Giving back control: What Mental Health Care Bill, 2013 means for the mentally ill

By Asif Kalam

What might it mean for people who live with mental illnesses to be given control over how they will receive medical care? The Rajya Sabha recently passed the Mental Health Care Bill, 2013, which aims to safeguard the rights of people with mental illnesses. It prioritises choices made by patients, and replaces the archaic Mental Health Act, 1987. One of the Bill’s significant new provisions is the Advance Directive, which allows persons living with mental illness to create a document with instructions on how they must be treated and cared for in the event that they are incapacitated by an episode of illness.

The Bill also allows individuals to nominate a representative to take treatment decisions on their behalf if required. Mental Health Review Boards (MHRBs), quasi-judicial bodies that will be set up in every district, will be entrusted with the certification, custody, review, and arbitration of Advance Directives.

Representational image. AFP

"Part of the terror of mental illness is losing control over your mind, and knowing that you will probably lose even more as you grow older,” says Sneha, a 30-year-old writer based in Bangalore, who is bipolar. “To be able to write advance instructions for one’s treatment helps give back some of that control," she adds, when asked about what it might mean for her to be able to make these decisions for oneself. Manisha*, a 26-year-old writer who lives with borderline personality disorder, seems to echo this when she says, “Having a treatment plan in place — even if it’s as simple as a document stating whom to call, what I do not consent to under any circumstances, whom to treat as my next of kin, what my psychiatric and psychopharmacological history is, who my doctors are — would be a level of visibility and explicitness I’d be grateful for.”

Both Sneha and Manisha say that they are willing to go through the process of paperwork to get these Advance Directive documents in place. This is despite how long the process sounds — they both insist that it is important that the directive allows them to maintain control over their treatment. Manisha says she would do it despite not being clear on how the logistics of such a plan would come together. Sneha also mentions that she is willing to and will need to keep updating it, based on the new developments that take place in her illness, its treatment, and her own world view.

Stakeholders we spoke to were in broad agreement that the Bill seems to be a step forward. It has finally decriminalised attempts to commit suicide, and mandates that governments provide affordable, quality, geographically accessible mental healthcare. Vandana Gopikumar, co-founder of Banyan, a mental health NGO for women, sounded hopeful when she said, “I’m happy that the Bill takes into account the large service gap and mandates access to care as a right. This will address the needs of many who live in low resource contexts, who today have to travel long distances to access care, or often forgo treatment in the absence of a functional health and social care system.”

But while the Advance Directive is seen as greatly significant in recognising the autonomy of people for their treatment and care, some policy experts and rights groups are sceptical. Section 11 of the Bill allows doctors and relatives of a person to approach the Mental Health Review Board (MHRB) to revoke or modify the Advance Directive under certain grounds.

Jayna Kothari, lawyer and co-founder of the Centre for Law and Policy Research, argues that the power of Advance Directive is seriously undermined by Section 11. She says, "On one hand the whole provision is to give people with mental illness the right to autonomy and to recognise that they have capacity to take decisions for their own lives. If those decisions that they have made for themselves can be challenged, then you are basically saying that you can make a decision that we can revoke because we know better.”

The grounds on which other parties can challenge an Advance Directive include considerations of whether the person was well-informed, and had the capacity to take the decision. Manisha says, “No matter how distressed or incapacitated I might be at a particular time, I — and the people I trust — know what’s likely to help me and what’s definitely likely to make it worse.”
Kothari argues that in the case of patients who require treatment for other non-mental-health related illnesses, there is no such provision to challenge their decisions, so why is there a lack of patient autonomy in mental health care? “You don’t even raise these grounds for people in non-mental-health situations,” she says.

When asked how she would react if she learnt that her Advance Directive had been overturned, Manisha says, “I’d be unsurprised but bitterly angry. It’s a question of autonomy and self-determination. In some cases this sense of autonomy and self-determination is hard-won. I’d be shattered to realise that having a mental illness somehow translates to my ownership of my life not mattering.”

*Name changed on request.

The Ladies Finger is a leading online feminist magazine.

