Friday, March 10, 2017
Deaf Syrians Learn The Language Of War
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| To indicate the government, two fingers are placed on the palm, recalling the two stars on Syria's national flag. |
Twice raising the little finger represents "I" and placing a thumb on the index finger and the middle finger makes an "S" to signify ISIS, the terror group. At an NGO in Damascus, two young deaf Syrians, Bisher and Ryad, are working to create special sign language characters so thousands of Syrians like them can talk about the war that has ravaged their country for the past six years.
They have created a way to sign both the English word for the ISIS but also the acronym used for it in Arabic: Daesh.
To indicate the government, two fingers are placed on the palm, recalling the two stars on Syria's national flag.
But three fingers means the rebels, whose flag has an extra star. Two hands placed over the eyes signifies a kidnapping, explains 26-year-old biomedical engineer Wisal al-Ahdab, deputy head of the EEMAA association in the capital's Midan district.
"We had to invent words that didn't exist in the vocabulary of the deaf in Syria so they can exchange information and express their feelings about the violence," she says.
Once the new signs have been finalised and agreed on, video footage of them is taken and posted on Facebook so others who are similarly disabled can access and discuss them.
Officially, there are some 20,000 deaf people in Syria, but EEMAA chairman Ali Ekriem, a computer engineer, says the real number is five times that.
The 35-year-old says such people suffer double, living through a war without being able to make themselves understood.
'I saw my mother slump down'
The horror of incomprehension and ensuing realisation can be both dangerous and heart-breaking, says 21-year-old Ryad Hommos, who is helping to create the new signs.
While he and his family were fleeing fighting in their neighbourhood aboard a truck, sniper fire cut down his mother, uncle, aunt, three cousins, a brother and their baby sister.
But Hommos couldn't hear the shots ring out, and "because I wasn't expecting it, I didn't understand what was happening at first", he says.
"I saw my mother slump down and then my cousins fell. It was only when I saw my little sister's head explode that I finally realised we were under fire."
Another brother was later killed by shelling as he played football in the street.
Hommos now works in a cable factory, but remains haunted by the horror of what he has seen and dreams of going abroad.
Even navigating war-ravaged Syria on a day-to-day basis can be risky - like being stopped at one of the capital's many checkpoints.
"You have to make yourself understood using gestures, and often those in charge at roadblocks think we're mocking them," says Ekriem.
"Before, most deaf people avoided putting their disability on their ID cards, but now everyone does it to show at checkpoints."
'No one explained'
Ekreim's 32-year-old sister Bisher knows well the danger of misunderstandings.
While returning to her home in Damascus in 2011, she found herself stuck between anti-regime demonstrators and members of the security services planning to disperse them.
She tried to escape down an alleyway in the Midan neighbourhood, "but no one could help me because I could not communicate and the situation started to get worse".
By some miracle, Bisher explained her situation to a passerby and was taken to safety, but she is now so traumatised by the experience that she no longer dares to venture outside.
At home, her windowpanes rattle from bombardment outside as she recounts her experience.
In July 2012, rebels seized most of Midan before the army recaptured the district in a ferocious battle.
At the time, Bisher's mother told her to pack her things but did not explain that they were fleeing.
"Everyone was terribly nervous. They'd pull me in one direction then push me in another. No one talked to me, no one explained. They just wouldn't let me near the window," she says.
Bisher packed slowly, not understanding the urgency and angering her panicking family.
"My mother was treating me like I was stupid. I'm not stupid, but no one explains anything to me," she says.
The Ekreim family sought refuge in Lebanon for two years, coming back to what they say is a different Damascus.
The divisive sectarian rhetoric that has coloured much of Syria's war reached even the deaf association, and many of its Christians have left.
"The war blew everything apart," Bisher says sadly, describing the waves of emigration and saying even her friends had become "aggressive" towards one another.
"I hope one day we'll meet again, and that the deaf can find a shared language once more."
The 35-year-old says such people suffer double, living through a war without being able to make themselves understood.
'I saw my mother slump down'
The horror of incomprehension and ensuing realisation can be both dangerous and heart-breaking, says 21-year-old Ryad Hommos, who is helping to create the new signs.
While he and his family were fleeing fighting in their neighbourhood aboard a truck, sniper fire cut down his mother, uncle, aunt, three cousins, a brother and their baby sister.
But Hommos couldn't hear the shots ring out, and "because I wasn't expecting it, I didn't understand what was happening at first", he says.
"I saw my mother slump down and then my cousins fell. It was only when I saw my little sister's head explode that I finally realised we were under fire."
Another brother was later killed by shelling as he played football in the street.
Hommos now works in a cable factory, but remains haunted by the horror of what he has seen and dreams of going abroad.
Even navigating war-ravaged Syria on a day-to-day basis can be risky - like being stopped at one of the capital's many checkpoints.
