Between a rock and a hard place: Dilemmas and disability rights
By Amba Salelkar
When a disability rights movement turns ableist, it’s evident that things have gone very, very wrong.
That’s exactly what happened in December, 2013, when it was announced that the Rights of Persons with Disabilities Bill, 2013, had been approved by the Cabinet for introduction in the Rajya Sabha. The Disabilities Rights movement was seemingly split into two camps – one asking for the immediate introduction and passage of this Bill, which had been in the making for years together; and the other, smaller group, asking to see the contents of the Bill. The movement was familiar with the Rights of Persons with Disabilities Bill, 2011, which had been drafted as per the recommendations of the Sudha Kaul Committee, involving persons with disabilities themselves. The Ministry of Social Justice and Empowerment had responded with the Rights of Persons with Disabilities Bill, 2012, which had been drafted by the Ministry on the basis of the Sudha Kaul Committee Report and its draft Bill, and placed on the Ministry website. Not everyone was satisfied with the contents of the 2012 (and, for that matter, even with the 2011) version of the Bill, and so numerous representations were made to the Ministry for reconsideration. The Bill did the rounds of the State Governments among states in April, 2013, and among other Ministries in August, 2013, and, finally, had to pass the scrutiny of the Law Ministry, so there was every concern that there had been changes made since the Bill’s 2012 avatar, at the very least. The contents of the Bill, initially shrouded in secrecy and seeking to impact the lives of the 15% of the Indian population that lives with disability, was finally leaked around the 22nd of January, 2014. Even then, the poorly scanned, screen reader incompatible copy of the Bill, was inaccessible to many of the persons for whom it sought to benefit. Therefore, the initial analysis of the Bill was done in haste, and under great pressure, by those with access to it.
The Inclusive Planet Centre for Disability Law and Policy was being repeatedly contacted by the press for our “take” on the Bill and to support the calls for speedy passage, even before the contents of the Bill were known. It was a pleasant surprise in a way, because it was an acknowledgment of the work that the Centre does and its position as a known entity in disability law and policy. My initial reading of the Bill, in a cramped 3 tier AC train to Hyderabad, had me amused, frustrated, and conflicted, all at the same time. The Bill was a clumsy compilation by persons who obviously had no clue about the principles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), a fact which we would later have confirmed through meeting various officials in New Delhi. I admit to never having had confidence in the secret draft Bill, but in my heart I would have rather been proven wrong than be faced with what was finally proposed as legislation. For all the consultations, for all the “nothing about us without us” principles that surrounded the drafting of the Bill, the final product was absolutely abysmal. The Bill purported to implement the principles of the UNCRPD, but did nothing of the sort.
Yet, the enactment of this Bill was supposed to be of great importance, if for nothing else, but for expanding the definition of the term “person with disability” to include 19 classifications of impairments, including those covered under the National Trust Act, and including impairments like Thalassemia, Multiple Sclerosis, Learning Disabilities. The specific inclusion of persons with these impairments would make them eligible for various Government benefits, including State schemes for persons with disabilities, through their eligibility for the disability certificate. Admittedly, I was coming in from a position of privilege, though I identify myself as a user and survivor of psychiatry, the Bill had no potential to make a difference to my life and so I had to really think about the consequences of any call to support the Bill or reject the Bill from the point of view of individuals for whom the Bill had that potential to be a “game-changer”.
Inclusive Planet, as envisaged by its founder, Rahul Cherian, was always meant to work cross disability, and across sectors. This mandate compelled working out the best way to analyze the Bill in order to come to an absolute conclusion. Since the Bill announced that it was meant to enact the principles of the UNCRPD, which India was bound to do so, as a ratifying party, the least contentious way to analyze the Bill was to check for Article-wise UNCRPD compliance. The analysis, which is still available on our website, was supplemented with the observations of individuals with disabilities and organizations working with persons with disabilities throughout the country, and the world. While additional UNCRPD compliance failures were pointed out, no one contacted us with a defense of the law as being compliant with India’s obligations under the UNCRPD, not to mention, Human Rights Law in general.
In complete honesty, any semblance of positivity towards the law was welcome. At Inclusive Planet, the belief is that accommodation of persons with disabilities must take place in every legislation and at every level of governance. The enactment of this legislation will never replace the work organizations have to do in order to get non-discrimination and accessibility provisions in every policy and law that gets enacted. At present, issues concerning persons with disabilities are shuffled between the mainstream Ministry (e.g. Women and Child Development, in case of the Juvenile Justice Act) and the Ministry of Social Justice and Empowerment, which will obviously continue no matter how comprehensive a legislation enacted. At the very least, what was expected was that the law would not make things worse for persons with disabilities. Inexplicably, the Bill overrides important decisions of the Supreme Court, as well as various High Courts, on rights of persons with disabilities, with regard to employment, rights to accessibility, reproductive rights, to name a few. It blatantly ignores the UNCRPD by creating exceptions to the important rights of equality, liberty, and freedom of access and the right to reasonable accommodation, limitations which, once enacted, would render persons with disabilities to “officially” be second-class citizens. It fails to incorporate twin track approaches to make meaningful interventions on behalf of women and children with disabilities, and persons with disabilities from disadvantaged castes and communities. As regards the question of inclusion of otherwise excluded impairments, further discussions revealed that groups, including persons with thalassemia and hemophilia, were not consulted during any of the pre-drafting consultations to their satisfaction. Other groups, including persons with disabilities from amongst those covered under the National Trust Act, and users and survivors of psychiatry, were appalled by the legislation’s failure to enact provisions with regard to the right to legal capacity, one of the most celebrated provisions of the UNCRPD. Indeed, while these persons were being encouraged to support the legislation on the ground of special provisions for reservations in government jobs, the question as to how a person, who was unable to sign a contract on their own, would be allowed to hold a job remains unanswered even till this day.