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Finding love in an ableist world | Latest News & Updates at Daily News & Analysis

Gargi Gupta

In a society where the dice is heavily loaded against them, the differently-abled find that the insensitivity and ignorance they battle daily get amplified when it comes to romance and marriage. Gargi Gupta gets a sense of the challenges they face and how they cope

Preeti Monga was just six years old when she lost her vision. What followed next is a story more or less common to most differently-abled people in India – or used to be back in the 1960s, when Monga was growing up in Amritsar. She was chucked out of school in class VIII, and married off at 23 – "’Arrey, hamare baad koi toh ho isko dekhne wala (There should at least be someone to look after her after us),’ my parents thought," says Monga.

Except that it didn’t happen that way; her husband turned out to be abusive and a compulsive liar. That would have stumped many a woman, especially a visually-challenged one with two children. Not Monga. She got back to school, sat for the class X board exams via open school, learnt aerobics and started her own classes. Then, after becoming economically self-reliant, she filed for a divorce. "But I didn’t want to spend my life alone. I wanted romance, I wanted a partner," she says with disarming candour. And so, she proposed to a colleague she liked. Monga, at the time, was sales manager with a pickle brand. "He was ten years younger and said no. So I asked him again and again every day for 22 days until he said yes," she laughs. "When you want something, you should be ready to go for it. There’s nothing to feel shy about."

Preeti and Ashwini completed two decades of marriage this September.

It’s a heart-warming story, but Ashwini Monga is an exception in a country where the differently-abled battle staggering degrees of insensitivity and ignorance, attitudes that get amplified manifold when they seek a partner, someone to fall in love with, or marry.

More hurdles for women

Sweta Mantrii, a 29-year old freelance writer, editor and documentary filmmaker in Pune who has spina bifida, a condition where the vertebral column bones do not cover the spinal cord entirely. Mantrii studied in a regular school, has an MBA in communications management from a reputed private institute, worked and lived by herself in Mumbai for a year before coming back and has many friends, male and female. Yet, six years ago, a distant relative, presumably invited by her parents to help in their search for a groom for Mantrii, asked her to "Show me how you walk".

That was about six years ago, and her parents are still at it. Mantrii isn’t against marriage; she would like, like many girls her age, a partner, home, love, companionship. But it’s been a difficult quest marred by rejections and jolts to her self-esteem. Families of prospective grooms, says Mantrii, have "implied" to her parents that they expected a financial incentive in exchange for marriage.

"The problem is our social conditioning. Even men with disabilities expect to marry an able-bodied woman," says Versha Kewalramani, 29, a corporate lawyer in Mumbai who has a rare skin condition called epidermolysis bullosa, characterised by skin blisters. Kewalramani speaks of a gendered bias in marriage prospects of the physically-challenged. "While a man, if educated with a well-paying job, expects to marry an able woman, a woman is expected to only marry someone with a disability," she says. Kewalramani, by her own confession, has a "liberal, well-to-do" background, grew up in cosmopolitan Mumbai, went to a regular school and has a mother who pushed her to go out, travel the world, get a career and be independent. She’s just broken up with an able-bodied man she’d dated for a few months. This was her second boyfriend – her first had been a differently-abled man with whom, too, she broke up after a few months. "We found that we our personalities didn’t match," she says.

Romantic liaisons such as Kewalramani’s, with or without marriage in mind, may be fairly common especially among white-collar professionals in cities, but it is practically unthinkable for the differently-abled. As Mantrii found to her cost, her able-bodied male friends were fine with friendship, but were hesitant when it came to romance.

For those from somewhat conservative backgrounds, it’s often their own inhibitions that get in the way. "Unfortunately, most differently-abled people have a poor sense of dignity and self-worth, which gets in the way of finding happiness with a partner. And it’s the parents themselves who are responsible for not giving them a sense of self-confidence. Disabled members of a family are often not invited to come out and interact with visitors – as if they are a shame on the family," says Monga, who also counsels the differently-abled, including couples. "If their own families don’t give them confidence, then how do you expect them to overcome their inhibitions and take a chance with happiness?"

Neha*, a 29-year-old accountant with a real-estate firm, exemplifies such diffidence. Polio-affected and wheelchair-bound, she is apprehensive about marriage. "At home, I have everything to cater to my needs. My family is sensitive and cares for me. I am independent. I don’t know whether another person or family can be as sensitive to my problems. I’d rather be unmarried than find myself in an unhappy relationship. I am lucky my parents agree with me about this," she says.

