Everyone experiences different phases of life- good or bad. However, suddenly when we face a calamity, we are nowhere! We are thrown in a deep valley of sorrow. Ours was a small family. Our only child, our son, who successfully became a Doctor (M.B.B.S.), was preparing for his P.G. in Surgery, when he suddenly passed away. This was the end of our life. Our existence became totally meaningless. Relatives and friends were with us at the time of crisis. Yet, no helping hand was able to bring us out of acute grief. We were in this world, but were not a part of the world. Why we should continue our existence, was a question before us.

Today, everybody’s life is full of stress. This affects the young professionals, and in particular, the medicos. There is a need to reduce this stress among medical students and young doctors. We felt that the deep sorrow we experienced should not come to others and they should be saved from such calamities.

With this intention in mind, we approached a noted psychiatrist in Pune city, who is the director of a hospital psychiatric unit. He gave us audience immediately. He understood our feelings. He advised us to have a dialogue with his colleagues. His colleagues were attentive and responded appropriately to the delicate state of our mind. We met them every week for one hour and had very kind, helpful exchanges with them. Each meeting was a further stage of improvement. We got meaningful directions from them. We were earlier completely broken. But psychotherapy helped us to recover and enabled us to stand on our own legs. With continuous monitoring of our problems, counselling, along with some medication, there was definite improvement in our mindset.

It must be said that we will never be out of sorrow. But the psychotherapy has helped us and made us want to devote more time towards prevention of such problems for medicos.

During this time, we were able to study microscopically, the mindset (“mental synthesis”) of our various actions. In everyday life, we do not give much attention to ourselves, or to our minds. When we come across somebody in sorrow, we extend our help, express grief. We mutter consoling words. But it is beyond our imagination, how much that person is literally bleeding internally and is mentally fractured. We advise them to come out of sorrow and start a normal life. The sufferer needs something more than this! While giving consolation, her / his wounds may get opened up once again.

When we are physically not well, we take some medicines or visit a Doctor. But when our mind is disturbed, we do not take any action. Some times we are sad, angry, humiliated or frustrated. We ignore all these feelings. In addition to this, we also face stress and professional competition. During such times, we do not get ourselves treated for our disturbing minds. The fact that counselling is available is not even known to most people. It is very essential to have this known to each and everyone in the society. Our experience has convinced us about the importance of counselling. Whosoever is in distress, if somebody could talk to such a person, understand his / her feelings and problems, then he / she will get some sort of solace and feel re-assured.

Everybody’s mind is full of different, mixed-up thoughts about himself and about others. Some people are able to control these feelings and distress. However, sometimes this turns out to be a problem. Then, no advice or common sense is sufficient to satisfy the individual. Such a person suffers severe mental tension, and is thrown into depression.

Today we find stress in all spheres of life, especially being faced by young professionals. Particularly medical students are experiencing depression during 6 ½ years of their degree course, internship and rural service. The medical education

course is longer and heavier compared to other branches. The medicos do not realize that they are under constant stress due to studies, competitions, examinations, hospital duties, and being in constant contact with all kinds of patients. Also, they get lonely being away from home. After college, they are immediately thrown into an atmosphere, which demands heavy and continuous duty, odd duty hours, and emergencies. In addition, sometimes they have to face the management’s demands, rough handling, insults, etc. Research studies have shown that an experience of humiliation and entrapment may provoke a depression. There is always a constant urge, being an intelligent lot, for performing well and doing better in professional competitions. They neglect to take adequate rest, good food, regular exercise and other enjoyment of life. They have no time to think of all this. Research reveals that stress results from a relentless cycle between work, family and life style, which in turn has a direct biological effect on health and illness. The more sensitive ones become victims of anxiety, worries, dejection, agony, anguish, remorse and dismay. These medicos become victims of anger, rage, resentment, helplessness, frustration etc. They declare themselves unfortunate. This distress feeling sometimes takes a dreadful turn, as happened in the case of our son. Recently, there is increase in the number of medical students attempting suicide.

For the medical course, students are selected on merit. The students from the top cream are generally selected for the course. But, if these boys meet this sort of fate and despair, at least some students and parents are likely to think otherwise.

