The Mental Health Care Bill, which sees mental health care only as a repair job, fails to recognise the value of psycho-neural diversity.

THE HINDU ARCHIVES During a tug-of-war contest in a mental hospital in Kerala, a file picture. It is important that all persons with mental disability are treated as autonomous persons worthy of respect.

By AMITA DHANDA

IN his classic study on famines, Amartya Sen contended that avoidance of famines did not just require food stocks but also the freedom to raise one’s voice against dwindling stocks. To prove the point, Sen referred to China, where people died of starvation just kilometres from well-stocked granaries because they did not have the freedom to speak of their piteous condition. Sen was arguing for the indivisibility of rights and contending that people could not be asked to choose between food and freedom, and that they needed both as the absence of one could result in the loss of the other. Despite Sen’s highly persuasive reasoning, it is often believed that freedoms are the luxuries of the endowed and there is no point in offering a choice to the deprived as it is obvious what they would choose. Material goods and facilities are not accorded greater importance only when issues of hunger and starvation are discussed. They are also seen to be critical for other survival needs. It is often claimed, not just in India, that in order to promote mental health, the development of infrastructure, personnel and services should be given greater importance than the will and preference of the persons receiving the services; that questions of choice and preference can be addressed after a robust system of mental health care has been established.

The piteous condition of the inmates of Berhampore Mental Hospital and the unanimous passage of the Mental Health Care Bill, 2013, by the Rajya Sabha were two pieces of news that were widely reported recently. This simultaneous surfacing of the problem and the solution causes one to ask, will the new mental health care law improve the life chances of those abandoned in these obsolete institutions? Does the Mental Health Care Bill have an exit plan for the inmates of these hospitals? Does it ensure that such institutions will be phased out?

The Bill starts on an ambitious note, promising every person the right to access mental health care and treatment from mental health services run or funded by the government. This mental health care has to be affordable, of good quality, plentiful, available to all without discrimination and, most significantly, “provided in a manner that is acceptable to persons with mental illness and their families and caregivers”. If for a moment it is presumed that the person with mental illness, the family and the caregivers have identical expectations from mental health care, this generic phrase has the potential to forge a link between services and choice. Unfortunately, this has not happened and instead the Bill has proceeded in the opposite direction.

The Bill allows a person, who so desires, to formulate in advance a direction to the doctors on permissible treatment and the manner in which it may be administered. Considering that the legislation makes patient preference in the manner of providing mental health care a right, it would be expected that the honouring of advance directives would be an article of faith. Instead, the Bill designs both the making of the advance directive and its subsequent implementation an obstacle race for the maker. Successful completion of the race does not ensure that the doctors and the family are obliged to obey the directive; both the doctors and the family can bypass the directive by following the procedure provided in the Bill. The discomfiture with following patient preference also comes to the fore when the doctors are exonerated from any liability, which may arise if they follow the patient’s advance directive.

In a similar fashion, the facility to appoint a nominated representative has been converted from a right of the patient to a power of the state. Thus where the patient does not nominate a representative, the statutorily designated list takes over. This is like asking a student to choose her working partner and as she is weighing her choices, a partner is provided and the teacher believes the student was provided an opportunity to choose.

As already mentioned, there was a possibility to construct the mental health care system premised on the preferences of persons living with mental illness. This required policymakers to accord respect to the choices made by them. Yet, the legislation only refers to drugs and treatments devised in allopathy and other systems of medicine such as Ayurveda, Unani, and homeopathy and yoga. No reference is made to the recovery interventions devised by persons with psychosocial disability, be it peer support, open dialogue, family therapy or culture-based interventions such as faith and temple healing, which even the mental health programmes of the country have admitted to provide relief to some persons with psychosocial disability. The Bill does not bar these preferences; but neither does it permit them. And users relying on these services cannot be sure of their choices being respected as the Bill requires persons with mental illness, unlike the rest of the populace, to prove they possess legal capacity. Just the presence of mental illness does not mean that the persons lack legal capacity, but the presence of mental illness is sufficient to question the legal capacity to make contemporary choices or issue advance directives.