Women with disabilities may have the dice loaded heavily against them, but men also face constraints when contemplating marriage or finding a partner. Forty-one-year old Ankur Dhir, who runs a small stationery business in Delhi and suffers from muscular dystrophy, says the thought of marriage has until recently been far from his mind. "It’s not just my disability. I first need to earn enough to support a wife and family before thinking of such things," he says. "It was hard because my parents died when I was young and I had little support. It’s only in the last two years that I feel I have the income and a household to offer a partner."

Blame it on the infrastructure

Others like Jatin Agarwal*, a software consultant in a Gurgaon MNC, want a partner who understands them and share the same values. "I’d like to get married to a differently-abled girl because I feel only someone who is differently-abled herself can understand me. But I also would like someone who is educated and independent and will fit in with my family," says Agarwal, who’s registered on several matrimonial sites in his search for a bride.

"The problem, even in cities, is that there are so few places where the physically-disabled can meet and interact," says Kalyani Khona, co-founder of Inclov, a matchmaking app for the differently-abled and people with long-term illnesses. Inclov launched early this year and runs an off-line initiative, Social Spaces, where the differently-abled who’ve registered on Inclov can meet. Khona, just 23 years old, points to her own difficulties in finding a public space with requisite accessibility facilities for the event: "How many restaurants in the city have ramps and toilet facilities for the disabled, or passageways wide enough for wheelchairs? In a place like Delhi, there are just one or two like that."

The discourse on the differently-abled, says Preeti Monga, has until now been largely limited to inclusive schools and colleges and making sure they find employment. "These are important, but more important, I feel, are avenues for social networking. After all, what’s the point if you don’t have friends or a family to come home to?" she asks.

It is needs like these that Inclov are helping to meet. In just nine months, the app has notched up 4,000 registered members and brought about one marriage. Monga herself runs a similar initiative called Fusion, which brings together the differently-abled and able-bodied so they can network for jobs or romance.

These are, as yet, isolated and periodic efforts. Inclov has had six such meet-ups in Delhi, Mumbai, Chennai and Bangalore, while Fusion meets have been held only in Delhi until now. But both Khona and Preeti Monga recognise the initiative needs to reach into small town India to be really effective. Inclov, for one, instituted an "ambassador" programme under which it will support anyone who volunteers to organise a Social Spaces meet-up. Monga, meanwhile, is trying to get the Rotary Club, with its wide network, to support Fusion so the differently-abled can take part in their meetings.

The idea is to get the differently-abled out and about, interacting with those like themselves and others, gaining in confidence. Marriage or romance can follow.

(*Names changed on request)

| Sun, 4 Sep 2016-06:35am , Mumbai , dna

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.

ENIL Griefs with Sagamihara’s Community

 

ENIL Griefs with Sagamihara’s Community

Today, 26th August, Peter Lambreghts (ENIL Senior Officer to whom we said last goodbye yesterday) was going to pay his respect to the victims in Japan, one month after the attack of a man who killed 19 disabled people living in a care centre in Sagamihara – a small town near Tokyo. At least 25 more disabled residents of the care centre were injured. This attack once again brought forward the violations of human rights on disabled people, many of whom live with the threat of abuse and even murder.

ENIL with Peter Lambreghts as one of our lead activists has been continuously promoting the closure of all institutions – now and not later! Disabled people placed in institutions are often deprived of their legal capacity and of their right of choice and control over their own lives. Cases of abuse and neglect happen now and again in institutions in Europe and worldwide. The majority of these cases are not reported, since disabled people are often not aware of their rights and have no access to justice. Usually these cases become forgotten… too quickly. But not by us!

Disabled people have the right to receive support to be able to fully participate in and contribute to society. That can only happen if governments develop and invest in community-based services and promote independent living. An inclusive society is a better society not only for disabled persons but for everyone.

ENIL, in the memory of the Japanese victims and the memory of Peter, reminds once again governments in Europe and world-wide that institutions and care centres where disabled people are placed – often against their will – are in violation of human rights and the UN Convention on the Rights of Persons with Disabilities (CRPD). Article 19 of the UN CRPD recognizes the equal right of all disabled people to live independently and be included in the community.

Our thoughts are still with the victims of the attack, the ones injured and traumatised, and their families. May all rest in peace and may the governments react faster and stronger showing their commitment to making this world a place where human rights are guaranteed.

