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reflections

Choosing a Mental Health Professional

Sadhana Vohra

Editorial Team
Bhargavi Davar
Sadhana Natu
Radhika Kulkarni
V. Radhika
Soumitra Pathare

aaina is a mental health advocacy newsletter. Advocacy demands critical, creative and transformative engagement with the state, policy makers, professionals, law, family and society at large. aaina will thematically cover issues in community and mental health, NGOs in mental health, self-help and healing, non-medical alternatives in mental health, rights, ethics, policy and needs of special groups. aaina provides a forum for user expression of their experiences with mental health services and debates issues concerning rights of persons with psychiatric disabilities. We look forward to meaningful dialogue with individuals and groups alert about these issues.

Those interested in receiving copies of aaina may contact us at wamhc@vsnl.net. Write to us with all your suggestions, criticism and viewpoints on the issues covered.

We appreciate and thank Jayasree Kalathil for giving shape to aaina and wish her the very best with life and opportunities.

Design and Layout
Anand Pawar

Printing
Anita Printers, Pune

Contact Address

7, Krishna House
Fatima nagar
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Tel. 6872672

Email: wamhc@vsnl.net

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The biological aspect requires that all possible medical reasons for our psychological distress be checked out. For instance, thyroid malfunctioning can cause a depression-like disorder, which clears up once correct medication for the thyroid problem is taken. It is the psychiatrist’s responsibility to examine us for physiological problems that may produce or add to our distress.

However mental distress is usually not related to a discernible physical problem. There was a time when MHPs were engaged in an intense debate about the cause of mental distress. Biological theorists argued that all such distress occurs because of a biochemical disorder and can be treated effectively with medication alone. Environmental theorists argued that it occurs because of problems in our life situations and should be treated psychologically. Added to this was the evidence from the psychoanalytic theorists that human beings operate from different levels of consciousness and our unconscious part and dream states are also implicated in our mental health. Because psychiatrists are medical doctors they tended to be adherents of the biological theories and the others, because they are trained in the study of human behaviour and ways of bringing changes in it, tended to support the environmental position.

Currently, most MHPs do not engage in this debate because they see it as a ‘chicken and egg’ problem. Most agree that humans are born with certain pre-dispositions. Environmental factors interact with these dispositions to blend into our mental health. Human mind and body are practically indivisible. Sometimes the pre-dispositions make a stronger impact, at other times the environment is more strongly implicated.

The first thing for individuals seeking alleviation from mental distress is to determine what specific course of treatment is best suited for them. This decision can be made by consulting any well-trained MHP who would be able to offer specific advice and recommendation.

Broadly, mental distress can be divided into two categories:

1. Distress that allows us to function within our world, where even if we are not satisfied with the quality of our life and the repeating unhappiness causing patterns we are caught up in, we are functioning. We are able to live in a way that people around us do not immediately perceive us as actively suffering. We might be recipients of lots of well-meaning advice and we might be highly emotionally dependent on some of the people around us, but we are able to function.

2. The second category is when distress is of such a degree that we are unable to function adequately. The distress actively obstructs activities and we cannot do the things people around us consider normal for them to do.

The degrees of dysfunction in the second category, where we refer to mental distress as an ‘illness’, become clearer as we move away from the starting point. People in the second category may require hospitalisation—sometimes involuntary because they are assessed as dangerous to themselves or others.

In India, issues on involuntary admissions are somewhat murky. Our system is still struggling to incorporate human rights respecting practices. Sometimes, people who have had a mental illness that has put them in the second group feel stigmatised. But that comes from a poor and stereotyped understanding. The reality is that some times when we are emotionally distressed this distress can be of such severity that we are unable to make sense of the world around us and that becomes terrifying. We then need an understanding, safe environment and adequate resources to help us get through that period

There was a time when mental illness was even less adequately understood and lobotomies, electro-shock therapies were routinely prescribed. Now extreme moods, hallucinations, delusions and other thought disorders are usually effectively controlled by medication. For this treatment we go to a psychiatrist. Proper medical treatment provides quick relief from highly distressing, confusing and incomprehensible experiences.

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Psychological treatment here helps us learn to manage and understand our illness so that we are not overwhelmed by it.