‘De-addiction’ has got a lot of importance and that is good also for social health. One reason for a person to become addicted to drugs and alcohol is stress, dejection. Hence, to free alcoholics from the addiction, special efforts are being made. (E.g. MUKTANGAN Project, clinics held by many corporate organizations etc.) We feel that similar efforts should be made for medicos too. Here, we would like to emphasis that doctors, who are supposed to take care of society’s health, should be first looked after, especially for their psyche, spirit, frame of mind and total well - being.

The word “disability” more often brings to mind a person in a wheel chair or a visually impaired person. Even within the realm of mental disability, it is synonymous with mental retardation. Disorders of the mind, amenable as they are to medical treatment and equally, if not more disabling than many other conditions have stood by the way side for a long, long time – waiting for some kind of recognition.

This is despite the fact that

There are several factors that have accounted for the non-recognition or delayed recognition of mental disability. Some of these are the poor visibility accorded to this disability, its rather subtle and hidden nature, and the lack of awareness and sensitivity to this even amongst mental health professionals. Mental illness, unlike other disabling conditions, on account of the social stigma has been swept under the carpet for centuries. Speaking about it was taboo. It is only in the last decade that family members, consumers and professionals have been more forthcoming about discussing this in the open.

The Persons with Disabilities Act passed by the Indian Parliament in 1996 provided impetus by including this disability on par with others. However a lot of questions were left unanswered and the subsequently formed Amendment Committee addressed some of these issues.

International Developments:

Internationally, the revision of the classificatory tool, the ICIDH brought into sharp focus the importance of classifying and measuring disabilities. A major international project was launched jointly by WHO and the National Institute of Health, USA to field test some of these concepts and permit for cultural and regional diversities.The underlying principle was that disability was an universal phenomenon. ICIDH-2 later renamed as ICF( International Classification of Functioning) envisaged a shift from a purely medical model of disablement to a biopsychosocial model- from a minority model of disablement to an universal model. Due weightage was accorded to the recognition of environmental and social factors in the process of disablement.

The subjective components of any illness or health experience are also being increasingly taken note of and measures and even correlated with the functioning status. Health is no longer viewed in isolation, but closely linked to environmental and personal factors.

The multi-country, international project also recognized that planning of health care services did not depend on diagnosis alone, but on the dimensions of functioning and disability as well.

The Indian scene:

The National Mental Health Programme made only a passing mention of rehabilitation and practically nothing on disability. This issue was also contentious in the sense that the Ministries of Health and Social Welfare (now renamed as Social Justice & Empowerment) were debating amongst themselves as to who should handle this. This was largely because of the fact that although the disabilities of mental disorders are as real and prevalent as other disabilities hitherto recognized, the nature of interventions are different. Both medical treatment and rehabilitation have to be provided simultaneously. To some hard-core rehabilitation professionals, this seemed to negate the basic tenets of rehabilitation since it was

concessions especially bus passes. Access to loans to the disabled and their families to start some private ventures to generate employment is another avenue.

This also provides a platform for consumers to protect their rights and needs.

Tools to measure disability:

There are several instruments available to measure disability, the WHO-DAS being one of the most used. In India we were in need of a simple, yet comprehensive instrument to measure mental disability, which can be used at the primary care level, by all mental health professionals. It was also necessary that disability scores with corresponding percentages had to be generated by the instrument. With all this in mind, the IDEAS was developed by the Rehabilitation Committee of the Indian Psychiatric Society. The Ministry of Human Resources and Empowerment, Government of India have since gazetted it. IDEAS needs to be tested on the field for a few years in order to be refined. It has however effectively dispelled the notion that measurement of mental disability is not possible or feasible.

Finally, it needs to be stressed that much more work awaits to be done in this field- both in terms of collection of hard data on disability and address its relationship to cost- effectiveness of existing programmes, health service utilisation, changing public attitudes and stigma. All intervention programmes must be sensitive to the recognition of abilities and disabilities and work towards enhancement of functioning rather than amelioration of clinical symptoms alone.

Why a special service catering to women’s needs?

Seher was started in Pune city because, we believe that the subject of women’s mental health should be viewed separately from a general notion of mental health.

