Differently-abled, special, impaired. In the progressive narrative of disability, there is no room for these patronising and delicate adjectives, which are now seen as guilt-ridden circumlocutions by a society that has long treated the disabled as feral elements. Even as pride movements are afoot around the world to celebrate disability as part of the natural diversity of the human race, India is playing catch-up as it waits to pass an inclusive law to end discrimination on the basis of disability. “It is time we went mainstream,” says Anupama S, a vivacious 42-year-old chartered account with multiple sclerosis. MS, which affects nerves in the brain and the spinal cord, causing symptoms including problems with muscle movement, is not considered a disability under existing Indian laws. But this is set to change under the Rights of Persons with Disabilities Bill, due to be tabled in Parliament this Monsoon Session. The Bill, introduced in the Rajya Sabha last February, was widely criticised for its flaws and referred to a Parliamentary Standing Committee, which submitted its report in May 2015. “We speak of equal opportunity, accessibility and dignity but more than anything else, there is a need to demystify disability,” says Anupama, a mother of two who lives in Bangalore. “Using a wheelchair does not mean I cannot work, care for my children or take my own decisions. People in India still don’t seem to understand this. We are considered dependents.”
The disability rights movement in India, which is home to a disabled population of over 26.8 million, is only a quarter century old—which means that even four decades after Independence, disability was synonymous with disenfranchisement. The movement took off in the early 90s, with international civil rights agencies and a newly-convened national Disability Rights Group lobbying intensively for the first comprehensive rights-based legislation for the disabled in India. The Persons with Disabilities (Equal Opportunity, Protection of Rights and Full Participation) Act, passed in 1995, provides for 3 per cent job reservations for the disabled and lists seven conditions including blindness, hearing impairment, mental retardation and mental illness as disabilities. Twenty years on, as the new Bill proposes to add a dozen more to the list, several provisions of the 1995 Act still remain unimplemented and vague clauses continue to be re-interpreted through litigation. “The Act has no teeth; it doesn’t penalise violation of the rights of the disabled. It needs to be given new architecture,” says Javed Abidi, one of the founding members of the disability rights movement in India. “In India, you can be punished for jumping a red light, but there is nothing to stop you from denying the disabled their rights,” he adds sardonically. Under the new legislation, violation of any provision of the Act is punishable with imprisonment and/or fine. However, with the sweeping obligations outlined in the Bill—such as making all public buildings accessible to the disabled within a given timeframe—the threat of punitive action may remain just that.
Abidi, director of the National Centre for Promotion of Employment for Disabled People (NCPEDP), has been arguing for better implementation since the PWD Act came into effect. “The disabled have gained the majority of their rights through the Judiciary, not through the Executive,” says the wheelchair-user with locomotor disability. In 1997, Abidi petitioned the Supreme Court for facilities and concessions for people with severe locomotor disability on Indian Airlines flights. The Court ruled in his favour, directing the state-owned carrier to grant them accessibility and 50 per cent concession. Importantly, it recognised the need for expediting the implementation of the PWD Act, and issued notices to the Central and state governments asking them to indicate the steps they were taking towards this. Activist groups have since had several triumphs, among them ramps and other features to make some public spaces, buildings, polling booths and UPSC examination venues disabled-friendly, and the inclusion of disability as a category in the Census.
Indeed, in tracing the arc of the struggle for equal rights for the disabled, the connecting dots were provided by litigation that set encouraging precedents. In a landmark verdict in 2009 concerning a developmentally disabled resident of a government-run welfare home in Chandigarh, the Supreme Court recognised the right to legal capacity of women with mental retardation. The woman was found to be pregnant, and the State sought to terminate her pregnancy on grounds that she was incapable of seeing the pregnancy through and of looking after a child. The Court decided to respect her autonomy, citing the United Nations Convention on the Rights of Persons with Disabilities (CRPD) ratified by India in October 2007. A touchstone for public policy on disability, the CRPD became the through line for a new legislation in India to replace the PWD Act. In 2010, the UPA Government constituted a committee chaired by Sudha Kaul, vice-chairperson, Indian Institute of Cerebral Palsy, Kolkata, to draft the new Bill, setting off a chain of events that forever transformed the landscape of disability rights in India.
“The Draft Bill of 2011 was unconventional and uncompromising,” says Amba Salelkar, a lawyer and activist with the Chennai-based Inclusive Planet Centre for Disability Law and Policy. It proposed 7 per cent reservation for the disabled in government organisations and 6 per cent in higher education, and limited the scope of guardianship, a concept established under the National Trust Act, 1999 and the Mental Health Act, 1987. “The committee took into account the whole gamut of life experiences a disabled person goes through,” says Salelkar, who lives with psychosocial disabilities. But many redeeming provisions of the Bill were found to be watered down in subsequent drafts—“auto-summarised,” she jokes—after incorporating inputs from about a dozen ministries and various state governments. The Bill, in its present form, is studded with worrying clauses such as Section 3.3, which imposes a caveat on non-discrimination that could be exploited. ‘No person with disability shall be discriminated [against] on the ground of disability, unless it is shown that the impugned act or omission is appropriate to achieve a legitimate aim,’ the clause reads. “To me that is the crux of the Bill and it goes against the very grain of the CRPD, which advocates absolute non-discrimination,” Salelkar says. She also takes issue with Section 109, according to which the Bill can add to but not supersede any other law already in force. “My feeling is that there will be a lot of litigation on the Bill,” says Salelkar.