Psychiatrists need to answer our questions about side effects of medication and also inform us adequately about diet and other physiological issues relating to our disorder. We particularly need our psychiatrist to make time for our concerns. If you find that your psychiatrist is too busy or intimidating, get yourself a better psychiatrist. This is your life. Ask questions. Read up. Talk to other people who have similar difficulties—check out what is helpful for them so that you are actively engaged in helping yourself feel better.

If you have chosen psychological treatment then you will need to find someone who is well trained to provide it. Usually, in India, clinical psychologists, psychiatric social workers, psychotherapists, psychoanalysts and counsellors undertake this treatment because this is their area of expertise. However, some psychiatrists also specialise in this area. But beware of untrained psychological treatment providers!

The goal of any kind of psychological treatment is to help clients learn how to help themselves, to feel more in-charge of their lives and to move towards greater mental health. It is always a good idea to be clear about the kind of psychological treatment you are going for. Again, ask questions.

Psychotherapy is a popular form of psychological treatment. Training here requires that the MHP is intensively supervised in providing psychotherapy for at least two years. Please ask questions about your psychotherapist’s training, orientation, years of experience. Do ask other clients about their experiences with that psychotherapist.

Psychotherapy is a relationship based psychological treatment where clear rules for relating allow for a professional, safe and non-exploitative relationship, where clients can explore their lives and the elements they wish to change within it. Committing yourself to psychotherapy is an important step because this is a slow laborious process. Particularly, because psychotherapy involves an intensive, emotionally charged relationship, it is important that we engage the services of a MHP we can trust and with whom we have established a good rapport. An effective therapeutic relationship provides the opportunity for honest processing. Do make sure that your MHP understands and respects confidentiality.

Unfortunately, psychotherapy is often confused with giving common sense advice. This is particularly incorrect. Psychotherapy involves a personal exploration of self and the psychotherapist walks with us, never leading the way. Intrinsic to good mental health is the capacity to make one’s own decisions as well as the maturity to live with the consequences of those decisions. Even with individuals who have had a serious mental illness, we find that the more we encourage them to take responsibility for themselves the better they do. The goal in any kind of mental health treatment is to help people improve the quality of their life and to work towards their doing so in the most efficient way possible.

Dr Sadhana Vohra is a clinical psychologist in private practise in New Delhi and is editor of ‘The Journal’ of Psychological Foundations, New Delhi. She can be contacted at sadhanavohra@vsnl.com

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The Workman and Mental Illness

Maharukh Adenwalla

The Bombay High Court upheld an order passed by the Central Government Industrial Tribunal [CGIT] reinstating a workman who was unable to attend work due to depression.

The workman had been working as a peon with a well-known private bank since 12th August 1986. The workman did not attend work from 3rd March 1992 to 11th May 1993 as he was suffering from depression and required treatment. The workman underwent treatment in Sindhudurg where his family resided. The workman produced a medical certificate dated 20th May 1993 indicating his fitness to resume duties, but the said Bank refused to take him back. The workman pleaded reasonable justification for his absence but to no avail.

Due to the inconsiderate attitude of the Bank, the workman was compelled to take recourse to legal proceedings. CGIT held the termination of the services of the workman as not legal and justified. It was further held that the workman was not suffering from any recurring illness and the earlier ailment of

Judgement Watch

mental stress from which he was suffering has been cured. The Bank carried the matter to the High Court by filing Writ Petition No. 1068 of 1997. The High Court directed that the workman "be examined by psychiatrist – doctor of the choice of the Petitioner to find out about his mental condition." The workman was accordingly medically examined by a psychiatrist and the result of the medical examination denotes that "the employee was administered selected psychological tests and it was found that employee was not suffering from any mental disorder at present, and he was provisionally fit to resume duties as a peon."

The workman’s services were terminated on 25th August 1993, and the Order of reinstatement was passed by CGIT on 25th March 1997. The High Court confirmed the Order of CGIT on 12th August 1997. Four years of the workman’s life were wasted. Fortunately, the CGIT directed the Bank to pay the workman his wages from date of termination till reinstatement with other consequential benefits.

"Ill-health" as used in the Industrial Disputes Act is dealt with by the Supreme Court in Anand Bihari & Ors. vs. Rajasthan State Road Transport Corporation & Anr. [1991 1 CLR SC 525]. The law on this point is that the workman should be able to efficiently perform the work entrusted to him. An employee cannot be removed from his job because of an illness, it should be proved that the illness interferes with his job performance.

