Alipur can hear you, loud and clear

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After years of struggle, the outsized population of deaf people in a sleepy Karnataka village is reaching out to the world

Syed Sardar Mehadi knows one thing: he will only marry a deaf girl. He is wearing a blue shirt and grey pants, and smiling under the glare of the sun. Syed is 22 years old, and has had a hearing impairment since birth.

Syed’s mentor and the village’s informal leader of the deaf community, Mir Fazil Raza, 49, is helping translate between English and sign language.

“Syed only wants to marry a deaf girl,” says Raza. But the course of love is complicated. “His parents are totally opposed to that.”

We are on one of Alipur’s main streets, standing with a group of other men outside Raza’s television shop. Five of the men are engrossed in conversation—a flurry of gestures—but there is barely a sound.

Except for Raza, none of the men in the group have either speech or hearing. They are among 146 such people in this village in Karnataka’s Chikkaballapura district, about 80km outside Bengaluru. A Shia Muslim enclave in a Hindu majority area, Alipur has for generations had a disproportionately large number of deaf people.

Last October, Raza, a former gram panchayat chief, helped set up the Alipur Unity Society, run by members of the deaf community. One of the first activities, which lasted the month of July, was conducting a fresh survey in the area to understand actual numbers of the deaf population, carried out by 15 members of the community.

The panchayat office says the 2011 census shows 11,625 people in the village, but that the actual figure is closer to 20,000. That puts the proportion of the deaf population here at about 0.75%, compared to government estimates for the national average: 0.41% (based on data from the 2011 census).

Generations of consanguineous marriages are believed to have led to this outsized population of people who cannot hear, the villagers believe. The tightly knit Shia community traces its forbearers to Iran, and remains particular about marrying within.

Some years ago, Raza learnt the Alipur Sign Language—the local dialect—later going on to learn the Indian Sign Language and other sign languages.

In 2009, a survey conducted by Raza, who acts as president and informal coordinator of the group, found 265 people with different “disabilities”. Of these, more than 100 people could not hear and speak. (Estimates range from 125 to 165.)

For a long time, Raza was vexed by this question: how can you prevent future generations from being born deaf? First, he got all of them blood tested, only to confirm what had been suspected: their profiles showed a high degree of marriage within the community. So, he started trying to encourage them to marry outside the village.

“But the result was the same,” he says. Then they tried screening wombs of pregnant women to understand the risks involved. “But even after that, children with disabilities continued to be born,” he says.

With no formal education and no special services, the community has suffered. They work as labourers, plumbers, electricians, or other jobs their fathers might have done. In 2014, Raza had to close the special school in the area after falling short of funds, a big setback for the community. But this October, with the promise of funds, he is hopeful of starting a school again. The earlier school was for deaf community members in particular, and had two special educators coming from Bengaluru every day.

Now, Raza conducts an awareness session of a kind through a one-hour class every evening. At least 25 people show up, and the focus is on religious education: all through signing. Before class, a small group invariably gathers near Raza’s television shop to watch the news—and ask questions later. The hope is they will be able to widen their understanding of the world.

Education is the key goal now, as Alipur residents make broader contacts with the world, working in jobs outside the village. A few children have moved to nearby cities such as Bengaluru and Mysuru to enrol at special schools.

In Alipur, over time, the relative isolation and the large deaf population has led to the development of a distinct signing system. Academia refers to these as village sign languages—as opposed to standardized forms used by the deaf community, such as American Sign Language or Indian Sign Language. Village sign languages are among a group of vanishing languages—recorded and written about as part of an endangered languages archive of SOAS, University of London.

Other islands like this one, with unique signing systems, exist across the world; the best-known ones being Martha’s Vineyard in the US and Kata Kolok in Bali.

Nora Ellen Groce, a University College London professor who studied Martha’s Vineyard for her PhD thesis and is an expert on the subject, says that one would have to study the genealogy and family histories of Alipur residents to get to the details and that there are a range of genetic tests now available, but “chances are high that the deafness in Alipur are based on consanguineous marriages”.

Groce, who wrote Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard, explained that there are more than 400 different types of inherited deafness. “So, it’s not just one gene, it could be one of many,” she says.

The informal understanding is that marrying within such a relatively isolated community results in higher rate of deafness—seen from birth—but the district’s directorate of disabilities has no official record on this curious phenomenon and couldn’t specify what kind of deafness it is. K.V. Jyoti, the officer in charge at the directorate, says in their understanding, it was because of the marriage between relatives.

Sibaji Panda, a sign linguistics researcher who contributed to the SOAS archive, says he had analysed relationship patterns and found this to be the case. “Some geneticists had taken blood samples from the village, but I could not trace any publications from their findings to date,” he wrote in an email.

In other communities, one of the concerns has been preserving a fading cultural heritage encoded in such unique signing systems.

“There are hundreds of local/regional sign languages around the world and many are becoming ‘endangered’ as young deaf people go off to school and villages open to the outside world,” says Groce. “All languages have things to contribute, so it’s important that we don’t lose an important heritage like this.”

But in Alipur, the challenge is how to connect with a wider deaf community outside their immediate context. As their informal leader, Raza is keenly trying to help them make broader contacts through WhatsApp, Skype and travelling to other cities. He is also trying to teach them the Indian Sign Language, which is essential to be able to reach a wider world. During the conversation outside Raza’s shop, the men moved between both forms.
“We have to try and link with communities elsewhere,” says Raza. “Then they can also see the world and improve their knowledge.” He adds that about 80% of the deaf population could converse in both signing forms now.

Not just dialect, Alipur residents pride themselves on a distinct culture and a historic past. The village doesn’t have a police station, a liquor store or a cinema theatre. All of this is noted with an air of pride. The Anjum-e-Jaffria, a trust, is an informal centre of government—the body administers various welfare needs, helps resolve disputes and influences the social life of the village.

Like residents of similar enclaves elsewhere, hearing residents of Alipur can speak three languages: Hindi, Kannada and sign. Most can speak some rudimentary form of Alipur Sign Language—because invariably someone is related to a deaf person.

“In Alipur,” says Mohammed Ali, 30, a hearing resident, observing the group chat, “you have to learn how to sign. Or else, we will be silent and they will also be silent.”
Daily interactions suggest a fair degree of integration.

“The notion of disability and the communication barrier is less than in mainstream society,” says Panda. “Whatever severity may be there, no one uses hearing aid, though some have government gifted sets. The village hearing population is fully assimilated with them through sign language in various contexts.”

Still, deafness is a deeply experienced part of identity. Sahil Abbas, a fair, ever-smiling man, is also part of the group at the shop that evening. He is married to a woman who can hear, but believes that for her, it is “like being married to a wall”.

“Maybe our children will be deaf,” he says. “But we don’t want them to suffer. We hope they can have better lives.”

The village has not seen a single marriage between a deaf man and woman so far, because they believe this would result in their children being born deaf. But Syed, whose parents are opposing such a union, is determined.

“With a deaf person I feel so good,” he says. “It’s something I can’t feel otherwise.”