The Path of Advocacy to Empowerment

Rama Chari, Director, DEOC, wrote about Mr. Javed Abidi in the book ‘Creating Change Innovations in the World of Disability‘, in 2009, published by Ashoka. She wrote about his path of advocacy to empowerment.

“First, the nation was forced to recognize that we existed. Then it was made to realize that we did not merely exist, but that we were citizens too!” Thus did Javed Abidi quite aptly describe the journey of the disability rights movement in India, i.e., that of people with disabilities struggling to assert their rights and have their voices heard. This is a strategy Abidi has tirelessly pursued for almost 16 years now.

The condition of people with disabilities in India in the 1990s was grim. Their numbers were estimated at about 60 million, which is 5-6% of India’s population. Though this vast number of people with disabilities is as great as that of many of India’s states, they were largely unseen and unheard. Less than 2% of children with disabilities were receiving education of any kind. There were segregated arrangements for education. Even so, the number of “special schools” catering to disabled children was very few. As far as employment was concerned, less than 1% of people with disability were employed. Since the establishment of the first Special Employment Exchange by the Indian government in 1959, only about 100,000 persons with disabilities had obtained employment. There was job reservation in goverment departments and public sector undertakings, something that was initiated in 1977, but it was only for very low-ranking posts, something which clearly indicated the mindset of policy makers and of the sector as a whole – namely, that people with disabilities were not expected to be in high positions.

Thus, after over four decades of independence, there was still no legal protection of the rights of people with disabilities in India. Roads, buildings, and transportation were inaccessible to people with disabilities. Indeed, the term “accessibility” itself was unheard of! The disability sector was divided into various segments, such as those for the blind, for the deaf, spastic societies, associations of parents with mentally retarded children, and so on. Many of these organizations were “islands of excellence”, but there was no cohesive action. Moreover, non-disabled people dominated the sector – and their focus was mainly on providing services for children. Nonetheless, these services did not address the rights of people with disabilities or ensure accessible facilities. Furthermore, most of these services were based in cities and had a limited reach. The government’s role was restricted to providing welfare, which included providing grants to NGOs and distributing disability aids and appliances. The ministries focusing on development, like those dealing with education, employment, transportation, urban development, women & children, and so on did not address disability. There was hardly any awareness of disability issues. This was the context in which Javed Abidi envisioned a broad-based disability rights movement targeted at bringing about a change in the way disability was perceived in India.

Abidi was born to a middle-class family on June 11, 1965 in Aligarh, Uttar Pradesh. At the time of his birth he was diagnosed with a congenital impairment affecting the spine called Spina bifida. When he was fifteen years of age he became a wheelchair user. In 1985 he went on a scholarship to the US to study mass communication. Four years later Abidi returned to India with the dream of becoming a successful journalist. He thought that, given his credentials, it would be very easy for him to get a job with any big newspaper company. However, that was not the case. He remained jobless for six months. Recalling this experience, he says, “Employers refused to look at my degree credentials. Instead, they would only stare at my wheelchair!” But he didn’t give up. He started freelancing. He began with small city magazines and worked his way up. He interviewed politicians, actors, industrialists, ministers, and even the Prime Minister. Then by an interesting twist of fate in 1991, at an unplanned meeting with Sonia Gandhi, the widow of Rajiv Gandhi, the deceased Prime Minster of India, he was asked if he would like to set up the disability wing of the newly established Rajiv Gandhi Foundation (RGF). He accepted the offer because, “quitting journalism would not harm that sector, but refusing Sonia Gandhi’s offer would mean turning my back on so many things that I was angry about – and I don’t mean my disability, but the attitude of people to my disability.” He joined RGF in May 1992.

The Birth of the Disability Rights Movement

On March 17, 1994, Abidi was invited to lead the Indian Panel of a satellite discussion between Washington and New Delhi. The discussion was on the book No Pity by Joseph P. Shapiro, which is a story of the political awakening of Americans with disability. Many senior leaders of the Indian disability sector were present. After the satellite discussion, a very spirited discussion took place amongst the Indian audience, whom Abidi passionately asked: “Could we not give birth to an Indian disability rights movement here and now? Is this not the call of the hour?” Senior leaders of the disability sector endorsed the idea. Finally, they endorsed the idea and thus, on April 3, 1994, the Disabled Rights Group (DRG) was formed as the first broad-based disability advocacy group in India.

