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Giving Visibility to the
Disabled in India
By Arundhati Ray
The event was a gala affair on a magnitude never before dared. Banners and posters and blue-and-yellow pennants – the international colors of disability – fluttered brightly in the breeze.
Law for all: Javed Abidi (in wheel chair at left) at a cross-disability rally organized by the Disability Rights Group to demand passage of the Disability Act
On December 3, 2000, World Disability Day was celebrated in New Delhi, India, by close to 5,000 persons from every sector of disability. Coordinating this spectacular expression of joyousness and unity was 35-year-old Javed Abidi who, with seemingly inexhaustible energy, appeared to be in all places at once.
There was no doubt that he was the master of ceremonies. Yet, it could also be said that he was the principle architect of the moment.
Historically speaking, in India this day has been marked by tokenism or protests. But this gathering was an emphatic, unqualified celebration. For, the year marked not only the fifth anniversary of the sector being granted critical legal rights; 2000 also witnessed the sector's hard-won victory to get disability included in the 2001 Census.
Back in 1992, Abidi's mind was made up: "One less journalist will make no difference; but one more advocate for the disabled may have some impact." His exit from journalism probably created few ripples. But the addition of this advocate for the disability sector has dramatically transformed its landscape.
Abidi has been pivotal in creating political and social visibility for an invisible constituency and has been instrumental in empowering it legally and economically. Most vitally, by facilitating bridges in a landscape marked by fissures and islands, he has catalyzed India's first cross-disability movement.
Affected at birth by spina bifida, Abidi was consigned to a wheelchair by the age of 15 due to a series of medical misdiagnoses. But he insists that it was chance that engineered his professional contact with disability issues.
"I had recently returned from the U.S. with a degree in mass communications and was happily working as a freelance journalist," he said. "An unplanned meeting with Sonia Gandhi (Congress President and widow of assassinated Prime Minister, Rajiv Gandhi) led to an offer to set up and head the disability department in the newly established Rajiv Gandhi Foundation – a non-profit focusing on areas of social need."
A week later, Abidi joined up and began educating himself about the disability scenario in India. And what he learned appalled him.
The Grim Scenario
The official estimate of the disabled population in India – based on an ineffectual enumeration for the 1981 Census wherein disability was defined as "totally blind," "totally crippled" and/or "totally dumb" – was 0.1 percent. A completely unbelievable figure, when compared to nine percent in U.S.A, 18 percent in Australia, five percent in Nepal and 4.9 percent in Pakistan. Non-government (conservative) estimates put the figure closer to six percent, or some 60 million people.
The Bare Facts About Disability in India
- 5-6% of India's population is disabled, which adds up to over 70 million Indians.
- Less than 1% of disabled children receive education of any kind.
- Since the setting up of the first Special Employment Exchange by the government in 1959 only about 1,00,000 disabled persons have been employed.
- According to the National Sample Survey (NSS:1991), more than 7 million employable disabled people were still waiting to get a job.
- A disabled activist had to file a PIL (Public Interest Litigation) in the Supreme Court in order to make travel accessible and disabled-friendly. While the domestic airline now offers disabled citizens 50 percent discount on tickets, aisle seats and an ambulift, buses and trains in India continue to be inaccessible for the average disabled person.
- Almost all public buildings continue to be inaccessible and non-negotiable for a disabled person.
Go Figure . . .
A study of the top 10 corporate houses in India found that hiring the disabled is not a priority concern.
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Yet . . . the average percentage of employees with disabilities is only 0.4%:
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- The public sector employed 0.54%
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- The private sector employed 0.28%
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- In multi-nationals, employment is a low 0.05%
Source: NCPEDP, 1999
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This vast constituency had virtually no legal muscle nor a coherent government policy to facilitate its socio-economic empowerment. Less than one percent of disabled children were in schools and barely 0.5 percent disabled adults were employed. What was disturbing too, was the dearth of information – qualitative and quantitative – on the sector.
If government apathy shocked Abidi, what enraged him was the sector's abdication of responsibility toward its members. As his work with the Foundation introduced him to the CSOs (civil society organizations) and players in this sector, as projects took him to the remotest rural pockets to inform thousands of disabled persons and their families, what he noticed was the absence of unity within the sector and the myopia that afflicted it.
He recalls with disgust, "It was the blind for the blind, the deaf for the deaf: everybody so caught up in service delivery that they had lost sight of the big picture and consequently, none of the fundamental issues were being tackled."
