A new law that only hears select voices

The mentally ill are one of the country’s most disadvantaged groups. There’s little support for them, institutional or otherwise, and things look like going further downhill if the process of amending the Mental Health Act of 1987 is any indication.

Dr Achal Bhagat is a worried man. The consulting psychiatrist at Apollo Hospitals, Delhi and founder of Saarthak, an NGO working with the mental ill, has just read the first draft. “I never thought I would defend the existing act but some sections of the draft are retrogressive to say the least.” But what worries him more is that the draft doesn’t include the voices of the people who will be directly affected. “Less than 100 people in the country even know that such a process in underway,” he says.

How so? The decision to amend the act was taken in a meeting in January which included a few mental health professionals. At the end Dr Soumitra Pathare, a private psychiatrist was asked to take the lead in preparing a draft. That was done by February 28 and appears to be circulating among a slightly larger group for feedback.

Bhagat filed an RTI application with the Ministry of Health and Family Welfare. “I had asked 10 questions related to the process. The response was one line: the amendment process is on and the minutes of this January meeting were attached,” he says. The draft is not on the ministry’s website.

“The mentally ill are a neglected group. We have written to the health minister asking for a better process.” It is essential to spread awareness of these laws, he says.

Down south in Bangalore, Nirmala Srinivasan of Action for the Mentally Ill (ACMI) disagrees. “We have been waiting for this for such a long time. It is in the preliminary stages right now and soon the draft will be in the public sphere

for comments.”

Bhagat wants all voices to be heard in this process. “About 10 per cent of the people in this country will be affected. The discussion needs to be widened beyond a few psychiatrists and NGOs,” he says.

“The response from the government has been that they will have regional consultations but just 20 people here and there is not enough. How many people know about the UNCRPD?”

Bhargavi Davar, of the Bapu Trust in Pune, also feels strongly. “We are upset at the lack of participation.

The government seems to have outsourced to a private psychiatrist, when commercial interests could be served,” she says.

“When you read the draft, what they propose makes private mental hospitals commercially viable. As a survivor, it is my dream to see mental hospitals go

in my lifetime. The world over people are looking at community recovery centres as the alternative,” she points out. “The draft dismantles the role of the judiciary and puts all the power of arbitration in the hands of private psychiatrists.”

Srinivasan strongly disagrees. “It is indeed a challenge to amend the Mental Health Act to deal with the paradigm shift that the UNCRPD represents but I think the first draft has achieved 60 to 70 per cent of this,” she says.

Shalini Prasad, joint secretary, Ministry of Health and Family Welfare said the initial draft was more a working paper. “We will not rush into anything without further consultation,” she assures.

Javed Abidi, a disability rights activist, says, “This thesis that persons with mental illness cannot speak for themselves is an excuse given by psychiatrists and care givers. So the psychiatrists have represented themselves are the guardian angels of the sector. But the time has come for psychiatrists, and parents to take a back seat and allow the person with mental illness to come forward and speak their mind.”

Dark shadows on the mind

Dark shadows on the mind

How Punitha survives a daily battle with an illness she now understands

Punitha Suresh was in her late teens when she and her siblings noticed their mother beginn ing to behave stra­ngely. “She said she heard voices, and would talk to herself, almost like she was in her own world,” she recalls. The period was one of transition. Their father was abroad working, so the family shifted from Erode to Hyderabad, where Punitha’s grandmother lived. Three months after the move each had gone their own way — Punitha and her sister were married, her brother and younger sister were away studying — angry at what they thought was their mother’s disinterest in their lives. They did not know she suffered from schizophrenia.

Three months later, she attempted suicide and died days later in a hospital the age of 46. “We deeply regret it now, our lack of understanding and support for her. We had heard she was seeing a psychiatrist, but at that time we did not know she had an illness,” Punitha says.

She knows better than any of her siblings what her mother was going through. A year after her daughter was born, Punitha had a psychotic breakdown, diagnosed as schizophrenia, beginning a decade-long battle with illness.

“My husband is a musician and worked late nights. Around that time, a friend of ours died in a road accident. His death really upset me and now I see that as the trigger,” she says.

