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.

What Making a Murderer tells us about disability and disadvantage in criminal law

February 9, 2016 11.44am AEDT

Those with learning or other disabilities need someone to back them up in the legal system to avoid injustices. Making a Murderer/Netflix

Those with learning or other disabilities need someone to back them up in the legal system to avoid injustices. Making a Murderer/Netflix


The most shocking moments of the true crime documentary Making a Murderer don’t involve its convicted-exonerated-convicted-again protagonist Steven Avery. They depict two police officers gently coaxing a softly spoken teenager to recount his role in a vicious crime.

Viewers of the wildly popular Netflix series know the story: Steven Avery is released from prison after serving 18 years for a rape he didn’t commit, only to find himself back behind bars for the brutal murder of photographer Teresa Halbach. A cornerstone of the prosecution’s case against Avery is the confession of his 16-year-old nephew, Brendan Dassey. The teenager is presented as an accomplice to the murder.

Dassey is described in the series as “learning disabled”, who reads at a “fourth-grade level”. He is interrogated — alone — and possibly coerced by police into confessing to rape and murder. Dassey later recants the statement, both inside and outside of the courtroom. But, ultimately, Dassey is condemned by the dubious confession and sentenced to life imprisonment for Halbach’s murder.

Dassey’s treatment should shock viewers because it shows how the system is skewed against an accused person such as Dassey. It highlights the importance of appropriate supports for people with cognitive impairments in the criminal justice system. This is as relevant in Australia as it is in the United States.

The Australian system

People with cognitive disability are over-represented in the criminal justice system. This includes people with intellectual impairments, acquired brain injuries and mental health issues. Indigenous people with cognitive disability are doubly disadvantaged.

The Sydney-based Intellectual Disability Rights Service has called for support for people with cognitive disabilities when interacting with the police. Without appropriate support, people with cognitive disability may want to please authority figures, or may not understand questions or legal cautions. They may also just want to get out of the police station as quickly as possible.

Organisations such as the Victorian Office of the Public Advocate provide “independent third persons” during police interviews for precisely these reasons. Such support might have avoided the injustice of Dassey’s case.

Disadvantage doesn’t stop at the investigation phase. Court proceedings pose a number of pitfalls for accused persons with disabilities. And it is here that Australia lags behind other jurisdictions. In the United Kingdom and Canada, defendants can be assisted by “intermediaries” who help people with disability understand proceedings and give evidence in court.

Indefinite detention

In Australia, accused persons with cognitive disabilities can be held indefinitely after being deemed unfit to stand trial. A person is deemed “unfit” if a court is satisfied that he or she cannot understand the charges, or struggles to follow court proceedings. This is perhaps understandable given the impenetrable language and alienating formality of modern judicial systems.

“Unfit” defendants are diverted out of the mainstream criminal justice system. They are never convicted of any crime. But that does not mean they walk free. They can be detained indefinitely, in mainstream prisons or secure facilities. Often, they are detained for far longer than any sentence they would have received.

Grave injustices can follow, as the recent high profile cases of Marlon Noble and Rosie Anne Fulton show. Both were found unfit to stand trial. Noble spent ten years incarcerated for a crime it now seems he didn’t commit. Fulton was detained for 22 months on relatively minor driving charges in the Northern Territory.

According to estimates by People with Disabilities Australia there are at least 100 people detained across Australia in similar circumstances; at least half are Aboriginal or Torres Strait Islander.

Numerous reviews and law-reform agencies have recommended changes to unfitness to plead laws. A recently announced Senate inquiry provides an opportunity for nationally consistent reform.

Seeking support and equality

The UN Convention on the Rights of Persons with Disabilities, which Australia has ratified, can help guide reform. The convention promotes a shift away from ideas of “vulnerability” and “specialness” towards equality and accessibility.