"You have to make yourself understood using gestures, and often those in charge at roadblocks think we're mocking them," says Ekriem.
"Before, most deaf people avoided putting their disability on their ID cards, but now everyone does it to show at checkpoints."
'No one explained'
Ekreim's 32-year-old sister Bisher knows well the danger of misunderstandings.
While returning to her home in Damascus in 2011, she found herself stuck between anti-regime demonstrators and members of the security services planning to disperse them.
She tried to escape down an alleyway in the Midan neighbourhood, "but no one could help me because I could not communicate and the situation started to get worse".
By some miracle, Bisher explained her situation to a passerby and was taken to safety, but she is now so traumatised by the experience that she no longer dares to venture outside.
At home, her windowpanes rattle from bombardment outside as she recounts her experience.
In July 2012, rebels seized most of Midan before the army recaptured the district in a ferocious battle.
At the time, Bisher's mother told her to pack her things but did not explain that they were fleeing.
"Everyone was terribly nervous. They'd pull me in one direction then push me in another. No one talked to me, no one explained. They just wouldn't let me near the window," she says.
Bisher packed slowly, not understanding the urgency and angering her panicking family.
"My mother was treating me like I was stupid. I'm not stupid, but no one explains anything to me," she says.
The Ekreim family sought refuge in Lebanon for two years, coming back to what they say is a different Damascus.
The divisive sectarian rhetoric that has coloured much of Syria's war reached even the deaf association, and many of its Christians have left.
"The war blew everything apart," Bisher says sadly, describing the waves of emigration and saying even her friends had become "aggressive" towards one another.
"I hope one day we'll meet again, and that the deaf can find a shared language once more."
Wednesday, March 8, 2017
Deaf, mute and blind student, but vision intact
Sourabh Chougule is set to write his SSC board exams, with the help of two interpreters and a writer
Twenty-one-year old Sourabh Chougule is Maharashtra’s first deaf and blind student to appear for the Class 10 board exams that begin on Tuesday. Sourabh, a student at the Hellen Keller Institute for Deaf and Deafblind, will appear as a private candidate at the Tilak High School in Ghansoli.
Sourabh was born in Sangli with a hearing impairment, as a result of which he also became speech-impaired. After having studied in a special school till the age of 10, Sourabh could not continue there as he slowly started losing his vision. A few years later, as he was still trying to come to terms with his multiple impairment, he was brought to the city by his parents and was admitted at the Hellen Keller Institute at the age of 13. Now at the age of 21, he is set to write his Class 10 board exams with the help of two interpreters and a writer. The interpreters will communicate with him through the tactile sign language.
Devayani Hadkar, one of his interpreters who has been teaching him for the last seven years said that it took three years, to prepare him for the board exam. “He came to us when he was 13 years old and since then we have been training him in studies and vocational skills. It was a difficult task. In the beginning, we had to help him deal with the trauma of suddenly losing his eyesight when he could not speak or hear. After he became visually impaired, all the training in sign language that he had got in the beginning had to be modified to touch as we had to teach him holding hands so that he could interpret,” said Hadkar.
Hadkar approached the board officials in October 2016 to request Sourabh’s case to be considered as a special one, and to allow him to write the paper in Braille. “We requested the board to allow him to write in Braille but the board officials said that they do not have the necessary mechanism for the same. We still didn’t give up, and decided to train him,” she said.
Like any other blind student Sourabh gets a writer, but, he has been granted an hour extra for each paper. Hadkar however said that the allotted time is inadequate for the great difficulty of interpretation that is to be done in the whole process. “We have to communicate each and every word to him in some cases where the sentence itself is very important, and he will again communicate in the same manner after which the writer would be able to write for him,” she said.
As a special case the board has offered some subjects to Sourabh like Bakery Product and Milk Product instead of the first and second language, along with other subjects like Social Sciences and Basic Science, Physiology, Home Science and Health Science.
Monday, March 6, 2017
Sense and sensitivity – meet torchbearer Pinto
“They have exceptional qualities,” Dravid had said at one of the promotional events prior to the tournament.
What then of a hearing and speech-impaired person? What are the exceptional qualities we are talking about here? How different is the game for him or her? It’s not football or basketball, both high on oral communication (or, to call it what it is, shouting and screaming). There is no referees’ whistle. People of a certain vintage would remember the story of Damir Desnica, the star striker with HNK Rijeka, the football club in Yugoslavia (now in Croatia). It was 1984. Rijeka had won the first leg of the UEFA Cup clash against Real Madrid at home 3-1. In the second leg, at the Santiago Bernabeu, they lost 3-0 with three of their players sent off. Desnica was one of them. Early on in the script, he had been yellow-carded for time wasting. Then, midway into the second half and still only 1-0 down, Desnica was sent off after a second yellow card. Why? For playing on after the referee had stopped play. Fair call by the referee. But Desnica was deaf – he had missed the referee’s whistle. It must have happened more than once in his moderately successful career.
