By Riddhi Dastidar
‘He called today because he couldn’t remember what year it was.’ Sonam Luthra* is talking about Kabir Chadha*, an inpatient at VIMHANS — Delhi’s leading private mental healthcare institution. Chaddha lives with schizophrenia. His family uses institutionalisation to ‘outsource his existence,’ says Luthra, who was both his partner and sole caregiver for years, before burning out.
Having moved out of the city for work, she visits monthly while figuring a ‘better set-up’ for him near her. ‘He’s family,’ she says. Chadha is too ill to speak with me himself, so my conversations take place over a month with Luthra. When we first speak in September 2019, it’s been two months since he was admitted.
In 2017, the Mental Healthcare Act (MHCA) was passed. It aimed to bring Indian standards of mental healthcare in greater alignment with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which India ratified over ten years ago.
The CRPD binds India to certain standards — like the right of persons with disabilities to dignity, to live independently and in their community. This includes persons with psychosocial disabilities — or ‘persons with mental illness’ in the words of the MHCA.
While the MHCA should prevent human rights violations, implementation of its various provisions – including setting up crucial bodies responsible for enforcement, and ending forced institutionalisation – has been slow and troubled. Further, as activists like Amba Salelkar have pointed out, the MHCA itself contains worrying aspects.
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Chaddha’s typical day at VIMHANS looks like this: He wakes up when he wants, is given medication and canteen-breakfast. He paces the room, sleeps some more, eats lunch, sleeps, loses track of time. A doctor or nurse checks in. He does not leave his room. His family – Luthra tells me, wealthy and unwilling to grapple with that kind of ‘problem’ – have hired an attendant to accompany him.
Recurring institutionalisation means that Chaddha has given up. At his family home he’s slipped into alcoholism. Luthra says, ‘His last two times at VIMHANS he’s been like “if you’re going to make me do things, you’re going to have to make me do them”.’
As it turns out, not only can mental health establishments ‘make’ people do things, under the MHCA it’s completely legal. Further, even admissions like Chaddha’s — against his will —are regularly not recorded as involuntary.
Salelkar says, ‘If you speak to people who work in mental health a large number of admissions are shown to be ‘voluntary’. Someone is brought to the place and they are kind of ‘convinced’, for lack of a better term, to get admitted. This is perhaps dubious but cuts out a lot of red tape. Supported admissions [ordered by a court or other statutory body for homeless persons or overruling the will of the person if a case is established by family] form a minority of admissions in many institutions.’
The CRPD prohibits deprivation of liberty merely because of disability (Article 14), and mandates that support measures uphold the best possible determination of the person’s ‘will and preference’ (Article 12).
The MHCA seemingly upholds this. It specifies that treatment of patients admitted to institutions must have informed consent. However this depends on what kind of patient you are. Under the Act there are two kinds of admissions to a mental health establishment:
- Independent admission (meaning voluntary, self-initiated) and
- Supported admission (meaning not quite voluntary; initiated by caregiver or family in a crisis)
The MHCA does not use the words ‘voluntary’ or ‘involuntary’. Instead, the distinction between ‘independent’ and ‘supported’ admissions hinges on whether the person is considered to have ‘capacity’ upon assessment by a mental health professional.
Someone can be involuntarily institutionalised as a supported admission if they have attempted or are at risk of harming themselves or someone else or if they seem unable to care for themselves to a degree that puts them at risk of harm. Supported admission must also be the ‘least restrictive care option possible’, enforced only if the person requires ‘very high support from the caregiver.’
Chaddha, who ticks all these boxes, can be legally admitted against his will.
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Conversations with several people admitted to mental health establishments around when the MHCA came into force (29 May 2018), showed a strange blurring between independent and supported admissions.
Swati Mukherjee*, a Delhi-based academic, lives with atypical schizophrenia. In April 2018 while working in the US, she experienced her first psychotic episode. Telling no one and carrying just her phone and passport, she boarded a flight to Bangalore. Once there, she lived ‘between hotels and the streets’ for nearly a week before police picked her up. On the aegis of her parents, she was taken to NIMHANS, the premier public institution for mental healthcare.
Her regular psychiatrist there asked if she’d consider staying in the facilities for a few days. Because he asked, she agreed. He told her it’d be seven to ten days. She stayed a month.