From this view, cases like that of Dassey, Marlon Noble and Rosie Anne Fulton are not tragedies of exploitation. They are tragedies of inaccessibility. They are failures of criminal justice systems to cater for everyone. International human rights law – and the fundamental notion of equality before the law – demands “reasonable accommodation”. This includes appropriate support for people with intellectual disability charged with a crime.

Our new research project sets out to develop such supports. Our team of researchers will partner with legal services to create and evaluate support for accused persons with cognitive disabilities at risk of being deemed unfit to stand trial. This will include a focus on support tailored to the needs of Indigenous people with cognitive disabilities.

Because – when it comes down to it – maybe all Brendan Dassey needed was someone to back him up.

The Conversation

Academic rigour, journalistic flair

How has Assistive Technology changed all of our lives?

Assistive Technology formerly known as Adaptive Technology has changed many lives all over the world. Assistive Technology (AT) is defined as any tool, device, product or system that is used to increase, maintain, or improve the functional capabilities of persons with disabilities. AT has been around for a long time maybe as long as man began to make tools. Imagine a cave man adopting tools so that someone in his clan could hunt or protect themselves with one hand instead of needing both hands, thoughtful right?
A.T encompasses many devices developed to assist individuals with disabilities performing tasks that might otherwise be difficult or impossible for them to achieve. This technology can comprise mobility devices such as walkers, wheelchairs, and electric scooters as well as communicative equipment such as hardware, software and peripherals to assist persons with visual, hearing, mobility and speech challenges.
A.T has a long rich history of innovation and people with disabilities, family members and friends looking for solutions to unmet needs. Many A.T solutions that were created for individuals with disabilities have eventually become major innovations for the rest of society.
For instance if we go back in history, the typewriter was created in 1808 by an Italian named Pellegrino Turri. He created the typewriter for his friend Countess Carolina Fantoni da Fivizzono that was blind in an effort to try and provide her with a way to write legibly.
Early Typewriter 

