’t enough to eat or to wear. Meanwhile China and India were at war. The elders sat on the veranda, enjoying stories of India’s advances. Amma narrated stories about nights when the oil lamps were not lit, about the courage of soldiers back from battle fields. In the morning, newspapers reported that someone called E.M.S was arrested and put in jail. At school, teachers talked excitedly about patriotism. My friend Chandra-babu sang a song urging us to “wield our guns and go to Ladak.” There was an added fervour in our rendition of the national anthem before we dispersed for the day.

***

For a whole month, I swallowed pills morning, noon and night. No thoughts, no dreams, no sightings of sun or moon. Only drowsiness and sleep. Friends came to visit. I remember Manoj, Sam, Rajan, and Aji. In my leftover memories, I was sitting up on my bed in the children’s ward of the Thiruvanan-thapuram General Hospital. Eating milk and bread after a bout of

serious illness. The child on the next bed was dead. I watched in a daze as they took him away, wrapped in cloth. I couldn’t lie on the bed after that. Amma took me home as soon as she could.

***

The annual meeting of the rationalist society. We made a small collection and organised a dinner with chicken curry for the invited speakers. I was the president of the local rationalist group. A party was organised in the house of an old rationalist. My colleagues and I were not invited.

It was a Good Friday in 1978. There would be a procession carrying the holy body of Christ on Good Fridays. An elegiac procession with the disturbing smell of frankincense. After the procession, the body of Christ would be laid in the church for public viewing. People kneeled and prayed, touching His feet. Forgetting that I was the president of the rationalist group, I also bowed at the feet. And when I came out of the church, there was a line of friends, waiting to make fun of me. Need there be any more proof of my idiocy? Another item on the long list of my blunders…

***

One of the old buildings of my school, Leo XIII, was being demolished, to be replaced by a new one. Some of the classes were provisionally moved to the big church. I was in Class Four then. I was afraid to look at the Altar with its wondrous decorative pictures. In the evening, dead bodies were brought to be buried in the cemetery next door. A procession of dead bodies. Thoughts of death and dying were abundant in those days. Even a pinprick generated thoughts of death – was it really a pinprick… or a snake bite?

***

I chose Malayalam as my main subject for B.A. at the evening college. During the day I worked at the Theerasabdam magazine, and used the salary of Rs 200 for college expenses. In the second year, I joined the day college. I did not do well in the first year exams – exams were always a big hurdle. It was around this time that dilemmas about sex started surfacing. I had never had a sexual encounter. Would I be able to have sexual relations with a woman? Anxiety about sex started gripping me. I could not concentrate on my studies and started getting forgetful.

In the second year of B.A. I started a friendship with the poet Ayyappan. I had started drinking soon after my Pre-Degree days. Now with Ayyappan, evenings were festivals of drunkenness. A certain sadness was also growing – almost like a disease.

***

The third year of B.A. My drinking had reached its zenith. I was even borrowing money in order to get drunk. Literary discussions, critical arguments – all in an alcoholic stupor. I was developing into a Bohemian character. Around this time, I expressed my romantic interest to one of my classmates, a Christian girl. She asked me why I had waited until the end of the final year of college to show any interest. I tried to make her understand that I had always liked her but felt I could express it only now. Actually I didn’t even approach her directly – another friend acted as a faithful messenger, delivering my letters to her. Anyway, the girl of my dreams declined my advances.

It was difficult to find the words to continue writing about it.

 

Suddenly I was ascending a mountain of anger. When I looked down from its peak, nothing was visible. I felt trapped. Then I saw a few moths flying around in the room.

The descent from anger.

I lashed out at a moth. The exhilaration of its destruction was electric. Arms throbbed with a new strength of courage. One by one, I killed those moths, and lay down, steeped in blissfulness.

Now the room was empty of insects. Not even a chattering lizard.

I got tired searching for insects to kill. If I had a microscope I could start destroying bacteria and virus, I thought. The realisation that my own body housed thousands of bacteria and virus made me happy. I could destroy them and keep this loneliness at bay. But I realised that killing them all, one by one, would be difficult. There was only one way out – killing myself.

***

In the height of my drunkenness, I declared to my friends that I would commit suicide if the girl I loved wouldn’t have me. I’m not sure if she heard this – if she did, it must have scared her! I tried talking to her again. She said that she was a Syrian Catholic and religion would be an issue between us.

She saw me as a Hindu. I explained that although I was born in the Eezhava caste, I was a Latin Catholic by conversion. I said I would have no problems in being a Syrian Catholic. I could see her wavering. After a while she said – no, but you’ll always have a special place in my heart.