‘NIMHANS is a good place. It wasn’t some superbly oppressive atmosphere,’ she says. ‘Except I wonder if I could have been discharged sooner. I wasn’t violent — so there wasn’t any reason for me to be in there so long.’
Under the MHCA, supported admissions are limited to 30 days, if the patient no longer meets admission criteria. Independent patients must be discharged immediately upon request.
Although Mukherjee was institutionalised right before the MHCA became legally binding, things haven’t changed drastically since.
In October 2018, a terrible fight with her girlfriend triggered a breakdown for Durga Mathur* and she ‘resorted to self harm for the first time’. This frightened Mathur, who lives with bipolar II. She decided she needed inpatient care. To comply with VIMHANS’s usual policy requiring an accompanying relative stay, her father took leave from work.
‘I thought I’m still in control,’ she says. ‘I picked the place, sought help, decided the doctor and the time I’d go.’ When staff attempted to confiscate her phone, she resisted, realising many patients had personal items taken away. ‘Earphones could be risky but why take away my link to the outside world?’
After her first night, Mathur moved to a private room in the psychiatry ward on the low-risk first floor. Here, she found patients moved around and there was a strict timetable of mandatory activities.
‘It was irritating because the activities were very childish, like paper-folding and word puzzles. And whenever staff saw me with a visiting friend, they’d ask where my father was,’ she says.
Mathur’s stay lasted two weeks. ‘I had intended a week but after five days, I kept asking my psychiatrist when I could leave,’ she says. It took more convincing and three days of her father insisting, till she was allowed to fill paperwork voluntarily terminating treatment. This was in direct violation of the law governing the discharge of independent patients.
Mathur recalls a girl from small-town Bihar, who had been admitted five months before her for bipolar I. ‘Her mother kept asking the staff, doctors, even the art teacher, “When will this end?” And they’d always brush it off like abhi nahi (not yet)’.
There was another reason behind Mathur’s desire to leave: ‘On the 5th day, one of the staff kept a bill on my dad’s table and it was like a lakh!’ Mukherjee’s stay at NIMHANS (a public hospital) cost her Rs. 27,000.
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The MHCA has two novel provisions — Advance Directive (AD) and Nominated Representative (NR).
Advance Directives are put in place to specify what sort of care someone would want or not want in a scenario where they are judged to lack capacity. The Nominated Representative is someone chosen to take decisions on their behalf.
Significantly, under the MHCA, the onus of presenting the AD to medical professionals is on the patient/caregiver, as is the onus of reporting violations. This fails to acknowledge serious power and knowledge imbalances.
‘There has been no serious attempt [by the Government] to publicise the rights-based provisions in the law or to enable registration of Advance Directives [by official bodies],’ says Salelkar.
Unsurprisingly then, Mathur, Mukherjee and Chaddha were unaware. At no point during admission were they informed about the MHCA including their rights as patients like the right to legal aid, or to know grounds for admission.
Further, the MHCA creates certain exceptions. If a medical professional/caregiver desires not to follow an AD or NR, they can apply to the district Mental Health Review Board to alter or cancel it. In case of emergency, ADs do not apply at all.
‘What can be construed as emergency?’ asks Jhilmil Breckenridge, mental health activist and co-founder of Bhor Foundation. ‘In India, one can just say yeh meri wife hai (this is my wife), she is mad, and it’s their word against hers. Families will say tumhari bhalai ke liye hai (it’s for your own good).’
A 2014 Human Rights Watch report on abuses inflicted on women in mental institutions across India bears her out.
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The Mental Health Review Board (MHRB) is the body where people can appeal if their rights have been violated, and where ADs and NRs are registered. Along with the State Mental Health Authority (SMHA), it drives implementation of the MHCA.
‘These district boards are the biggest protectors of rights in mental health,’ says Dr. Soumitra Pathare, one of the architects of the MHCA. In Delhi, the MHRB has not yet been constituted. This is because one of the primary duties of the new SMHA is to set it up and that hasn’t been constituted either.
The MHCA mandates all state governments to constitute the SMHA within nine months of assent from the President (7 April 2017). It’s safe to say that it has been over nine months.*
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Credit: Maria Zaikina via Flickr, CC BY-NC-ND 2.0
If you spend some time in a public mental health institution, you’re reminded of something: the lower down you go on the socioeconomic ladder, the more limited is your access to information and resources.
