India’s mentally ill women face twin prejudices

New Delhi: At 49, her face still retains a girlishness but when she speaks, it’s the adult who talks—the words are measured and every thought is completed before the next one is uttered.

She talks of misery with the same smile on her face as when she talks about the joy that the birth of her first child brought. She is painfully thin and unusually calm for someone whose patient-file records her first visit to the hospital as aggressive.

She is sitting at the Institute of Human Behaviour and Allied Sciences (IHBAS) in Delhi, where she has come for one of her regular follow-ups a year after she was discharged from the psychiatric ward. Ask her what had happened, her answer is clear: when you lose control of your life, when nothing seems to work out and there is no hope of any change, your mind starts failing and you lose control of it.

“That is what happened to me and that is what everyone calls becoming pagal (mad),” she says.

She is now clinically stable and asymptomatic, but to her neighbours in east Delhi where she moved two decades ago from Bihar, she is still the woman who was admitted in a pagal-khaana—literally, the madhouse—not once but twice. They keep a safe distance from her.

This is what it means for her: she is not just any person with mental illness, she is a woman with a mental illness, making her doubly vulnerable in a country which is still grappling with the idea of accepting women as equal to men.

This low status means that relatives and police often find it easy to put women in mental institutions without their consent, according to a report put out by non-profit outfit Human Rights Watch on the plight of mentally ill and disabled women in India.

The 104-page study exposes involuntary admissions and arbitrary detentions of women in these facilities, overcrowding and a lack of hygiene, inadequate access to healthcare, forced treatment—including electroconvulsive therapy—as well as physical, verbal and sexual violence.

Last August, the Rajya Sabha passed the Mental Health Care Bill 2013, which provides for protection and promotion of rights of persons with mental illness during the delivery of healthcare in institutions and in the community. Following a Supreme Court request in 1997, the National Human Rights Commission has been regularly inspecting and reviewing the activities of all mental health institutions since 1999.

India also came up with a National Mental Health Policy in 2014 which aims to reduce the treatment gap by providing universal access to mental healthcare through increased funding and human resources.

On paper, everything is in place.

Cosmetic changes

From the time when patients were called lunatics and insane to now, when they are termed mentally ill, the understanding of mental health issues in India appears to have definitely changed. “Lunatic asylums” or pagal-khaanas are called institutions for the mentally ill now.

But as Bhargavi Davar, a mental health activist says, while India has tried to modernize its laws, not much has changed on the ground other than the description of these patients.

“Mental health law has always been penal, depriving people of their liberty and it is still the same. The core of the laws is still involuntary commitment. It is so easy to get away with institutionalizing someone in this country, or labelling them mentally ill,” she says.

In a patriarchal society, women are easily incarcerated for a variety of reasons.

Madness certificates issued by mental health professionals are used by husbands or in-laws to divorce or throw out wives from their matrimonial homes, according to a 2009 research paper published in the Indian Journal of Psychiatry by J.K. Trivedi, a psychiatrist and president of the Indian Psychiatric Society in 2004.

But Saswati Chakraborti, a psychiatric social worker at IHBAS, rejects such criticism. “We work as a team. When a patient comes, he or she is assessed by a multi-disciplinary team, including a psychiatrist, a psychologist and a social worker. Only if the person is unconscious or harming self or others, do we admit them,” she says.

Linked to the deep and widespread inequities marking the socio-economic status of men and women in India, the exposure to and treatment of specific mental health risks are gendered as well. Their illness is not taken seriously and help is sought late and infrequently.

Psychiatric epidemiological data cites a ratio of one woman for every three men attending public health psychiatric outpatients’ clinics in urban India. When a man is mentally ill, since he is conventionally the main earner, his well-being is considered important, something needing immediate treatment.

A woman, whose contribution goes unrecognized, becomes a burden when she is mentally ill because she is thought of as being incapable of the role society thrusts on her—of the primary caregiver. As a result, the mentally ill woman is socially ostracized and abandoned. She is sent back to her parents’ house. If her mother is alive, things can work out. If not, she becomes a burden, an additional mouth to feed. Social disadvantages worsen the biological vulnerability of women.

Rectangular rooms

In these rectangular rooms along the edges of a spacious compound at IHBAS, there are 20 women each. It was in one of these four rooms that the 49-year-old mentioned at the beginning of the story was admitted the second time–when she imagined a Hindu goddess was talking to her. She became aggressive and bit anyone who slept on the same cot as her in their house.

The room is full of women, mostly with close cropped hair to prevent lice; some talk to themselves, others stare out into the distance. There are beds in these tidy rooms, and the corridors are clean but that’s not always the case in other such institutions.

In August last year, pictures from inside a Kolkata-based mental health rights organization hit the social media. The patients—both men and women—were seen sleeping on dirty floors and using filthy toilets. Many of them had not bathed or shaved for months. They had stopped wearing clothes because they were infested with bugs and lice.

There are 60 million Indians who suffer from mental disorders. At the end of 2005, nearly 10-20 million (1-2% of the overall population) people suffered from severe mental disorders such as schizophrenia and bipolar disorder, and nearly 50 million (about 5% of the population) suffered from common mental disorders like depression and anxiety, the government said in Parliament in May 2016.

