People 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.
The 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).
AdvertisementArticle 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 disabilities, and to promote respect for their inherent dignity".
Understanding 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?
The 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.
To 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, mentioned 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
Secondly, 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."
The 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 domains.
"Whoever 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 misinterpretations."
An 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?"
Beena 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 wrong interpretations."
'No Guardianship in this Law, Please!'
Perhaps 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.
But 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.
Smitha 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.
The 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'?"
Also, 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 decision. "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 his views.
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 law?" 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'
While 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.
"The 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."
Becoming 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 behalf."
There 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!
"Do 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 rights, then!"
Vaishnavi 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?
The 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.
This 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.