Maharukh Adenwalla is a human rights lawyer working with the India Center for Human Rights, Mumbai. She is a part of the Human Rights Law Network and can be contacted at maharukhaden@yahoo.com

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Hai koi pagal?’ - Disabled Census 2001

Shefalee Vasudev

Nayantara Makhija, a vaastu consultant in Delhi, had family friends visiting her on a cold Saturday evening in February when the doorbell rang insistently. It was an impatient enumerator, knocking for statistics for the Census of India 2001.

Tick, tick, tick, no tick, applicable, not applicable… so on and so forth went the enumerator, brisk and distant in his approach. Ever since he had stepped into that crowded drawing room, he had been staring at one of Nayantara’s guests, a young man, who looked "strangely lost" and was "behaving funnily", with jerky movements. Halfway through, the enumerator looked up and pointing to the "differently behaved" youth, asked, "Iske alawa, koi aur pagal hai aapke ghar mein?" ("Is anybody else mad in your house, besides him?").

"Multiple blows of shame and embarrassment rained on me," recollects Nayantara. Jayant, the 26-year-old boy in question had developed mental impairment and subsequent retarded intellectual functioning. At age 4, when he was suffering from severe typhoid, he had sustained brain injury falling off his cot.

What should one say about the enumerator’s insensitivity? Should he be reprimanded for his callous questioning, or, should he be praised for making enquiries about a disabled person, since many enumerators were not even bothering to find out whether a family had a disabled member or not? In a country where such gigantic demographic exercises raise heat and dust only in debates, even the impact of these debates has become debatable.

In the very first Census of 1871, the physically and mentally disabled had been considered as a separate category, even though in those days, they were either confined to asylums or exiled out of society. Later on, when the British government trashed this disability clause after the 1931Census, there was a

huge void, which placed an entire population, their rehabilitation, education and employment, in suspense. These remained theoretical issues, since no one knew what to do for people who lacked definition because of their special needs.

Mental disability found a place in the enumeration after decades of psychosocial neglect by omission on the part of the Indian government. The print media did its bit before the decennial exercise kicked off. There were extensive reports, on the inclusion of Disability as a demographic category for the Census 2001. Garimella Subramaniam’s article Don’t The Disabled Count? (The Hindu, November 12, 2000) was a sensitively reported piece talking about the approach and questionnaire that would include the enumeration of the disabled under the five umbrella categories.

After the Census, the articles, posers and debates started abating. That the enumeration of the disabled was dissatisfactory was talked about. But it was not emphasized half as much as the inclusion of disability had been. Kanak Hirani’s report (The Times of India, 29th March 2001, Bangalore Edn.) even gave names of the homes for the mentally challenged, which were never visited by the enumerators. Imagine the reports that were never filed about the exclusion. Imagine the numbers of families and individuals who never went up to well-meaning NGOs or government bodies nor admit to "brisk but impatient" enumerators to say that yes, there is a disabled person amongst us.

We live in unsure suspension thanks to pseudo-education. Where are the sections of the print media exclusively devoted to sensitisation about mental disability? Till today, most of the work done in the name of the "cause of the disabled" sees mental illness as a health issue (if at all). Not as a human rights issue.

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How many of us who don’t work within the mental health sector know the difference between cerebral palsy and schizophrenia? Our automatic social reactions to the mentally challenged are defensive. We defend ourselves, not them. We either panic, or sympathize, or stare, or immediately start counting our blessings. The very fact that we react strongly, almost every time we interact with a mentally challenged person is proof enough that our education and empathy for the mentally disabled is not half as that for the physically disabled.

Psychiatric disorders maybe genetic, accidental or trauma-inflicted but psychological ‘dis-ease’, is oh, so common. The media, instead of teaching us interacting techniques with the psychologically upset or the mentally challenged, keeps harping on either "candle making and block printing" endeavours of the mentally challenged in special schools. Or, at the other end of the spectrum, quotes therapist so and so, psychologist so and so, counselor, and psychiatrist so and so to explain every mood swing of person, place or situation. Mental disability is either a "technical matter to be defined" or "a too sensitive subject". Handle with care.

In between oscillates a real world- a world where a portion of the population need commendable responses, rehabilitation, rights and rethinking. Had the lobbying for the rights of the mentally challenged been stronger, the pre-Census preparation of the enumerators would have addressed the ethical concerns involved in information gathering. And the post-Census debates on the enumeration of disability wouldn’t have been so damp.

