A strange, disabling affliction — undiagnosed, unnamed — has become the scourge of the people of a village in Poonch, says Baba Umar
SURROUNDED by mountains of the Pir Panjal range, Adai village in Poonch district of Jammu & Kashmir is a stranger to development. Like many other villages in the region, phrases like sick infrastructure, lack of transport, ailing healthcare, erratic power supply and unhygienic drinking water have for years described Adai’s profile. However, a strange affliction that renders its victims crippled or impaired for life has changed the way people refer to Adai. “It is now called a village of the deformed,” says Riyaz Ahmad, 35, a madrassa teacher from Adai, who led us up the mountain path to his village, 235 km from Jammu.
The last macadamised road ends 2.5 km before Adai, and then one must cross a narrow iron bridge over a gushing stream at the foothills. In this village, where the government is almost missing, a strange disease is fast robbing the inhabitants of a healthy life. Abdul Baki, 65, was like any other man with a medium built until his body began shrinking, his bones became frail, the joints started to bulge, and his legs buckled inwards at the knee. “This happened when I was 20,” he says. A small hump appeared in the upper back and his head sank into his shoulders, concealing the neck entirely, leaving him with a short and slouching posture for the rest of his life. The cause of the disorder was never discovered.
“We are the living dead of this village, a burden on those who are able-bodied,” rues Baki, who used to weave yarn for traditional winter clothes. His nephews, Mohammad Aslam, 34, and Dawood Ahmad, 13, too are hit by the strange disease. “I do my best to care for my children and brother Baki, but it’s tough, especially for a poor farmer like me,” says Aslam’s and Dawood’s father Ghulam Mohi-ud-Din.
When Aslam was about 14, he felt his veins were shrinking. Soon the muscles and fat on his bones were almost gone, while the joints in his legs and hands became swollen. Local doctors couldn’t put their finger on exactly what ailed him.
“I stopped going to school when the village boys started teasing me,” says Aslam. He is afraid his brother Dawood, a Class IX student, would face the same fate. Dawood was immunised against polio after his birth, but he too started showing symptoms of this unknown disease once he turned four. “Doctors in Jammu also failed to diagnose the case,” says Mohi-ud-Din.
In the adjacent house, Mohammad Farooq, 34, and his sister Shahnaz Akhter, 20, are both hunchbacked, another sister Naseem Akhter, 25, is mentally challenged, while their father Mohammad Shafi — the lone breadwinner — has a hearing problem. Shafi’s wife was the only one in the family who was not disabled, but she died a few years ago.
“Even though there has been a growing number of such cases, no government agency has ever visited the village to identify the disease, so we never got a chance to be treated,” says Farooq. The villagers have long been demanding a medical study to identify the cause of the disabilities. “But the government doesn’t seem to care,” Riyaz said.
‘We are the living dead of this village, a burden on the able-bodied,’ rues Baki, who used to weave yarn for winter clothes
Though the Social Welfare Department offers Rs 200-300 as a disability grant, it’s too small an amount to cater to the needs of Adai’s disabled. Moreover, receiving the grant means a monthly visit to the department’s office in Mandi town, 5 km away. Until recently, villagers would hire labourers for Rs 100 to ferry the crippled on their shoulders on the treacherous trek to Mandi and back.
“We stopped the practice when the labourers started charging more, while the Social Welfare Department would not increase the grant. Only those who can make it to Mandi on their relatives’ shoulders are getting the money,” says Farooq, whose sister is one of those who can’t.
There have also been cases where disabled persons, mostly children, have died. Thirty-five-year-old Hanifa Bi’s daughters Tasveer, 9, and 18-month-old Shagufta died some years ago. Both were disabled. “Another daughter Tahira, 9, too has stopped growing in size,” says Hanifa.
POONCH IS among India’s 250 “most backward districts” and one of three districts in the state currently receiving funds from the Centrally-sponsored Backward Regions Grant Fund programme; the other two are Kupwara and Doda. However, the locals complain that the benefits do not reach Adai. While the youngsters from the village who are not disabled prefer to leave and look for work outside, Adai is today inhabited mostly by the disabled and the old.
When we trekked further up the village path, the children, who often play among the walnut trees, ran into their houses and hid themselves. They do it quite often upon seeing a stranger. Rumour has it that children are often abducted from the cornfields and walnut orchards. “The disabled are more likely to be taken away and forced to become beggars,” says Mohammad Aslam, whose nephew Showkat Hussein, 13, is another of Adai’s disabled. “That’s why someone has to stay with Hussein always.” Ashiq Hussain Bukhari, Station House Officer of Mandi, however, calls these rumours “unfounded”.
Hussein was born a perfectly normal child. His father Mohammad Ayoub, a shopkeeper, made sure that the boy was vaccinated for polio. However, not only has Hussein never walked, but his height too has remained unchanged since he was four. The disease has weakened his bones. Like the others, he is hunchbacked and has bulging joints, legs twisted inward and curled fingers. “I want to play like the other children, hang from the branches of the walnut trees,” says the Class VIII student. “I think I’ll become a teacher,” he says timidly on being asked what he wants to be when he grows up.
His uncle Aslam carries him on his shoulders to school 2 km away. But as the boy grows older in the coming years, it would become impossible for anyone to carry him on the difficult mountain paths. “Forget going to school, I know many who haven’t even been to Mandi (the tehsil office and the nearest market) because there’s no one to carry them there. I don’t know what is going to happen to Hussein,” Aslam says.
Local health authorities claim that despite “serious efforts”, there has not been an exact diagnosis of the disease yet, though it has been prevalent for the past 60 years. “It starts with a joint pain and ends up crippling the victim for life,” says Dr Younus Chowdhury, Chief Medical Officer (CMO), Poonch. “The oldest victim is 60 years old and the youngest is only five.”
Of Adai’s population of 25,000, the official believes, nearly 100 persons are affected. Villagers call this a gross underestimate. Adai comprises three panchayats, including Adai Malkan. Only among the 300 persons living in Adai Malkan C — a part of Adai Malkan panchayat — villagers claim 200 are affected, while the CMO puts the figure at 40. “There are about 800 cases in Adai Malkan alone,” says Riyaz. “The officials have never been to the hamlets higher up on the mountain and on the other side. It is difficult to reach those parts, but that’s where most of the victims live.”
Still indecisive about naming the “strange disease”, the CMO says they took samples of the water and soil in the area for tests, “but our results didn’t show anything upsetting”. “That’s why we have decided to carry out studies on some of the affected at the Jammu Medical College. The college authorities may also invite a team of doctors from AIIMS, New Delhi,” he adds.
With the authorities trying to unlock the mystery of the disabling affliction, villagers like Baki and Hussein are waiting for these efforts to bear fruit.
Baba Umar is a Senior Correspondent with Tehelka.