So when the Bill refers to an essential drug list or state-of-the-art treatment facilities and medical insurance on an equal basis with persons with physical illness, it is primarily referring to the biomedical interventions provided by allopathy. For other medical systems, the Bill concedes inclusion in the essential drugs list if they have any drugs. Non-drug interventions which are being preferred by a number of people with psychosocial disability have just been ignored. If an ambulance or other means of swift and safe travel is provided to take an individual for the medical or other intervention they desire, then the ambulance service is perceived as support, but if the service is provided to transport an individual to a service they detest, then the home service would be seen as arrest and abduction. If a person with physical illness is provided an emergency treatment and he or she wishes to discontinue it after the emergency is over, they are free to do so. The same freedom is not available to persons with mental illness and this situation has not been remedied by the Bill.

CRPD and the Bill

This is the case even when the Bill is being enacted in order to bring the mental health law in the country in consonance with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which was adopted by the world body in 2006 and ratified by India in 2007. Equality and non-discrimination is the centrepiece of the Convention and the full inclusion of persons with disabilities within the polity its overarching objective. Singling out persons with mental disability for legal capacity questioning and allowing such disability to be a criterion in procedures ordering compulsory institutionalisation are provisions that are in breach of the equality mandate of the CRPD. In acknowledgement of the fact that the perceptions of the non-disabled world do not match with the lived experience of persons with disabilities, the CRPD was drafted with the active participation of persons with disabilities. Absence of persons with disabilities could cause prejudice to resurface and stereotype to rule. To avoid this consequence, the CRPD expressly obligated the states to make all laws and policies relating to disability in active consultation with disabled persons and their organisations. The two-member team that drafted the Bill as also the Standing Committee for Parliament consulted disabled persons and their organisations and did introduce some amendments in the 2013 Bill on the strength of those representations. However, all submissions asking for recognition of will and preference, ouster of compulsory care and guardianship have been ignored.

What is the consequence of this selective engagement? The Bill makes some commitment in relation to services, essential medicines, and non-discriminatory medical insurance, but these services and medicines are not linked to actual preferences of persons with disabilities but what professionals and practitioners consider suitable. People with disabilities whose preferences are in line with what the professionals suggest stand to gain; others are left in the cold or made to accept whatever is on offer. Nobody asks whether recovery can result from such forced interventions. During the negotiations, persons with mental disabilities testified before the Ad Hoc Committee of the United Nations on how the humiliation of the forced intervention prevented them from seeking any treatment from the formal system.

If force and compulsion closes communication and drives persons into isolation, then is there not a case to legislate dialogue and negotiation?

The Bill has several provisions addressing the rights to liberty, expression, information and the right to legal capacity. However, these provisions primarily provide for procedures by which these rights may be deprived or curtailed. The legislation does not speak of means and methods by which these rights can be promoted, respected and realised. If this effort is not made, then can it be claimed that the Bill upholds the CRPD when the CRPD states that in no case shall a person with disability be deprived of liberty by reason of disability?

The quality of services is known to improve when the users of the service are empowered persons whose voices would be heard. Inmates of institutions, who have the highest stake in improving the quality of services, can do little in the matter as they enter the service voiceless and powerless. Lawmakers are concerned with wrongful admission, and they do not want institutions to be used if services that impose lesser restrictions on inmates are available. And yet there is no obligation to create such institutions. And the responsibility for ensuring that nobody obtains wrongful admission is placed on a Mental Health Review Commission, courts and legal aid. These are all review mechanisms external to the institution, and the Bill has no inbuilt correction mechanism. It has not built alliances with the natural watchdogs of any institution—the inmates themselves.

To go back to the question raised at the beginning of this piece, will the new law help the inmates of the Berhampore Mental Hospital? Despite all the additional resources the Bill promises to pour into the sector, the answer remains a reluctant no. For the inmates of the Berhampore hospital to have a better deal, it was important that all those with mental disability were treated as autonomous persons worthy of respect. If even one person can be forcibly treated or projected as dangerous or incompetent, then all overt, covert and hibernating persons with disabilities can be so treated. By not recognising this reality, the Mental Health Care Bill has failed to create a regime of universal mental health care.

The legislation has not looked at freedom and services as one indivisible whole, and thus services are being created not according to what persons with disabilities want and need but according to what the experts in the field believe they need. The decade of the brain tried to prove that “mental illness” was just a biomedical aberration. It failed. The descriptor “psychosocial disability” on the other hand captured the idea of a differently wired mind which is excluded by social norms, practices and beliefs. The biomedical approach towards mental diversity is concerned with fixing the individual, whereas the psychosocial is geared towards acceptance. Evidently, a robust mental health care law and policy require both. The Bill, in only seeing mental health care as a repair job, has failed to recognise the value of psycho-neural diversity.

