According to one study, Indians spend Rs 72,000 crore per annum in caring for their disabled family members. The government bears only a fraction of this cost
"There has been a systematic neglect of the disabled people in India," says Javed Abidi, chairman of the National Centre for Promotion of Employment for Disabled People (NCPEDP). "Be it in the area of education, employment or access, the starkness will stare you in the face. Even without number-crunching, we can see that 99% of the disability-related NGOs are working in the area of service delivery -- special schools, welfare support or vocational training. Still, the government officially admits that less than 2% of disabled people are getting educated. So when the government makes education for all a fundamental right, who do they mean?"
"Government figures also put the number of disabled people who are employed at less than 1%," continues Abidi. "This only means that officially 99% of the disabled cannot find employment. Some amount of service delivery is necessary but (and I will surely invite wrath from some quarters for saying this) there has been an undue emphasis on service delivery. The larger picture is lost. Both NGOs and the government have to be squarely blamed for this. It is time for some serious introspection. Talk to a disabled person and see how frustrated and bitter he or she is at how poorly his or her concerns are represented. Do we really think masala-grinding, envelope-pasting and candle-making can make a disabled person self-sufficient?"
The six-year-old, Delhi-based NCPEDP has been in the process of setting up the National Disability Network (NDN) which seeks a paradigm shift in mainstreaming the disability issue with a "simple, pragmatic, doable, time-bound action plan."
The disability sector has witnessed a significant change in direction in the past decade. Less than 15 years ago, even involved activists clubbed the needs of the disabled under the 'charity/social welfare' section. Then came the refreshing outlook that here were 'differently abled' citizens with rights and entitlements. Says Jayshree Raveendran, founder of the country's first cross-disability magazine, a pioneering radio programme and the Ability Foundation, "It is really heartening to see the positive strides that the disability sector has taken in the last five years alone. There is a wider acceptance, awareness, empathy and solidarity today. In end-1995, when I spoke about my vision for an organisation like Ability Foundation, many were sceptical. Programmes which integrated the disabled with mainstream performers were unheard of. Today, rapid increase in the activities of a human rights umbrella NGO like Ability Foundation is proof enough. Since we are more on to advocacy than rehabilitation, not only do people understand, they also support."
Information, and therefore the power of knowledge and empowerment, has been conspicuous by its absence. Till the 2001 census, the number of disabled people in the country was not even known. Pre-Independent India did know, even though the British motives for counting the handicapped and leprosy-afflicted were suspect. Says Abidi, "The Census covers gender, caste, religion, whether a person lives in a pucca or kuccha house, whether he or she possesses a bicycle or not and even whether he or she is vegetarian or non-vegetarian! But it was only after repeated appeals and a massive campaign which included huge dharnas and a deluge of letters and faxed messages to the PMO (Prime Minister's Office) that Question No 15 -- the one on disability -- was included. It takes a huge effort to even ensure the basics. That is the appalling level of neglect. The Government of India put the imagined figure of the number of disabled at 1.9% -- so low that it was easy to pretend that everything was hunky-dory and no special attention was required for the disability sector. Compare this to the UNDP figure for developing countries, which stands at 10%, and the Asia-Pacific average of 5-6%. Finally, we now have the officially accepted number of 70 million disabled people in the country -- an estimated 7% of the population! Cross-disability research and advocacy is the need of the hour. Only when we act as one voice will we be considered worthy of policy attention and outlays."
The aim of the National Disability Network is to ensure that the cross-disability rights movement is spread equitably across the entire country. Presently, NDN has partners in all states and Union Territories and the state-level coordinator in turn networks with three district partners. NDN is a completely non-financial endeavour which operates on a decentralised philosophy facilitating the flow of authentic, credible and timely information.
According to a study conducted by McKinsey and Company, it is costing the nation as much as Rs.72,000 crore per annum to care for its disabled citizens. Mostly it is the parents, siblings, friends or welfare organisations which bear the 'burden'. Says Abidi, "To put it simply, the Government of India never feels the pinch!"
The Disabled Rights Group, a non-political advocacy group for the rights of disabled people is campaigning with a list of 12 demands which includes raising income tax exemption levels for families with disabled people, centrally located offices of government officials concerned and taking steps to standardise Indian sign language.
Clearly, the road ahead is a daunting one. People with disabilities have to contend with archaic notions and widespread insensitivity. One more example of this skewed reality can be seen in the area of import duties. Customs duties on semiprecious stones and raw cultured pearls is 5% while the duty on hearing aids is 15%. If cordless handsets are charged only 15% duty, purchasers of crutches and artificial limbs have to shell out 25% as surcharge. Tanks and armoured fighting vehicles can be imported with no duty requirement although motorised/mechanical wheelchairs and components thereof are charged no less than 30% by way of customs duty.
Says Abidi, "I am only wheelchair-bound and yet, at virtually all Indian universities, I cannot access classrooms and libraries. All I am asking is to be allowed to study and work with dignity and safety. Service delivery for the disabled is easy, quantifiable and visible whereas advocacy is none of the above. Till 1998, the UGC did not even have a policy on disability. Why, in Chennai, the office of the Commissioner of Disabilities is on the first floor of a building which does not follow the Barrier Free Environment guidelines! Even where we have laws, we don't have implementation. The results of advocacy will be known only over the next five years. It is vital. The sad part is that it may be already too late for so many of us."
(Lalitha Sridhar is a Chennai-based freelance journalist)
InfoChange News & Features, June 2003