The challenge with working anywhere except Delhi is the lack of influence in such situations. The analysis of the Bill continued and emails became Facebook posts and podcasts and videos, but it took some time for information to be disseminated far and wide. Again, this was online, and in English, and, again, created a certain elitism in the debate. In Tamil Nadu and Andhra Pradesh, regional, vernacular cross disability consultations were hurriedly organized where, after exhaustive discussions and readings of the 2013 Bill, unanimous calls to withdraw the Bill were made because of its failure to incorporate provisions of the UNCRPD and, additionally, its disregard for the conditions prevailing in rural India while designing its mechanisms for enforcement and redressal. From someone working in policy, I found myself in a reluctant activist mode, and on a flight to Delhi to try and present the alternate views of the Bill to as many persons as possible. The only reason I could go, as opposed to my more senior and knowledgable colleagues in Chennai, was my ability to compromise on accessible accommodation and transport. I was, however, on account of my anxiety issues, unable to lend physical support to the wide-scale protests against the Bill that were mounting in the capital. It would take me nearly 2 months to recover from the stress that the one month on the road – discussing the Bill at various regional consultations – put me through.
A possible argument put forth for allowing the Bill to go through was that amendments could always be carried out later, and to the credit of activists like Javed Abidi, Santosh Kumar Rungta and Rajive Raturi, the Ministry had acceded to certain amendments which they said would be moved on the floor of the house, while the Bill passed as a “consensus Bill”. As tempting as that sounded, the experiences post-1995 with the Persons with Disabilities Act showed that amendments were difficult, if not impossible. Many necessities, such as the recognition of sign language as a language, something the Bill failed to do (instead, grouping sign language as an alternative and augmentative means of communication) would have to be canvassed for by individual groups and not by the disability movement as a whole. Many deaf groups faced immense difficulty in having their views and extremely important reservations on the Bill conveyed to lawmakers and bureaucrats, though discussions by way of videos on Youtube and other Social Media platforms were extensive. It is also worth noting that many other legislation passed during those last few days of Parliament were passed without moving similarly promised amendments, The Whistleblower’s Bill being an example. The Disabilities Bill, however, eventually came to be referred to the Standing Committee of Parliament for further consultation.
The most disturbing observation I had was the abject failure to work cross disability in the opposition to the Bill and while advocating possible amendments. At every stage, certain groups were being nudged into giving up their idea of what was “non-negotiable” for the sake of others – for example, persons with psychosocial disabilities who were constantly reminded that they had their own legislation (i.e. the Mental Health Care Bill, 2013, also pending in Parliament) to take care of them, never mind that the mandate of the legislation was solely regarding the healthcare aspect of treating mental illness. At least, one attempt that emerged from the post-Bill-chaos, which sought to work cross disability pan India, turned out to be a colossal failure in the eyes of underrepresented disability groups. While that was another experience which triggered my mental health condition, I am grateful for the lessons I learnt from it, though it is still astonishing as to why cross disability movements in South India appear to be much more successful in evolving consensus and even accommodating the needs of even the profoundly impaired to enable them to have their views heard. The challenge of working cross disability has always been to cherish the principle of “nothing about us, without us.” Legal opinion sometimes clashes with the lived experience of persons with disabilities and their caregivers, and it is a difficult tightrope to walk. The social model of disability, which places the burden on the State to remove barriers to participation, should ideally seek to give precedence to enabling participation of persons with disabilities rather than adhering to laws framed in an ableist framework.
While many lamented over the public spectacle that the Bill became and how it showed that the disability sector was divided, the fact that there was debate – the fact that the Government had to take notice that it had betrayed the trust of persons with disabilities by portraying the Bill to be a document worthy of passing as a consensus Bill – shows that persons with disabilities are not to be taken lightly as an interest group, and cannot be taken for granted. With the lack of political participation at the MP level from amongst persons with disabilities, it is difficult to imagine a spirited intervention from within, and so organizations working in the disability law and policy space need to remain vigilant and active to ensure as much UNCRPD compliance as is practicable, given the realities of the Indian conditions. The hope is that the new Government has also taken heed of the views of the disability rights movement, and will make the discussion over the Bill accessible and open for all stakeholders to voice their concerns, perhaps even by organizing regional hearings for those who submit their responses to the Standing Committee. Despite the failures in this regard, the disability movement needs to make one last attempt to evolve consensus. Working cross disability is where the movement is at its strongest, and it is necessary to support one another in ensuring that the Rights of Persons with Disabilities Bill is taken up for consideration on a priority basis, and that the interests of all are represented, with no one left behind.
Amba Salelkar is a lawyer working with the Inclusive Planet Centre for Disability Law and Policy, Chennai, where she works on cross disability issues and advocates for legislative and policy changes to give effect to India’s obligations under the UNCRPD.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.