- Differential social stressors: Women, as a result of patriarchy and their unequal social status, experience a different social reality, which strongly impacts their emotional health.
- Differential role constraints: Due to the way our society, and the social roles within it are structured, women invest more in family, children and other care giving roles. As cultural standards for these roles are near impossible to achieve, women are riddled with guilt, shame and diminished self worth.
- Differential work satisfaction: While women may be overburdened with household labour and paid work, such work does not obtain much value or power for them in social or family negotiations. For example, even a highly educated woman may be forced to accept conventional roles driven by stereotypes, such as, “women are better at being wives or mothers”.
- Differential socialization: Women, right through their developmental years, are taught to prioritize others’ emotional needs over their own. They are often pushed into care giving roles very early, even before their own developmental needs are met. Their physical development, stamina, capacity to defend themselves or set boundaries in relationships, is not encouraged.
- Violence against women: Women are often victims of abuse and violence within their own families. Women are more often victims of hate crimes by men.
- Differential health needs: Women’s nutritional, health and reproductive health needs are often unmet, causing minor to major mental health problems.
- Differential mental health needs: Women’s mental health is affected by the cumulative effect of all the above. Common mental health problems (depression, anxiety,

phobias, panic and trauma) are two or three times more frequent in women than among men. Recent data from the World Health Organisation suggest that depressive disorders account for 30% of neuro-psychiatric disability among women in the developing countries, but only 12.6% of that among men. Women are more likely to experience a chronic and longer-term episode of depression, with a higher likelihood of recurrence as compared to men. 10% of women experience post-natal depression in weeks following childbirth.

Seher – A woman centered service:

Seher was created to fill a gap in mental health service provision for addressing this diversity of needs among women. Through Seher, we want to create healing alternatives, which anchor a woman’s emotional health meaningfully within the context of her lived experiences, rather than on medical diagnosis. We are striving to create a woman centered mental health service, addressing a diversity of women’s needs.

Medical diagnosis of mental disorder, while being a useful tool to manage complex psychological realities, tends to be gender biased. The diagnostic categories reflect a bias in the concept of a “mentally healthy person” itself. Masculine attributes (rational, balanced, decision maker, logical thinking, assertion, etc.) describe the desired standard, whereas feminine attributes (emotional, sensitive, dependent, submissive, etc.) describe standards of mental disorder. Seher does not place a premium value on psychiatric evaluation and diagnosis, in planning individual interventions.

The social life of the woman and her relationships are not very relevant in a medical model of intervention. Issues concerning inequality in the household or community, domestic violence, sense of powerlessness and lack of hope or joy do not get addressed. At Seher, the psycho-therapist will situate the intervention around issues concerning a woman’s resistance and struggles for empowerment.

Seher’s objectives:

Seher’s cardinal principles:

Seher’s approach and activities:

Seher approaches women’s mental health and in general, common mental ill health, in a holistic manner. Seher offers psychotherapies (individual, group, family and CBT). Seher believes in the prevention of mental disorder and conducts training and capacity building programs for community case-workers. Seher works with a multi-disciplinary team - (user, activist, medical doctor, nutritional therapist, psychologist, psychiatric social worker, psychiatrist) - to give direction to the work, to build capacity of Seher staff, peer review and to offer consultations to Seher users. Seher’s referral system, in due course, will include clinical referrals (health, reproductive health, psychiatry, ISM, clinical psychology, nutrition) and social referrals (lawyers, support organisations).

The program invests in sufficient study time and capacity building time for the staff, so that the program remains tied to current knowledge. The program also encourages staff to take steps to enhance their own psychological well-being and prevention of burn out.

Seher’s indicators of woman centered psychotherapy:

Opposition to such esoteric practices is vehement, especially in Maharashtra, where modernizing agencies feel the need to “educate” populations in demystifying these experiences within the community. It is their mission to falsify experiences of ecstasy by colouring it as deliberate and deceitful activities, engaged in by a group of individuals in order to gain popularity, and cheat others of money.

One would wonder, however, that if cheating and malpractice was the pivotal issues here, then how did their scrutiny overlook the cheating and fraudulent activities of “science based” disciplines, supposed to render service within the community.

United Nations Disability Convention – A brief report

Article 2 on General Principles offers full, effective and equal enjoyment of all human rights and fundamental freedoms to persons with disabilities, including dignity, individual autonomy, non-discrimination, total inclusion, respect for diversity and equal opportunities.