His wrath was fuelled by his research that revealed the advances made by poor countries like Sri Lanka in terms of disability rights, and also by his personal experience of the U.S. "Even as a kid, when I was in Chicago for an operation, I saw how technology could enable even a paraplegic to function at a demanding job," he said.
The policy-maker and the picket leader: At a protest in New Delhi in connection with the Disability Act, Abidi negotiates with a policeman to be allowed entry to Shastri Bhavan, seat of India?s law ministry
"Later, as a student in Wright University, Ohio, where the campus provided 100 percent accessibility for disabled persons, I realized that being disabled didn't necessarily mean dependence." And yet, in India, the disabled remain in their prisons of dependency thanks to an indifferent government, an ignorant public, and a disabilities sector doing little to change the system.
Personal is Indeed Political
Until this point, Abidi had viewed disability essentially as a personal issue. And, because of his largely positive experiences in this respect – thanks to a supportive community of family and friends – he had not looked beyond himself. But now he was forced to see how Indian society marginalized the disabled from the mainstream.
The odds are stacked against the disabled in India, right from the absence of basic facilities at public places like special toilets and ramps, the lack of educational and vocational training opportunities, to the non-existent options for satisfying careers. Add to this, the pervasive attitude of condescension and pity toward the disabled, and one can understood the harmful fallout of a society offering its disabled members charity instead of opportunity.
As his own experience of disability became part of a larger perspective, the boundaries between personal and political began to collapse and the persona of Javed Abidi, activist, started evolving. It was galvanized into full-fledged existence in 1994 when he and seven others, covering between them a range of disabilities, formed the Disability Rights Group (DRG) – India's first cross-disability activists' body. Positioning itself as a non-political pressure group, it is focused at issues that have large-scale implications for the sector.
First on their agenda was the passage of "The Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Bill" that sought to provide, for the first time, a comprehensive legal framework for ensuring the rights of the disabled. Under the Indian Constitution, for a Bill to become an Act, it has to go through a number of steps. The Bill is presented to Parliament, to be passed by both houses. The basic framework for this Bill had been conceptualized by the government as far back as 1988, but had since been lying in bureaucratic limbo.
The Group shot off letters to political parties, concerned government departments and the press to mobilize awareness about the proposed legislation and to pressurize its swift passage. Simultaneously, realizing the importance of visibility, on December 3 that year, under the aegis of the Group, some 500 disabled persons marched hand in hand along Delhi's Parliament Road. Virtually overnight, because of the tremendous media response, the disabled sector broke out of the nation's blind spot.
The Group also lobbied successfully for significant changes in the proposed legislation. For example, the raising of the Income Tax rebate limit for disabled persons from the proposed Rs.20,000 to Rs.40,000; and modifying the existing policy on jobs to ensure that the three per cent reservation applied to all and not just the two lowest grades of government jobs.
Hectic negotiations and lobbying continued through the year. Finally, in December 1995, on the last day of the winter session of Parliament, the Bill was presented to Parliament and was passed immediately by both houses, a landmark in itself.
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The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995
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I Who is this Act for, or Disability as Defined by Indian Law
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Disability refers to:
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- Blindness, i.e.
- Total absence of sight
- Visual acuity not exceeding 6/60 in the better eye with correcting lenses
- Limitation of the field of vision subtending an angle of 20 degrees or worse
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- Low vision
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- Leprosy-cured, where a person has been cured of leprosy but continues to suffer from a range of physical conditions such as physical deformity which prevents him/her from undertaking gainful economic activity
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- Hearing impairment – loss of 60 decibels or more in the better ear
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- Locomotor disabilities, i.e.
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- Disability of bones, joints or muscles leading to substantial restriction of movement of the limbs
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- Cerebral palsy
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- Mental Retardation, defined as a condition of arrested or incomplete development of mind, especially characterized by subnormal intelligence
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- Mental Illness defined as any mental disorder other than mental retardation.