The fear of losing her haunted me everywhere. Then it was summer

and almost the end of college. Mahogany trees were shedding leaves. We went on a trip to Ponmudi. Most of our classmates knew about our little love story. People started noticing my alternating silences and garrulity on the trip. I had bought a parry sweet for her. I gave it to her and she refused it in front of all the girls. I was embarrassed. By evening I was immersed in a deep depression – even the soft warmth of the setting sun was unbearable. Sitting at the back of the bus, she didn’t seem concerned at all.

After everyone left, I went to the arrack shop. Waded through the darkness with the aid of alcohol. I was beginning to enjoy crawling through deserted roads, where no one could hear me. There was no compulsion to make meaning.

P.Y. Balan is a teacher and a poet. He has published an anthology of poems titled Ass and Saints. These diary excerpts were first published in their original Malayalam version in the magazine Pachakuthira. Translated into English by Jayasree Kalathil.

 

Please record our change of address: Center for Advocacy in Mental Health Survey no. 50, Gulmohar Apartments, Ground floor, Satyanand Hospital Lane, Opposite Konark Pooram, Kondhwa Khurd, Pune- 411048 Telephone- 26837644 / 47 Email- wamhc@dataone.in

 

WHO defines mental health as, “the capacity of the individual, group and the environment to interact with one another in ways that promote subjective well being, the optimal development and the use of mental abilities (cognitive, affective and relational), the achievement of individual and collective goals consistent with justice and the attainment and preservation of conditions of fundamental equality”. This definition is all encompassing, putting mental health at the basis of all social, political and economic dimensions of life.

Mental health is a cross cutting theme. Mental health influences all the areas of life, including one’s state of health. The Right to Mental Health is at the core of the right to health. The well being of people includes overall spiritual, emotional as well as physical health. Wherever there is a health problem, we are equally likely to find a mental health program. For example, malnutrition, especially anaemia, leads to chronic psychological problems. Also, a mental health problem can cause further physical ill health.

Mental health of people is determined by social determinants. People living in vulnerable or traumatic situations are more likely to face mental health problems, particularly women and the poor. Violence, conflict, discrimination, displacement, disasters, social inequality and

other such environmental and structural conditions can cause mental health problems. Poor, neglectful and abusive health care environments, particularly in the context of women’s health care, reproductive and maternal health care, and children’s health care, breeds poor mental health. Other causal factors for poor mental health are: governance sanctioning communal violence, setting up inequitable development processes, gross insensitivity to the human consequences of technological and commercial invasions into the livelihoods and habitats of indigenous peoples and local populations, bio-medical dominance, and man made disasters. The solution to such structural and political problems is not a psychiatric pill. The root cause of social inequality, and the systems that uphold it, must be challenged by providing social justice. Providing social justice is integral to mental health. Mental health advocacy has to address social justice aspects also.

It is usual to include “mental health” as one special type of health issue. Yet, mental health is a separate agenda by itself. Just as health covers umpteen problems, mental health also is a vast area covering many kinds of issues, preventive, promotional as well as curative. Mental health however has received very little attention in programs, policy or in health advocacy. However, this area needs to be also seen as an independent area for advocacy and political action.

There are differences between the health sector and the mental health sector. Advocacy must take note of these differences.

Stigma against people who have been diagnosed with a mental illness is not found among the other health patients. People who have been diagnosed with a mental illness also run the high risk of being deprived of all their constitutional and citizenship rights (e.g. right to vote, right to hold political office, form associations, contract, etc.) All civil, political and social, economic rights are also taken away (e.g. right to free movement, right to consent, right to marry, etc.) Only in mental health can a patient be forcibly treated against her will, by the use of law. These conse-quences are not there for health patients, who continue to be recognized as full citizens of the state and whose civil political rights are not taken away.

Further, there are problems about how a mental health diagnosis is made: There are no conclusive biological “tests” for a diagnosis of mental illness, for example, a blood sample or a urine analysis. This results in a lot of subjectivity when someone is diagnosed “mentally ill”. Once a diagnosis is given, social and political exclusion are major conseq-uences. While we recognize that mental health does have linkages with health, mental health also brings in a lot of issues, which cannot be seen in terms of health.

Mental health is related to a just and equal society, where there is no discrimination or violence of any sort. The mental health status of an individual or a group sets the standard whether a state is equitable or not. Where the mental health of people is poor, we can take it that the society needs structural and political reform. A key index of a society’s inclusion of its people is the mental health status of its vulnerable and marginalized people, viz. women, the poor, elderly, children, dalits, tribals, religious minorities and sexual minorities. The state has a central responsibility in creating the political and structural environment, and therefore, towards enhancing people’s mental health. Mental health therefore lies at the basis of life in all its dimensions and is a basic right of all.