In cricket, you could miss the umpires’ shout for no-ball, and the repercussions would be nowhere as severe. No one is sent off for overstepping, unless we are talking S Sreesanth or Mohammad Amir, and then the punishment is worse than just a yellow card.
Thinking about it, running between the wickets and calls to a fielder to throw the ball to a particular end of the pitch, and the occasional ‘leave it’ or ‘my ball’ by the fielder, seem to be the only occasions (oh, and sledging!) where the lack of hearing or speech are impediments.
True that, signals Ancil Rishi Pinto, a deaf and mute cricketer who is fairly well known here in Bangalore.
Now in his mid-30s, Pinto was recently named captain of the Delhi team in the upcoming Indian Deaf Premier League. Born in Kerala, Pinto lost his parents early and was adopted by Bangalore-based businessman – and one-time Bombay Universities cricketer – Mohammad Ebrahim Ansari. He moved to the big city in the late 1980s, going on to study at Sheila Kothavala Institute for the Deaf later.
Cricket was his thing, and Ansari backed him all the way. His ‘father’ has since passed on, but cricket continues to be Pinto’s thing. There is a day job in the finance department of Dell EMC, the data storage company, but training with Irfan Sait at Modern Cricket Club has only served to drive Pinto’s ambition further. He hasn’t done badly over the years either. There was a short stint at MRF Pace Academy once in 1998 – when Dennis Lillee was in charge – and time spent at the Brijesh Patel Cricket Academy and the Imtiaz Ahmed Cricket Academy, as well as winners’ medals from the second Deaf Cricket World Cup in 2005 in Lucknow and the second Asia Deaf Cricket Cup in 2012 in Lahore.
We catch up with him as he trains under Sait’s watchful eyes among a sea of “normal players”, as Pinto calls them.
He’s a medium pacer. To the naked eye, he goes at between 120 and 125 kph. Later, through his mother-in-law’s spirited but not-very-able interpretation, he tells us that he used to bowl at 135-plus when he was young, pointing to his right bicep. At any rate, he gets all but one delivery he sends down for our viewing pleasure on or around off-stump, shaping in a little bit. The one that doesn’t sails down the leg-side, and he lets out an irritated groan and a gesture of frustration.
“A workhorse, to say the least,” Sait says of Pinto. “He works very, very hard, is sincere and focused, and his passion is what is driving him. He is as fit as any 18-19 year old. He’s been a coach’s delight.”
Pressing on: How do you tell him things that would be easy to explain to someone who can hear and speak, and how does he tell you about his problems?
“They [Sait has trained other deaf and mute cricketers over the years too] have evolved in a system where they understand each other, they sense each other. So they are better versed (with the intricacies of the game) than those with speech. They are very sensitive, they are very, very active, and they see a lot of things which normally we don’t,” explains the coach, adding that signals are good enough to get the job done.
Once he is done sweating it out and leaves the nets to applause from the other trainees, Pinto turns up to answer our questions, mum-in-law Pratibha by his side. The expression is serious, his hand and eye movements exaggerated as he first ‘listens’ to the queries with concentration and then answers them in detail.
A lot of it is lost in translation as Pratibha, though mother to a son and a daughter – Monica, Pinto’s wife – who are deaf and mute too, struggles to keep up. “He doesn’t know Kannada and I don’t know Malayalam,” she explains later. And she knows what I mean when my eyes widen in reaction to the Kannada-Malayalam clarification. Languages – in sign? She’s heard the question before and just shrugs. I blush at the silent gaffe.
“The communication is done by the eyes and hands,” Pinto says, sticking his right arm out and making a gesture akin to a cop stopping traffic when trying to explain running quick singles, or refusing them, with a partner. And only a hint of a smile appears on his face as he says, “Everyone is deaf and no one can speak, so it balances out.” Even while captaining a side? “Of course, you just need to show what you want, and it happens.”
Signs and gestures, a bit of lip reading – Pinto and his teammates have not needed more. As a child, he was ridiculed when he wanted to join the boys of his locality for a bit of bat and ball in the afternoons. It’s all forgiven though not forgotten now. Along the way, he has played with Mayank Agarwal, the Karnataka batsman, and impressed Carlton Saldanha, the former Karnataka cricketer-turned-coach, who says about his time with Pinto around the turn of the millennium, “He was not any lesser than the other boys in any way.”
But he cannot play for the “regular” India team, which his mother-in-law says is what he has always wanted. [Hasn’t everyone who has ever picked up a bat or ball in our country?] Still, Pinto is an important cog in the massive wheel that is Indian cricket, or cricket in India. That’s no mean achievement for someone who started out where he did.