Conspicuous by its near-total absence in the campaign for helping count the disabled, during the Census 2001, was the Union Ministry of Family Welfare and Social Empowerment and its counterparts in the States. Having to contend with inaccurate data for many decades and having been in some ways instrumental in the inclusion of disabilities in the 2001 Census, the Ministry should have been at the forefront to raise public awareness on the need to disclose disability-related information. It wasn’t.

Mental disability with all its attendant stigmatization and complicating ethical issues led to at least one casualty. It made the Census 2001 disabled.

Shefalee Vasudev is a television producer, scriptwriter and anchor, with 10 years of background in print journalism.
Email- shefaleevasudev@yahoo.com

aaina forthcoming issues

We have had a wonderful response to the first issue of aaina, thank you all!!

We have had many queries regarding subscriptions. Our honest answer to this is that we are trying out aaina experimentally for a year (3 Issues) to see if it is viable as an idea. Until the next issue, then, we are circulating it on our own initiative and using our own resources. Of course its viability depends on your interest and enthusiasm.

We are still awaiting news, views, opinions and articles on ‘Mental Health or Psychiatric Disability’, an issue that we hope will throw light on treating mental health difficulties in disability terms. We know that many of you out there are actively linking up with the disability movement, so do write right away.

As forthcoming themes, we offer the following and invite contributions:

- Money Matters in Mental Health Care
- Social Attitudes to Psychiatric Disability
- Self-Help and Emotional Healing
- Carer’s Concerns in Mental Health

Other than the theme articles we do offer regular columns- speaking our minds, images, media desk, reviews and reports, spotlight, post-it, reflections, judgment watch and advocacy news. We have a lasting interest of course in polling opinions and propagating activism around institutional reform, ECT and psychopharmacy.

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I opened the door. Immediately, two burly men in police uniforms overpowered me. The MSW whispered in a voice palpably radiating joy: ‘So, you think you are Mr. Know All.’ I was bundled into the car and driven off to a government psychiatric facility. A long and unending night of torture in the name of treatment awaited me."

I am a ‘cured schizophrenic’ whatever it may mean. My history of involuntary hospitalizations started in 1995. Back then I suffered aberration of thought, punctuated by prolonged periods of ‘normal’ thought process. Often both the phases went hand in hand. I would fight my psychosis and be normal like million others.

Once I imagined I was the most powerful man, commanding the entire global politics. I was the President of America, the Pope and President Boris Yeltsin on different days. I imagined that the world was out to knock me off, my parents had initiated a global conspiracy against me, the CID was out to dispose me off, and that my mother was poisoning my food. This psychotic phase lasted over four years.

Initially, my parents consulted a renowned psychologist. I refused to talk to him. Now I realize what a big mistake it was. Had I agreed I would have been left off after a few sessions of psychoanalysis, possibly with a label of ‘mentally ill’ but without lifelong drug treatment. My psychosis continued punctuated with normal thought process. I was forcibly taken to a well-known senior psychiatrist who retired as the head of a prestigious medical research institute near Delhi. His diagnosis: CLINICAL DEPRESSION. I was prescribed PROZAC. I refused.

I believe that through introspection and analysis, one can overcome this aberrant thought process. Medicines can never be the answer. Give a thought to whether what is happening is true. For example: How is it possible that if you are President Clinton, you are still in India? I did just that. I told myself, if I

am in India and jobless and struggling, I couldn’t be President Clinton.

In 1997, it happened. I was pleading with my mother to let me go to Delhi. At that time I was 32, still jobless, though writing as a freelance journalist. The travel money had to come from my mother. She told me that we would talk about it in the morning. I went to my room and started reading Lu Hsun’s short stories.

In the morning it happened. I had a premonition when I heard a sharp rap on my door at 7’o clock. I opened the door. Immediately, two burly men dressed in police uniforms overpowered me. The third (a medical social worker) whispered to me in a voice palpably radiating joy: "So, you think you are Mr. Know all." I was not allowed to go to either the WC or dress up but immediately bundled into the car and driven off to a government psychiatric facility. A long and unending night of torture in the name of treatment awaited me.

I had read what Stalin did to political dissidents in former Soviet Union and what Hitler did to Jews and Gypsies. Most were shot. Many were incarcerated in psychiatric lockups and injected with crippling anti-psychotic drugs until they could take no more. I already knew about the inglorious history of psychiatry.