II The Law demands the Government take steps for the prevention and early detection of disabilities including:
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- research and investigation
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- regular screening of children
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- organization of awareness campaigns
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- providing facilities for staff training at primary health care centers
EDUCATION
Provides
- free education in an appropriate environment
- special books and equipment that s/he needs for his/her education free of cost
- free uniforms, books, etc
- transport facilities to enable school attendance
Ensures
- the removal of architectural barriers from learning institutions
- appropriate modifications of curriculum and examination systems
- 3% of seats in Government institutions reserved for disabled students
Actively promotes research and development of
- teacher training modules for special education
- assistive devices such as special teaching aids necessary to give a disabled child equal opportunity in education
EMPLOYMENT
- Identifies posts which can be reserved for disabled persons
- Reserves 3% of all government positions for the disabled
- Promotes training and welfare schemes for the disabled
- Monitors health and safety measures and creation of a disabled-friendly environment in places where the disabled are employed
- Provides incentives to private and public employers to ensure that at least 5% of the workforce is made up of disabled persons
NON-DISCRIMINATION
Ensures
- all public transport facilities to be totally accessible for the disabled
- all public roads should be disabled-friendly, i.e. with curbs cut away for wheelchairs, installation of auditory traffic signals, engravings on the surface of pedestrian crossings for blind people, etc
- all public buildings are accessible and negotiable through the installation of ramps, Braille symbols and auditory signals in elevators, toilets adapted for wheelchairs, etc
- that disability is not a factor in denying promotions or making a person redundant
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"The importance of this Act cannot be overstated," stresses Abidi. "True, even today, implementation does pose a challenge, but at least now there is a legal framework protecting their rights, where previously they had virtually none."
The Winds of Change Doth Blow
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The merging of worlds: bookmarks, like this one demonstrating that a disabled child is no different from a non-disabled youngster, are part of NCPEDP's vigorous public education programs
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In Calcutta, very recently, the stairs leading to the office of the Disability Grievance Cell have been supplemented with a ramp. This is the work of the Disability Activists Forum, one among the many cross-disability activist groups that DRG has helped initiate, and which act as regional watchdogs and pressure groups to promote the interests of the sector.
Debasis Biswas, DAF member explains, "The group has instituted a workforce to push for implementation of the rights of the disabled guaranteed by the Act and regularly interfaces on this issue with the Ministry of Social Justice and Empowerment; focuses on disseminating information; and organizes cross-disability rallies and events.
On September 29, 2000, 15 CEOs of the country's top IT firms met at for a roundtable conference in New Delhi. Amazingly enough, they were discussing a non-technological issue: employment opportunities in the IT sector for the disabled.
The meeting culminated in a consensus on the educative value of the event and commitments to make hiring policies more disability-friendly. It was easy to mistake the young, bespectacled panelist in the dark business suit as one more member of this high-powered league – he certainly seemed in his element in this environment, subtly, yet unmistakably, controlling the proceedings. But in fact this was Abidi, in his role as Executive Director of the National Centre for Promotion of Employment of Disabled People (NCPEDP).
Like a chameleon, the banner-toting, police-provoking, government-heckling activist can effortlessly transform himself into a suave marketing wizard, perfectly at ease negotiating with top bureaucrats, head honchos of the corporate sector and the country's senior policy makers. "I wear several hats – depending on what I need done," Abidi explains gleefully. At the IT roundtable, one sees the sophisticated, cerebral Abidi at work.
Roping In the Corporations
The NCPEDP was conceptualized and set up by Abidi and a group of others from the RGF, in acknowledgement of the fact that among all issues affecting disability, the most neglected is economic empowerment. In 1997, under his leadership, the center launched a multi-pronged program aimed at facilitating employment for disabled persons, which not only creates employment opportunities but also prepares the sector to use these openings.
Working closely with apex bodies like the Confederation of Indian Industries in structuring policies (it was Abidi who made them expand their social agenda to include disability), the NCPEDP is working toward making the corporate sector more disability-friendly.
Simultaneously, specific industries are also being targeted for strategic tie-ups: the September IT meet served to inaugurate a nationwide campaign to sensitize corporations. And, if a company had already demonstrated a disability-friendly hiring policy, the NCPEDP may partner with it to make an impact on the entire industry.
Says V. Iyenger, CEO of INFAR India, a multinational drug company: "We've had a disability-friendly human resources policy for a while, but Abidi rocket-launched it into its second phase. The approach now is to work on spreading these policies across the pharmaceutical industry by working with the industry's apex bodies."
Making a Statement in Yellow and Blue
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The next time you buy an Indian product, check to see if it bears a yellow and blue label of a figure in a wheelchair joining hands with a standing figure. This is NCPEDP's recently launched disability-friendly corporate logo that proclaims that the manufacturer employs disabled people without prejudice. Providing visibility to a corporate-disability partnership, the logo is part of NCPEDP's efforts to introduce incentives for corporations to employ the disabled.