Another great success story is Alexander Graham Bell. His mother and wife were deaf and he was therefore determined to create a device that could help the deaf. As he worked on different ideas he created the telephone. He was granted the first patent for the telephone in 1876. Many other exciting innovations were created by Bell Labs (also known at AT&T Bell Laboratories and now known as the research and development subsidiary of Alcatel-Lucent over the years.
Here is a look at some of the inventions that have changed the world for individuals with disabilities and the rest of society:
Accessible websites allow persons with disabilities to access, interact and manage content from the web. An accessible website also produces positive Search Engine Optimization (SEO) rankings on the internet. Companies pay a lot of money to get better SEO rankings – who knew that when you alt-tag or add text to a graphic on your website it improves your SEO rankings.
Captioning makes audio and audiovisual material accessible and provides a critical link to communication, news, weather forecasts, emergency information, education, and entertainment for individuals that are deaf or hard of hearing. Captioning is the process of converting the audio content of a broadcast or other productions into text and displaying the text on a screen, monitor, or other visual display systems. Captioning is not always about the text or words but also includes sound effects, speaker identification, and music descriptions. It is critical that captions be synchronized and appear at approximately the same time as the audio is delivered.
In today’s world, captioning is seen everywhere including airports, sports bars, fast food restaurants, and gyms to only name a few. Captioning can be used by individuals with limited language proficiency to improve comprehension and fluency. Captions also help to improve the literacy skills of children and adults alike.
Curb Cuts were designed for persons in wheelchairs. Many other people immediately benefitted from the curb cuts including mothers with baby strollers, shopping carts, people that had problems with stairs, skateboarders, bicyclists, rolling computer bags, rolling, luggage and anyone using wheels.
In a recent article by Fast ompany they show how IBM turned billboards into function ramps. IBM’s IBM’s People for Smarter Cities Project by Ogilvy & Mather France, incorporated useful functions into their billboards. One sign actually folds 90 degrees over concrete steps, providing a useful ramp for persons in wheelchairs, people with rolling laptop bags, bikers and anyone else using products with wheels. This solution and other portable wheelchair ramps can be used in developing countries that do not have curb cuts or sidewalks.
IBM’s billboards double as wheelchair ramp
Detectors, Alarms, and Sensors were designed as alerts for persons that are deaf, hard of hearing or for persons with vision loss. Today we use also use these technologies in phone systems, door bells, hotels to help the elderly or people with Alzheimer’s, Autism, Dementia or intellectual disabilities be notified of an alarm, ringing phone or doorbell or many types of sensors.
Now these technologies are also being used in Smart Houses, Smart Phones, Smart Cars, and by the military. Sometimes a person cannot hear the phone ring because they are in a noisy call center or airport. Or it is imperative that we get a message to an aid worker or soldier in the field but we do not want to accidentally disclose their location. These technologies are being used in so many innovative ways to help society it is quite a task to mention them all.
Google Glass holds a lot of promise for persons with disabilities. “Google Glass has a ton of potential to transform lives for people with disabilities,” says Mark Perriello, President and CEO of the American Association for People with Disabilities. “Not everyone has had the good fortune to experience Google Glass at this point. But for those who have, the technology features a number of things that make it really user-friendly for people with disabilities — voice-activated technology, the potential for speech-to-text, face recognition — all of which can help people with a variety of disabilities.”
Google Glass
Kitchen Gadgets: The founder of OXO Kitchen tools created a line of ergonomically designed tools for his wife with arthritis. It was such a big hit that they cannot keep them on the shelves.
OXO Garlic Press
Location Services: Came up with a system to help locate and keep people with Autism, Down syndrome, Dementia, Alzheimer and intellectual disabilities safe. These GPS location tools are now used in cars, smartphones, theme parks, cruises, conference centers, and museums. They are also used by emergency personnel to locate missing or lost people.
Prosthesis developers now work closely with the military to improve the devices to help PwD but also help military. The Exoskeleton was created to help people with spinal cord injuries walk but have major military and corporate benefits. For example, an EXO suit can allow a person to lift thousands of pounds instead of using larger machinery.
This Computerized Exoskeleton Could Help Millions of People Walk Again. ReWalk is a wearable robotic exoskeleton that provides powered hip and knee motion allowing individuals with Spinal Cord Injury walk.
Self Driven Cars Google Driverless Cars are so smart they can drive themselves. Smart Cars of the future will talk to the driver, other cars on the highway, sensors in the road, traffic lights and other sensors and make driving safer for everyone. Cars can now parallel park themselves sensing curbs, cars and other obstacles and objects like pedestrians, bikes, and pets.
Speech Recognition is another excellent example. It is now embedded in many aspects of our world including our cars, phones, computers, tablets, homes, and many other devices. Many businesses today offer voice-activated service options from customer service call centers to technical support.
Speech recognition also helps make driving safer by enabling hands-free dialing for mobile phone users, voice-activated navigation systems, and voice control and search capabilities for in-car radios. The effectiveness of speech recognition today comes out of decades of research by hundreds of scientists and engineers working on statistics, linguistics, semantics, predictive algorithms and audio processing.
IBM Pioneering Speech Recognition
The good news is that science and medical technology advancements are helping people with disabilities see, hear and walk again. In a recent BBC article Cyborgs: The truth about human augmentation reveals exciting technology and scientific advances that are augmenting people’s lives.Exciting times for people with disabilities assuming you have the means to pay for these life-changing advancements. These scientific and medical breakthroughs are changing people’s lives. The problem is that these advancements are out of reach for millions of people. The good news is that we have the funding, knowledge, and the social drive to eliminate many of the barriers.
Bionic Eye

The theme at last years United Nations International Day of Persons with Disabilities 2014 held on Dec 3, 2014 was “Sustainable Development: The Promise of Technology”. The promise of technology has already proven very valuable to the world. Now we need to work together to be sure everyone has full access. Bottom-line A.T is adding great benefit to the world both for persons with disabilities and to society as a whole.