European Network on Independent Living – ENIL

An India Where the Disabled have a Choice

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Dr. Nirmala Narsimhan

The Roundtable on Digital Access to the Disabled held in Bangalore brought forward many issues related to the topic. Dr. Nirmita Narasimhan, Policy Director, Centre for Internet and Society speaks to Dr. Archana Verma about the problems faced by the disabled while using technology. Being herself partially visually impaired, this is an interview from an expert as well as the personal experiences of a person from the disabled group.

Q-Please throw some light on the issue of the inaccessibility of mobile apps to the disabled, since these have become essential for independent living today.

While mobile apps are fast becoming the preferred and often the only way to access services, these remain unavailable to a large section of the Indian population living with disabilities. This is because they are not designed in a way which conforms to standards of accessibility and cannot be used by persons using assistive technologies such as screen readers. Apps such as Ola, Uber, Big Basket, Make my trip, Flipkart, Myntra and most others are not completely accessible. The inaccessibility varies from total inaccessibility, where the screen reader remains absolutely silent and is unable to give any information to the user opening the app, to partially inaccessible, disallowing persons using screen readers from accessing complete information or from completing transactions. For instance, if one opens Flipkart, one hears a button labelled home page banner and then the screen reader just keeps saying button for whatever is pressed, without being able to give any information on what the buttons are for or what is written there. Similarly, if one opens Myntra, one doesn’t hear any information at all, just a series of clicks, at one point one hears buttons labelled for man, for women, for kids and then when one presses any of those, one is again greeted by complete silence. The Big Basket app also has problems such as unlabelled buttons and fields and makes it difficult to carry out transactions such as changing the quantity, changing the address etc.

It is rather sad that the IT industry fails to realise that persons with disabilities, a group which is the world’s largest minority and account for a very large percentage of our population can potentially be amongst the biggest consumers of these ICT products and services. Consider before the advent of technology, a blind person could not read mainstream books and newspapers, work in routine office environments, shop alone or pay bills, file returns etc. on his/her own. Now, when everything can be done on line and there is technology which can read out and assist blind persons to use computers/ phones themselves, they offer the opportunity to negate the limitations of disability. However, this is not happening because products and services are not designed and developed in compliance with standards of accessibility and universal design, resulting in them being ineffectual or useless for persons using assistive technology. If the apps and websites conform to accessibility standards, Developers need not test their software against each and every disability, which can get understandably complicated, they are automatically accessible to persons with different disabilities in one way or another.

While accessing necessary services and information itself is challenging and often impossible for the disabled, the ability to access and enjoy games like other people is completely beyond imagination, not even something one could dream of said a friend of mine. I asked my friend Dinesh Kaushal, an accessibility expert who heads development of NVDA, an open source screen reader for the blind in India what his experience with the new gaming app Pokemon Go was, which is all the rage nowadays and he said that it was completely inaccessible. There is absolutely no information on the game screen and the Android screen reader Talk Back is absolutely silent. And this according to him this is not uncommon in many gaming apps.

Q- Highlight some of the problems related to the inaccessibility of websites and content to the disabled.

Web site inaccessibility very often hinders a person using assistive technology from accessing information on the internet. A web site can be inaccessible for different persons because of different reasons, depending upon the disability. However, this can be solved by compliance with standards. Inaccessibility of websites also hinders accessing content on mobile phones or affects persons with limited bandwidth or elderly persons.

While progress is being made to make government web sites accessible, this has not yet been completely achieved. In addition, web sites of important services and organisations such as banks, health care, education etc. are often inaccessible. Often a person using a screen reader may come across an important document which is an image file and cannot be read by the screen reader or a deaf person cannot enjoy an audio visual clip because there are no sub titles. Web sites with frequent flashing and flickering, constantly changing pages, images without descriptions and unlabelled form fields and headings, audio visual media content without subtitles, image files of documents without alternate accessible format options continue to populate the Internet. Unless web site accessibility is taken seriously and is treated as a non-negotiable ingredient of a contract for web site development and maintenance, the Internet will continue to be inaccessible.

Q- Can you enumerate the policy and guidelines requiring web site accessibility and the large spread of non-compliance with them?