Protect the basic survival needs of people, including housing, shelter, clean water, nutritious food, work, education, good quality health and mental health care

Equal opportunities for all sections of society to find satisfying work and livelihoods; protection of employment of people with mental health problems

Programs where there is scope to develop people’s potentials, aspirations and achievements; promotion of mental health for people with diverse groups of people with special needs; prevention of mental health problems among vulnerable groups

A social, economic and political equity for all sections of society by which they can experience a sense of well being

mmediate redressal in situations of violence and conflict, social justice and restoration of peace to people and progress towards a violence free society

Good governance which upholds human rights and is inclusive of all people in the process of governing

Policies and laws promoting people’s mental health and are based on a human rights framework

Integration of mental health into other policies and programs related to social justice and empowerment, poverty alleviation, health, disability, food, housing, employment, education, rural health, etc.

Special recognition of the needs, protections and rights of people with mental illness

The state should remove all barriers in law which prevent people with mental illness to enjoy civil, political, social and economic rights.

Specific and greater budgetary allocation be made for mental health at the state, municipal, taluka and Zilla Parishad level; budgetary provisions should be made for community mental health services and not only for institutional services

The government should make policy decisions about large, centralized, overcrowded, unhygienic and custodial mental hospitals; creating more homely retreats or rehabilitation homes at the community level should be considered

A comprehensive national and state level mental health policy should be developed using an inclusive process of all stakeholders in the sector

Increase in the number of professionals and officials working on mental health within the State Health Department to ensure greater ongoing commitment to

formulation, implementation and supervision of mental health policies

Community based mental health care should be developed:

• Immediate review and evaluation of the National and District Mental Health Program
• Development of a good database on mental health and distress in the population based on expressed and experienced needs of people and local variations of populations; such mental health surveys should form a part of the routine government records on health status; survey should also map available resources in the area providing mental health care
• Tailor-made community care programs for each community including holistic approaches and social support and not limited to drug therapies
• Identify good community models practiced by NGOs and individuals and document for purposes of up scaling; create funds for supporting the same
• Initiation of promotional and preventive programs at the community level, such as starting counseling facilities, barefoot counselors, etc

Development of community mental health programs for substance abuse, domestic violence, suicide and depression and so on

Involvement of communities and the users of mental health care in planning and review of services and programs

Provision of residential and non-residential rehabilitation facilities, retreats and shelters, day care, and other such facilities

Review and revision of all laws relating to the mentally ill and make them human rights sensitive (Mental Health Act, Marriage and Contract Act, etc.)

Creation of new policy and legal

frameworks for starting non-medical and rehabilitation / recovery based mental health centers

Recognition and support of advocacy work of users and carers for improvement of mental health services through creating policies and other activities

Related to children and adolescents, creation of quality psycho-social intervention and prevention programs in all health services, including school mental health programs, child and adolescent guidance services, etc.

Provision of psychosocial interventions, promotional and preventive mental health services in women’s health, reproductive health, maternal and child health, micro credit, literacy and other empowerment programs

Provision and promotion of holistic mental health care including a range of skilled psychotherapies, counseling, home visits, etc.; Non drug approaches such as art based therapies, yoga, meditations, etc. should be a part of such holistic care

Affordable, accessible / available and equitable mental health care
4Rational drug treatment at all levels of mental health care

Maintenance of records / documentation of prescriptions, use of ECT, solitary confinement, restraint, etc. in all places where mental health care is provided

Respecting rights and choice of people with mental illness regarding admission, treatment and discharge

The state must provide violence free and consent-based management of patient care. Where forced treatment is resorted to, restrictions must be placed on this - the State must develop proper guidelines and procedures for assessment, risk, monitoring as well as review and legal representation / aid.

Guidelines and good practice standards must be developed for mental health treatments, including:

1. Information to be given to users and carers about available treatment options, which will result in them, choosing the mode of treatment. They also need to be given information about diagnosis, prescriptions, treatment and side effects of psychotropic drugs

2. Standardized, comprehensive diagnostic procedures, which takes into account a person’s social history, childhood history, medical, reproductive health and sexual history, history of trauma, violence and abuse, as well as socio-economic history

3. Service from mental health professional that ensures quality time, privacy, confidentiality, dignity, non hierarchical and non abusive forms of care and treatment

4. A charter of rights must be put up prominently in every place where mental health services are provided. Access to redressal mechanisms as well as provision of full information on how to access rights within institutions in event of violations

A need-based mental health care model and not one model for all. Women, children, adolescents, vulnerable groups such as street children, women in sex work, people in conflict situations, individuals affected by natural or human made disasters require services that are tailored according to their needs

Development of promotive, preventive and curative programs and services

Ongoing mental health training for government functionaries with the objective of introducing a mental health perspective across officials of different departments (police, judiciary, social welfare, disability, etc.)