Article 4 enjoins all States to be obliged to adopt legislative, administrative and all necessary measures, including amending, repealing or nullifying laws and regulations, as well as discouraging customs or practices, which are inconsistent with this convention. States are also obliged to mainstream disability into all their existing programs.

In India, except for a few southern states, psychiatric disability remains an alien topic in the disability commissions, and remains unintegrated even in the existing disability programs. Also, if India ratifies this Convention, then large-scale law reform (mental health law; all relevant criminal procedure and custody laws; civil laws such as Contract Act) will be required to ensure that the standards set by the Convention are met.

Article 5 makes the States obliged to promote positive attitudes towards persons with disabilities, as capable people, who can contribute to society.

Article 7 is a non-discrimination provision, making the States obliged to guarantee equal and effective protection against discrimination on any ground, such as race, colour, sex, language, etc. The proviso includes direct, indirect and systemic discrimination.

Article (7.3) has been debated widely among psychiatric user and survivor groups.

The Article implies that, States may take actions (including legal) if they can “objectively and demonstrably” justify them as legitimate aims of governance, and is able to demonstrate the reasonableness of the process. The psychiatric consumer groups are viewing this as a gap, by which States can turn coercive against them.

Article 8 enjoins States to reaffirm the inherent right to life of all persons with disabilities. This provision has many serious implications for states like India, where managers of custodial institutions, known for their gross violation of the right to life clause in the human rights discourse, have to reconsider their approach.

Under Article 9, all persons with disabilities will be assured of equal recognition as a person before the law (9a). Also, persons with disabilities will have full legal capacity on an equal basis as others, including in financial matters (9b). Article 9 has far reaching implications for persons with psychiatric disabilities in India.

Readers of aaina may be aware that the Indian laws and adjudication on mental ill health, regularly uses legal incompetency as a systematic way of social exclusion and disempowerment of persons with a psychiatric disability.

Article (9c) is on “assistance” (relevant for example, in the context of guardianship arrangements in the Indian context). The article enjoins that assistance given should be proportional to the assistance sought and tailored to their situation. Such assistance also must not interfere with the legal capacity, rights and freedoms of the person with a disability.

Further, the provision, meant to prevent abject dependency or legal take over of persons’ lives, allows proxy decisions only in accordance with a procedure established by law and through legal safe guards.

Further, under this Article, there may be a context for speaking about a “right” to necessary assistance, wherein assistance may be assured in understanding information, expression of decisions and choices, expression of preferences, assistance in contracting, signing documents or acting as witnesses.

This Article also enshrines the right to own or inherit property, to control their own financial affairs, equal access to bank loans, mortgage and other forms of financial credit, and protection against arbitrary deprivation of property.

Article 10, on the right to liberty and security, enshrines the right, not to be arbitrarily or unlawfully deprived of liberty. If so deprived (by law) such persons should be treated respectfully, given all information, offered legal aid, and regular review must be done, of the deprivation.

In the Indian context, it is predictable that this Article will be liberally used to indefinitely deprive someone of the right to liberty. Even something as serious as civil commitment to a custodial house, rarely comes under review or reconsideration. Relevant papers are nominally signed and pushed by the institution managers and the courts, prolonging incarceration indefinitely.

Article 11 prohibits torture and cruel treatment, as well as research without informed consent. Article 12 places restrictions on forced treatment and forced institutionalization. It also places responsibility for violence within institutions (among residents, for example) on the institution managers.

Advocacy groups have been pressing for a more unconditional statement prohibiting forced treatment.

Article 14 enshrines the right to privacy within institutions, as well as a right to sexual and family relationships. Under this provision, there are restrictions on separating child from parent.

Article 15 grants the right to independent living, and prohibits forced stay within an institution. In the Indian context, one can think about the many unfortunate persons with psychiatric disabilities, living hopelessly within such institutions because “they have nowhere else to go”. It would now become the Indian State’s responsibility to organize independent living and other proactive measures to facilitate re-entry of such persons into the community.

Other rights enshrined in the Convention are right to education, right to political participation, mobility and access, right to work, right to health and rehabilitation and right to cultural life, sports and recreation.