The story I was forced to tell these psychiatrists was the same that I had earlier told. But strangely, these psychiatrists gave me a diagnosis of SCHIZOHRENIA. I repeatedly told them that though I might be under an episode of psychosis I am not in need of either medicines or involuntary hospitalization. No one listened to me.

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I was in the psychiatric ward for 13 days and put on 5mg Espazine, 2mg Larpose and 2mg Pacitane. I was discharged after being told to continue medication for 4 months. I suffered such horrendous side effects that I discontinued the medicines as well as OPD.

Subsequently I received letters from the hospital MSW to the effect that if I discontinue my treatment for SCHIZOPHRENIA I would end up worse than before. Fortunately, my mother didn’t force me to visit the psychiatrists. Instead, I was told to see the psychologist who concluded that I was suffering from PSYCHOTIC NEUROSES!! The psychologist told me that I would be all right in a few sessions but I refused counselling.

My psychotic phase continued, and with that, the fights with my parents. In 1998, I was institutionalized for a fortnight and put on 2mg of RISPERIDONE. I discontinued the medication after 3 months. I was staying in Delhi on my own and managing my affairs quite well. I also traveled in the US and was doing fine. In 1999, my parents discovered that I was not taking medicines. My father came over to Delhi with the hospital police and forcibly re-admitted me. I was forced to continue with RISPERIDONE in the hospital. I discontinued after a month. 

After the first hospitalization, the subsequent ones have all been on ground of non-compliance. The issue was not whether I was psychotic or not but that I had stopped taking the medicine. I have stopped medication for two reasons. Firstly, I believe that even if one is suffering from a mental ailment as serious as ‘schizophrenia’, medicines

are not the cure. Secondly, I have discontinued the medicines because these have severe and highly discomforting side effects. I suffered from slurred speech, prolonged constipation,tardive dyskinesia, akinesia (slowness of movement of limbs and hands), salivation, difficulty in passing urine and a dozen other grave side effects.

In August 2000 I was again forcibly readmitted and discharged after 2-1/2 months. I had been staying in Delhi alone, cooking, washing my clothes, going to the library for reading, interacting with people and doing activities, which a ‘schizophrenic’ is supposed to find difficult to do. My medicine was changed to 20mg OLANZAPINE. In addition, I was given 50mg of Haloperidol I/M for four months continuously before it was discontinued. If earlier I had the responsibility of taking the medicine, this time that option has been withdrawn from me. My parents are giving me medicine under the strictest supervision. I am not allowed to travel outside my city. I was not able to go for my honeymoon when I got married. My freedom is compromised in addition to suffering from untold misery because of the anti-psychotic medicines.

The identity of the writer and other personal details pointing to hospitalization and treatment have been masked at the request of the writer.

Picture by Shilpa

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guest column

Good Practice in Child Sexual Abuse (CSA) Interventions

Dr Shekhar Seshadri

• Establishing that abuse has occurred (What is the context of intervention? Is abuse the direct context because of disclosure / discovery or is the presenting context some behavioural, emotional or academic problem?)
• Establishing the nature and extent of abuse
• Establishing medical issues
• Establishing psychological issues
• Establishing family, social, safety issues
• Establishing legal issues
• Carrying out medical interventions
• Carrying out psychological interventions
• Carrying out family and social interventions
• Carrying out legal interventions where indicated
• And PREPARING THE CHILD FOR EACH OF THESE PHASES.

In a scenario where sexuality is relegated out of mainstream discourse in communities, what language does a confused child have to disclose abuse? Does good practice therefore start at creating a culture of discourse and disclosure with children? It is important to have a comprehensive list of good practice parameters across all phases of interventions. For example there is an entire list of recommended parameters for legal interventions including in-camera trials, special interview techniques for younger kids, issues of legal reform and so on. How can you expect a child to depose in great detail, in exact sequence, all the experiences gone through without losing equanimity in the presence of the perpetrator and aggressive questioning to undermine the child’s testimony? That too in a court atmosphere that is not exactly child friendly! Even adults cannot manage this well. Hence activists are talking about child protective trial atmosphere and procedures. These procedures by themselves are extensively documented.