Increase in the number of professionals by providing for mental health training facilities in medical, social work and psychology programs to ensure training with regard to psychosocial management of mental distress

Incorporation of mental health training in medical syllabi and refresher courses for medical professionals of all specializations, to incorporate a mental health perspective in their practices

Periodic social audit of the mental health care systems with regard to equity, technical and ethical issues

Integration of justice and legal aid services with the mental health care system at all levels; guaranteeing access to legal aid program for inmates in mental hospitals and judicial and legal custody

Addressing mental health care across institutions (beggars’ homes, state homes for women, remand homes for children, prisons and other custodial homes) in a human rights sensitive approach. Creating laws which are people friendly to address this issue

The special needs of homeless mentally ill persons must be addressed with a human rights approach

Ensuring that informed consent is sought in medical and non medical research related to mental health

Mental illness is the seventh category in the Persons with Disabilities Act. However, even the few benefits available to persons with disabilities are not made available to persons diagnosed with a mental illness. From the State we demand:

• Promotion and support of research and actions on psychiatric and psychosocial disability
• Implementation of The Persons With Disabilities Act for persons diagnosed with a mental illness also
• Representation of psychiatric disability through recognized civil society bodies in State level and National level disability committees
• Better co-ordination between the Mental Health and the Disability Departments and functionaries, from laws to policies to implementation
• Availability of programs for disabilities (psychosocial rehabilitation, self employment, protection of employment, etc.) for people with psychiatric / psychosocial disability
• Availability and access of benefits for persons and families with disabilities and simplification of the procedures
  ŸCreation of vocational training and other appropriate livelihood programs for persons with psychiatric / psychosocial disabilities
• Inclusion and integration of persons labeled with a mental illness into other disability programs
• Provision of disability certificates and also facilitation of the process of securing disability benefits based on the same by more number of institutions
• Removal of the barriers and contradictions in setting up rehabilitation and retreat facilities for psychiatric / psychosocial disability in the existing laws and rules (Mental Health Act)
• A genuine inclusion of mental health in all national as well as state level laws, policies and programs related to disability

Strict adherence to the various judicial pronouncements from the Supreme Court and the state High Court (e.g. Mahajan Committee Recommendations). Implemen-tation of the recommendations of the NHRC in the ‘Quality Assurance Report’

Provision of more holistic mental health care rather than an exclusive reliance on biochemical modes of treatment as well as a more effective management of debilitating side effects

Improvement in the patient - service provider ratio (For example in one of the state mental hospital, the ratio is 3 psychiatrists and 6 social workers to the population of about 1900 clients; Many hospitals do not even have a clinical psychologist. Psychiatric nurses, counselors and occupational therapists are also very few.) Recruitment of staff for vacant posts. Posts of clinical psychologists have lapsed due to non-recruitment. Re-advertising for the same.

Creation of new posts for rehabilitation and community mental health professionals

Improvement in the patient-attendant ratio, which at present almost amounts to 1:80

Judicious use of ECT following the international guidelines. Ban of the use of direct, unmodified ECT which is still practiced at some mental hospitals and government and municipal hospitals

Effective strategies to reduce huge number of long stay patients. Development of more community linkages

Abolishment of solitary confinement cells. Crisis intervention units must be humane and based on clinical goals. Staffs who are working in these units must be skilled in clinical work. Non-violence should be a value in

institutions and should be realized in practice.

Creation of programs on mental health awareness and reducing stigma associated with mental health

Ensuring continuity of medicines’ supply taking into account the quality of medicines

Hygienic conditions at the hospitals. Families must be freely allowed access to their relatives.

Self-grooming is an important aspect of personal well-being. Institutions should pay greater attention to this. Residents should be provided soap, oil, and other toiletries required. Hospitals should provide mirrors. (If glass mirrors are a problem, plastic mirrors can be provided). All the residents should be provided with undergarments. Women should be provided with sanitary napkins. Hospital must ensure adequate supply of the same. Routine shaving of head should not be done for women. Baths should be provided for every day. Residents should be provided washed clothes every day. Clothes worn by residents must be comfortable and appealing to the people wearing them. Casual dressing should be allowed instead of uniforms. Clients should be provided with individual storage space to keep their belongings. There should be some private space for prayer, reading, etc. Letter writing, making phone calls, etc. should be freely available. Clean, drinking water facilities must be freely available to all patients.