Not so disabled-friendly

The proposed Disabilities Bill is an exercise in haste and expediency

by Ajey Sangai and Manav Kapur

The past few weeks have seen intense criticism of the draft Rights of Persons with Disabilities Bill, 2014. It appears to be deliberately mendacious, paying lip-service to the UN Convention on the Rights of Persons with Disabilities (UNCRPD) while ignoring its basic features. Certain aspects of the Bill as well as the opacity of the procedure through which they were formulated are deeply troubling to those concerned with the disability sector.

India’s ratification of the UNCRPD in 2007 obliges it to bring Indian law in line with the same. The convention marks a paradigm shift in the way disability is conceptualised. It approaches disability through a ‘social’ rather than a ‘medical’ model, recognising that “disability… results from the interaction between impairments and… attitudinal and environmental barriers”. Therefore, a respect for differences and “full and effective participation” is guaranteed. This entails securing the legal capacity of disabled persons to make decisions for themselves, through supported decision-making when necessary. It also requires an examination of the de jure and de facto discrimination against persons with disabilities, which occur due to accessibility barriers and unsupportive environments.

The draft Bill runs contrary to all this. The mere peppering of definitions or provisions with little by way of functional roles provides for greater incoherence rather than a sustained engagement with principles laid down in the UNCRPD. Indeed, the law does not even provide a functional definition of ‘discrimination’ while claiming to prevent it. By not explicitly recognising legal capacity as an express right (as earlier drafts had suggested), but instead laying a “duty on the government”, the Bill seems to perpetuate the medical model of disability, placing limits of presumed incompetence. Under the patronising rubric of “best interest”, the rights of persons with disabilities are critically impaired. Various experts have spoken of their deep unease in defining benchmarks like “40 percent of the impairment” in allowing, among other things, reservation in educational institutions and employment under this Bill. When a person with disability is so certified, s/he is also deemed to be a person with high support need, thus making even the basic concept of support contingent on medical certification.

The approval of ‘plenary guardianship’ typifies the manner in which the Bill runs contrary to the UNCRPD regime. Instead of a ‘limited guardianship’ where a person with disability would be supported and his/her decision-making facilitated, the Bill allows substituted decision-making “when limited guardianship cannot be awarded”. In doing so without sufficient guidance to the courts, it takes away autonomy and agency.

The other major worry is the lack of transparency in the way in which the 2014 draft was created, and its lack of accountability to most of the original stakeholders in the drafting process.

The Bill has had a complicated history. In 2009, the Centre constituted a committee to help it formulate the UNCRPD-compliant law. It included members of government, academics and civil society, along with those who represented a cross-section of disabilities. A consultative process with other disabled persons and organisations culminated in the 2011 draft Bill. In 2012, the social justice ministry made some amendments. However, the 2014 version is at stark variance with both the earlier drafts. The Centre owes an explanation for these changes, as well as the fact that it did not follow a similar consultative process before incorporating them into the Bill. There has been talk of amending the Bill through the addition of a set of 20 non-negotiables. While this seems acceptable in theory, it’s doubtful if it is feasible to do so with such a flawed Bill.

The Bible tells us that the letter killeth, whereas the spirit giveth life. The draft Bill, which claims to be in consonance with the UNCRPD, while at the same time flouting its most significant provisions, stellarly demonstrates this dichotomy. India has yet a chance to enact a law that gives its disabled citizens the right to live a full and rich life. Human lives should not be squandered at the anvil of haste and political expediency.

Sangai and Kapur are Assistant Professors, Nalsar University of Law, Hyderabad

letters@tehelka.com.

(Published in Tehelka Magazine, Volume 11 Issue 9, Dated 1 March 2014)

A hurried disabilities Bill will serve no purpose

The Rights of Persons with Disabilities Bill was introduced in the Rajya Sabha to universal criticism and till now, 16 amendments have been circulated to members of the upper House in an effort to save the Bill. The objective of the legislation was stated as “a Bill to give effect to the United Nations Convention on the Rights of Persons with Disabilities” (UN CRPD). Hence it must be in consonance with the requirements of the Convention to fulfill its primary purpose. The CRPD mandates an absolute prohibition on discrimination on grounds of disability, but this Bill permits discrimination provided it is to achieve any legitimate aim, in clear violation of the UNCRPD!

