A bureaucratic maze of forms and formalities dogs people with disabilities who seek the welfare they are entitled to.
Kanhaiya is all of 26 years old. One day I found him outside my house, parked on his tricycle, looking expectantly at me. When I asked him if he wanted food, he nodded. So I got some chapati and sabji, neatly packed in a plastic bag. It was when I handed the packet over to him and saw his inability to grasp it did I understand the magnitude of his disability. Kanhiya is 100% disabled according to the certificate issued to him by the medical board.
Kanhaiya and his older brother Bihari, 28, suffer from something called Spinocerebellar ataxia, also known as Spinocerebellar atrophy or Spinocerebellar degeneration. According to the Economic Times, it is “a progressive, degenerative, genetic disease with multiple types, each of which could be considered a disease in its own right.” D. Nagaraj, the director of the National Institute of Mental Health and Neurosciences, said in a Times of India article in 2009: “There is no cure for cerebral ataxia. At present, patients are provided symptomatic treatment. It is a degenerative disease where the brain stem starts shrinking. There are several type of cerebral ataxia, but Spinocerebellar ataxia is an inherited neurodegenerative disease. One in 10,000 are affected with this incurable disease in India.”
This works out to about 1.25 lakh patients in a population of 1.25 billion, if one considers the population of India in the year 2013. Considering the large number of patients, the information available in the public domain seems to be pitiful. Where are these patients and who is taking care of them?
That moment with Kanhaiya made me realise how little we know about disability. Kanhaiya, Bihari and their widowed mother are homeless and live in a jhuggi complex near the Dhanwapur railway level crossing in Gurgaon. The family has no source of income and the two brothers are collectively looked after by the various families who live in the same jhuggi cluster.
For a few days, I took it upon myself to feed Kanhaiya whenever he chose to drop by my place. The tricycle which Kanhaiya hand-pedalled was an old Red Cross issue and required frequent mending, so I decided to petition the Red Cross in Gurgaon to issue a new one. This was the start of my engagement with the district administration and an introduction to how government procedures work for people with disabilities without adequate means to support themselves. Getting a tricycle was not very difficult as I approached the deputy commissioner of Gurgaon, who is the head of the Red Cross in the district. It was a different matter that the tricycle was of an inferior quality and therefore lay abandoned.
According to the website of the social justice department, Haryana, social security pension schemes in the state include a disability pension scheme. People with disabilities are eligible to receive a pension of Rs 1,200 per month, provided they meet certain criteria, such as being at least 18 years of age and having a minimum disability of 70%.
Emboldened by the tricycle intervention, I decided to petition the deputy commissioner for a disability pension for the two brothers. He was most considerate and referred me to a point person in order to get the job done. I found that the state will not give a person with even 100% disability a pension until the necessary paperwork is done. This paperwork is not exactly easy to do.
The most important requirement for a person to receive a pension is a state domicile. This can only happen if one has stayed in Haryana for over three years. This has to be proved by showing a ration card issued by the state. However, how does one get a ration card? By showing one’s voter card? A voter card can only be obtained by showing proof of residence, which a homeless person does not have.
For Kanhaiya and Bihari, I needed to get a domicile made by the tehsildar on the recommendation on the patwari in the tehsil office. As this falls under the municipal corporation of Gurgaon, the counsellor of the area was also involved. Fortunately, deputy commissioner was also the commissioner of the municipal corporation. However, we still needed to fill out an application and attach affidavits worth Rs 10 each, which had to be made in the court complex where one can get stamp paper. The application and affidavits needed to be signed by the applicant and submitted to the tehsildar’s office. After this, somebody needed to follow up about the application.
Then, we had to fill up a separate form for a voter card in the Election Commission’s office. We also had to fill up the social justice form and attach all these certificates. People with disabilities also need a disability certificate, which is made by the disability board, which only meets every Wednesday at the Civil Hospital, Gurgaon. Further, we needed an Aadhar card, without which the paperwork would not be complete. This is a new requirement which is enforced despite the Supreme Court directive that it is not mandatory. For this, one needs to contact service providers who make Aadhar cards, but they had previously refused to make Bihari’s card because he could not affix his thumbprint due to his disability.
Even though all these offices are within a five kilometre radius of each other, the two brothers live over ten kilometres away from them. The commute is made doubly difficult because of the absence of decent public transport facilities for people with disabilities, the lack of ramps in public places and a lack of courtesy towards the disabled by the able-bodied.
The process that we started in January 2016 is still in progress. Meanwhile, Bihari had a close shave with death when an unattended bout of jaundice led to his haemoglobin plummeting to 1.5. Timely intervention saved his life.
Meanwhile, according to a Times of India report, the chief commissioner for persons with disabilities, Kamlesh Kumar, said that the new Persons with Disability Bill 2016 would be tabled in the monsoon session of parliament. The proposed bill expands the government benefits to 19 categories of disability from the current provision for only seven categories. 18 of these categories have been defined, while one has been left open for exceptional cases of disability. The bill also includes a recommendation for the creation of a commission for persons with disabilities.
Kanhaiya comes to my house every morning on his tricycle for breakfast, as cheerful as can be. He eats a couple of pieces of bread and a glass of lassi. Every day, he asks me about the status of his pension.
Abhay Chawla teaches at Delhi University