And yet, India spends 0.06% of its health budget on mental healthcare—less than even countries like Bangladesh (0.44%).

A study of more than 11,000 patients from two hospitals in south India found that depression and somatoform and dissociative disorders were more prevalent in women (Vindhya U., Kiranmayi A. and Vijayalakshmi V., 2001), and that five groups of women were most affected by mental disorders—married women, women in the reproductive age group, unskilled labourers, women with little education and women who were “principally housewives”.

The 49-year-old is a victim of domestic violence and her husband is an alcoholic. She believes her sister-in-law used black magic on her and was the reason both for her husband’s alcoholism and her illness. In the summer of 2011, her abdomen was distended, she was enervated, could not sleep and constantly felt irritated.

Like several women with mental illness, her symptoms were not taken seriously by her family even when the husband kept calling her pagal. A few months and several visits to a tantrik baba (a witch-doctor) later, her son took her to a doctor. It was a physician and she was treated for abdominal pain.

“Abdominal heaviness, fatigue, lethargy, low energy, feeling irritated, sometimes loose, sometimes constipated motions are all symptoms of depression. People don’t realize that most of the nerve supplies are in the brain, followed by the gut. Since they are not aware, patients go to physicians, who in turn aren’t well trained to deal with such cases. Up to 30% of those who go to physicians in public healthcare units have underlying depression. Before visiting a psychiatrist, they visit at least two-three physicians,” says Nand Kumar, associate professor in the department of psychiatry at AIIMS.

Planned legislation

The Mental Health Bill, which awaits clearance in the Lok Sabha, requires every insurance company to provide medical insurance for mentally ill persons on the same basis as that given for physical illnesses.

In a country where more than 80% of the population does not have health insurance, this step seems like a distant dream. To top that, there are 3,800 psychiatrists, 898 clinical psychologists, 850 psychiatric social workers and 1,500 psychiatric nurses nationwide. This means there are three psychiatrists per million people, which according to data from the World Health Organization, is 18 times fewer than the Commonwealth (a group of 52 nations, including India) norm of 5.6 psychiatrists per 100,000 people.

Many argue that the present mental healthcare system in the country, with its emphasis on psychiatric services, is inappropriate to meet the mental health needs of women, who usually want counselling and support structures.

“Most of our programmes focus on increasing the numbers of psychologists and psychiatrists but unless we create resources within the society, and unless we increase the awareness, we wouldn’t make any progress in dealing with mental health,” says AIIMS’s Kumar.

No locks

To fill the treatment gap in psychiatry, some rural outreach programmes are trying to create an environment in the community, where people can be more open about their brain health challenges.

“We need places especially in urbanized spaces where we don’t have the colonial lock-ups. We need humanized social supporting systems. A comprehensive healthcare is required,” says health activist Davar, who is also managing director and founder of Bapu Trust, a non-profit organization dedicated to research in the area of mental health.

For the mentally ill, among other problems, housing too is a concern.

In a family of five in an urban setting in Tamil Nadu, the father, who passed away last year, suffered from clinical depression. So did one of the daughters. The symptoms became worse and she was sent to a mental institution. She has two other sisters—one a widow, the other is divorced. The latter’s husband divorced her because her father and a sister have mental illness. All the three daughters were living with their mother. But they have to move homes frequently because the landlords say so. The mother prefers to have her clinically depressed daughter in the mental health institution because that way she can take care of the rest of the family.

This isn’t an isolated incident. Many clients’ families have to pay extra rent because according to the landlords, the presence of a mentally ill patient means a lot of (financial) risk. This is more prevalent in semi-urban and urban places,” says Preetha Krishnadas, assistant director of Urban Mental Health Programme at the Banyan, a non-profit organization for people with mental illness in Chennai.

To create more housing options for the mentally ill, the Banyan offers cluster group homes, shared housing and group homes.

Cluster group homes are semi-institutional settings, six-seven cottages in closed communities, with one health worker. For those with chronic illnesses, there is shared housing. It offers more independent living—a house for five-six patients, along with a healthcare assistant, located within a community and with no locks. The idea is to facilitate social inclusion. On the other hand, group homes are for people who are functionally independent. They will be earning on their own but sharing a house. In urban settings, the Banyan pays the rent. In rural, it is the women themselves who pay.

Surprisingly, there is less stigma around mental illness among the poor or lower middle classes. They seek help sooner and talk much more openly.

“When they are poor, nothing is affecting their self esteem. Among the upper middle class, stigma is high. They don’t want to talk openly. They fear losing their job, their house, support system, dignity. There is always fear of losing something,” says Krishnadas.

When the 49-year-old was discharged, she begged the hospital to not let her go back. She felt safe inside the mental health institution.

“I kept thinking of how my husband behaved with me, beat me up, how he came home everyday drunk. I thought it is better to be with people who know I have some illness, and since I am better now, I can serve them. At least I will be doing someone some good,” she says.

In the psychiatric department of IHBAS, there are rows and rows of people—both men and women—waiting to be heard. Social worker Chakraborti says the trend has changed recently—just four- five years back. “The crowd shows how people are overcoming this stigma. There is some movement, maybe not as much as there should be, but things are changing for the good,”she adds.