Authorities fail to be crutch for ‘disabled’ Poonch village

Dinesh Manhotra

Tribune News Service

Jammu, December 10

In a remote mountain village of Mandi tehsil in Poonch district, every fourth person has a physical disability due to a rare skeletal disorder that remained unidentified for decades.

Although a team of the biotechnology department of Shri Mata Vaishno Devi University had identified the reason behind the disabilities, no concrete action has been taken to mitigate the woes of these villagers who are living in abject poverty.

“For so many years, I have been repeatedly raising this issue on all platforms, be it the Legislative Council or in the district development board meetings. Promises are made but nothing is done,” said Shahnaz Ganai, former MLC, who belongs to Mandi.

Poonch DC Rahul Yadav, however, claimed some effective steps had been taken to check the disease. “It is now scientifically established that the cause of this disease is hereditary and an awareness campaign has been launched so that villagers do not carry forward this disease,” he said.

He said a piece of land had been identified between Mandi and Arai village to set up a rehabilitation centre for differently abled villagers of Arai.

Moulvi Fareed Malik, a resident of Arai, said the disease struck children in the age group of five to eight years. “It starts with pain and swelling in joints and finally, victims become disabled,” Fareed said. “Although every fourth person of Arai Malika village, comprising a population of nearly 2,000, is suffering from this disease, 87 of them are completely bed-ridden,” he said.

Fareed rues that no effective steps had been taken to rehabilitate affected families. “Some families are virtually on the verge of starvation because most of their members are disabled,” he said.

Former chairperson of State Social Welfare Advisory Board Nirmal Gupta had brought the plight of Arai villagers to the notice of former Governor NN Vohra. “It was all due to the intervention of NN Vohra that the health department as well as the SMVDU had conducted a detailed study of the village and identified the cause of the disease,” she said. She rued that no follow-up action had however been taken during the last couple of months. Vohra had directed the CEO of the shrine board to hold consultations with Dr MK Bhandari, the then Commissioner, Health and Medical Education, to plan the further course of action.

Cause of disease 

Experts from Shri Mata Vaishno Devi University had undertaken a genetic investigation of the disabled persons and identified the disease as a very rare skelton disorder known as “progressive pseudorheumatoid arthropathy of childhood”, also known as “spondyloepiphyseal dysplasia tarda with progressive arthropathy”, which is an autosomal recessive genetic disease. The main reason for the spread of this disease has been identified as consanguineous marriages prevalent in this village.

Another village, same plight

The State Human Rights Commission has already served a notice to the state government for adopting a casual approach towards providing medical aid to Paralkot village in Poonch district. More than 80% population of this village is deaf and dumb, but no serious efforts have been made by the authorities to find the reason.