Doda’s silent village finally finds a voice
With 90 residents born with hearing and speech impairment, researchers find that inter-community marriages among Gujjars over the decades has aggravated the genetic disorder.Updated: Aug 23, 2019 23:27 IST
Here, silence speaks louder than words. Dhadkai village in Doda district, 260 km north of Jammu, has 60 families with speech and hearing impaired members.
The village, inhabited by about 4,500 Gujjars, an endogamous community, has two panchayats, Dhadkai A and Dhadkai B. The first reported case of hearing and speech impairment in the village dates back to 1931.
Dhadkai B village sarpanch Haji Mohammed Latief says, “There are at least 60 families with more than 90 such members. These families have been struggling with this genetic disorder. There is a resident with seven children of whom six can’t speak or hear. Of the six, four are girls. Where does he marry them off?”
In 2014, an Indian Council of Medical Research team screened 2,473 villagers and 33 children below 10 years were found suffering from hearing impairment, while 39 adults were found deaf and dumb.
Researchers have found more girls suffer from the disorder than boys.
Dr Sunil Kumar Raina, the principal investigator who led a team of researchers to Dhadkai, says, “It’s called the founder’s effect in medical science. A small population of deaf and mute people stayed at Dhadkai for say five to 10 years since 1901. They were deaf and couldn’t speak because of a genetic defect, which was transmitted to the next generation. This small group intermarried, which led to the trait manifesting. Subsequently, this small group of socially acceptable speech and hearing impaired residents brought in people with a similar disorder to the village because they were thought to be friendlier.”
“The members of the clan should now marry outside the community,” says Dr Raina, who heads the community medicine department at Dr RP Government Medical College, Kangra, and has conducted extensive research for three years in Dhadkai.
On finding a cure, he said that he has been working on it for two years. “I’m trying to issue them colour-coded cards like we have vaccination cards for children. The colour-coded cards would measure their genetic disorder on a scale of 25% to 100%. The best is if they marry outside the community to stop this genetic disorder. But if they have to marry within the community, it should be the basis of the colour-coded cards to avoid the genetic disorder in newborns. For example, one with 25% disorder should marry another with 50% but a person with 50% should not marry another with 50%,” he said.
Gene analysis by the Jawaharlal Nehru Centre for Advanced Scientific Research has identified Otoferlin as the gene responsible for the high number of hearing impaired.
Research teams from Bangalore and other parts of the country had also visited the village to find the cause of the disorder. “They came three to four times from 2008-17 and collected blood, water and soil samples on the pretext of finding a cure but in vain,” says Latief.
‘LIVING IN NEGLECT’
He accused successive state governments of doing nothing for the people of Dhadkai. “Militants torched 40 of our dhoks and not a single resident from Dhadkai ever picked up the gun. We participated in every election but no government bothered about our plight. In 2004, a 5-km road was proposed and till date only 2 km of it has been built,” he says.
Latief claimed that the village has a population of 4,500 but ration cards have been issued to only 1,754 residents.
“Our daughters have not been able to study beyond matriculation as the higher secondary school is 12 km from the village. With no road and transport facility, they gave up on studies,” the sarpanch says.
Doda deputy magistrate DS Dattatray said the administration is aware of the problems of the residents and has initiated welfare measures for the differently-abled. “Whatever is required to make their lives easy is being done by the administration on priority but scientific research has to be done by agencies concerned and we will certainly like to find a cure for them,” he says.