On a Saturday evening, IHBAS’s Emergency wing is buzzing with people. Daughters, single mothers and brothers have brought family members based on word of mouth. Some traveled from other states. Everyone falls in the lower-middle class or lower demographic.
‘We need to ask why do families go for institutionalisation?’ says Dr. Chitra Venkateswaran, the Clinical Director at Mehac Foundation in Kerala. ‘All don’t do it to be hostile or abandon family members. [But] there is no good alternative!’
Mehac provides long-term community-care and home-visits. Their multidisciplinary team partners with people in the community like a Panchayat or NGO. ‘If there were facilities like daycare homes or residential programs comprehensively integrated with other systems, you’d have less institutionalisation,’ Dr. Venkateswaran says.
Deinstitutionalisation is essential to uphold the CRPD. Strikingly, it’s the one issue on which there is consensus among all psychiatrists, activists and lawyers I speak to.
Dr. Nimesh Desai, Director at IHBAS is emphatic that all mental disorders, however severe, can be managed through outpatient services. ‘The past 4 years here have seen increasing success with at least prevention of institutionalisation,’ he says. Proof: the 1% admission rate and 2-3 week average duration of stay.
‘There is no reason for custodial institutions!’ he insists.
Even after reforms, the top-down custodial model of ‘treating’ the mentally ill as opposed to ‘caring’ for them as partners persists. IHBAS itself is a model public institution, built in place of Delhi’s Shahdara Mental Asylum. A small block preserves Shahdara’s ruins: narrow cage-like cells with rusting grills, cobwebs, darkness, silence.
In contrast, IHBAS looks like a university campus with vast green grounds and brick buildings. The wards are clean and swept. The group activity room has a quote of the day: Just because you are struggling doesn’t mean you are failing. Keep fighting.
Can fighting be enough? Where do people with psychosocial disabilities go after deinstitutionalisation and who will be their community? What do they do for a living? How then would they be protected from discrimination?
‘Without programmes that work with people to address socio-economic issues, we’re just sending them back to the place where they’ve been pushed into a corner,’ Salelkar says.
Val Resh, ‘schizophrenist’ and founder of the Red Door Project makes similar points. In case of persons with schizophrenia, by the time you get beyond unhelpful treatment or stigma, she says, you’re already behind on a career or being self-sufficient — which impacts your self-worth.
On World Mental Health Day, she’s inundated with interview requests. ‘Is there not another schizophrenic people can contact?’ she asks. ‘That really speaks to what the situation is in reality.’
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After Shahdara was razed, 42 ‘inmates’ stayed on at IHBAS. Part of the country’s historical backlog in mental institutions, they had nowhere else to go. Two years ago, they shifted to Saksham, Delhi’s model long-stay home. Here, 23 women and 15 men, all over 60 live just off the IHBAS campus. When I visit, the men are watching TV and the women are catching the evening breeze in the courtyard.
The MHCA directs the government to provide adequate facilities to homeless persons with mental illness in the form of longstay and halfway homes. There is a dire shortage of such facilities and Dr. Desai believes this is the crucial ‘next block’ that must be fixed.
Overall in 2019, not only is involuntary admission still a practice, the public remains largely unaware of rights-based provisions in the MHCA and unequipped to protect themselves. There is a dire need to scale up rights-based and community care models to assist people in mental health crisis situations — particularly when poor or homeless.
No one I spoke with wanted to ever be admitted to an institution again. All reported feeling lack of control and information regarding how long they would stay, money constraints and a deep loneliness.
In 2019, mental health is on our lips, screens and advertisements more than ever. It’s not even close to enough.
*Names changed to protect privacy
**Note: The Delhi government put out notice seeking nominations for formation of the new SMHA only as of September 2019. In the interim, the old SMHA has been functioning as both SMHA and MHRB.
Riddhi Dastidar is a queer Delhi-based poet and journalist. She is a postgraduate student of MA Gender Studies at Ambedkar University Delhi, working on ‘severe’ mental illness, ontology and discourse in contemporary India. She lives with OCD. You can follow her @gaachburi.
Featured image credit: Alia Sinha