AS AADHAAR gets linked to a growing number of government schemes, the largest village of J&K’s border district Poonch is facing a problem. A rare genetic disorder has left 84 people in Arai with disfigured hands, and hence unable to register for Aadhaar cards, which need fingerprints. A team set up by the state government has failed to offer a solution, while their appeals to the Centre for help over Aadhaar cards have so far seen no response.
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Says Poonch Deputy Commissioner Mohammad Harun Malik, “The government is yet to devise a system for people who do not have hands, or are blind or whose hands are disfigured. With every government service delivery system linked to Aadhaar, these people may not be able to even get a bank account opened to get their disability pension if the issue is not resolved.”
District Social Welfare Officer Nayeem-ul-Nisa Bhati says the monthly disability pension hasn’t been paid to those in Arai since April last year, when the amount was revised to Rs 1,000 from Rs 400. While irregular funds is one reason, for many in Arai, the nearest bank branch or post-office from where the pensions can be drawn mean a 3-8 km trek through the hills.
The department is moving towards transfer of money directly into accounts of beneficiaries, but nearly a dozen Arai disabled still receive funds through money orders as they do not have an account, and are now having trouble opening one.
Even existing account holders are worried as they have been told to submit their Aadhaar numbers to link them to the accounts.
The plight of Arai, which has a population of nearly 6,000, was brought to the notice of Governor N N Vohra by Nirmal Gupta, chairperson of the State Social Welfare Board, after a visit to Arai. Following the Governor’s intervention, the Health Department took up the matter, and has since described the illness in Arai as “a chronic genetic disorder apparently caused by consanguineous (intra-family) marriages”. It is setting up teams to spread awareness in the village on the ill-effects of marrying within the family, besides identifying patients who need surgical corrections or can be provided prosthetic aids, as well as those who need palliative care.
Seventy-four of the 84 people affected in Arai are in the Malkan panchayat, which has a population of under 2,000. Almost every household here has seen a marriage within the family, and every sixth house has one or two disabled members, and some have up to five.
The village has no doctor at either of its two government medical sub-centres. These centres are located in the other two panchayats of Arai, Haveli and Peeran. While one sub-centre has just a pharmacist and safai karamchari, another has just one dispensary dealing in ‘Indian System of Medicines’. Deputy Commissioner Malik says over 90 posts for doctors are vacant across Poonch district.
Moulvi Mohammad Fareed Malik, 36, says that after he failed to get an Aadhaar card for the fourth time a couple of months ago, he met Union Minister of State in the PMO Dr Jitendra Singh, who belongs to Jammu. “He assured me he would look into the matter.” Fareed, who has floated a front to highlight the problems of the disabled in Poonch and Rajouri districts, last got his disability pension in March 2016.
Says Fareed, “Whenever I meet a minister, he says Rs 3 crore has been given to Malkan panchayat for development. I fail to understand where this money has gone.”
The disease strikes early, when people are in the age group of five to eight years. It starts with pain and swelling in the joints, finally leaving those afflicted debilitated. The team of experts from Jammu University and Shri Mata Vaishnodevi University did DNA profiling of the villagers and identified the disease as “a very, very rare” skeletal disorder known as Progressive Pseudorheumatoid Arthropathy of Childhood. It said the main reason for the ‘autosomal recessive genetic disease’ was “consanguineous marriages prevalent in the village”.
The villagers, however, do not have believe this theory. Mohammad Sharief, who is married to his cousin Hameeda, asks why only his eldest daughter, Naseem Akhtar, 28, is suffering from the disease among his five children.
Mohammad Din, 70, who is married to a distant relative, Fatma Jan, gives the same logic, pointing to the fact that only two of his five children are among those afflicted.
“Yeh Allah ki maar hai (It is God’s curse),” stresses Haji Mumtaz.
Prof (Dr) V Verma, Dean, Faculty of Engineering and Head of Department of Bio-Technology whose experts conducted the DNA profiling of the Arai villagers, says they are still looking into whether the gene behind the disorder can jump generations. He also ruled out the possibility of the disability being caused by a water-borne disease, as villagers like Fareed argue. “Had it been so, it would have affected everybody in the village instead of remaining confined to some families,” Verma says.
In their defence, the villagers say that given their poverty and history of illness, it is difficult for them to find a spouse from outside Arai. Haji Mumtaz, who is the biggest landowner in the village, says, “I am called mahaldar (a rich man). All I have is 5 kanals of land on which I can grow only one maize crop a year. The total maize yield comes to around 100 kg; 50 per cent of which is damaged by wild animals.”
No one from Arai is in any government job, and in the absence of profitable land holdings, most work as construction labourers or as coolies in towns.
Deputy Commissioner Malik says they can only tread cautiously as the doctors have not reached any specific conclusion regarding the disease so far. “Whatever we say is basically meant as a precautionary note to reduce the chances of getting affected, like telling people not to eat cereals grown locally, or have only tap water supplied by us from springs, or avoid marrying within the area. The disease is still a matter of research.”