The report of the Standing Committee on Social Justice and Empowerment does address some of these issues. It asks to review Section 3.3, advocates consultation on the issue of guardianship—the Bill imposes two types of guardianship, limited and plenary, on mentally ill persons— and recommends including a sub-section on the rights of women and children with disabilities. And while the Bill allows for termination of the pregnancy of a woman with disability as long as a medical practitioner and her guardian consent to it, the Committee takes the view that the woman’s right of consent should not be taken away. It remains to be seen if the recommendations make the cut.
The Bill has also brought into sharp focus the split that runs the length of the activist fraternity. Amita Dhanda, a professor at the National Academy of Legal Studies and Research (NALSAR), Hyderabad, calls it an “egregious legislation”. (The Bill has been labelled ‘Orwellian’, among other things.) “We haven’t been able to speak in one voice against a deeply flawed Bill. A cross- disability outlook is lacking,” Dhanda admits. “It has been a long and tedious journey to get this far,” rues Abidi. “Disability is not a priority sector for politicians, even if they all say the right things. But we had a chance to get the Bill passed and we lost it due to some opposition in the name of perfection.”
Obviously, some groups of disabled persons stand to gain more from the Bill than others. The inclusion under the Bill means a lot to people with autism and learning disabilities, who have often been forced to get certified as ‘mentally retarded’, says Salelkar. Anyone with a ‘benchmark disability’, or 40 per cent or more of any of the 19 disabilities listed in the new Bill, can now avail benefits such as reservation in education and employment. Disabled children up to the age of 18 are now entitled to a free education. Since disability is a state subject, it is unclear yet how the Centre and the states will split the cost of these entitlements between them.
The world of the disabled is governed by a rhetoric of rejection, but sometimes, denial becomes an immense centrifugal force, propelling people towards what is rightfully theirs. Ira Singhal, the 31-year-old who topped the UPSC examination this year while on Indian Revenue Service training, was repeatedly denied a posting because of her 62 per cent locomotor disability. Disabled candidates are routinely disqualified from the civil services based on arbitrary evaluations of the extent of their disability. “Fortunately, I am not someone who gets disheartened. It has never been simple for me. Growing up, schools had reservations about taking me,” says Singhal. Though widely travelled and fluent in Spanish, French, Italian and more, Singhal had to contend with the fact that she wasn’t medically eligible for the Indian Foreign Service. But when refused an IRS posting, she moved the Central Administrative Tribunal, alleging violation of the PWD Act. The case was ruled in her favour, but she had to pass a test to prove her fitness which included lifting heavy weights.
For 41-year-old Rajiv Rajan, a disability activist from Chennai with cerebral palsy who prides himself on being a “barrier breaker”, it was his physical appearance that prompted banks to deny him a savings account despite an RBI directive that rules otherwise. Rajan had to settle for a joint account and get a guardian to operate it. “I cannot have my own account because according to banks, I am of unsound mind because of the way I look,” says Rajan, who uses a wheelchair.
“While we are not ready to do away with the guardianship regime in its entirety, we have to change the way we look at disability—it is not synonymous with incapacity,” says Poonam Natarajan, Rajan’s teacher and mentor at Vidya Sagar, a Chennai NGO founded by her, and former chairperson, National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. Natarajan was responsible for soliciting feedback on the new Bill from civil society organisations. “In the end, what was there in the Bill was the most common denominator,” she says.
Bhargavi V Davar, a mental health activist and the managing trustee of the Bapu Trust in Pune, worries that if the Bill does get passed, along with a separate pending mental health legislation, a large number of disabled people could be relegated to a lonely exile in one of the 800-odd mental institutions in the country. “Since mental illness is hard to prove, people with any kind of mental disability can go under plenary guardianship, which denies them legal capacity,” Davar says. “Once institutionalised, women are often forced to undergo hysterectomies and abortions and their children are given away.”
Defining the extent of the newly-added disabilities is a big exercise, Natarajan admits. “A socio-medical scale has to be developed, not just to measure the degree of physical and mental disability but also to factor in the environmental barriers to that disability,” she says. For the country’s disabled population—which rose by 22.4 per cent between 2001 and 2011—merely dipping their toes in the social pool isn’t enough. They must be made whole in the eyes of the law.