Although most transactions happen online today, the fact that websites do not conform to universal standards of accessibility render them unusable by persons with disabilities.
The World Wide Web consortium has had accessibility standards for web site accessibility for over a decade now and these have been adopted by many countries around the world. This standard is known as the Web Content Accessibility Guidelines (WCAG) 2.0. India also notified the Guidelines for Indian Government Websites (GIGW) which borrows from the WCAG 2.0 to ensure that government websites are accessible. The National policy on universal electronic accessibility was notified in October 2013 and requires conformance to standards of accessibility. It mentions W3C standards such as WCAG 2.0, ARIA and ATAG and identifies procurement as a route to make electronic infrastructure accessible. It also identifies strategies such as awareness raising, training, research and development of assistive technology as vital to implementation of the policy and allocates different roles to different stake holders, including to ministries, departments, private organisations, etc. Other commitments are to be found in the accessible India and digital India campaigns, commitments under the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which requires government to make all ICT and Internet available and accessible to persons with disabilities and encourage private service providers to make their services accessible, Access to ICTs are also covered under the goals of the Incheon Strategy to make the rights real for persons with disabilities.

Q- Give us some information about the work of the Centre for Internet and Society (CIS) in the realm of the digital and technological accessibility for the disabled.

We are an eight year old organisation. Our accessibility programme works in multiple ways, which include the following –

(A) Policy research and advocacy (initiating and contributing to new and existing policy discussions to bring digital accessibility on the agenda: We started our work on 3 issues:

(a)Website and electronic accessibility – We produced research on what different countries have in terms of policies, guidelines and measures to promote website and electronic accessibility and worked with the Department of Electronics and information technology (DEITy) to formulate the National Policy on Universal Electronics accessibility which was notified in 2013. We also serve on the Implementation committee.

(b) Getting an exception into the Indian Copyright Act to allow conversion of books and other copyrighted works into accessible formats without the need to get permission from copyright holders. We provided research to MHRD on what other countries have in terms of copyright exceptions to promote access to published works for persons who are blind, have low vision or other print disabilities, we carried out a right to read campaign around India, provided submissions to the standing committee and finally were able to positively influence, along with other NGOs, the amendment to the Copyright Act in 2012.

(c) Aiding the negotiation of a Treaty at the World Intellectual Property Organisation which would facilitate international sharing of books for persons with print disabilities. We attended the negotiations at Geneva from 2010 and are a permanent observer there now, intervening and providing research advice on various issues. The Marrakesh Treaty to Facilitate Access to Published Works for persons who are blind, visually impaired or otherwise print-disabled was concluded in 2014 and India was the first country to ratify it. The 20 ratifications required to bring the treaty into force just got concluded on June 30th 2016 and the treaty will come into force from 1st September 2016.

(d) We also worked with the Universal Service Obligation Fund of India to launch a pilot scheme to fund projects for persons with disabilities in rural areas.

(e) Apart from the above, we have produced global reports with international partners like the International Telecommunication Union and G3ict on topics such as mobile accessibility and produced research which we sent to relevant government agencies on topics such as banking and financial inclusion, emergency and disaster management for persons with disabilities, accessible broadcasting and so on.

(f) We are implementing a project to develop text to speech for several Indian languages using an open source speak synthesiser called e-Speak and enhanced working of NVDA an open source screen reader which works with English and other Indian languages. We have also carried out several trainings on this software around the country.
We also provide advice to governments and organisations in other countries on ICT accessibility related issues. We have also organised trainings on web accessibility and other topics as may be required.

Q- What kinds of challenges are faced by the CIS in its work?

Limited resources – very few donors fund the kind of work we do although no one denies the criticality and usefulness of it. Neither do we fall within the bracket of a traditional organisation serving persons with disabilities, nor is accessibility as marketable a topic as say something like privacy and cyber security, hence to have a team which can actively carry on this work of research and advocacy, constantly responding to policy developments, attending meetings is very difficult and we are not able to do the kind of work we want.

Q- What kind of vision of empowerment would you propose for the disabled through digital accessibility? How can this vision be achieved?

My Vision- Every person with a disability in India is able to access the Internet, content and facilities through an ICT enabled device, be it computers or phones; where this access is unhindered by barriers and is instantaneous, not retrospective. Further, I speak for an India which is inclusive in the complete sense, i.e. accessibility standards are part of mainstream standards and Universal Design is the standard approach to creations and developments of all kind and not where separate considerations need to be made for the disabled on specific products and services. Where a person with a disability has a choice, as do the other citizens and not where they are given an option; they have access to the world at the same time on the same terms; where there is true equality and we live a life with dignity and pride.

How Can We Achieve It?