Passage of the Persons with Disability Act, 1995

One of the major issues that the Disabled Rights Group first took up was to get disability legislation passed in the Parliament. They did intense lobbying, organized press conferences, meetings, protests, sit-ins, and street demonstrations. They even faced opposition from people within the disability sector who did not want the bill to be passed. However, DRG’s efforts paid off and the Persons with Disabilities Act (Equal Opportunities, Protection of Rights and Full Participation) was passed by the Indian Parliament in December 1995 and enacted on February 7, 1996. This was the first time in India that integration, equality, and rights were emphasized with regard to the disabled.

The Establishment of the Advocacy Organization, NCPEDP

It was at a discussion at the Rajiv Gandhi Foundation that the idea to set up an organization focusing on employment was conceptualized. Abidi felt that employment was the point of leverage that would set the implementation of the Act into motion. Pressing an employment agenda would also change the perception of disability from charity and welfare to that of economics, development, and equal rights. Abidi then established the National Centre for Promotion of Employment for Disabled People (NCPEDP). Senior representatives from industry, government, and the NGO sector were invited to serve on the board. Abidi later joined NCPEDP as the Executive Director in 1997.

Innovative Approaches and Strategies

When NCPEDP was inaugurated, many had assumed that it would work like a job placement agency. Abidi was absolutely clear that it would not do service delivery, which at the time was being done by most of the other disability organizations. He felt that it was policy intervention and advocacy that would have the most impact and bring about greater change.

Abidi was also quite clear that employment could not be looked at in isolation. As he argued: “Access is the absolute and basic foundation needed for the empowerment of people with disabilities in India. Without access, neither education nor employment is possible. And none of the three are possible without adequate legislation and policy. Thus, for all the above four to materialize, awareness is essential”. This is why NCPEDP worked simultaneously on five core issues – namely, Awareness, Access, Education, Employment, and Legislation.

NCPEDP decided to take the networking route to spread its vision. First, the country was divided into five zones – North, South, East, West, and North-East. Coordinators were appointed for each of the zones. Then, in 1999, NCPEDP created a network of disability organizations, with a partner in every state and union territory of the country to promote advocacy. This was called the National Disability Network (NDN). NDN has now expanded to 320 districts of India. NCPEDP also developed cross-sectoral partnerships, particularly with apex organizations in the areas of education, employment, architecture, information & technology, human rights, and law, not only to spread awareness through their networks, but also to integrate disability into their policies and systems.

NCPEDP has held that information is power. The NDN was primarily used for disseminating information to people with disabilities. The information sent included policy documents, research reports, information about any development that had taken place, and regular updates on campaigns. It was due to this that the winds of change began to blow: reports of campaigns, rallies, and even litigation started coming in from all over the country. In 2003, when the Internet had become more popular, NCPEDP launched the Disability News & Information Service, a web-based news service designed to ensure larger scale dissemination of information.

NCPEDP has treated the media as an equal partner in all their campaigns. Special care has always been taken to sensitize the media to issues that affect people with disabilities. As a consequence, newspapers and media channels around the country have covered all the issues raised by NCPEDP. This not only provides visibility, but also builds pressure on policy makers.

Many of the advocacy campaigns undertaken by NCPEDP were spontaneous. They emerged from news items, complaints received, and were sometimes instigated by letters and phone calls. The approach adopted in these campaigns, however, was quite systematic. NCPEDP staff would first gather all the information and data related to the issue and put together a very concise report. Focused research became the biggest strength of NCPEDP. Thereafter the tactics resorted to in order to obtain the desired outcome followed a systematic plan. First a letter was sent to the concerned authorities. Failure on their part to respond led the campaign to its second stage: that of mobilizing the disability community, the media, and signature campaigns. If this also failed to yield any result, it was then intensified in the form of a non-violent dharna and rallies. The ultimate tactic was resorting to hunger strikes or fast-unto-death protests. For some campaigns, lawsuits were filed. But for most, it was the relevant minister or the Prime Minister who took the final decision to accede to NCPEDP’s demands.

Some of NCPEDP’s key achievements:

Equipping disabled people with educational opportunities.

In 1998, NCPEDP took up the issue of access to higher education with the University Grants Commission, an apex body for all universities in India. As a result, two landmark schemes were drafted. The first is ‘Teacher Preparation in Special Education’, which was introduced to prepare teachers to cater to disabled students. The second is ‘Higher Education for Persons with Special Needs’, which included establishment of Disability Units at universities and colleges and the provision for access and special equipment for students with disabilities. In 2004, NCPEDP undertook a nation-wide survey of regular schools and colleges to study the situation vis-à-vis the education of disabled people. Based on those findings, NCPEDP submitted a Blue Print to the Minister of Human Resource Development (HRD). As a consequence, on March 21, 2005, he tabled a Vision Statement in Parliament, which stated clearly that education would be made disabled-friendly by 2020. This policy-level integration of disability education in the Ministry of HRD was a very significant step.