With the Bill having such a smooth ride in the Upper House, its passage in the Lok Sabha is assured. However, just because the Lok Sabha has the numbers to enact the Bill is no reason to do so. A psychiatrist colleague has referred to the Bill as a work in progress. I agree. My only submission is to let the progress in the Bill happen when it is debated in the Lok Sabha and not a decade later. There are possibilities of transformation in the Bill, and I hope that those possibilities are seized by the House of the persons so that the most excluded members of the polity get their just due.

Amita Dhanda is professor of Law and Head, Centre for Disability Studies, at NALSAR University of Law, Hyderabad.

‘Recognise mental illness as disability’

 

The Tamil Nadu Association for Rights of All Types of Differently Abled and Care Givers has called upon the government to recognise mental illness as disability in need of government disability assistance. A resolution was passed to this effect at TARATDAC State Conference held here on Friday.

The resolution also called upon the State Government to implement the Government Order 27 that recognised 40 per cent disability and relaxed rigid norms for differently-abled assistance.

According to TARATDAC, the GO was passed in February following sustained campaign by the federation of disability rights groups. However, it is yet to be implemented. Also, disability assistance is being disbursed through Revenue and Differently-abled Welfare Department following two different guidelines and norms.

These variations should be removed, and assistance should be disbursed through the differently-abled department to all differently-abled persons.

Similarly, 40 per cent leprosy should also be considered for disability assistance, the resolution said.

According to TARATDAC, disability assistance of Rs.1,500 is issued under the category of ‘severe disability’ to those with over 75 per cent bodily disability. But, the same is denied for those with 75 per cent visual or hearing impairment.

The variations in disability assistance eligibility should be removed, the resolution said.

The TARATDAC also pledged their solidarity with the September 2 nation-wide strike of All India Trade Unions.

According to TARATDAC, the Centre has not yet shown any signs of bringing into force a Disability Rights Act, as promised by during the 2014 elections.

The resolution also alleged steady slashing of budgetary allocation for the differently-abled.

Despite Supreme Court’s directions, 3 per cent quota for differently-abled was yet to be enforced in the government jobs, the resolution said. TARATDAC also recorded that the allocation of Rs.200 crore under the Accessible India Scheme was negligible.

NGOs join issue with government on ‘divyang’ consultation spin

 

CHENNAI: Following the raging controversy over the Centre’s decision to replace the term ‘Persons with Disabilities’ (PwD) with ‘Divyang’, an RTI petition filed by a New Delhi-based disabled rights activist has revealed that the authorities had consulted all of six NGOs before deciding the change of the name. What is worse, one of those six alleged that they were never consulted as claimed in the RTI reply.

“No, we were not (consulted). We never received any letter, any invitation. We never attended any meeting, any consultation,” Javed Abibi, honorary director of the National Centre for Promotion of Employment for Disabled People (NCPEDP), said on his social media account.

The officials at the Commissionerate for the Welfare of the Differently Abled here told Express that they did indeed receive a notification, but the Centre took the decision before the State could reply.  As per the gazette notification dated May 17, the Department of Empowerment of Persons with Disabilities was renamed as the ‘Divyangjan Sashaktikaran Vibhag’ in Hindi, which attracted a torrent of criticisms from disability rights groups.

Taking up the issue, Delhi-based activist, Abha Khetarpal, a polio survivor, filed an RTI petition with the Ministry of Social Justice and Empowerment as well as PMO in late February. The Department of Empowerment of PwD’s replied that it was in consultation with various States and organisations on the issue. Noting that consultations were held with just six organisations and a few central agencies, Khetarpal added, “How is that an issue as serious like this is considered without a wide-ranging public consultation?”  Vaishnavi Jayakumar, founder-trustee of Banyan, pointed out how the Canadian government took inputs from the community before deciding to rename federal aboriginal affairs department last year.

Nomenclature not accepted

When Prime Minister Narendra Modi first invoked the term ‘Divyang’ last December, he suggested that physically- challenged people have a divine ability. However, the term ‘Divyang’ is viewed by several differently abled people and rights organisations as regressive and condescending. Says Abha Khetarpal, a psychologist, “The term is nothing more than a label which can have huge repercussions. By affording divine status to PwDs, it can lead to identity crisis in them. Persons with Disabilities shouldn’t be treated any differently than any other normal person.”