India has already taken certain steps to show her commitment to accessibility –

We have ratified the UNCRPD, are part of the Incheon Strategy to make the rights real for persons with disabilities and are in the process of passing a new Rights of Persons with disabilities legislation. We also have a National Policy on Universal Electronics Accessibility, Guidelines on Government Websites, the Accessible India and Digital India campaigns and the Smart Cities Mission. There is ample opportunity and scope for ensuring accessibility is implemented to give complete effect to these. Some of the areas where action can be taken include:

1. Web site accessibility should be taken up immediately since it affects access for all on using different platforms. The plan can identify number of web sites and different stakeholders and the time lines by which they are required to make their web sites compliant. Both self-certification as well as regular audits should be carried out to check for compliance.

2. Public Procurement is another critical tool in the hands of the government to ensure that all public infrastructure and all facilities/ resources/ products/ services procured out of public money or for the consumption/ use of the public should be made accessible. This is increasingly being adopted in countries around the world. India has a draft procurement bill, several organisations serving the disabled have given a request for the inclusion of accessibility considerations within the procurement bill, we hope they will be taken seriously. By including compliance with accessibility standards as part of performance criteria in all government contracts and calls for proposals and contracts for development and maintenance of products and services, we can ensure not only that web sites etc. become accessible, but that competence is generated in the market to create and market accessible products and increase choice in the market for persons with disabilities.

3. Government ensuring that accessibility requirements are integrated in all government schemes and programmes and accessibility should be considered no longer a matter of choice, but of necessity. There are budgets for different ministries and agencies, there should be a mechanism to evaluate that all the budget set aside for meeting the needs of persons with disabilities are expended meaningfully and not accumulated or go back to the main kitty unspent. There should be proactive disclosure on the part of all government agencies on their spending on accessibility/ disability and they should solicit advice from persons with disabilities and accessibility experts who are part of the committee to review budget spending.

4. Development of appropriate technologies- we need to ensure that enough resources are pumped towards creating our own research and development community to support development and maintenance of assistive technology that caters to needs of specific groups. Open source solutions are desirable for a country like India because of the opportunity they offer for deployment, customisation and improvements.

5. Accessible Smart Cities- The Smart Cities Mission should immediately ensure that their advisory panel includes accessibility experts and that the smart cities which emerge as part of this initiative are inclusive- this is the ideal opportunity to build an accessible city, universal design should be the basic principle on which these smart cities are developed; if this is not done, then there will always remain two worlds- one for the world at large and one for persons with disabilities, and the disparity between the two will always continue.

6. Finally the most important advice I would reiterate is the inclusion of persons with disabilities across all work of the government – only then will the accessibility perspective be represented and taken into account everywhere. Otherwise we may have a situation where accessibility is either missing, or where projects are being implemented to aid the disabled, which are totally meaningless or inappropriate and only serve to waste precious resources, time and effort.

Q- What measures do you suggest for making digital accessibility available to the disabled people across the divides of class, gender and more developed and less developed regions?

Digital accessibility should be implemented at the levels of content, user interface and end user device. Hence accessibility of documents and information on the Internet should conform to standards of accessibility, such as EPUB 3.0, html etc.

User interface-WCAG 2.0 for websites is a must for any device to function effectively. Assistive software must be completely accessible. For instance, it is not uncommon to find that an ATm which is termed ‘accessible’ actually needs the input of a sighted person at some stages of the transaction while some other points are completely prompted through audio.   In such a case, the blind still cannot use this.
Schemes under the USOF and others may be used to provide devices and connectivity to persons with disabilities in rural and far flung areas and also targeting specific user groups such as women. For instance a project under the USOF to promote women entrepreneurship in rural areas by providing them with a mobile phone can easily be replicated for disabled women. They could be funded for initiatives such as operating public internet kiosks or public phone booths etc. Schools in villages could be provided with computers fitted with assistive technology (hardware and software as may be required) s that disabled children and teachers have access and exposure to technology.

Providing mobile phones to all persons with disabilities will go a long way to open up the world of books, information, communication and access to emergency services to persons with disabilities.

Common Services Centres throughout the country are an excellent way of reaching persons with disabilities and providing them access to technology. By providing assistive technology on computers there, which is not at all inexpensive if one were to use free and open source software such as the NVDA screen reader and one trained person to impart training to the disabled, who can also be a person with a disability, we can make a lot of progress in terms of both building trained capacity and providing access to technology for persons with disabilities. Private employers and organisations also have a critical role to play in promoting accessibility for the disabled.

