Can disability rights pioneer Javed Abidi ever be replaced? The answer is no, never

I want to see more Javed Abidis, but I am not looking for clones of my uncle. I want people with disabilities who have the same raw energy and a fierce spirit.

Javed Abidi with nephew and author Shameer Rishad. | Sheeba Abidi

Pak gayi hain aadatein, baaton se sar hongi nahi. Koi hungama karo, aise guzar hogi nahi” —“Conditioned by habit, mere talk won’t bring about a change. Let’s make some noise, this vacuum must not remain.”

This verse from a poem written by Javed Abidi in 1997 encapsulates his spirit, his drive, his passion for life and a willingness to never accept a status quo.

Who was Javed Abidi?

I don’t think there is any one correct, legitimate answer to this question. He was a multifaceted man who I believe, knew that he had been sent into this world to make the lives of others easier. It is because of him today that many people with disabilities have a sense of pride, an ownership over their own lives; they can work on changing their destinies by fighting for what is rightfully theirs.

Javed Abidi was that person who saw the invisible constituency and believed that the invisible could be made visible. He played a pivotal role in empowering persons with disabilities, legally and financially. One man charted a course for a people, bringing together all the different

disabilities and catalysing India’s first cross-disability movement.

What did he achieve?

He graduated ‘summa cum laude’ but that was probably the most meager of all his achievements. Though he prided over it as if it was the epitome of success (“I had a 4.0 GPA, Shameer,”, he used to tell me, while I dropped out of college and played the guitar for him.)

At Rajiv Gandhi Foundation, he experimented with what he already knew about disability from his personal experience, giving him an intuitive feel about the core issues, which was then meshed with a hard professional analysis of what works and what doesn’t from a disabled person’s perspective and most critically knowing how and in what way to articulate that need. He adopted a rights-based approach giving a fresh outlook to the whole sector, thereby bringing a much needed shift from the charity based approach. He also pushed the envelope really hard on the concept of self- determination at a time when most disabled people were seen and treated as passive participants in their own lives. When he started pushing the idea of nothing about us without us, initially he offended many.

When Javed Abidi was a programme officer at Rajiv Gandhi Foundation (RGF), Action Aid and RGF collaborated to set up the National Centre for Promotion of Employment for Disabled People (NCPEDP), which was meant to focus on enhancing employment opportunities for persons with disabilities.

Disabilities. But very soon, he realised that it wasn’t possible without inclusion and access in different  ways, through multiple platforms. Which in turn was not possible without appropriate policies that ensured the rights of people with disabilities, in place. So he lobbied for several policy level changes (government and private) through NCPEDP.

Maybe it was his personality or his work ethic, while it upset some people, it also unified many others. He managed to bring together people from different walks of life for a  common cause through his regular and persistent communication via emails, WhatsApp messages,  phone calls or in old days through faxes, personal couriers or the snail mail.

He truly believed in the power of information sharing. Taking advantage of the fact that he was based out of the capital of the country, he dug out information and ensured that it reached far and  wide, from top to bottom.Wherever he thought, people with disabilities were being ignored he made sure by getting some like-minded people together to make enough noise to be heard. These  were not only persons with different disabilities, their families or representatives of NGOs but also  belonging to other sectors such as government, corporate, academic institutions, international NGOs, and bi-lateral agencies. Bbasically, all those who he felt should be lobbied for building a stronger disability rights movement in India. He did not care if it was the government or opposition as long as they were willing to act.

Javed Abidi was the convener and one of the founding members of the Disabled Rights Group (DRG) that was set up in 1994. It became the first cross-disability group to be setup in India when a small group of Indian activists came together for a book discussion via video conferencing with American experts Judy Heumann and Justin Dart on Joseph Shapiro’s book titled No Pity. Hearing about the passage of the American Disabilities Act due to sustained efforts of disabled advocacy groups over there, Abidi, who was the youngest in the group, became impatient and asked why they

couldn’t do something similar in India. The other founding members of this group were Lal Advani, Ali Baquer, Anuradha Mohit, A.K. Chaudhry and Sarabjeet Singh. Together, this group lobbied hard for the passage of the People with Disabilities Act in 1995. In 1998, he was elected an Ashoka Fellow in recognition of his work to make legislative rights and economic opportunities a reality for India’s population living with disabilities.