If implemented in letter and spirit, the Convention would normalize psychiatric disability among the range of disabilities, and grant the same rights to those with psychiatric disabilities. The two significant gains of this Convention, for persons with psychiatric disabilities, are the right to be recognized as equal and competent before law; and secondly, the prohibitions on forced treatments.

The Conference also called upon all members of the WNUSP to lobby their national government and to make alliances with the wider disability movement to pursue their goals. The participants of the Conference supported the view that people with psycho-social disabilities have equal rights and responsibilities with all other people.

Two NGO consultations were held this year, in March and April, at Bangalore and Delhi, to bring grass roots perspectives to the UN Disability work. The report of the consultations can be downloaded directly from the United Nations Website, or can be obtained from Ms. Anuradha Mohit, Special rapporteur on Disability, National Human Rights Commission, Sansad Marg, New Delhi. A wide range of disability organizations participated in these consultations. Among the organizations representing psychiatric disabilities, carer groups (AMEND from Bangalore; NFMI, New Delhi) and service provider groups (IHBAS, New Delhi; The Turning Point, Calcutta) participated.

In general, the recommendations made by the consultants and authorities have been liberal and progressive, and inclusive of the needs of persons with a psychiatric disability. However, some modifications suggested are detrimental to the right to self-determination of psychiatric users.

For example, with respect to Article 9(d) the consultation has asked for the inclusion of the following provision: “In the event of reduced or temporarily diminished legal capacity, a duly appointed surrogate may exercise the legal capacity in the best interest of such a person with a disability”.

Users of psychiatric services, and user support organizations, must consider and interrogate this recommendation. This provision will, in India, and in countries like India, allow the continued social and legal oppression of psychiatric users, by surrogate decision-making, proxy consent, involuntary commitment / treatment and forced guardianship arrangements. Bapu Trust, a user support organization, presently aligned with the advocacy position of the WNUSP on the disability convention, supports full legal capacity with the right to different kinds of appropriate “assistance” (as defined elsewhere in this issue of aaina).

Another modification suggested has been with respect to Article (11): “To ensure that the best interest

of the person is protected in the event the person is passing through a phase in which he or she is unable to communicate free consent, no intervention shall occur unless a form of consent is given on their behalf by a duly appointed nominee by the person concern(ed) or by an impartial authority established under the law”. Users of psychiatric services would be wary of this provision, as once again, there is the underlying threat of forced treatments.

The NGO meet has made a revolutionary note, as an addition to Article 24, which users may support: Special provisions should be made for psychiatric users as they often suffer from “prolonged intake of medication and their side-effects”. This point highlights the disability caused by long term drug use, long term institutionalization, as well as disability caused by the indiscriminate and repeated use of shock treatment among the psychiatric patients. The Disability Convention should indeed consider these issues, as it is in a way unique to the context of developing nations, where there is glaring lack of prevention and rehabilitation programs.

In the Indian context, the family remains the predominant support for users of psychiatric services. However, we also need to acknowledge the conflict of interest between carers and users. Law and advocacy should not presume matching interests between these two parties. Families cannot completely take over the decision-making capacity and independence of the end users of psychiatric services, as will continue to happen if these provisions are included.

Along with the main recommendations of the NGO meet, an annexure of recommendations has been appended, made by “The Turning Point” (Calcutta) and the “National Federation for the Mentally Ill” (New Delhi). These recommendations are pretty regressive from a user point of view and should be rejected. It is noteworthy that many of these recommendations have not found a place in the main recommendations of the NGO meet. The annexure writes against the spirit of Article 9, by suggesting forced treatment, and the “right

to treatment of uncooperative mentally ill with full consent of parents or caregivers”. “Special provisions should be kept for necessary interventions of persons with mental illness when and if required with the consent of their caregivers as often in acute phase, mentally ill persons are not able to take decisions for themselves and reject intervention that is detrimental to their health”. These carer groups and NFMI, a coalition of organisations, have repeatedly suggested provisions for forced treatments and the unconditional right of care givers to make treatment as well as life / legal decisions. Some terms used, such as “uncooperative”, etc. smack of paternalism, dependency relationships and lack of respect for the wishes of the individual sufferer.

In this context, it is useful to refer to the WNUSP caution and clarification about “assistance”. This global user coalition notes that “assistance” can be inadvertently turned back to substituted decision-making if the fundamental nature of the freedom to make one’s own decisions is