It also instituted the Helen Keller Award in 1999 to salute institutions or individuals who have contributed significantly to promoting employment without prejudice for the disabled. Additionally, NCPEPD is actively lobbying with the government to redefine an ambiguously worded clause in the disability Act which promises to "provide incentives to employers" who employ a minimum number of disabled persons.
NCPEDP's Helen Keller Award recognizes individuals or corporations who have made significant contributions to economically empowering the disabled and is designed to function as an incentive to promote employment of disabled people. In 2000 Tata Tea, one of India?s largest tea companies, was a recipient. Here, children with a range of disabilities – including cerebral palsy, hearing impairment, orthopedic handicaps and mental retardation – attend the company?s School for Special Children in one of its tea estates in south India.
Ensuring that the Disabled are Employable
But as the corporate sector opens its doors, the challenge of making the disabilities sector employable must be tackled. NCPEDP is doing this by focusing on the two areas – education and access to facilities – where large-scale systemic change must come about for the disabled to attain economic self-sufficiency.
The center is working with government policy bodies, like the University Grants Commission, to formulate guidelines for a scheme to provide the disabled with special facilities like improved access on campuses, special equipment and courses for special educators. Frustrated by the government's feet-dragging in instituting scholarships for higher studies for deserving disabled candidates, the center, in partnership with Shell, set up the NCPEDP Post Graduate Scholarship.
If education is crucial, access to education and other facilities – be it transport or books – is critical. During a 1999 visit to India's premier National Institute of Design, Abidi pointed out that the campus was non-negotiable for anyone with movement handicaps. Today, as a result of sensitization workshops, NID is 100 percent wheelchair accessible and the syllabus includes a compulsory module on disabilities and design.
The center also works with the Council of Architecture, a body that moulds India's future infrastructure, designers and design policy. And the results are already beginning to show: from Delhi's upcoming subway rail system that will have every access facility for the disabled, to buildings like the city's Habitat Centre – a multi-theater complex.
Professionalism: the Mantra of Success
Corporate decision-makers and heads of the bodies that NCPEDP interfaces with are unanimous in their assessment of why the organization is so successful at the negotiation table: its highly professional approach; its possession and strategic use of a range of data to make its point; and invariably, what gets referred to is Abidi's personality and communication skills.
"Abidi visited our office and that one meeting resulted in my realizing that disability was a serious problem in India?what he said came straight from the heart," says Pradeep Gupta, Helen Keller Award winner and CEO of Indian IT giant, Cyber Media India Limited, to explain what sparked off his support for the disabled.
Well honed by his active involvement in debating clubs and student politics while at university in India and the U.S., Abidi's oratory powers were put through a test of fire in 1997. Abidi slapped a public litigation suit against the government and Indian Airlines, the national carrier, because of his personal experience of their wide-scale infringement of the disability Act. He represented himself in the Supreme Court and was pitted against the government's top lawyers (including the Advocate General!).
Abidi won a resounding victory. The result of this landmark victory is that today, the disabled can avail of a 50 percent discount on Indian Airlines tickets, use the facility of an ambulift, be assured of aisle seats, and expect a customer-friendly attitude.
Arresting attention: Javed Abidi (lower center, dark glasses) and other disabled protestors being packed into a police jeep after having courted arrest at a rally to draw attention to the inadequate representation of disabled persons on the committee set up to structure the Disability Act
"We have this habit of writing/following up letters with concerned bodies," says Rama Chari, Program Officer with NCPEDP. Hardly surprising, since her boss believes his most important advocacy tools are letters.
For Abidi, whether he is in activist or policy-maker mode, the "power of a single communication can never be underestimated." From polite proposals to industry federations, interested inquiries to bureaucrats, angry demands for action to the government, to letters to CSOs and networking partners that charm, wheedle, provoke and congratulate – Abidi's range of epistolary tactics is overwhelming.
And concomitant to this strategy is information dissemination. "There is nothing like hard statistics to bring home a point," stresses Abidi. Being armed with a range of relevant data elevates NCPEDP to a strong negotiating position. And since the lack of information itself is a major weakness, the organization also undertakes independent research to gather data.
