‘Inclusion & well-being the key words in planning for mental health’

“ECT was like a death tunnel... I would get a headache for days.... I was like a vegetable,” says Vidya*, a 45-year-old woman with psychosocial disability who was forcibly institutionalised by her husband and given electroconvulsive therapy (ECT) without consent for months.

A recent report by Human Rights Watch has shaken the public conscience with its revelations of horrific violations against women with psychosocial and intellectual disabilities in institutions across India. Based on two years of research and over 200 interviews, the report implicates multiple parties — families, mental health professionals, the Government, service providers and the police — for these violations. Kriti Sharma, researcher with the disability rights division of HRW, says, “After the December 16 gang rape, there has been a spotlight on violence against women. However, women with disabilities, and the abuses they experience are invisible in this debate.” There is little data available on institutionalised women and zero-transparency.

Under the prevailing medico-legal system, women like Vidya can be, and often are, institutionalised by literally anyone. Once inside, they too often find themselves trapped in hellish environs marked by poor sanitation, crowding, limited resources and, worst of all, multiple forms of abuse. With its rights-based approach, the Mental Health Bill 2013 was a progressive departure from the draconian MH Act of 1987, which vested psychiatrists with extraordinary powers.

However, the broad definition of mental illness and the lack of biological markers mean that virtually anyone can be incarcerated under the false pretext of mental illness, says Bhargavi Davar of Bapu Trust for Mind and Discourse. The Bill does not recognise the right to full legal capacity, i.e. informed consent for people with disabilities.

Support for decision-making and scope possibilities for independent living are under-explored. Activist and lawyer Amba Salelkar, who has worked on the Mental Health Care Bill and the Rights of Persons with Disabilities, says, “Neither Bills reflect the Government’s commitment to its citizens when the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) was ratified. Under that, institutionalisation appears to be out of the question,” she says. In contrast, the country’s first national policy on mental health continues to reiterate the importance of institutions and hospitals.

As Davar says, “We have scrapped old model cars, so why not the old-model asylum, run with colonial laws, practices and attitudes. The Government must stop licensing private or public asylums.”

The humane alternative suggested is a care system based on community support for independent living. The report points to model initiatives already underway in India: Anjali (Kolkata), The Banyan (Chennai), Bapu Trust for Research on Mind and Discourse (Pune), among others. “Every week we get phone calls from family members asking for the ‘best’ institution to put away a relative. Let it be said, there is no such. A variety of community-based strategies and skilling of communities for peaceful, healthy and harmonious living must be facilitated. ‘Inclusion’ and ‘well-being’ should be the key words in planning for mental health,” says Davar. The simplicity and affordability of the model makes it unappetising for commercial segments in the field, she says.

“At Bapu Trust, we see 400-500 people every year. The project costs us a mere $25,000 a year. If we ran an institution, we will earn that money in a month!” Mental institutions charge, on average, ₹10,000 per ECT session; with a minimum of six sessions prescribed routinely, a huge windfall lies in store in this line of treatment.

Even as the institutionalisation vs holistic treatment debate rages, the right to life and liberty of 187 million (WHO) people with mental illnesses in India hangs in the balance.