No Piecemeal Change Can Fix Our Terrible
Disability Bill
The new and secretive draft
actually reduces the rights and powers of Indians with disabilities.
By 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 disabilities.
Source : in.news.yahoo.com/no-piecemeal-change-can-fix-our-terrible-disability-bill-061219451.html