DQINDIA Online

Reforms and the disabled

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Javed Abidi

The history of codification of the rights of the disabled coincides with the era of reforms.

Any assessment of the economic reforms of the past 25 years could well do with some understanding of their impact on people with disabilities in India. Indeed, in view of the negligible levels of participation of people with various impairments in economically productive activity, the influence of these sweeping policy changes would seem at best minimal. In the event, even the staunchest critic of liberalisation would have to acknowledge that the greatest legislative and policy changes since Independence that affect such a large section of our population have been initiated in the post-privatisation phase. A plausible explanation of this post-protectionist paradox may be found in the need for greater regulation under more market-oriented conditions.

Codifying rights for the disabled

Most curiously, the history of codification of the rights of people with disabilities coincides more or less with the commencement of the era of economic reforms. Even though legal guarantees enshrined under the Constitution were read into judicial and executive decisions during earlier decades, they were notably few and far between, informed largely by an ad hoc approach to addressing issues, or at times a spillover from an activist judiciary.

It was the landmark Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, over four years after the reforms, which stipulated specific provisions concerning equal opportunities to basic education, employment, and accessibility. Every policy advance, or its absence, witnessed since that path-breaking legislation has turned on these three fundamental ingredients critical to a better quality of life. Since the passage of that comprehensive law, the lot of the disabled had moved, one might say, from a mode of thinking akin to the Directive Principles of State Policy discourse, to a more robust, Fundamental Rights approach to matters.

Any serious evaluation of what people with disabilities have gained in these past 25 years would probably have to begin with showcasing the political will India’s leadership displayed to generate the very tools to arrive at such an independent and impartial assessment. That was the bold decision the National Democratic Alliance government took to canvass disabilities in the 2001 decennial population census. The real import of the measure becomes apparent when we consider that the 1981 census was the lone exception to the otherwise routine exclusion of this category from the countrywide exercise since Independence.

As per the 2011 enumeration, India is home to 26.8 million people with disabilities, whereas other estimates put the figure at about thrice that number. Census 2011 also shows that 54.5 per cent of people with disabilities in India are literate — a 5.2 percentage point improvement over the previous decade.

Jobs and the open economy

Under liberalisation, employment opportunities have expanded into the private sector, almost unthinkable hitherto. Employers such as ITC, Lemon Tree Hotels, Mphasis, Wipro, and so many others have seen the economic wisdom behind playing on the strengths, rather than the impairments, of our manpower. Notable here are also the equality and diversity norms that the corporate sector is beginning to incorporate in its hiring practices. It would be hard to overlook the direct benefits flowing from the adoption of an open economy in these respects.

In the arena of state employment, the more industrious and enterprising among the disabled have, aided by the Supreme Court’s proactive interpretations of the equal opportunities provisions in the 1995 law, entered the corridors of the administrative services. There are athletes with disabilities who have brought laurels to the country. Access at polling booths seems to have become almost irreversible since the apex court’s landmark 2004 ruling stipulating easy access through ramps. The greater visibility for disability-related concerns in our media is also part of this broad picture of inclusion, howsoever restricted.

The Government of India has ratified the UN Convention on the Rights of Persons with Disabilities and corresponding domestic legislation is in the making. Prime Minister Narendra Modi’s flagship initiatives such as the Sugamya Bharat Abhiyan — designed to bridge physical barriers — are encouraging signs. Yet, they cannot conceal the impatience among disabled people with the glaring disparities that stare us in the face every day.

The census and other data discussed above in fact capture this dismal reality. Of the literate among the disabled, only 8.5 per cent boast a graduate degree, as per the 2011 census. A mere 21.1 per cent of Indian schools adhere to inclusive education for children with disabilities; just 1.32 per cent of teachers have been equipped with the relevant special skills training. This finding of a survey by the National Council of Educational Research and Training points to the challenges in relation to employability. As much as 73.9 per cent of disabled people in the employable age are either non-workers or marginal workers.

These are the numbers that should worry us, and prod us into action. Women with disabilities are most vulnerable to exploitation, as also people with psycho-social impairments and those hard of hearing. The revised National Building Code of India and the corresponding revision of State bylaws can potentially break many of these barriers provided elements of universal design are incorporated.

Javed Abidi is Honorary Director of the National Centre for Promotion of Employment for Disabled People and founder of the Disability Rights Group.

Hindu