Later, as executive director of NCPEDP, he reached out to NGOs working with people with different disabilities from all across India, setting up the National Disability Network (NDN). This gave him the ability to campaign and advocate for the rights of people with disabilities in a systematic way at the national level. Apart from the Passage of the Rights of People with Disabilities Act in 2016, there are many small and big achievements between 1992 and 2018, all with a lasting impact that resulted from NCPEDP, DRG and NDN working in sync with each other with support from or pressure built on other stakeholders. His strategies varied, always keeping the goal in insight. “Javed would have made an impeccable general” said one of his key senior collaborators from the disability sector. Abidi was at war and his career is filled with campaigns. These campaigns led to outcomes that are regarded as milestones in the history of cross-disability movement in India today.

Some of the main ones are listed below:

1. Lobbied hard for the Passage of the Persons with Disabilities Act of 1985
2. Launched the Disability News and Information Service (DNIS) that remains a reference point for all disability related news.
3. Filed a Public Interest Litigation (PIL) in the Supreme Court of India in 1997 regarding the non-implementation of the Disability Act. This resulted in the Supreme Court instructing the Union of India to adopt several measures including appointment of State Disability Commissioners.
4. Led yet another campaign successfully pushing the implementation of the Disability Act. This led to a meeting with the Prime Minister of India in 1998, which in turn resulted in the appointment of the first Chief Commissioner for Persons with Disabilities.
5. Lobbied Confederation of Indian Industry (CII), Federation of Indian Chambers of Commerce and Industry (FICCI) and others to include disability on their agenda in 1998.
6. Played an active lobbying role in the passage of the National Trust for Welfare of Persons with autism, cerebral Palsy, mental retardation and Multiple Disabilities Act in 1999.

7. Filed several PILs: for non-implementation of the Disability Act, to make airlines, historical monuments and other public places accessible in 2001, and to make the election process disabled-friendly.
8. Brought the issue of Access into the public realm during Prof. Stephen Hawking’s visit to India in 2001. This led to Archaeological Survey of India to announce a policy making historical monuments, including the World Heritage Sites to be made disabled-friendly.
9. Led an advocacy campaign to get disability included in the Census of
10. Accessible Elections way back in 2004. Filed a PIL in the Supreme Court of India to make the election process disabled friendly. The Court directed the Election Commission of India to undertake several measures, for example building ramps at polling stations and incorporating Braille signages on Electronic Voting Machines (EVMs), etc.
11. Apart from fighting for accessible elections, he stood as a parliamentary candidate from New Delhi Constituency 1 making a strong statement about the political rights and participation of people with disabilities.
12. Fought for UGC Guidelines for Persons with Disabilities Scheme in universities and colleges: this led to setting up of Disability Units on vampuses.
13. Called out Department of Personnel and Training (DoPT) for discriminating against people with disabilities in the civil services. As a result, several selected candidates got reinstated as per their rank and opened channels for other aspirants with disabilities.
14. Fought hard for India to ratify the UN Convention of Rights of Persons with Disabilities (UNCRPD) in 2007; it was the 7th country to do so. Later, he watched like a hawk to ensure that the  new law is framed as per UNCRPD.
15. Inclusion of disability in the Right to Education Act 2009.
16. Worked actively with the Census Commission in conducting awareness raising and training sessions that increased the spectrum by enumeration of people with disabilities in the Census of 2011.
17. As a member of steering committee for 10th& 11th Five Year Plans, he actively led a campaign for including a comprehensive chapter in the 11th Plan.
18. Got the National Building Code revised, demanding that the universal design approach be followed giving accessibility to all, in built accessibility into the smart cities mission.
19. Participated actively in the drafting of the bill and later lobbied very hard for the passage of the RPWD Act of 2016.
20. Influenced Government of India to reduce customs duty on aids & appliances from a whopping 35-40 per cent to 5 per cent.
21. Strongly advocated for the creation of a separate Ministry of Disability Affairs and was not content that he could only manage to get a Department of Disability Affairs created.
22. Successfully lobbied for the guidelines of government websites to be revised and expanded to include mobile apps.