The incident left her with a strong fear for her husband’s safety. “I would wait up and worry, obsessively, whether he had met with an accident, until he returned home.”
Soon, the fear became all-consuming. She couldn’t sleep, handle household chores or look after her daughter. “I met a psychiatrist who prescribed a sedative, but my father and husband advised me against taking the medicines and threw the pills away.”
As she spent more and more sleepless nights and her behaviour changed drastically. “I star ted having delusions, and a strong belief in god. I would visit the neighbours and make predictions about their future, offer food to a deity and eat it off the ground. My husband noticed I wasn’t sleeping in the same room as the baby and he became concerned.”

She refused to see a psychiatrist. Eventually her husband, with the help of neighbours lured her to hospital where she was given ECT — popularly known as shock treatment. “I don’t know if it was given with anaesthesia. I don’t remember much of that period actually, after the ECT.”

The psychiatrist diagnosed schizophrenia. “I was scared because of my mother’s history. I had always hated medicines, so now I was scared of the medicines as well. I hated my illness, I hated the label, I hated what it had done to my mother.” Worse was returning home, to find people treating her differently and teasing her.
Two years later she faced her first relapse. “The doctor said I was cured and could stop the med ication. But within months, my behaviour changed again.” Today, she recognises initial signs of relapse: “I stop sleeping, I become argumentative, and a little aggressive. I realised something was wrong, after an argument with a ticket examiner on a train. I went home and asked my husband to admit me for treatment.”
However, she refused to accept that she had relapsed. “I refused to undergo tests, and demanded only sedatives. Eventually I ran away from hospital. My husband later tracked me down.”

Then began years of meeting different psychiatrists, trying different medications with varying degrees of success. “One year of my life went in visiting doctors. Each would prescribe some medication, which would have terrible side effects and we would try another doctor next.”

Finally, they found a doctor and a treatment that worked. But Punitha still hadn’t come to terms with her illness. So a few years later, when her husband and she were having marital problems, she discontinued her medication instead of talking it out.
So, Punitha fled to the Divine Retreat Centre in Kerala’s Chala kkudy, to convert to Christianity. “I was running a boutique at the time, but I was becoming argume ntative, was energetic but wasn’t sleeping. Finally, at Chalakkudy, I was taken into police custody and brought back to Chennai but I refused to see the doctor.”
She had to be physically taken away by police, and forcibly admitted to a private facility. “They were male policemen. They took me away in front of all my neighbours and my daughter.”

Again, she was given ECT, which makes her recollection somewhat hazy. “I was put in a rehab home for almost three months with no visitors, no access to phones, no contact with the outside world. I was terrified that I might end up there forever and my husband and everyone else would forget about me.”

“I felt so helpless. I couldn’t see my daughter. Finally I realised I needed to be treated and get better. I became a different person. I started attending a daycare centre, then worked as a teacher. Later I was an IT consultant.”
But she was filled with a strong need to find and meet others like her, survivors of mental illness. “I put out an ad in the paper, asking for people to get in touch but only caregivers contacted me — more to ask for information. I couldn’t meet other survivors.”

Punitha is still trying, though. Her pursuit led her to The Banyan, an NGO working with the homeless mentally ill. She now coordinates efforts at its daycare centre and contributes to advocacy initiatives. “This gives me happiness, working with people like me,” she says. “When someone is struggling, I can share my experience and help them get better. Something I wish I had had when I was first diagnosed.”
She is acutely aware of what the system lacks. “Hospitals would benefit from survivors to counsel patients. It would have made a great difference to me if a survivor had told me things would be better, that it was possible to live with the illness.

“Also, I understand that sometimes it may be necessary to admit someone without their consent, but why should the police make that contact? Can’t a social worker be involved? Why should a person be taken away like a criminal when others with a health problem get the dignity of an ambulance? Isn’t mental illness also a health problem?”


No hope if the doctors don’t rate you high enough

Twenty years ago, a friend took me into the IMH (Institute of Mental Health, Chennai). The first thing I saw was people locked up, and warders walking around with sticks. They said they needed the sticks in case the patients got violent,” K Chidambaram says, to explain why, when his daughter Uma was diagnosed with schizophrenia, he didn’t take her there for free treatment and medication, even when private care only added to the financial burden of a painter with four daughters.