The UNCRPD prohibits deprivation of liberty on grounds of disability. The Bill cleverly inserts one word to change the guarantee altogether: it says that no person shall be deprived of his or her personal liberty only on grounds of disability. This formulation was rejected while drafting the UNCRPD since it permits the deprivation of liberty when a person with disability is destitute or considered to be ‘dangerous’. For thousands, the addition of ‘only’ could mean being forced to live in institutions for the rest of their lives.

The other core UNCRPD principle that remains to be examined is the right to exercise legal capacity on an equal basis with others in all aspects of life. Presently scores of laws disqualify persons with disabilities from marrying, inheriting, voting, etc. The UNCRPD seeks to offset disqualifications imposed upon people with intellectual, psychosocial and developmental disabilities by recognising their right to live their lives according to their will and preference.

However, the 2014 Bill did not even mention the right to legal capacity. In the amendment, legal capacity has been recognised as an obligation of the government, not a right of persons with disabilities. If the government fails to ensure legal capacity, then the person with disabilities can do nothing but bemoan the poor implementation of Indian laws. Consequently, entitlement of reservations in jobs becomes meaningless for persons with disabilities. If it were possible to make things worse, section 110 of the legislation states categorically that the Bill will not override any existing laws, which means all discriminatory laws will continue to be valid!

However, despite the many flaws in the Bill, people with the newly-included disabilities are pressing for its enactment because these disabilities have been waiting for inclusion in the Act since 1999 and feel they cannot wait any more. This grievance is undeniably genuine. The correct way to address this concern would be to amend the Act of 1995, whether by Act or ordinance to include the long-excluded disabilities.

Let us not hurriedly enact a retrograde legislation for all disabilities, which would be impossible to amend for the next 25 years. In order to correct the injustice of exclusion, let us not create an equality of oppression.

(The author is professor and head, Centre for Disability Studies, Hyderabad)

At a standstill

By: Jayna Kothari

Rights of Persons with Disabilities Bill is not a meaningful improvement on its precursor.

There has been serious opposition from the disability rights movement to the current draft of the Rights of Persons with Disabilities Bill (RPD bill) and the government’s resolve to pass it during the ongoing session of Parliament. I will focus on two main problems with the bill, though this does not mean that it is acceptable in other respects.

The two concerns that I highlight, however, go to the root of the issue of equal protection and full participation of persons with disabilities.

The main drawback of the Persons with the Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act (PWD act), 1995, which is currently in force, is that it defines a person with disability as someone who has 40 per cent or more of any of the seven enumerated disabilities — blindness, low vision, hearing impairment, locomotor disability, mental illness, mental retardation and leprosy. This definition stems from a medical model of disability and is highly problematic.

First, it does not recognise that disability is not just about impairment but about the manner in which the social environment disables individuals. Second, you cannot always diagnose whether an individual has “40 per cent” of a disability — this is especially true for intellectual and psycho-social disabilities. Third, it leaves people with disabilities at the mercy of the state because they have to obtain a disability certificate verifying that they are more than 40 per cent disabled. The new RPD bill unfortunately reproduces this medical model of disability in its definition.

The world over, most progressive laws have adopted definitions of disability that stem from social models that define it as any long-term physical, mental, intellectual or sensory impairment, which in interaction with various other barriers may hinder participation in society on an equal footing with others. The RPD bill adopts this definition selectively — for clauses related to non-discrimination — but where positive benefits are involved, such as reservation in education and employment, a medical definition of “benchmark disabilities” is used. The RPD bill has expanded the number of benchmark disabilities from seven to 18 and has retained the 40 per cent requirement.

