in the disabilities rights movement in India are an irate lot...and rightfully so!
They're appalled and disappointed at the Rights of Persons with Disabilities
Bill 2014 (RPwD) - a legislative proposal that claims to be based on the United
Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which
India ratified in 2007.
Standing Committee Report on the Bill was made public on the May 5 this year
and ever since, there has been apprehensions and disappointment on the overall
format. Before we go into the nitty-gritty of the Bill, let's take a look at
what UNCRPD says about persons with disabilities (PwD).
1 of the convention says "persons with disabilities include those who have
long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their
full and effective participation in society
on an equal basis with others".
It also aims to "promote, protect and ensure the full and equal enjoyment of ALL human rights
and fundamental freedoms by ALL persons with
and to promote respect for their inherent dignity".
the spirit of this definition is crucial as it addresses disability not as a medical problem but a social issue
. It implies
that disability, per se, is not the challenge. It's the unreasonable and
discriminatory environmental and attitudinal barriers that prevent them from
realizing their full potential.
Where the Bill Fails?
Bill, however, though touted as being inclusive of all UNCRPD guidelines, fails
spectacularly in not only defining
persons with disabilities
but also in its lack
of understanding of the inclusive nature of the convention and hence, all-set
to fail in its implementation. There are many areas in the Bill that needs
restructuring but for the sake of focus, only a few core concerns
are addressed here.
begin with, the Bill defines PwDs as "persons
with long-term physical, mental, intellectual or sensory impairment which
hinder full and effective participation in society equally with others". The relevance
of socioeconomic barriers
in the UNCRPD, finds no place in the Bill.
This is a huge drawback as it brings the focus back on disability as an ailment
that needs medical attention. It implies that persons
with disabilities cannot enjoy
equal rights in accessing resources of any kind, as it's their 'medical
condition' that prevents them from doing so and not the social construct.
40% Disability - What It Means
the Bill also limits the scope of entitlements and benefits to those who have
more than 40% disability
. As a
senior mathematician in Chennai puts it, such a benchmark is "simply stupid". V.
Sunder, the prestigious Bhatnagar prize-winning mathematics professor from the
Institute of Mathematical Sciences, has Multiple Sclerosis
, and is a wheelchair
user. "I don't understand what 40%
means. You cannot quantify or codify disability like this. A person's
disability should be assessed on the basis of functionality and cognition."
World Health Organization has an exhaustive list of parameters to assess a
person's disability. Called the International Classification of Functioning,
Disability and Health (ICF), it takes disability within a social and
environmental context, for a classification of health and health-related
drafted the Bill should take a look at ICF...the assessment rules are very
clear," explains Smitha Sadasivan, a member of the Disability Rights Alliance
(DRA), Chennai. "The test of assessment for disabilities in India is ghastly.
For example, 'mental retardation' and 'autism' is tested based on certain
asinine questions like asking the child or adult's name, age or color of the
sky. If the answer is not correct, the questioner can certify according to his
or her understanding of the disability, which eventually leads to a lot of
argument that Gita Srikanth entirely concurs with. As the Founder-Director of
We CAN, an NGO for children with autism spectrum disorder, Gita finds '40%
benchmark' absurd. "Who decides if someone is more than 40% disabled? Children
with autism, for instance, have a different mode of expression, which differs
with each kid. So on what basis can anyone assess a disability?"
Prithiveeraj, a senior therapist at We CAN, adds, "Let's say a child with
autism is certified as having less than 40% disability but has trouble standing
in the queue at the airport. Parents can request airport authorities to not
make the child wait, and the latter may genuinely want to acquiesce to the
request. But because of the benchmark, authorities maybe legally bound to deny the
parent. This is the problem with quantifying disability - it leaves room for such
'No Guardianship in this Law, Please!'
the biggest grouse of the Indian disability sector, and their divided stand on
the same, stems from another crucial aspect of the bill. Nothing gets tempers
flaring with strong opinions as much as the mention of 'Legal Capacity'. As per
the UNCRPD guidelines, persons with disabilities enjoy full legal rights "on an
equal basis" with others.
the Bill provides for guardianship for
people with certain mental (psychosocial) disabilities
; it says that PwDs,
especially those who are deemed to be mentally ill and
are incapable of taking care of themselves or take any legally binding
decisions on their own, require a
guardian who has the power to take any decision without their consent. This
means that they can be forced to submit to treatment, undergo termination of
pregnancies and even be incarcerated in an institution against their will.
does not understand what 'unsound mind'
means. "Do you take decisions
with a 'sound mind' every time? If it's an individual's ability to make an
informed decision, then it should not be limited to PwDs. A disability alone does not indicate a lack of capacity
," she says.
fact that a guardian does not require 'consent' of any kind is a huge human
rights violation, says Rajiv Rajan, coordinator for Chennai-based NGO Vidya Sagar's
Disability Law Unit (South). "According to the Bill, a person with high-support
needs has to have a guardian to open a bank account, cannot withdraw salary
from the bank (only a guardian can do that); if he or she signs a job contract,
it can be declared 'null and void', as that person does not have any legal
rights. In such a scenario, under the proposed legislation, an individual's
right to marry could also be challenged. So where's the question of human rights when the law doesn't consider you
as a 'person'
there is no avenue in the Bill
through which a person with disability, even one with high support needs, can appeal against a guardian or guardian's
. "Every single human being requires support of some kind. Nobody
can function in a vacuum," adds Rajiv. "The only difference for a person with
disabilities is that our support needs vary. So it's more pertinent that the
law treats us like a person with certain specific needs; a guardian would only
serve to take away our voice."