“We first knew something was wrong when we noticed her pretending to write when she never went to school. And her behaviour changed. She adored her younger sisters – she had practically raised them. But suddenly she started fighting with them, and was unable to get along. She would sit by the stove and claim she felt cold,” he says. This was in 2002. “My wife believed she was possessed so we took her for faith healing but my heart wasn’t in it.”

A friend suggested they take her to a psychiatrist, and in spite of the family’s low income — he was the only earning member — they visited a private clinic.
“We were asked to admit her for a week. I was asked to stay away because my presence was upsetting her. They said it would cost at least Rs 5,000 but made some concessions for us. We had to borrow heavily for the treatment.”
Uma was administered ECT — “We didn’t know anything then, so I have no idea if anaesthesia was given” — and prescribed medications. She was better when discharged. The family shelled out Rs 1,000 every month for medication; after all psychiatric pills are expensive and the state-run facility inspired no confidence. In 2003, Uma got married to a labourer who turned out to have a drinking problem. She had her second child by the end of 2004.

“She is very attached to the children. But her husband recently started complaining about her behaviour. He called her ‘mental’, when he knew from the start about her illness.”

The causes for complaints were: her suspicious attitude, reluctance to mingle with his family and tendency to pick fights with the neighbours. “He avoided being involved in her treatment but at least he did not convince her to stop the medication,” Chidambaram said. The recent troubles, however, took root in his drinking and physically abusive behaviour. Also her mother-in-law began floating the idea of having her committed at IMH.

“I brought her and the children home. She loves her husband and has been bugging me to call him, but we told her we should wait for him to come for her,” he says. “But we will take care of her as long as we are there. I fear for her once we are gone,” he adds.

In the past three years or so, Chidambaram has left his profession to become a community health worker with an NGO working with mental health. He is a member of a support group for caregivers as well. He has succeeded in getting his daughter a disability certificate (no mean task) but she can avail of no benefits. “You see, when the doctors see her, they say she looks fine, so they have marked her disability level as 12 per cent. Only if your disability is more than 60 per cent can you avail of benefits. She may look fine, but she has no support system or security once we are gone. Her husband could abandon her. I don’t want her to end up on the streets.” That is a constant fear that the families of many mental patients have to live with. Given the facts, there is at the moment little hope for you if you are mentally ill and poor. It’s like being in a black hole where no one will hear you scream. And if they do it might be worse than being unheard altogether.

A treatment that leaves more scars than it heals

Ishwar (name changed) is friendly enough to begin with. Lanky, and articulate, the only thing off about his appearance is the cast on his right hand. As the conversation shifts from his love of music to his childhood, he is less cheerful, veering towards rage. For some childhood may recall happier times, for Ishwar it marks the beginning of his struggle with an illness that has marred his life.
“We were living in Sikkim and there was this girl I was crazy about. But when I asked her out she dismissed my love. She said she had a boyfriend, and called me mad. In front of so many people!” He begins to sound more agitated. His mother and grandmother smile nervously but Ishwar needs to vent.

“I started living in a fantasy world. I would pretend I was a singer and that we were toge ther. Then I started behaving like I was mad to gain her sympathy but my mother took it seriously and took me to a psychiatrist who said I was mentally ill.” Ishwar says he was then admitted to a facility and given ECT. The medications affected his behaviour. His life changed. And he blames his mother, Sheela.
Sheela herself struggled with mental illness after a nervous breakdown immediately after school. “I couldn’t do anything, even walk without assistance,” she recalls. She was admitted to a facility in Lucknow, but the experience scared her. “The medicines had strange side effects.” She left in three months with a diagnosis of manic depression. She stayed on the medication, and still young, married a Tamil man 12 years her senior.

“I struggled with the illness for 15 years. I made my husband’s life hell,” she says. One year into the marriage, she found, to her dismay, that she was pregnant. “I wanted to abort the child because I was terrified he would be born with my illness. The doctors and my family wouldn’t let me. When Ishwar was born, I was so happy,” she smiles. Her husband died when Ishwar was still young.