Victory Through Organization
Abidi prioritizes networking, driven by the mission to cement the gaps in the mosaic of disability organizations across the country. The DRG has spawned a number of similar cross-disability activist groups across the country and the NCPEDP is working systematically to create a network.
The DRG has established partnerships with one disability organization in every Indian state and union territory. These partners forge links with five district bodies each, thus spreading the web outwards and downward. With these partners, NCPEDP ensures that its campaigns take on a national character.
The marketing-savvy Abidi recognizes the importance of spectacle to grab the attention of the media and the public and render visible an invisible population. Every demonstration or seminar is positioned as a marketing and awareness-building opportunity. Along with its partners, days like World Disability Day are celebrated in a fashion designed to attract public attention.
This has resulted in the disability movement being reinforced from within and without. And had it not arrived at this position of relative strength, it is doubtful whether the sector in India could have survived the blow that was delivered to it in on World Disability Day 1999.
That was when the disabled population learned that disability would not be included in the 2001 census. The reason: the government believed it was beyond its resources to execute an effective enumeration.
As census data play a critical role in shaping policy and in defining thrust areas for those working in the social sector, the implications of non-inclusion are obvious. Urgently-needed policies, programs and services for India's 60 million disabled people will simply be ignored. To neglect the developmental needs of such a vast segment of potential human resources has repercussions for the nation as a whole.
Disability was chucked out of the census in 1931. It made a brief and ineffectual appearance in 1981, and was excluded thereafter. When the bad news broke, the sector swung into action and launched an awesome campaign.
Disability groups across the country joined hands with each other and with other CSOs and media to force the government to change its decision. Under the sustained pressure of rallies and dharnas (demonstrations designed to disrupt normal life), letters and meetings and daily onslaughts by the press, the government was forced to relent.
On June 11, it was announced that disability would be included in Census 2001. The victory was even more complete since this time the approach to disability will be a more enlightened one. The 2001 census will consider any person who suffers even partially from impairments related to sight, speech, hearing, movement and mental processes, as disabled. Currently, disability groups are working to ensure comprehensive and effective enumeration.
A poster designed by the Indian Institute of Cerebral Palsy as part of the Census 2001 campaign. The inclusion of Disability in the 2001 census was a major victory for the disability movement and one made possible by the sector coming together as a unified force. DRG and NCPEDP played a critical role in that unification, and are using their networks to ensure that the Census is a success.
The Long Journey Ahead
But even as we discuss these markers of progress, Abidi, like the poet Browning, remains driven by the knowledge that the petty done, the undone remains vast. Initially adamant in his belief that it was impossible to have long-term plans in his chosen vocation ("Each day brings a new challenge and you scramble and face it the best way you can"), he eventually does share a vision of the future. A time when the sector is totally professionalized with an apex body akin to the Confederation of Indian Industries coordinating it.
The wistfulness that accompanies this dream gives way first to exasperation with the government that Abidi said is "doing so little about implementing its policies – practical progress is almost entirely due to private initiatives," and then anger, as he lashes out against the sector itself. "The movement is being compromised by a few powerful NGOs who continue to function on a short-sighted basis, refusing to see how their unwillingness to take a stand against the government when necessary, is fracturing the sector and slowing down the entire process of empowerment.
"So far I've tried to create bonds within the sector, but now I'm going to divide it up," Abidi said. "There can be no more sitting on the fence: people have to choose whether they want to join us on our tough journey toward empowerment; or stay with those who take the easy road of no resistance, happy in their petty little fiefdoms."
Strong words and yes, much remains to be done.
Yet, this December 3, when the celebrations were formally launched with a disabled child handing over the disability flag to a non-disabled child and receiving in return the national flag, the moment was incredibly poignant. One believed the merging of the two worlds, symbolized by the tableau, was no longer entirely confined to the realm of the imagination. Javed Abidi has played a critical role in sculpting this nascent reality and there can be little doubt that he will continue to give it form.
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Needs:
The NCPEDP welcomes financial donations and volunteers to assist in projects.
Contact:
Javed Abidi
Executive Director
NCPEDP
25, Green Park Extension
Yusuf Sarai
New Delhi 110 016
India
Tel: +91-11-696-7910
Fax: +91-11-696-3030
Email: ncpedp@vsnl.com
Arundhati Ray is a Calcutta-based freelance journalist and writer with a special interest in the social sector. She also runs a career counseling and placement service for women.
January 2001 Journal Home Page
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