There are others in the disability sector that echo
Vaishnavi Jayakumar, co-founder of The Banyan, a
Chennai-based NGO that offers mental health services to the marginalized, and
member of the DRA, opines that putting 'guardianship'
in any form
(plenary or limited, substituted or supported decision making,
etc) in this act will negate whatever
rights a person with disability hopes to reclaim
. "Who are we to dictate
what a person can or cannot do when many of our peers keep breaking
unimaginable barriers? Why restrict a person with disability by imposing a
LEGAL disability as a sort of penalty? This is the same kind of thinking that
had to be challenged repeatedly in the past whether discrimination has been on
gender (the suffrage movement), race (The Civil Rights Movement), or closer
home, on caste."
Could it be that the provision of guardianship is to
protect PwDs from enduring neglect or exploitation due to their
disabilities? "Guardianship or anything that dilutes full legal capacity should
be applicable to any Indian citizen in need, not restricted to just PwDs. Why put such provisions in this rights-reaffirming
" she adds. "If need be, such issues can be dealt with comprehensively and
completely on a priority basis in a separate legislation that provides for all
on an opt-in basis. This
would also enable anyone - whether disabled or not - to opt for it when they
situations of incapacity arise - such as losing all cognitive function, becoming
comatose, etc. The State in its role as a Public Guardian must proactively
protect people when vulnerable while aggressively safeguarding their rights at
the same time."
'Guardianship is Important'
one group in the disability sector strongly opposes the provision of limited or
plenary guardianship, there is another that supports it. The latter is a set of
people, who are also primary caregivers for their respective children and family
members with disabilities. They welcome
the idea of having a guardian
for their respective wards.
fear of 'what will happen to my child after I die' is a natural feeling among
parents. And it's even more legitimate when the child or adult has a
debilitating mental illness," explains Gita. "Monetary concerns are huge...for
instance, money and what it represents goes beyond the scope of people with
autism. They do not understand the significance of not having a protector."
a guardian is not easy. Guardianship is a legally acquired right that is
usually given by a district magistrate to the next of kin - parents, children,
spouses or other family members. "When you reach 18 years of age, your parents
cease to be your guardian. So, we have to separately apply for guardianship,"
says Amrit Bakhshy, President of Schizophrenia Awareness Association, Pune. "What
happens if someone with Dementia cannot access funds for treatment? In cases of
mental retardation, I've heard of unscrupulous family members who've used
retardation as a reason to usurp property. What happens to that person then? There
are many people with varying forms and
degrees of disabilities who require 24-hour assistance
, constant observation
and high dosage medications. In such cases, it's imperative to have a guardian
who can take decisions on their
is also a section of people who are tired of arguing over the Bill and say that
trying to make the Bill 'perfect' is unrealistic. "There can never be an ideal Bill
. There will
always be someone or some group who'll have a problem with something," avers
Beena, who supports the provision of guardianship. "But unless this bill is
passed, certain disabilities such as Multiple Sclerosis, Thalassemia, and
Autism, among others, will not be recognized as disabilities, and therefore will
not be entitled to rights or benefits. Without a law, the government will not
do anything to spread awareness about disabilities, train teachers for children
with special needs, open avenues for a specialized curriculum tailored to
children with special needs and all other requirements that takes it to the
grassroots level. So far, only private institutions have been providing such
care. Just pass the damn Bill...we can
work on amendments later
It's either now or never!
you think it's THAT easy to amend a law? If you're complacent about it now and
accept the Bill in its current form, you'll never get it changed," retorts
Bhargavi Davar, Director of Bapu Trust, Pune. "If history has taught us
anything, it's that old habits die hard. Guardianship is a colonial practice,
and under colonial rule, women did not have any legal right, not even to marry;
and how many decades did it take to change that! Look, it's like this - you
cannot be partially pregnant; you either are, or not. Same principle applies to
the provision of guardianship - it takes
away your power of decision and autonomy...you might as well surrender all your
says legal capacity should be measured on a sliding scale because it can
evolve, devolve, fluctuate, regress, be temporary or long-term, with different
levels of capacity required for different decisions. "The distinction between
Clinical vs Legal vs Mental vs Physical capacity has not been explored in the
Bill; nor has the area of Active vs Passive capacity. In fact, I would say that
legal capacity needs to be exhaustively
tackled in a separate domain,
as even non-disabled people will need
protection in this area."
What to do now?
Standing Committee submitted a report to the Ministry of Social Justice and
Empowerment (MSJE) requesting various changes in the Bill. It also urged the
ministry to consult with experts and stakeholders from the disability sector for
a consensus on the guardianship issue. The ministry, which circulated the Draft
Bill to other ministries in different states, categorically rejected any such
engagement and are looking at passing the bill in the monsoon session.
is a source of grave concern to the disability sector, whose only demand is
that the State, in its role as a Public Guardian, must not only protect the
rights of persons with disabilities but also empower them to lead fully
functional lives in a social environment that's devoid of man-made barriers.