Utilization of large amounts of land owned by old institutions for vegetation and gardening

Better ventilation, lights and cleanliness of wards, renewal and repair of old infrastructure, provision of more comfortable bedding for sleeping as the current bed-patient ratio is poor

Improvement of dining facilities

Installation of intercom facilities

between wards and doctors / nurses’ station as the wards are at a distance from each other.

Greater emphasis on play, reading, recreation and leisure activities

Presence of a diagnosis does not automatically make a person incapable of taking decisions about his / her life. Currently many decision such as, which treatment to carry out, regarding adoption of the child, if the mother is labeled with a diagnosis of mental illness, the child is taken by relatives or most of the times by hospital authorities. We demand that there should be standardized ways of assessing capacity to decide before such decisions are made on behalf of the client

Better linkages with community NGOs, civil societies and other resources for eliciting community participation in mental health care

Greater financial and material resources and re-allocation of current human resources for strengthening occupational therapy activities and also developing effective marketing strategies

Increased range of occupational activities those match and enhance residents’ experience, interest and skills and that facilitate their reintegration in the society

Patients should not be used as manual labour. If their work is said to be therapeutic, objectives should be set for the therapy and work should be limited by those objectives. General maintenance of the institution cannot be considered as “therapy”

Effective and sensitive Information – Education – Communication strategies
4Involvement of families as active partners in mental health care through increased efforts and effective strategies

Privacy in visitors’ rooms, space for families to visit and stay, more community friendly ward spaces,

as it is available in other public hospitals

Increased participation of residents in planning vocational activities, daily activities, food and any other decisions, which concerns them. Overall there should be a spirit of voluntarism. The system must work towards upholding confidentiality, autonomy and dignity of patients.

User fees (daily charges of Rs. 22, certification charges, medical investigation charges, charges for medicines during the Leave of Absence, etc) need to be reduced and if possible eliminated

Aftercare plans for those patients who have been discharged. Also facilities like day care centre within the hospital

Initiation of support groups for recovered clients as well as for carers
4Transparency of the workings of the state mental health authority which should be open to review by civil society

Implementation of the Legal Services Authorities Act in the case of institutionalized patients. All patients should have a free access to legal representation and legal aid.

Demand socio economic security with respect to housing, property, food and insurance

Recognition of equality before the law
4Non discrimination in across all settings. Provision of an environment in which positive identity construction is possible for people labeled with the diagnosis of mental illness.

Freedom from violence and provision of a safe environment

Guaranteeing a right to bodily integrity

Right to vote, contest elections, hold public offices and be a member of statutory bodies for people with mental illness

Freedom to move freely and no deprivation of liberty because of a diagnosis of mental illness

Specific inclusion in poverty alleviation, self-employment programs, free vocational and skills training programs, equal wages

Respect of right to love, to marry, to raise a family

Legal aid and free and easy access to grievance redressal

Participation in formation and review of laws, rules, programs and policies related to mental health

Fulfillment of stipulations in the PWDA and UN Disability Convention

The Erwadi accident killing over 25 mentally ill people happened in the year 2001. Since then, very little has changed at the ground level, despite the momentum kept up by the Supreme Court of India as well as the National Human Rights Commission. The Central Government has been releasing large sums of money into the mental health sector (190 crores in the X Plan) but there is very little transparency with respect to how this money has been spent. There is a provision in the XI plan of nearly 500 crores on mental health. The allocations in the X Plan were mostly for mental hospitals. Community mental health is a highly neglected area in India. The government has to engage civil society in the service delivery as well as the human rights reform of the mental health sector.

