'Locked up and abused'

Titled "Treated Worse than Animals': Abuses against Women and Girls with Psychosocial or Intellectual Disabilities in Institutions in India," the 106-page report, released in December 3, documents involuntary admission and arbitrary detention in mental hospitals and residential care institutions across India.

Based on more than 200 interviews, the paper analyzes the situation of women and girls with psychosocial or intellectual disabilities and finds that patients in these facilities experience overcrowding and lack of hygiene, inadequate access to general healthcare, forced treatment – including electroconvulsive therapy – as well as physical, verbal, and sexual violence.

Research was conducted from December 2012 through November 2014 in the Indian cities of New Delhi, Kolkata, Mumbai, Pune, Bengaluru, and Mysore. The report also examines the multiple barriers that prevent women and girls with psychosocial or intellectual disabilities from reporting abuses and accessing justice.

Kriti Sharma, a researcher in the Disability Rights Division of Human Rights Watch (HRW), says in a DW interview that community-based services could help educate people on the nature of these disabilities, and could ease some of the stigma associated with such illnesses.

DW: Why do you claim that women with disabilities are mistreated in government institutions and mental facilities?

We visited 24 such institutions across four Indian states and most were horrifying; with people complaining that they were only allowed to bathe once a week, often without soap - even though they wanted to bathe every day. Dozens of women shared one towel. Everyone bathes together, a humiliating experience. Lice are so rampant that many residents are forced to shave their heads. There are countless reports of verbal and physical abuse.

One of the worst institutions we saw, Asha Kiran, a government-run residential care facility in Delhi, is for people with intellectual disabilities. Almost 900 people were crammed into a facility designed to hold 350. Everyone slept on the floor, there was no place to walk. There were no meaningful activities or proper vocational training. The women and girls spent their days locked inside their rooms, sleeping and watching TV. Some of the staff wrote the patients off as "mentally retarded."

These women cannot leave an institution until a family member picks them up or takes charge of them - but sometimes their families leave fake addresses and phone numbers so they can't be traced. We met women who were institutionalized under a court order that expired years earlier, but because no family member claimed them, they weren't permitted to leave.

What are the main reasons behind the prevalence of such abuses?

The real problem is, in India people with psychosocial or intellectual disabilities have little control over their lives. Even when there is no medical emergency, decisions are typically made by a family, caregiver, or judge. So doctors and nurses don't bother to get the consent of the patients or to explain procedures. This leads to rampant abuse.

Most mental health professionals we interviewed contended that their treatment was in the women's "best interest" and that the women and girls weren't in a condition to give informed consent. But that's simply not the case. I've met formerly institutionalized women and girls who had asked, many times, to have a say in their treatment. The mental health professionals ignored them.

Under human rights law, people have a right to make their own decisions, and even to refuse medical treatment. It's the government's responsibility to support them in making an informed choice.

How would you describe the condition of mental facilities in India?

Access to mental health care is extremely limited in India. There are only 43 state mental hospitals - clearly not enough to provide quality services for the 70 million or more people with psychosocial disabilities who may want it. For every million people, there are only 3 psychiatrists and roughly 0.5 psychologists. And only 25 percent of hospitals, clinics, and mental health professionals are in rural areas, where 75 percent of the people live.

Rural areas are in such desperate need of services that if families hear of a mental hospital 40 hours away, they'll put their relative, alone, on a train to that city. But when they arrive, they don't know where to go, and end up homeless - there's a huge risk for sexual violence here - until the police pick them up and take them to the hospital.

Parents of girls with intellectual disabilities have limited choices. Few schools provide meaningful education for their daughters. Some families rely on non-governmental organizations. Others start their own support groups, but as so many people need help, these groups quickly become overwhelmed.

Furthermore, people in India - particularly in rural areas - associate psychosocial or intellectual disabilities with black magic or with sinning in a past life. The families feel stigma and shame, and sometimes forbid their relatives with disabilities from leaving the house.

What measures have been taken by the Indian government to prevent such abuses?

In 1982, India's government did create a community-based national mental health program, but it's not effective. I visited five of these centers in Delhi. Each is supposed to be staffed by one psychiatrist, one psychologist, and a social worker. I found that the same psychiatrist staffed all five centers, and in some there were no psychologists or social workers. There are not enough people working in the field, partly because the stigma of these disabilities extends to the professionals who assist them. Community-based services could help educate people on the nature of these disabilities, and could ease some of the stigma.

What does it take for people to end up in mental facilities in India?

The law says you need two psychiatrists to say someone has a psychosocial disability and needs to be in a state institution – but this can easily be done at any mental hospital. If someone wants to abandon their family member at a residential care facility, for example a private institution, all they need to do is sign – no other documentation is required.

The process is problematic because there is really no effort to get the informed consent of the person concerned, and then they can be locked up against their will without any means of challenging it. This is no longer acceptable.

Why are women and girls particularly affected? Are men also abused?

Men are forcibly institutionalized as well. But women face widespread discrimination in India, and the rate of sexual violence against women and girls is appalling. If a woman has an intellectual or psychosocial disability, it makes her even more vulnerable to abuse.

Women also face unique forms of neglect and abuse. Take reproductive healthcare. Many stop menstruating because of anti-psychotic medications, yet in most cases they'll never see a gynecologist in an institution. Some women who have been living on the street may have been raped or even gang-raped, and they don't get needed reproductive care in an institution. Also, if a woman with an intellectual disability says, "My neighbor raped me," she may well be slapped and told not to lie. People don't believe them.

What do you believe should be done in order to resolve these problems?

First, legal reform, to ensure that like everybody else, people with disabilities have the right to make their own decisions, and they receive the necessary support to do so.

Institutions need better government oversight. And ultimately, the focus needs to move away from institutional care to providing access to community-based services for people with disabilities and their families. These services should include access to support for decision-making, as well as education, vocational training, and reproductive health care. And everyone needs to be educated on the rights of people with disabilities.

Kriti Sharma is a researcher in the Disability Rights Division of Human Rights Watch (HRW).