New Indian Express

Use of ‘Divyang’ will not end discrimination, access to rightful entitlements will: Disability Rights Groups

NEW DELHI: The National Platform for the Rights of the Disabled, a voluntary network has raised objection to the use of term “divyang” to address people with disabilities. The Disability rights group has written to Prime Minister Narendra Mod seeking his intervention to withdraw the notification renaming ‘viklangjan’ as ‘divyangjan’ in Hindi nomenclature of Department of Empowerment of Persons with Disabilities.

In its letter to the PM the Disability rights group draws attention to the gazette notification of May 17 renaming the Department of Empowerment of Persons with Disabilities as the ‘Divyangjan Sashaktikaran Vibhag’ in Hindi. “Disability is not a divine gift. And the use of phrases like ‘divyang’ in no way ensure de-stigmatisation or an end to discrimination on grounds of disability,” The National Platform for the Rights of the Disabled, secretary Muralidharan has said in the letter.

“What needs to be addressed are stigma, discrimination and marginalisation that persons with disabilities are subjected to on account of the cultural, social, physical and attitudinal barriers that hinder their effective participation in the country’s economic, social and political life. Mere change of terminology is not in any way going to alter this,” it added.

The disability rights group had earlier written a letter to the PM in January objecting to the word “Divyang” when Modi had referred to replacement of the word ‘viklaang’ with the word ‘divyang’ during his monthly broadcast of ‘Mann Ki Baat’ programme.

“We had pointed out in our letter that invoking divinity will in no way lessen the stigma and discrimination that persons with disabilities have been historically subjected to and continue to encounter in their daily lives. Exclusion and marginalisation cannot be addressed by using patronising terms like ‘divyang’,” the voluntary network had argued. The idea of replacing Viklaang with Divyang was presented at the launch of teh Accessible India Campaign in December last year, where the PM’s message was read out by finance minister Arun Jaitley. The usage of the word has since then evoked a mixed response from activists and voluntary organisations working with the disabled.

Meanwhile, Convenor of Disabled Rights Group (DRG) Javed Abidi said that while he has not particular preference for the word “divyang” but if he has to choose one he would prefer divyang over viklaang as the latter carries in its meaning a lot of negativity. However, he is clear that what he is more concerned about is the lack of effective measures to make life better for disabled persons. “I am not happy with the way the Accessible India program is being executed. Also what about the law for disabled persons that the government has been promising for long. It is more important to focus on issues that can give people with disabilities quality of life instead of focusing on cosmetic changes,” Abidi said.

Ambika Pandit | Times of India | May 26, 2016

Make all platforms disabled-friendly by April: Bombay High Court to Western, Central railways

The Bombay High Court has directed the Central and Western railways to make all the platforms disabled-friendly by the end of April. The court has asked the railways to provide ramps for the disabled, signages for the blind, railings on foot over bridges and low height ticket windows, so that the diabled face no difficulty while boarding a train.

In addition to that, a bench headed by justices AS Oka and Prakash Dev Nayak observed on Thursday, “The height of the platforms should be raised by August 2017.”

The court has asked the railway authorities to raise the height of platforms from Churchgate to Virar and the Central Railways plaforms upto Kalyan by August 2017.The platforms of stations beyond Kalyan and Virar are to be raised by December 2017.

There are nearly 26 stations in Central and two in Western Railways that have only one platform and tracks on both sides, making it dificult for the disabled. The Central Railways has now volunteered to develop 14 railway stations. As per the The Persons with Disabilities Act, 1995, the disabled are entitled to all facilities.

DNA

Railway Stations not Disabled-Friendly yet, High Court warns of contempt action

Seeks Names Of Officials Responsible For Completing Work

The Bombay high court has sought the names of he Western and Central railway officers responsible for ensuring that disabled-friendly amenities are provided at suburban stations. It proposes to ssue them contempt of notice or delaying the work.

“It is a sorry state of affa rs,“ said a bench of Justice Abhay Oka and Justice Prakash Naik, when informed that visits to 12 Western Railway , 10 Central Railway and nine Harbour line stations showed that contrary to the railways’ claim, acilities were found wanting.

The court was hearing a PIL by the India Centre for Human Rights and Law.