For further information on JMAA, contact Sadhana Khati / Chandra Karhadkar at info@camhindia.org

About four years ago, there was this young girl of 22 years of age who smoked a lot, wandered on the street outside her college, drank a lot of alcohol, and did many more dangerous and embarrassing things, that didn’t embarrass her at that time. This girl had many friends - real and unreal. But she was caught. Not just in the bad habits that many youngsters like her get caught in, but she was caught in her own mind! The most dangerous obsession started pouring in…into her life. It ruled her. It ruled everything she did, everything she said, everything she heard-smelled-touched-tasted, and everything she thought! More so, it was no more her thoughts, as she knew others could hear her thoughts. So she stopped thinking! She stopped talking. She stopped going out of her house, her room. All she did was sit idle and talk to herself. She painted once in a while, but smoking filled her daily schedule and she slept most of the time. Eating was a very big decision she had to make, as her parents were apparently poisoning her meals. She trusted no one. She was imprisoned in her own mind! Nothing could save her now. Nothing imaginable. Her parents thoughts this was the end and also a beginning of a very sad future they all will have to live with and help her understand. Hope was gone. In fact, her father threw that word out of his dictionary. As for her mother, she hardly even knew that word existed. And her younger sister only lived in confusion. This dangerous obsession crept in and grew deeper and stronger over time. Everyone knew something was wrong with her but didn’t have the courage to do anything about it.

A couple of weeks had passed with a lot of arguments at home about her behavior. It went unnoticed most of the time as her parents were trying not to notice it. They assumed it was just a phase and one of her rebellious side taking over again. Then, a day came when she stormed into her lecturer’s cabin at college and said that she is going to kill every

student outside the cabin. Obviously, her lecturer thought she was joking, only until she pulled out a knife from her pocket and started talking to her herself while walking back and forth. The only thing that could be done was for her lecturer to close the door and leave her there while she called another colleague for help.

What happened after that incident was a one-way roller coaster. It only went downwards. Arguments took place at home. Fights took place within her. The walls at home were not mere walls, but prison bars. This girl was suffering. From the inside and the outside. She looked sick. She had dark circles, unwashed hair, dirty fingernails, and wore the same set of pants and t-shirt. She smelled of smoke. She withdrew from people, her friends, her family, her pet, herself! Days were filled watching TV and interpreting messages from the radio and television. She astral traveled and went to the same place over and over again. Sleeping was no more an easy thing for her. When she bathed, her mom would be around the bathroom, hoping she wouldn’t hurt herself. When she wanted cigarettes, her father would walk with her to the shop hoping that she wouldn’t run some place else. When she sat in her room doing nothing, her sister would be made to sit in the room just to make sure she didn’t lock the door from inside. This took away all her privacy. But did that make a difference to her? No. At that point it didn’t. Because she didn’t know what that word meant anymore. Her life was in danger. People were trying to kill her. Men were tormenting her by calling her names and making her do things she didn’t want to do. She knew she was meant for something higher, a great mission she had to accomplish, where the whole world depended upon her. This dangerous obsession took her many places she had never been before. Places no one else have even dreamt or imagine could exist. A place that would lead her to secrets and great power. This is the place, which she calls ‘the

undiscovered mind’. And this girl in none other than me.

I couldn’t complete my education and had to take a break from everything I once did. It was no more just giving it a go or trying or even struggling. I needed help. I needed someone else to help me and not myself! The help came in. Family, doctors, counselors, support groups started making a difference. But somehow with every step forward a relapse set in and I only fell ten steps behind. Re-starting once again was too much of an effort. Brushing my teeth, taking a bath, grooming myself well, eating and drinking right, I still felt helpless and hopeless. I woke up each morning with suicidal thoughts and slept each night wishing that I will sleep forever because I was useless! I was just a pain to everyone who tried to help me.

As months passed, relapses and recoveries were the only activities in my life. I somehow managed to complete my bachelors degree and move on to masters. This has also become another struggle for me as this illness doesn’t seem to leave me! No matter what I do, it keeps showing up in a different mask and I have to change the way I look at it. Every time I understand it, there is just more of it to understand! I sometimes feel that I shouldn’t have the insight that I have! I should just have remained under the care of the medications and let them rule my symptoms for me. I do feel sick of it. Sick of the fact that no matter what I do, it is always caused by my symptoms. I feel there is no me. Who am I? Am I just a combination of all my symptoms? Are they always going to rule what I do and think? So then I began believing that when I have such an illness, why do I need others to talk to? Doesn’t it make sense? I have all those wackos in my head that keep talking to me all the time. They are as real as everyone else. I can touch and feel them too. So why do I need others????? Do the real people really matter to me? The answer I gave myself was NO. There was too much of heartache talking to real people.

Too much of hypocrisy in their words and deeds. Too much of politics and lies. Nothing about these real people and this real world seemed exciting and true. My world was a much safer and nicer place. I didn’t have to answer anyone nor hate anyone. The love among the fellowmen in my mind grew. Though I knew I was depending on them I liked it. I felt comfortable. No one would ever be able to take them away from me. BUT I was not free! I still felt tied down.