What can we say about good practice in CSA interventions-

- THAT all people in sectors that deal with kids (teachers, families, doctors, paediatricians, gynaecologists, mental health professionals, police and judiciary, media) should first of all believe that CSA exists. If one disbelieves, is uncomfortable, or thinks ‘this is a western phenomenon’, then the child will not be believed.

- THAT the dividing line between sexual misbehaviour, sexual harassment, sexual abuse and sexual violence is not all that sharply defined. Hence it is bad practice to say, ‘After all he did not rape you...".

- THAT all interventionists must make a habit of CSA enquiry and skill themselves in sensitive questioning as indeed in fighting all aspects of social conditioning that compel people to interpret their abuse in self damaging ways

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An opportunity to improve hospital conditions in Maharashtra came in 1989 when the Bombay High Court appointed the Mahajan Committee to look into the affairs of the Mental Hospital, Yerawada, Pune.
I was invited to become a member of this committee.
I was the only member who was connected very closely with patients in the hospital. Even though the committee was doing an excellent job about gathering facts of the facilities it was not inquiring into the quality of services. The fact of patients as human beings was left out. Their psychosocial needs of freedom, recreation, occupation, contact with dear and near ones, and cordial relations with the staff were neglected. The committee submitted its report to the High Court in August 1989, giving 68 recommendations. My separate report, highlighting patients’ needs as well as the failure of the social service department, was not included on grounds that it was submitted ‘late’! The High court in its judgment No. 1989 directed the Government to implement the same.

An analysis of the 68 recommendations shows that in fact there are only 52. 16 were repeated and 4 were regarding an NGO. Of the remaining, 2 are about building repairs, 4 about new constructions and creation of new posts. 10 are about training programs for staff. About 20 lay down procedures for doctors and hospital authorities. The remaining are about the physical well being of patients, written in an impersonal way.

Recommendations 1 and 35 refer to the improvement of the environmental conditions. The recommendation states "the patients should be kept in more humane and pleasing environment, wherein

they can live with dignity as human beings". Since no explicit parameters were used to define the term "humane environment" its interpretation was left to authorities. The authorities interpreted it in the physical sense leading to repairs and maintenance of roads, cleaning and refurbishing the open spaces in front of the wards, external painting and planting and maintenance of gardens. The insides of the wards where patients spend all their waking and sleeping hours remained as neglected as ever.

The remaining recommendations, which deal with provision of essential amenities to the patients and make no reference to their psychosocial needs, are as follows:

• Drinking water and toilet facilities inside the wards

• Keeping the bathrooms and lavatories free of odour

• Provision of cots, mattresses and linen to patients

• Clean clothing for patients

• Providing soap and towels and ensuring daily bath of patients

• Hygiene and cleanliness within the wards, including pest control

• Providing mugs to patients for taking milk or other liquid food

• Improving the quality and quantity of food

• No patient should be asked to do menial work

• No patient should be subjected to cruelty

• Modified ECT should be used.

The High Court on 10th November 1989 desired the Board of Visitors at the Mental hospital to "monitor" the implementation of the recommendations.

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Curiously enough the Board of Visitors was kept completely in the dark about the charge upon them. There is no reference to the "monitoring" of implementation of recommendations in the Visitor’s Book right from 1989 to 1993. A Standing Committee headed by a State Program Officer had been constituted to monitor the implementation of our recommendations (Indian Express Report, Bombay, 7th May, 1990). The superintendents of all 4 mental hospitals in Maharashtra were its members. Upon inquiry I learnt this committee was a non-starter. On 13th September 1993 a special committee was appointed by the Government to "evaluate" the implementation. The Committee visited the mental hospital on January 4th 1994 and reported that most of the recommendations were implemented! The report of the District Judge following a writ petition in 1995 however depicted a different picture.

The long and short of it is that nothing was gained by the High Court’s appointing a committee so far as the welfare of the mental patients is concerned. We are back to square one. Serious and concerted efforts must be made to bring relief to the suffering humanity within the mental hospital. This is true not just with regard to the mental hospital at Yerawada but of the 50 mental hospitals around the country.

Ms Malathi Ranade, retired, was the first Psychiatric Social Worker to be appointed at Yerawada mental hospital, Pune. She filed writs demanding implementation of the MC report. In 1998 the file was disposed off. Thank you, Dr. Amita Dhanda, for putting us in touch with her. And thank you, Maharukh Adenwalla for news about the Committee.