On March 11, the railways urged for an extension of time o comply with the HC order to complete work on providing amenities for the disabled, in cluding ramps, and lowheight booking windows and drinking water facilities. The deadline was April. Western Railway sought an extension of a year and Central Railway sought time till June. The judges then asked the NGO to verify their claims of work done and to submit a report with pictures of the conditions at stations on all the three lines.
Senior advocate Gayatri Singh, appearing for the NGO, submitted a report of the visit to the 31 stations. She said toilets were either broken or locked and ticket windows were either not at the appropriate height or closed. She said tactile indicators on the floors were not appropriately placed, adding, “At most places, they do not exist.“

Debunking Tall Claims

The judges said except for providing land for a helipad for emergencies, nothing has been done by the railways. “We pro pose to issue contempt notices to the general managers of Central and Western railways.It is the only way to ensure compliance,“ said Justice Oka.Railways’ advocates, Suresh Kumar and Sangeeta Yadav , sought time to take instructions on the NGO’s report. The judges granted a week, but said they must return with the names and designations of the officers responsible for getting the work done.

Times of India

Love, sex and disability

Love, sex and disability

Author Malini Chib, who was in town recently, wonders why women with a disabling condition are considered asexual and are supposed to be bereft of emotional needs?

When did your family first get to know of your disabling condition?

I was born in Kolkata in 1966. My mother was in labour for a lengthy 40-hour period and during this process, the umbilical cord got entangled around my neck, resulting in a lack of oxygen for a few seconds to my brain. That resulted in me having a severe disabling condition called cerebral palsy. I am told that the paediatrician in charge kept repeating to himself: ‘It was a mistake. I should have carried out a Caesarean… Let’s see if she survives… I am not sure if she will survive… at the most 72 hours”. But I survived and my parents decided that shifting to London would be the best bet to address my condition. So, we went.

How much of what you’ve achieved in life will you attribute to the fact that you come from a very privileged and well-educated family?

I am fortunate that I came from a very well educated family. Both my grandfathers had been educated in England and my great aunt was Lotika Sarkar — the first woman from India to have gone to Newnham College, Cambridge. Both my father and uncle had their higher education at Cambridge too. I educated myself, learnt to type with my one little finger and speak through the Lightwriter. I have two international Masters degrees in Women’s Studies and Library Sciences and Information Management. I’ve traveled extensively in India and abroad and have delivered a lecture at the Sorbonne University as well. I have lived alone in London, learnt to navigate through the traffic with my electric wheelchair, gone holidaying with friends to France and pub-crawling in London too.

Your book, One Little Finger, mentions the divorce of your parents as one of the most traumatic periods of your life…

After the Centre for Special Education was set up, my mother put in a lot of her contribution. While my mother was eager to spend her free time with my brother and me, my father wanted more of her time so that he could take her along with him when he needed to socialize and network for being in the advertising profession. This led to little time for each other and a realization that they were incompatible in many ways. My parents got divorced and what followed was a traumatic time for my mother, brother and me. I was eight and my brother three. Although I had no friends, my cousins were, and still remain, my close friends.

You’ve also desired a man who confessed to have feelings for another man…

Yes. He was a dear friend called Zubin. He understood me perfectly. We shared a great deal together. One day, Zubin told me that he loves men sexually and had a partner from Belgium. I was devastated. For days, I would weep silently. I was 21 then and wanted male attention like all my other girlfriends. I have had a hard time accepting that I’m trapped in a rejected body that is not sexually attractive. But most men look at me as asexual.

What do you think is society’s assumption about sexual urges of disabled women?

Society thinks it is enough to include disabled people but what about including their physical and emotional needs? Once when I had said that I too have sexual desires, people around me had asked: “Why would you need sex?” I have also written an article on this titled “No Sex Please, You’re Disabled”. I admit to have outbursts too. Weddings often served as reminders that I possibly would never share such an equation with someone.
 Despite all this, you remain a very positive person. What keeps you going?
I believe that life is beautiful. I have my moments when I can’t control my tears. When I go to a restaurant and the waiter offers the menu card to everyone at the table except me, I feel bad. Even today, people who don’t know me automatically address the person I am with. They will talk about me in front of me but never with me! I’m a completely different person on the Net. Social networking has opened a new world for me. I realize I’ll continue to struggle and adjust to the reality of people shunning me. It’s the attitude of people that can make me feel included or excluded. I think, the art of living lies not just in confronting our troubles but minimizing them and focussing on the positive sides. Most of us are swimming against the tide of trouble but we need to make it to the shore and not let the wave engulf us.
Having written an autobiography, what would you want to pen next?

I don’t know. May be, a romance. I love reading romances.

The Times of India