Promoting employment of people with disabilities.

NCPEDP targeted the business associations to effect a larger change in the employment of people with disabilities. In 1998, the Confederation of Indian Industry promptly responded by adding disability to their social agenda. In 2000, NCPEDP organized Roundtables for CEOs of some prominent IT Companies. As a result, many of these are now proactively employing people with disabilities. In 2004, a campaign was undertaken to address the blatant discrimination practiced against people with disabilities in the Civil Service. People with disabilities were either being denied a job or were being forced to take up positions for which they were overqualified. NCPEDP demanded justice and a clear policy of non-discrimination. As a result, the identified job list was reviewed and more services were identified as suitable for people with disabilities.

Ensuring easy access to public places.

In 1999, NCPEDP convinced the Council of Architecture to include disability in the architectural curriculum. The issue of accessibility received a boost when Prof. Stephen Hawking visited India in 2001. NCPEDP raised the issue of access for people with disability in a major way, which resulted in ramps being built overnight at all the historical monuments that Prof. Hawking wanted to visit. Afterwards, the Archaeological Survey of India announced a policy to make all historic places disabled-friendly. In 2004, NCPEDP fought and won an important battle for accessible polling booths. On April 19, 2004, the Supreme Court ordered construction of ramps at polling booths in the 2004 general elections. On October 1, 2004 electronic voting machines with Braille were tested and finally accepted.

Empowering through appropriate legislation and implementation.

One of the major national-level campaigns organized by NCPEDP was aimed at getting a question on disability included in the Census 2001. Another landmark achievement was the inclusion of disability concerns in the Union Budget for 2003-04, wherein the income tax exemption limit was raised and the customs duty on aids & appliances for the disabled was reduced. Even better, in the next budget it was completely waived. Two other major policy initiatives that NCPEDP brought about were the inclusion of the rights of disabled people in the agenda of the National Human Rights Commission and in drafting the relevant recommendations vis-à-vis disability for India’s X and the XI Five-Year Plans. Very recently, as a direct result of NCPEDP’s pressure, India ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD) on October 1, 2007.

Increasing public awareness.

The third of December is observed every year as World Disability Day (WDD). NCPEDP gave WDD new meaning in 1997 by introducing a program entitled, “Walk to Freedom”, a symbolic event signifying the distance people with disabilities had to travel to get their freedom. NCPEDP encouraged NGOs to organize similar walkathons across the country. The Walk to Freedom has now become a feature-event each year. World Disability Day is seen as an opportunity for the sector to come together to celebrate, have fun, express pride, and showcase their collective strength. WDD was given further thrust in 1999, when every state and union territory started celebrating it with a common theme and logo. Each year a new theme is taken up and NCPEDP makes sure that the message of the theme reaches far and wide through posters, films, TV spots, and by getting celebrities to promote the cause.

NCPEDP faced many challenges along the way. Most of the issues raised so far were met with tough opposition from the authorities and have required prolonged protests to get voices heard. Disability is still not the priority of the Indian government and the majority of the ministries do not have disability on their agenda. There is still a lot of work to be done in order to integrate the disabled into the mainstream.

Abidi is now building up a national force for ensuring the implementation of UNCRPD and XIth Five-Year Plan in order to move disability further up the national agenda. Thus, NCPEDP continues to be a force to reckon with. There are many young leaders who have been directly or indirectly influenced by NCPEDP and who are pressing ahead with the agenda of the broad-based disability rights movement.

Javed Abidi, age 43, Ashoka Fellow in India since 1998, is the Honorary Director and Founder Trustee of the National Centre for Promotion of Employment for Disabled People (NCPEDP). Affected at birth with Spina bifida, he became a wheelchair user by medical neglect. Nonetheless, he has been effective in giving political visibility and economic opportunities for over 60 million disabled people in India.

NCPEDP: National Centre for Promotion of Employment for Disabled People Mail: A -77, South Extension Part II, New Delhi – 110 049, India Phone: + 91 11 26265647, +91 11 26265648 E-mail: secretariat@ncpedp.org Web: www.ncpedp.org, www.dnis.org