It’s no exaggeration to say that 53-year-old Javed Abidi, who passed away on the March 4, was the face of the disability movement in India for the last couple of decades. As the story goes, he was named ‘Javed’ – immortal – in order to stave off the declaration of the doctor who predicted that he had only days to live, at birth. He was, in that sense, a man vaguely aware of the fact that he was on borrowed time – he seemed to be omnipresent at times, with prompt replies to emails that he thought important regardless of the time zone he was in. He was constantly on the move, contesting elections, leading one of India’s most prominent disability rights organisations as well as one of the largest disabled people’s organisations in the world, Disabled People’s International. Indeed, even the world was not enough for Javed Abidi.
Abidi’s entry into the world of disability rights came not from his identity as a person with disability as much as it did from a happy coincidence of philanthropy and privilege. He had earned a degree in journalism from Wright State University, Ohio, but his qualifications were being overlooked by potential publishers because they weren’t convinced that he could ‘work’ with his impairment, spinal bifida, for which he used a wheelchair. This was reflective of the disability rights approaches of the time, which were all about charity. Perhaps it was with this approach in mind that Sonia Gandhi, who was setting up the Rajiv Gandhi Foundation in the name of her late husband, contacted Abidi to help set up the disability wing of the organisation.
Abidi, influenced by the evolving social model of disability from his campus experiences, took the opportunity and made it his own. This engagement led to the formation of two important organisations – the National Council for the Promotion of Employment of People with Disability and the Disability Rights Group (DRG), which later took on several avatars. The former worked with the private sector to help overcome the barriers that existed preventing the gainful employment of persons with disabilities. The latter was the closest one could imagine to a political lobby group on the rights of persons with disabilities.
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What set the DRG apart from other groups working on disability rights was the fact that it sought to be cross-disability, an innovation that was recognised when awarding Abidi an Ashoka fellowship in 1998. The DRG, through Abidi, used the privilege of political proximity, education, awareness and exposure to launch a variety of actions towards realising the rights of persons with disabilities. The organisation takes credit for the passage of the Persons with Disabilities Act, 1995, where protests by the organisation convinced all parties to set aside their high drama in parliament to pass the law.
They also led a public interest litigation on a variety of issues, with the support of the Human Rights Law Network and the Public Justice Foundation’s Disability Rights Initiative. Though the 1995 Act had its limitations, this ‘strategic litigation’ precipitated changes to accessibility in higher education, accessible voting in elections, and accessible air travel. A long-pending litigation on accessibility in public infrastructure was finally reserved for judgment in December 2017, and it promises to be part of Abidi’s legacy to the sector.
Abidi and the DRG also claim credit for the Ministry for Social Justice and Empowerment setting up a committee to draft a new disability rights legislation in light of India’s ratification of the Convention on the Rights of Persons with Disabilities. The committee was headed by Sudha Kaul, a non-disabled person, and lacked representation from many impairment groups. Abidi launched a protest, bringing disabled activists from all over the country. While the chairperson remained, representatives of groups like psycho-social disability and developmental disability joined the committee. However, many of them resigned within a few months of the work commencing, citing failure to prioritise their concerns in the discussions, particularly those pertaining to the legal capacity of persons with disabilities. Meanwhile, Abidi had been elected as chair of the Disabled People’s International in 2011, which engaged much of his time and energy. Yet, he retained a key eye on the happenings in India.
Subsequent versions of the Bill further diluted these provisions, and the law that came to be introduced in parliament in January 2014 was seen as meaningless for impairment groups that faced numerous barriers on account of being perceived to “lack capacity”. In fact, it was another Abidi-led effort, the compilation of the Parallel Report of India on the Convention on the Rights of Persons with Disabilities, that led to the first collation of all laws relating to incapacity of persons with disabilities.
Leaders from these marginalised impairment groups were outraged by the omissions in the draft and sought its referral to the parliamentary standing committee. These activists were at loggerheads with the DRG and other allied organisations, who pushed for passage of the Bill without further delay. The ‘battle’ got personal, since many of the dissenters were proteges of Abidi, and have left the sector acrimonious till this day. It is a tribute to Abidi’s leadership capability that attempts to establish a ‘cross disability’ front to counter his own remained feeble and fell apart as soon as the referral to the standing committee was made.
Abidi’s career as an international disability rights activist and leader was not without controversy. However, he established himself as a champion for the Global South in a disability rights movement largely dominated by white, and often able-bodied voices. There are numerous anecdotes of how Abidi regularly “shut down” representatives of International Human Rights Organisations talking about disability rights by pointing out that they had no person with disabilities in their organisations. He was known as a ‘game-changer’, and his methods were unorthodox. Wherever one worked, whatever corner of the world, discussions on disability rights in India would always led to Javed Abidi.
Abidi’s legacy includes bringing a sense of entitlement and professionalism to the struggle for disability rights. He caused a generation of activists to be exposed to tools like litigation, policy advocacy, budget analysis. He supported the formation of regional organisations to support the most marginalised like the Disability Legislation Units, and also supported organisations like BarrierBreak in hosting Techshare, which showcases cutting edge technology for persons with disabilities.
Organisations working on disability now comprise more persons with disabilities. Abidi held a fragile cross-disability movement together. He led a cross -disability dharna against the proposed Mental Health Bill even when certain impairment groups did not want “those people” with psycho-social disabilities to be included under the same legislation. And he was not one to rest on his successes. In the next few weeks, the NCPEDP is organising training in several states on the 2016 disability law. Translations of the laws into local languages is also underway. My last conversation with Abidi, albeit towards the end of November 2015, was brainstorming on a panel for an event to commemorate 20 years of the 1995 Disability Law: The Equality +20 conference for which he had invited me as a panelist. I was, admittedly, sulking at the foregone conclusion that this law was going to be passed as it was.
“Do you think it will end there? Of course, the law isn’t perfect. I want you to talk about what will be next. Whatever it is. Whatever we need to do.” I wasn’t going to miss it come hell or high water, or so I imagined – unfortunately, the 2015 floods in Tamil Nadu prevented this exchange in public.
The disability sector has its share of experts, and activists. Whether there will be another leader like Abidi to represent the views of the sector at the national level remains to be seen, especially at this juncture when different (and newer) groups are fighting over limited resources. Regional movements for advocacy on the rights of persons with disabilities are gaining foot, as are intersectional perspectives, such as women with disability, who have found themselves excluded from the approaches of a mostly male-dominated sector. Abidi’s demise may be coinciding with the end of an era, but decades of his brand of activism will continue to influence the methods of newer generations, one way or the other.
Amba Salelkar is a lawyer with the Equals Centre for Promotion of Social Justice. The organisation focuses on policy and budget advocacy towards furthering the rights of persons with disabilities.