Bideshini has been working ever since she graduated from school. Currently, she is enrolled in the Bachelor of Social Work programme at the Indira Gandhi National Open University (IGNOU). She recalls one of her fondest childhood memories-- when my picture was published in a magazine called Anteswara. She didn't know anything about what a camera was or what publishing was…

Bideshini Patel

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How many lives will it take to shake the government out of its slumber and implement and better the disability pension schemes?

Suru Munda had been waiting for her disability pension for 15 years. Her parents were made to run from pillar to post, filling forms, meeting officials, and waiting endlessly each time. In August 2017, she lost her life to her disability, still waiting for her pension, the paltry sum of 300 rupees that the government had promised her under the Indira Gandhi National Pension Scheme. She was only 28.

Munda’s story is not an anomaly. It is the story of thousands of persons with disabilities who live in rural areas, and even in our towns and cities. ‘Divyang’ is what the Prime Minister calls them: those with divine abilities, for whom this year’s budget allocated 0.0039% of the total amount. 2.1% of our population or over 26 crore persons in India live with disabilities and 65.9% of them reside in rural areas.

The budgetary allocation is nothing but dismal. It is only the Schemes for Implementation of Persons with Disabilities Act fund which got an increase of 6.7% this year. The national fund created under the newly passed Rights of Persons with Disabilities Act found no mention in the budget. While the sports budget got a hike of 350 crores, the allocation for persons with disabilities saw a shocking slash from 4 crores to 1 lakh.

Meanwhile, Guinness World Records were created on the Prime Minister’s birthday last year; 989 persons with disabilities created the world record for simultaneously lighting the highest number of oil lamps, another record was set for the largest wheelchair logo, saying ‘Happy Birthday PM’, followed by the maximum number of people fitted with hearing aid in eight hours. Is distributing aid appliances in record-breaking time enough when the Scheme for Assistance to Disabled Persons for Purchase/Fitting of Aids and Appliances saw a slash of 20 crores?

Needless to say, Munda benefited neither from the government’s little money nor from its gimmicks. The veneration of persons with disabilities to those with divine abilities did nothing to improve her situation either. The only hope her parents had was from the pension that she was entitled to. But despite being certified as 65% disabled by the government, all they got were false assurances. “I filled up forms at the anganwadi, met the Sarpanch as well, but in vain,” says Munda’s father. Community Correspondent Bideshini Patel adds that the parents also met the Block Development Officer and representatives from some NGOs, but all doors seemed to have shut on them. After making the video, Bideshini also met the District Sub-Collector along with Munda’s parents. “Suru’s parents and I met the Sub-Collector as well, and the pension was expected to come from August. It is very unfortunate that she passed away just when the pension was supposed to come”, she says.

The Indira Gandhi National Disability Pension Scheme entitles those below poverty line (BPL) with above 40% disability in the age group of 18-79 to 300 rupees a month, which is a mere pittance.

“300 rupees is nothing, but her family was desperate for any little help that they could receive. Her parents work on the farm, they have little land and mostly work on other people’s farms as agricultural labourers”, says Bideshini.

In Odisha, the Madhu Babu Pension Scheme entitles persons with disabilities from BPL households, between the ages of 5-79 years, to 300 rupees per month if the person is not a beneficiary of any other government or government-aided pension. Amongst state governments, Odisha offers the lowest amount.

The Odisha government lists 19,85,024 persons with disabilities as pension beneficiaries (under the state and central pension schemes). But NGO reports paint a different picture. Swabhiman, an organisation which works on disability rights in Odisha, reported that on an average, only 17.4% get their disability pension in Odisha. For Sundergarh, Munda’s district, this figure is 18.2%.

“Suru’s isn’t a lone case, there are many people waiting for their disability pensions. For many of them, getting a disability certificate itself is a hurdle”, says Bideshini, recounting the repeated trips she made to officials to obtain a disability certificate in another case. “It took me a year. Initially, I applied through an NGO, but when that didn’t work, I went to the district hospital but they sent me to yet another hospital. Finally, when I met the Sub-Collector in Suru’s case, I spoke about this case as well and the pension started to come in from August.” The Swabhiman report cites difficulty in accessing the district hospital, difficulty at the Medical Board and commissions and bribes as the main reasons for not having a disability certificate.

However, even those with valid certificates often wait endlessly for their pension. In Sundergarh itself, 58.8% of the persons with disabilities have disability certificates but only 18.2% actually receive the pension.

PM Modi wants to use the term divyang to change the mindset of people towards persons with disabilities. But it does nothing to erase the stigma or to improve their material conditions. Disability rights groups have argued against the patronising term, just as they have called out the budget allocation. In Odisha, disability rights groups have demanded that the state pension amount be increased to 1500 rupees per month. Groups in the state have also demanded that electoral politics be made more inclusive of persons with disabilities, even demanding a 3% reservation in central and state legislative bodies. No further action has been taken on any of these demands.

At the very least, the government should implement its existing schemes. For someone like Suru Munda, even the sum of 300 rupees may have made a difference. But the government cannot stop there. The pension amount itself needs to be revised, no state is doing enough. Goa offers one of the highest pension amounts, along with some allowances and subsidies, but it also offers a marriage award of 25,000 rupees to encourage people to marry those living with a disability. Can a cash incentive take away the stigma that persons with disabilities face?

Needless to say, it is not enough to install escalators and ramps at railway stations. Issues of accessibility and mobility are important, and government campaigns like the Accessible India Campaign must do more to improve these in rural areas. But the state also needs to change the lens through which it sees disability. Disability is not a matter of charity which the state can address through a few hundred rupees a month in assistance, it is a matter of rights and needs to be addressed within this framework.

Article by Alankrita Anand