These benchmark disabilities include learning disabilities, multiple sclerosis and thalassemia, among others. The benefits under the RPD bill, such as the right to free education up to 18 years of age, provision of reasonable accommodation, 5 per cent reservation of seats in higher education institutions and government jobs, schemes for the allotment of land at concessional rates, and other affirmative action programmes are only provided to persons with benchmark disabilities.

In 1995, when the PWD act was drafted, only seven specific disabilities were listed under it. Now, after 18 years of it being in force, we have realised that there are several others, such as learning disabilities, HIV/AIDS, even dwarfism, which have been recognised as disabilities by Indian courts. If we limit the legal definition to 18 benchmark disabilities, we will eventually be confronted with the same situation as new disabilities are recognised thanks to medical developments.

Even under the RPD bill, HIV/AIDS has not been included as a benchmark disability. Benefits under the bill should not be restricted only to persons with benchmark disabilities. If the bill is passed in this form, the law would have failed to internalise the key message of the disability rights movement — that disability has to be understood from the perspective of a social model and that there cannot be discrimination amongst persons with disabilities.

The other loophole in the RPD bill is that it does not provide for reservation of jobs in the private sector. The bill, which was submitted by the committee set up to draft it had specifically included job reservation in both public and private establishments. Even in the National Federation for the Blind vs Union of India and Others judgment, the Supreme Court, relying on an earlier version of the draft RPD bill, observed that the legislature should ensure 5 per cent representation of persons with disabilities in both the public and private sectors.

The RPD bill, however, does not contain any such provision and merely increases the percentage of reservation in government establishments from 3 per cent, which is mandated in the PWD act, to 5 per cent. Presently, even the 3 per cent reservation in public sector jobs is not being implemented. Increasing it to 5 per cent is merely lip service.

Job reservation in the private sector is non-negotiable if we are to guarantee true equality for persons with disabilities. Employment is one of the main ways in which persons with disabilities can fully participate in society. This will only happen if we also mandate reservation in the private sector. This will, in turn, create demand for accessible transport, roads and reasonable accommodation. Unless these two provisions are seriously reconsidered, the RPD bill will just be old wine in a new bottle.

The writer is with the Centre for Law and Policy Research, Bangalore
express@expressindia.com

iNDIAN EXPRESS 12th February 2014

Will the new Bill benefit the freshly included disabilities?

Amita Dhanda[1]

The Rights of Persons with Disabilities Bill 2014 has got caught in the crossfire of different disability groups. Whilst one body of opinion holds that the Bill is regressive, incoherent and needs to be heavily reworked before it can be enacted; the other perspective is that the Bill may not be perfect but at least it provides something to those who are not included in the 1995 Act. People propounding the something is better than nothing logic, also pertinently point out, that while persons with disabilities who are included in the 1995 Act can afford to wait, that luxury is not available to them.

Thus, the strongest case for passing a less than perfect legislation comes from persons with impairments which are not covered by the 1995 Act. Significantly, the Bill of 2014 has changed the definition but other provisions, which need to be incorporated in theBill, to ensure that the freshly inducted persons with disabilities obtain all the entitlements (including job reservations) have not been included. It is submitted that without those provisions being included the expanded definition is going to be of little benefit to the freshly included disabilities.

To explain: the contract, employment and service laws question the legal capacity of persons with psychosocial , intellectual and developmental disabilities. These laws in both rule and practice hold that persons with the aforementioned disabilities do not possess the cognitive capacities to enter into contracts, or sign employment agreements or be recruited into service. The new Bill does not unequivocally recognize that all persons with disabilities have the capacity to act on an equal basis with others in all areas of life. The original Bill accords no recognition to legal capacity and the proposed amendment requires the “appropriate Governments to ensure that the persons with disabilities enjoy legal capacity on an equal basis with others, in all aspects of life to have equal rights as any other person before law”. This formulation makes legal capacity not a right of persons with disabilities but a duty of the appropriate government. Thus the legal capacity has been made dependent on how effectively the government ensures it; whereas what was required was for the statute to state that notwithstanding anything stated in any other law all persons with disabilities have legal capacity on an equal basis with others in all aspects of life. Without an unqualified recognition of legal capacity, all the freshly included disabilities will not be able to obtain the benefit of job reservation. This vulnerability is further enhanced by the fact that the legislation permits departments to seek exemption for particular posts from the purview of reservation. In the face of the social stigma faced by psychosocial, intellectual, developmental and multiple disabilities, it is not great leap of imagination to deduce which are the disabilities that would most face the axe of exemption.

Keeping in view the large scale diversity which exists within the freshly included disabilities be it autism or multiple disabilities, it was necessary that the denial of reasonable accommodation should have been recognized as discrimination. This was needed because unlike accessibility which speaks about how the built and virtual architecture, goods and services, transport and communication become disabled friendly; reasonable accommodation addresses the needs of individual persons with disabilities be it a particular kind of work furniture or flexibility of time and workplace. The Bill of 2014 only places an obligation on the appropriate government to ensure reasonable accommodation. It confers no right on the person with disability. The question of reasonable accommodation has been a hugely disputed question even in developed countries. The American disability jurisprudence is full of cases on the meaning of ‘undue burden’ and a ‘disproportionate cost’. This was in the context of an Act where the applicability of the concept was clearly provided. In the Bill of 2014 on the other hand the applicability of the principle itself has been rendered disputable. Reasonable accommodation has been defined but very sparingly used in the legislation. The right to education chapter is the only place where the legislation speaks of reasonable accommodation (and there too, as something the state shall ‘endeavour’ to provide, not a right); otherwise it only mandates appropriate environment. There is no mention of reasonable accommodation in the employment chapter. Without recognition of the rights of legal capacity and reasonable accommodation reservation one of the strongest rights created for the freshly included disabilities has been placed on shaky foundations

The non recognition of the right to legal capacity and reasonable accommodation in the Bill of 2014 is further endangered by the fact that the new law does not override existing disqualifications in other laws. Instead it states that the provision of the law will be in addition and not in supersession of existing laws. This means that all the existing laws by which persons with disabilities are disqualified from exercising their rights to contract would survive, and in the face of those provisions, the freshly included persons with disabilities would be hard put to avail their new work and livelihood entitlements.

The above analysis shows that the rights of the freshly included disabilities would be disputed and not self executing. With such a large number of unclear provisions, persons with the freshly included disabilities would need to continually activate the courts to obtain their entitlements. Since the equality and non discrimination provisions of the legislation are most meagre, what interpretations the courts will make, could be anybody’s guess. . It is important to appreciate that the task of creating positive jurisprudence under the persons with disabilities Act 1995 was an uphill task. Before the good judgements started to be pronounced a large number of regressive ones were also made. The Courts have helped save a weak 1995 Act but the process of strengthening the law with the aid of the courts was not an overnight affair. In the face of this reality it is pertinent to ask whether it is desirable to go ahead with an evidently flawed law and then take the next 20 years to strengthen it by using the courts; or bring out a sound law and then use courts wherever required to ensure that it is duly enforced.

It could be contended that even if the rights parts of the 2014 Bill is weak, inclusion would assist the freshly included disabilities to obtain benefit of the programmatic part of the legislation. With the number of chronic conditions that have been included a strong scheme of medical insurance was required. However there is no such mention in the Bill. The jurisprudence built under the 1995 Act has not restricted the benefits of reservation in higher education institutions to the specified disabilities alone and same holds for disabilities acquired at place of work. Thus the social security schemes are the only possible benefit which the freshly included disabilities may obtain; but the question is whether the possible benefit could offset the costs that the community would incur with an incoherent law? If the people for whom the case for accepting a weak law is being made, would make no real gain, then is it fair to ask them to accept a deficient law even when models for self enforcing strong laws exist.


[1] Professor of Law and Head Centre for Disability Studies, NALSAR , University of Law, Hyderabad.