It took me a lot of time, and effort of my own to realize this and do something about it. No doctor, medicine, counselor, friend or family could help me now. I was stuck in my world that I couldn’t live without. I felt miserable when the real people were there and miserable when the unreal people were not there. I started living each day with confusion and frustration. I couldn’t do anything. How could I chase away the real and call the unreal whenever I wanted to?

A day then came when I realized that if I had to live in both these worlds and survive them simultaneously, I had to do something about myself! I obviously couldn’t change any of them though the unreal world was actually a part of me. But, I had to look at it as something that was not a part of me to deal with it. Cause if I did the opposite I would end up living in this unreal world forever and never quite reach anywhere in life. Hence, I decided to speak! Speak to people. The real people. People around me. My mom, sister, friend, everyone. I decided that I had to make the difference in others lives and not them in mine. I had to move to move others. I had to change for others to change.

As Kahlil Gibran quotes: ‘And when you have reached the mountain top, then you shall begin to climb’. I have always lived by this quote throughout my recovery. I am still recovering and always will be.

Reshma Val

information," "simple reaction time," and most tragically "global cognitive status" or overall mental function. In other words, the patients continued to have trouble learning and remembering new things, they were slower in their mental reaction times, and they were mentally impaired across a broad range of faculties. The statistical data indicates that a large percentage of patients were significantly impaired.

Many patients also had persistent abnormalities on the EEGs (brain wave studies) six months after treatment, indicating even more gross underlying brain damage and dysfunction. The results confirm that the post-ECT patients, as I have described in numerous publications, were grossly brain-injured with a generalized loss of mental functions.

Some of the older forms of shock— and still the most commonly used—produced the most severe damage; but all of the treatment types caused persistent brain dysfunction. The greater the number of treatments given to patients, the greater was the loss of biographical memories. Elderly women are particularly likely to get shocked--probably because there is no one to defend them--and the study found that the elderly and females were the most susceptible to severe memory loss.

Destroying Lives

The study does not address the actual impact of these losses on the lives of individual patients. Like most such reports, it's all a matter of statistics. In human reality the

would require too much autobiographical detail to communicate the severity of the attacks on me surrounding my criticism of ECT. It was second only to the attack on me from the drug companies for claiming that antidepressants cause violence and suicide.

Will the latest confirmation of ECT-induced brain damage cause shock doctors to cut back on their use of the treatment? Not likely. Psychiatrist and their affiliated neurosurgeons always knew that lobotomy was destroying the brains and mental life of their patients and that knowledge did not daunt them one bit. It required an organized international campaign to discredit, to slow down and to almost eliminate the surgical practice of psychiatric brain mutilation in the early 1970s (Breggin and Breggin 1994). The ECT lobby is much larger and stronger than the lobotomy lobby, and much better organized, with its own journal and shock advocates positioned in high places in medicine and psychiatry. Stopping shock treatment will require public outrage, organized resistance from survivor groups and psychiatric reformers, lawsuits, and state legislation.

OOO

References

1. Breggin, P. (1979). Electroshock: Its brain-disabling effects. New York: Springer Publishing Company.
2. Breggin, P. (1991). Toxic psychiatry. New York: St Martin's Press.
3. Breggin, P. (1992). The return of ECT. Readings: A Journal of Reviews and Commentary in Mental Health, 3 (March, No. 1), 12-17
4. Breggin, P. (1997). Brain-Disabling treatments in psychiatry. New York: Springer Publishing Company.

5. Breggin, P. (1998). Electroshock: Scientific, ethical, and political
issues." International Journal of Risk & Safety in Medicine 11, 5-40.
6. Breggin, P. and Breggin, G. (1998). The war against children of color. Monroe, Maine: Common Courage Press.
7. Frank, L. (1978). (Ed.). The history of electroshock. Available from L.
8. Frank, 2300 Webster Street, San Francisco, CA 94115. Also available on www.Amazon.com.
9. Frank, L. (1990). Electroshock: death, brain damage, memory loss, and brain washing. Journal of Mind and Behavior, 11, 489-512.
10. Frank, L. (2006). The electroshock quotationery. Ethical Human Psychology and Psychiatry, 8, 157-177.
11. Friedberg, J. (1976). Electroshock is not good for your brain. San Francisco: Glide Publications.
12. Friedberg, J. (1977). Shock treatment, brain damage, and memory loss: A neurological perspective. American Journal of Psychiatry, 134, 1010-1014.
13. Ross, Colin (2006). The sham ECT literature: Implications for consent to ECT. Ethical Human Psychology and Psychiatry, 8, 17-28.
14. Sackeim, H., Prudic, J., Fuller, R., Keilp, J., Lavori, P. and Olfson, M. (2007). The cognitive effects of electroconvulsive therapy in community settings. Neuropsych-opharmacology, 32, 244-254.