Very many thanks for sending the first copy of aaina to our organization ‘Kiranh’. Many self help groups of care givers who recently assembled at Chennai welcomed the issue and praised it. The article "Mediating mental health" is well thought out, a lesson for reporters. If any such reporting is there, we should immediately react through letters to the Editor so people at large come to know the real facts. The use of mental illness in film was an equally good article. Shri Anil Vartak’s poem is indeed heart warming and I wish that our brothers and sisters be bestowed with such wonderful insight.

The use of ECT is a controversial issue. The subject is to be seen from both sides. Outright condemnation more so by persons other than the consumers or doctors is not proper. Sometimes it is inevitable but sometimes it is used commercially and put on display as a wonder treatment, whereas it is

only very temporary. The case of Ms. Gita Ramaswamy is very unfortunate. It is the stigma, which makes the case so big. Had it been any other sickness, which was not treated properly, will people shout from rooftops? Let us have an opinion from the consumers. Wishing all success, I remain,

Yours sincerely

PN Krishnan
Secretary, Kiranh
10/1 Greenfields
Ghatla Village Marg
Chembur, Mumbai – 71
India
T: 0091-22-555 6955

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Researching Mental Illness- Ethical Issues

Tejal Barai

Our society does not have uniform standards to understand or acknowledge needs and rights of individuals. An individual who has suffered physical disability as a result of an accident has ‘legitimate’ reasons to be depressed. But those with no ‘visible’ reasons to be depressed are marginalized, and looked down upon. Such standards not only leave persons with psychiatric disabilities amongst the least understood, but also amongst the most vulnerable, not only as individuals in society, but also, vis a vis research. This vulnerability and some of its consequences is something that I attempt to bring out in this brief article.

The primary attributes, that of compassion, concern, responsiveness and sensitivity in various contexts of research take on a different character and meaning in research involving individuals suffering from mental illness. Guidelines and principles of autonomy, competency, informed consent, amongst others, take on a different significance as a result of their greater depth and wider scope. I seek to explain this by means of an illustration of a real participant.

A volunteer for a study, who suffers from chronic anxiety and depression, agreed to participate with the hope of gaining some relief, and thus benefit, from the medication to be tested. (His regular medication had stopped helping him). He was handed over details of the study and the consent form in a casual manner. The participation aggravated his condition and he felt like committing

suicide on two different occasions. Unknown to him, the study in fact involved taking him off medication altogether. The purpose of the study was to observe the progress of illness when patients relapsed. The rationales provided by the researchers was that it would have helped in understanding progress of the illness thereby helping patient needs in terms of future medication, as well as understand mental disorders (Report, New York Times, May 19, 1998).

In this example, was the patient – participant in the frame of mind to have ‘voluntarily’ consented to participation in the study? Would he have participated in the study had he known the real objectives of the study? Would he have participated had he been explicitly told that there were no real benefits for him, and on the contrary, his original medication would have to be discontinued, thereby possibly causing him harm? Does not the fact that the researchers only casually handed over information, not clarifying any of the above, amount to deception? Isn’t allowing the participant to assume that there would be immediate benefits an indirect form of inducement? These are all serious lapses in the informed consent procedure.

Considering the fact that the participant was suffering from a mental illness, a lapse such as the above even impinges on his autonomy to decide on participation. It is also necessary to evaluate the competence of the participant (and others) to

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comprehend the details of the study and give consent, on the basis of the nature and stage of mental illness, especially since the participant is already biased towards participation.

Moreover, can such a study be permissible even if all the above are considered and addressed? Thus we come to the rationale of the study. Is not the fact that the participant had become suicidal, as a result of the severe relapse, a consequence of participation, too large a cost to pay for studying the progress of the disease? What also might have been the end point of the study- death, by suicide of a participant?

An Institutional Ethics Committee reviewing the above study would have the responsibility of not only addressing the above ethical issues, but also more. The following are the minimum that need to be addressed by not just the ethics committee, but also applied by the researchers, and only when these are satisfactorily answered, should such a study progress:

1. Does the study have justification enough?
2. What information is to be given to the participants? Are they being told about the actual nature of the study? Are they being informed about the fact that they would in fact be taken off medication? Are they being told that there are no real immediate and direct benefits to them?
3. How is information being conveyed to them? Have they been explained fully and patiently, before seeking consent? It is the responsibility of the research team to see to it that the participants comprehend the