Ishwar is now 37 and as he starts pacing the living room in anger, we return to the current cause for his rage. Sheela has taken him from one psychiatrist to another, from Sikkim, to Vellore, to NIMHANS in Bangalore, and finally Chennai. Each doctor has varied the treatment, the diagnosis, and left Ishwar with two deep-rooted fears: of ECT and of being admitted against his will. While the latter has happened only three times, the most recent has left him with scars. Literally.
In January, Ishwar was admitted to a private nursing home. Sheela says she wasn’t allowed to meet him for three weeks. When she did, he complained of pain in his chest and hand. “I didn’t believe him. I thought he was just saying that to get out of there. But when he came out we checked with a doctor. The X-rays showed broken ribs and a broken wrist.” Ishwar says he was beaten by the staff with cricket bats, for asking for a plate.

And so for the first time in more than 20 years of living with mental illness (hers and her son’s) she came into contact with the legal system — and was shocked. “I didn’t even know there was a mental health act. And while the nursing home was responsive to the complaints, shouldn’t there be better monitoring systems in place? Whatever he does, he is a patient, how can they use force on him?”
Ishwar’s experience has left him more fearful that he might be sent to an institution again. His fear of ECT has mingled with a more recent concern, epileptic fits. “It feels like falling from a high place. I hate the feeling. I can’t do anything,” he complains.

“I hate this life. I want to die! What’s the point? I love driving but I can’t drive because of the fits. I want to go out and meet people but I’m stuck here.” His anger rises. He nearly hits his mother. His language becomes abusive. The frustration is evident.“I’m human too. What kind of a life is this?”

His mother abruptly leaves the house to buy a sedative. His grandmother is upset, but
she’s the only one who can calm him down.At 78, with a few murmured words, she has him willing to relax a little. But her face is drawn, and she apologises and politely
requests me to leave.

Look it talks!

Bonjour mes amis!

After bumming around for more than two years, I have finally decided to return to record my bumming around online.

Some of you may remember my earlier, angst-filled semi-anonymous blog. Those rants have been preserved in a password protected safe space where we can all comfortably forget about it.

Now, a brief update on where I am now, which might hint at what this blog will be about (cos honestly I'm not entirely sure myself): I am yet to recover from the shock of turning 26 (last week, presents are welcome, thankyouverymuch), mainly because I am as spaced out as I was at 21, 16, and 10. Not 8. I was pretty sharp at age 8. I work with The New Indian Express. I write for its Saturday and Sunday magazine sections, and occasionally the daily as well. I write on gender, development, mental health, people, sexuality, and pretty much anything that interests me, that I can convince the will interest humanity at large. I have a dog - Freya - a golden retriever with a bit of cat in her. I no longer live with the pater (the poor man against whom much ranting was recorded in this blog's earlier avatar) and I can drive :-D

Everything else, I guess will come up over the course of the blog.

Ta!

We live in a beautiful world

...Where we have the freedom to eat when we want, pay our own bills or default, go for midnight walks, be cared about without being stifled, where the rules of our childhood don’t apply, where we make our own rules, decide who or what it is we wish to become. The freedom to make a journey. The freedom to choose where to start that journey and who with. The freedom to feel no fear, the freedom to be insecure, the pleasure of being proven right, the privilege of being wrong. A world where ignorance can be acceptable, amusement is paramount, laughter a necessity. Where we constantly battle age, experience, cynicism, and bitterness. Where apathy is institutionalized, where we understand caring to have its constraints, where idealism isn’t spelt with a capital “i”, where we try balance our ambitions with our conscience. Where we believe everything but hold nothing sacrosanct.

We live in a beautiful world where we pet street dogs but a roadside feast for the maggots does not soil our slumber. Where a child curled up within his red and white striped T-shirt on a narrow pavement is another image to be remembered as the eyes of a young boy, straining to hold his tray while men in fine suits brush past him, his burden ignored, his eyes filled with the anguish of the lost, searching for an escape. Trapped eyes, ready to tear. We live in a beautiful world where my response is a smile and a second cup of coffee. Eyes I remember long after my conscience finds rest, my ‘goodness’ is established. My beautiful world where child labour moves me but fails to anger, where what can’t be helped is tolerated. Where no one’s heart bleeds enough or at all. Where empathy is startling, understanding heavy, anger fleeting, niceness the best response. Where looking away is a solution and escape is named self-preservation. Where these words are fragile sounds in my head whose impact is no more permanent than the position of this morning’s clouds.