(from www.breggin.com), 04.01.2007

Chaitanya Mental Health Care Centre, Pune, had organised an interactive session on 1st of April 2007 at Fergusson College, Pune, to encourage the use of ECT The topic of discussion was “Myths and facts of Electro Convulsive Therapy (ECT) or shock treatment in psychiatric care”. Dr. Yusuf Macheswalla, president of the Mumbai Psychiatrist association, and Dr.Vidydhar Watve, senior private psychiatrist from Pune, were the resource persons for the programme.
On All fools day, the program aimed to “eradicate myths” and bring back rationalism. The invitation letter to the program was appealing to the public: “To eradicate foolish myths and phobias on ECT”. A large poster with a message “Nothing Shocking about Shock” was also distributed widely.

Bapu trust, an advocacy organisation in mental health, Pune, organised a peaceful protest at the venue. They distributed data and information countering the rosy and romantic picture painted of shock treatment. Questions were raised at the meeting, showing how controversial the treatment is. The organisation has condemned in no uncertain terms, such misleading public presentations, made by responsible senior members of the IPS (Indian Psychiatric Society) and is preparing a full fledged campaign against ECT.

A brief note on Dr Yusuf Macheswalla’s presentation

The doctor started by talking about the need to talk about ECT. He stoutly stated that ECT was very safe and if asked, he would say that “it was the only weapon” that he had to treat mentally ill

patients. His reporting on the near magical qualities of ECT included: immediate clinical improvement, rapid recovery, easy management, no side effects, reduction in hospitalisation, and no potential of abuse or dependence.

Reiterating the medical view about the treatment, he advised that ECT may be used as the 1st line of treatment in the management of schizophrenia and related mood disorders. ECT, according to him, may be used as a life saving measure in cases of Neuroleptic Malignant Syndrome, (which is a serious and fatal side effect of anti-psychotic medication). He noted, remarkably, that death due to ECT is extremely rare. Among those eligible for ECT, he was far more inclusive than standard clinical practice. Other than all mental illness, he included neurological conditions such as Resistant Seizure disorder, Parkinsonism, Chronic or extended delirium, intractable epilepsy with psychopathology and Psychosis or depression associated with neurological disorders such as Wilson’s disease. He advised the other psychiatrists present in the room that ECT can be safely used in young children, pregnant women, diabetic patients, senior citizens and medically, even orthopedically, compromised patients. In his practice, ECT has reportedly worked with autism, and childhood depression. He noted that the treatment works wonders with “young people who seem aimless and are drifting”. His presentation repeatedly emphasised that there were no side effects. With respect to how ECT works, he gave the standard medical view that “it normalises brain chemical imbalance” without citing any evidence. Under

anaesthesia or without anaes-thesia does not make any difference, according to him. Both were pronounced equally safe, except that anaesthesia helped in avoiding the patient’s fright of the procedure. In his practice, 14-16 ECTs were commonly given. He noted that there was no upper limit to ECT, citing the case of one patient who was given 208 ECTs!

Success stories narrated by Dr. Macheswalla

	Patient with schizophrenia who developed fracture of spine after an unmodified ECT was safely given modified ECT
	Cervical spine fracture person was given ECT
	Eighty two year old person showed rapid improvement after ECT
	A middle class clerk, schizophrenic patient with strong delusions was treated with 44 sessions of ECT
	A fourteen-year-old child started going to school after ECT
	Four-year-old infantile autism has been treated with ECT

In response to consumer interests, he noted that his service facility charges between Rs. 1000 to 5000 per ECT. Taking the consumer culture one step forward, he noted that if a person takes “in bulk” (30-40 ECTs), they may receive one or two ECTs free of charge! The audience were informed that it is easy to subsidize ECT, compared to psychotherapy because it happens in bulk whereas, psychotherapy is time consuming where doctors may not like to subsidize.

In response to the question why ECTs are repeatedly given, he remarked that the nature of the illness is such where people keep

relapsing and keep asking for ECT. He observed that no regulation of the procedure was necessary, as lawyers or judges were in no position to decide whether a patient should be given ECT or not. While casually remarking on the possibility of death, he noted that there are hardly any chances of medical emergencies.

With respect to a question why a person with a mental illness is not given any choice and her consent is not taken, he pointed out that the nature of mental illness is different from the nature of physical disease: Anyone suffering from the former has no insight!!

 

 

Statement from Bapu Trust: