No Piecemeal Change Can Fix Our Terrible Disability Bill

Amba Salelkar

In December 2013, protests erupted all over the country to demand the speedy passage of the Rights of Persons with Disabilities Bill (RPD Bill), which had just received the approval of the Cabinet. Senior disability rights activists led protest rallies and held meetings with politicians in the ruling UPA government as well as in the Opposition parties who all rallied behind the Bill - one whose contents were known to absolutely no one outside the Ministry of Social Justice and Empowerment and the Cabinet.

In good faith, everyone believed that the Bill would not have changed substantially from its 2012 version - available on the ministry's website - which was drafted following detailed consultations with persons with disabilities and organizations working with them.

Simultaneously, attempts were made to find out the contents of the Bill after press reports relayed the assurances of a 'guaranteed no questions asked' passage of the Bill. Discomfort began setting in when these attempts were met with hostile responses, and access to its contents was also barred under the Right to Information Act. The disabilities movement was shocked when the Bill was eventually leaked to find that it was not even close to the draft that the same ministry had proposed just 15 months ago.

It is impossible to understand the problems with the Bill without delving slightly into its history, and the history of the disability rights struggle in general. India has a huge population of persons with disabilities, possibly greater than the World Health Organization estimate that 15 percent of any nation's population is disabled.

Two-thirds of the world's blind are estimated to live in India, and conditions such as polio and malnutrition in both mothers and infants have also been linked to the causes for many disabilities in India.

Even so, there was no legislation on disability rights till 1995, and for a long time, psychosocial and intellectual disabilities were the only ones which fell under the purview of any laws  in India. This has a long history, beginning with the Lunacy (Supreme Courts Act) of 1858, under which there were the first targets of institutionalization - a practice unheard of in India until the British era.

The Indian Lunacy Act of 1912 defined "lunatics" as "idiots or persons of unsound mind", and prevailed as the sole statute on persons with disabilities for nearly 80 years. For persons with disabilities in the throes of poverty, the legal system mostly treated them as criminals. Persons with disabilities caused by leprosy or those who were forced to beg for a living found themselves incarcerated in Beggars' Homes for indefinite periods of time under anti-beggary statutes.

Not that disability rights were recognized world over. The Universal Declaration of Human Rights, in 1948, did not recognize disability rights despite the fact that the first victims of the Nazi death camps were in fact children with disabilities in accordance with "Action T4". In fact, it was only in 2001 that the United Nations actually began discussions on drafting a convention on the rights of persons with disabilities, though many smaller international covenants had strengthened disability rights along the way.

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, based on the "Proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region", marked a cornerstone for the disability rights movement in India. The initial enthusiasm soon gave way to frustration, however, when the best provisions of the Act were thwarted in practice.

Reservations in the government sector were being obstructed by various conflicting office memoranda, and would only be resolved by the Supreme Court nearly 18 years later. There were no provisions enforcing accessibility requirements in public places. And women with disabilities, a slowly emerging force, began voicing the fact that they weren't being mentioned at all.

India had moved on to attempting to set standards at the international level, and was one of the 27 countries in the working group to draft the UN Convention on the Rights of Persons with Disabilities. India ratified the UNCRPD without reservations.

This was despite the fact that according to the National Centre for Promotion of Employment of Disabled People (which maintains the UNCRPD India website) there were two areas in which India's attempts remained unsuccessful - one was in involving parents associations, and the second was in having a special focus group on persons with multiple and severe disabilities.

Though evidently not popular world over, this approach was extremely rooted in domestic law. In 1999, efforts by various NGOs and parents' organizations led to the formation of the National Trust, governed by its own Act. The Trust manages a Rs 100-crore grant from the central government and uses the interest from it for activities related to the four disabilities it deals with - autism, mental retardation, cerebral palsy and multiple disabilities.

By then, the mental health care regime had also changed in India, and the 1987 Mental Health Act limited the definition of "mentally ill" to "a person who is in need of treatment by reason of any mental disorder other than mental retardation." The "mentally ill" were also recognized as persons with disabilities under the 1995 Act.

The one thing the "mentally ill" and persons under the National Trust Act do share, however, is the requirement of a legal guardian. Under the 1987 Act, the person must be shown to be incapable of taking care of himself and of managing his property in order for a guardian to be appointed. According to the National Trust Act, the law presumes a person under the Act requires a guardian unless a local-level committee finds otherwise.

These fetters on the exercise of "legal capacity" have had a myriad consequences, one of which is a circular issued by the Reserve Bank of India allowing persons falling under these laws to only have bank accounts opened and operated by certified guardians.

Two years later, the Ministry of Social Justice and Empowerment constituted a committee for the drafting of a new CRPD-compliant Disabilities Bill. This committee was chaired by Dr Sudha Kaul, and included members with various disabilities and from different organizations. Two members resigned on the grounds that the right to full legal capacity of all persons with disabilities was not being seriously considered by the committee, which was also comprised of parents' organizations that voiced reservations about the recognition of this right.

The committee submitted its draft compiled by the Center for Disability Studies, NALSAR University of Law, Hyderabad, in June 2011. The Ministry responded in September 2012 with the revised draft legislation. Although many groups expressed their views against some provisions, the Ministry did not officially invite comments, and the draft was circulated - among states in April 2013, and among other Ministries in August 2013 - before being finalized in its current form.

The RPD Bill violates everything within the UNCRPD and without. Persons with disabilities covered under the Mental Health Act and the National Trusts Act, have, in a way, been let off easily, because the Bill doesn't change their already marginalized position much, if at all.

The 1995 Act was silent on many rights, so one could still argue that those rights existed somewhere in expansive interpretations of Article 21 of the Constitution of India, perhaps. And many of these rights have been achieved through case law before. The Bill, however, threatens to negate all of the achievements of judicial precedent by its curtailing of rights.

In 2009, the Supreme Court allowed a girl with intellectual disabilities to continue her pregnancy after she was raped while staying at the Nari Niketan in Chandigarh. The court made the distinction under the 1971 Medical Termination of Pregnancy Act between "mental retardation" and "mental illness". The Act allows for non-consensual termination if a woman is "mentally ill", which in the post-UNCRPD world is discriminatory.

In any case, the court held that as she was "mentally retarded", and not "mentally ill", she could still exercise legal capacity regarding her reproductive choices. The Punjab and Haryana High Court had earlier held that her desire to keep the pregnancy was irrelevant as the State, as her guardian, had decided on her behalf to terminate the pregnancy.

Now, Section 106 (f) of the Bill allows for termination of pregnancy if a woman is "severely" disabled, even without her consent, as long as there is certification from a registered medical practitioner and the consent of her guardian. What is "severely" disabled is not mentioned. As statute will always trump case law, now, the reproductive choices of all women with disabilities stand threatened.

This is just one example of the inexplicable contents of the Bill, and similarly bizarre provisions can trace their roots to one source - the protectionist charity model based on medical understandings of disability that the Indian bureaucracy cannot tear itself away from.

Meanwhile, the world's understanding of disability has moved from the medical model of disability that focuses on impairments of the body and mind and therefore the need to "fix" or "normalize" them, to the social model of recognition, removal of barriers, and empowerment. In India, the position in law of persons with disabilities who were not incarcerated was largely relegated to being within the charity model, under which regular donations and grants were made available to persons with disabilities by royalty, and later, state governments. 

The drafters of this Bill might pat themselves on the back for, say, the provision of "five percent reservation in allotment of agricultural land and housing in all relevant schemes and development programmes, with appropriate priority to women with benchmark disabilities". It is doubtless beneficial - from a charity approach.

When seen from the empowerment approach, it fails. People denied legal capacity cannot execute ownership deeds. They have not been empowered to do so under the Bill. Women with disabilities face double discrimination - on account of gender and disability. They have not been empowered to overcome this under the Bill. The net effect? Very little.

The same approach has been taken with regard to employment. The government will decide what job a person with a certain disability can do and relegate those who are appointed under the reservation quota to those jobs, thus protecting them from having to do a job which may be unsuited to their disability.

Of course, there will be some jobs for which it is impossible to accommodate certain disabilities. For the others, the UNCRPD's principle of reasonable accommodation - necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case - could be used to make so many more jobs accessible to persons with disabilities, instead of ghettoizing them.

"Reasonable accommodation" has been ignored in provisions relating to employment, and has been replaced by the undefined "appropriate environment". The underlying sentiment, obviously, is that the government is doing its duty by providing some employment to some persons with disabilities who enter under these quotas, and that adjustment beyond that is unnecessary. The grant of employment therefore, is charity. The right to be able to work at a post of one's choosing and that one is qualified for - that's empowerment.

Under the Bill, the rights are to free healthcare within the vicinity for people of certain income levels, the right to priority in attendance and treatment, and the right to barrier-free healthcare infrastructure. It seems great to look at, but a comparison with the UNCRPD provisions will reveal how the rights of persons with disabilities could involve much more.

Right now, the practice of obtaining informed consent from patients before procedures is invariably sought from the guardian. Obliging medical professionals to give information regarding treatments and procedures to persons with disabilities in formats they can understand, and information that they can use to make their own decisions, is what the goal should be. Not the limiting of "accessibility" in healthcare to barrier-free environments.

Eliminating discrimination against people with disabilities when it comes to provision of health and life insurance would do more to improve their access to quality healthcare than forcing them to take treatment in the vicinity because it is subsidized. It would enable people with disabilities to make their own choices without excessive concern for financial repercussions.

The RPD Bill does not seem like something drafted by persons with disabilities themselves, which is what it was meant to be originally. It seems to have been hastily compiled by bureaucrats in the ministry who have no understanding of what these rights, crystallized in so many conferences and consultations held all over the country, mean for the persons with disabilities who were part of them. Ironically, the sequence of events is forcing the disabilities movement to turn ableist.
With time running short before the Bill is introduced, only those stakeholders who are able to readily access the internet and computers, who are able communicate in English, who are able to run to Delhi, who are able to protest on the streets, who are able to think quickly and coherently in order to draft amendments on the fly, who are able to sit for hunger strikes without damaging their health, and unlike me, are not afflicted by laryngitis and severe anxiety - are able, and are thus able to attempt to enforce changes to the Bill.

Whether these amendments, sought to be pushed through to the Cabinet, reflect the aspirations of the lakhs who were given the hope that this would be their Bill is anyone's guess - as is the question of how many of these amendments the Cabinet will actually accept. As is, in fact, the question of whether piecemeal changes can transform the Bill, since it is the very approach that is flawed, not stray phrasing. In the meanwhile, thousands of other persons with disabilities are unaware of this unexpected turn of events, and by the time the information can be made accessible to each of them, the Bill may already be passed.

Despite the fact that such important legislation was up for introduction, the Minister for Social Justice and Empowerment, Kumari Selja, deemed it fit to resign from her post to 'work for the Party' prior to elections, and additional charge of the Ministry has been given to the Minister for Railways, Mallikarjun Kharge.

The disinterested approach of the government is not surprising: persons with disabilities are not considered a vote bank. The Census grossly underestimates their numbers, seeing them as forming around 2 percent of the population. And in many cases, they cannot vote - the latest Delhi elections, as well as a recent RTI application filed by Dr Satender Singh, show that accessible elections are not something to look forward to this summer.

This is baffling, because having a disability is not like being a part of any other minority. As Dr Kalpana Kannabiran pointed out on January 23, 2014 at a keynote speech at the Hyderabad Central University campus, ability is temporary, it is arbitrary, and it is a matter of chance. Unlike other minority groups based on religion, caste or economic strata, the only thing keeping someone without a disability from falling under this law is the general uncertainty of life.

An accident, a hereditary condition or even excessive stress can suddenly land someone in the clutches of a law that, until yesterday, they had overlooked. And the last thing one should have to be confronted with when suddenly facing a disability is a law that creates additional ones.

Amba Salelkar is a 2006 graduate of the National Law School of India University, Bangalore, who works with the Inclusive Planet Centre for Disability Law and Policy, Chennai, founded by the late Rahul Cherian. The Centre focuses on legal analysis and advocacy on behalf of persons with disabilties.