23. Successfully lobbied for setting up of the Institute of Sign Language along with key strategic partner National Association of the Deaf, also lobbied along with NAD for all national programs to be telecast with sign language.
24. Elected as the Global Chair of Disabled People’s International twice in 2012 & 2016. During his tenure he made noise at the highest levels about the representation and participation of PWDs from the Global South in decisions impacting their lives and ensured that they were included in all key meetings.
25. Worked on expanding the presence of DPI to Arab & CIS region, two regions with high disability statistics but not included in DPI thus far. There is more to his achievements but I guess this is good for now.

What made him who he was?

His ability to laugh in the face of adversity. I guess he had seen life way too close at a very young age; making him invulnerable to anything, anybody threw at him. He would come up with plans to circumvent the slightest inconvenience but was equally alright riding his wheelchair over the bumps and cracks of life when he had to.

At his core, he was a change maker, a leader. I don’t think that it was his exposure to the western world that shaped him. Even in his hometown Aligarh, he was a champion debater, founding member of ‘The Great Book Club’, organiser of probably the best university fest AMU had seen in those days and also the founder of the Aligarh Action Group (AAG!) that collected funds for the

Prime Minister’s Drought Relief Fund. His education in the US, the degree in Journalism with a specialisation in Organisational Communication sculpted him and gave him the required skills that he had. It harnessed the raw potential Javed Abidi had, that he could have done anything he wanted with. That he chose disability led to the achievement of such great milestones he is now remembered for. I personally believe he would have done equally well in any other field.

What did he want to do next?

Javed Abidi wanted to see the RPWD Act come alive. He called it “the game changer”. He believed in young people. He was grooming a group of young leaders to take the movement forward. He had also started National Convention for the Youth with Disabilities (NCYD) because he knew that somewhere among the crowd of young people, there would be individuals who given a chance would cause a churning, who would be brazen enough to disturb the equilibrium and emerge champions in years to come.

In response to a question about what were his plans for the next ten years, he said that he felt very strongly about leprosy. He was angry about the discrimination against leprosy affected people even within the disability sector. So he wanted to work for the rights of leprosy affected people and others with new and hidden disabilities included in the RPWD Act. He wanted to ensure that they are mainstreamed within the movement and outside. He also wanted to highlight the challenges of disabled people in remote rural areas. In his self-mocking style at home, he once said “I became the global chair of DPI but I need to go back to Kalahandi again”. He had visited Kalahandi as a programme officer at Rajiv Gandhi Foundation in his early days in the sector when he was traveling on a train across the country, learning about the challenges faced by people with disabilities in India. He also wanted to work in the area of education. He felt that very few efforts had been made towards college/university education and there was a huge gap when it came  to schools. He used to threaten me when I was in school that he would come and sit on a ‘dharna’ outside my school! He wanted more awareness raised about disabilities caused due to nutritional deficiencies like his own disability, spina bifida lipoma. He wanted awareness raised about it in India. He wanted disability to be recognised as a crossing-cutting theme in other areas like child rights, health, age related (0-6 years not covered under RTE and elderly), nutrition, gender and education. I call it the C.H.A.N.G.E.

Can he ever be replaced?

The answer is “No, never”. I always will wonder if someone can ever have a greater impact on me and the same answer echoes in my head “No, never”. So, by saying that I want to see more Javed Abidis, I don’t mean that I am looking for clones of my uncle. I want to reach out to find people with disabilities who have the same raw energy and a fierce spirit to do the undoable.

Courtesy: Profile prepared by NCPEDP old and current team.

Shameer Rishad is the Convenor of the Javed Abidi Foundation (JAF). He can be reached on twitter @RishadShameer. Views are personal.