Sunday, March 5, 2017
தெய்வக் குழந்தைகளுடன் 2 மணி நேரம்! சமுதாய சேவையில் ஐ.டி., ஊழியர்கள்
அவர்களை தெய்வக்குழந்தைகள் எனலாம். எண்ணற்ற திறமைகள் அவர்களுக்குள் பொதிந்து கிடக்கின்றன. அவற்றை வெளிக்கொணர ஊக்குவிப்பாளர்கள் இல்லாமல், நான்கு சுவற்றுக்குள் முடங்குகியுள்ளனர். உணர்வுகளை வெளிப்படையாகச் சொல்ல, அவர்களது உதடுகள் துடிக்காது. நாம் கேட்கும் கேள்விகளுக்கு அவர்களால் பதில் சொல்ல முடியாது. இன்னும் வெளிப்படையாகச் சொல்வதென்றால், நமது கேள்வியே அவர்களது செவிகளில் விழாது. ஆம், அவர்கள் யாரெனில், வாய்பேச முடியாத, காதுகேளாத மாணவ - மாணவியர்.
இவர்கள் நான்கு சுவற்றுக்குள் அடைபட்டு கிடக்கக் கூடாது; கல்வியறிவு பெற வேண்டும் என்ற உயரிய நோக்கத்தில், ஆர்.எஸ்.புரத்தில் உயர்நிலைப்பள்ளியை நடத்துகிறது, மாநகராட்சி. இங்கு, 32 பேர் படிக்கின்றனர். இவர்களில், நான்கு பேர் மாணவியர். ஐந்து ஆசிரியர்கள், சைகை மூலம் கல்வி கற்பிக்கின்றனர்.
இவர்கள், நன்றாக படித்தாலும், வேலை கிடக்காமல் கஷ்டப்படக்கூடாது என்பதற்காக, தொழிற்கூடமும் நடத்தப்படுகிறது. கோயமுத்துார் சிட்டி ரவுண்ட் டேபிள் சாரிடபிள் சொசைட்டி சார்பில், 'பிட்டிங், டிரில்லிங், வெல்டிங், பிளம்மிங்' உள்ளிட்ட தொழிற்பயிற்சி அளிக்கப்படுகிறது.
ஆறாம் வகுப்பு முதல், 10ம் வகுப்பு வரையிலான மாணவர்களுக்கு தினமும், 45 நிமிடம் தொழிற்கல்வியை, 25 ஆண்டுகளாக சந்தானம் என்பவர் பயிற்றுவிக்கிறார். அவர் கூறுகையில், ''காதுகேளாத, வாய்பேச முடியாத மாணவ, மாணவியருக்கு தொழிற்கல்வி கற்றுத்தருவதோடு, தனியார் நிறுவனங்களில் வேலைவாய்ப்பு ஏற்படுத்திக் கொடுக்கிறோம். 300 முதல், 500 ரூபாய் தினச்சம்பளம் கிடைக்கும். பொருளாதார ரீதியாக ஓரளவு சமாளித்துக் கொள்வர்,'' என்றார்.
இப்பள்ளி செயல்பாட்டை அறிந்த, ஐ.டி., நிறுவன ஊழியர்களான மீனாட்சி, ப்ரீத்தி ராமசாமி ஆகியோர், அம்மாணவர்களுடன் விவாதித்த போது, மாணவர்கள் சோர்வுடன் இருப்பது தெரியவந்தது. அவர்களுக்கு தன்னம்பிக்கை ஏற்படுத்தி, ஆரோக்கியமுடன் வாழ விளையாட்டு முக்கியம் என, அவ்விரு ஊழியர்களும் எடுத்துரைத்தனர்.
இருவருமே மாநில அளவிலான விளையாட்டு வீரர்கள். தங்களது திறமையை இவர்களுக்கு பயிற்றுவிக்க முடிவு செய்து, தினமும் 2 மணி நேரம் ஒதுக்குகின்றனர். காலை, 8:00 மணியில் இருந்து, 10:00 மணி வரை, காதுகேளாத, வாய்பேச முடியாத அம்மாணவர்களுக்கு வாலிபால் மற்றும் டேபிள் டென்னிஸ் பயிற்சி அளிக்கின்றனர். தங்களது சொந்த செலவில், சீருடை வாங்கிக் கொடுத்திருக்கின்றனர். அவர்களும் ஆர்வத்துடன் பயிற்சி எடுக்கின்றனர்.
மீனாட்சி கூறுகையில், ''ஐ.டி., நிறுவனத்தில் பணிபுரிகிறோம். பணம் சம்பாதிக்கிறோம். பணம் ஈட்டுவது மட்டுமே வாழ்க்கை அல்ல. இப்பள்ளியை பற்றி கேட்டறிந்ததும், மாணவர்களுக்கு விளையாட்டு பயிற்சி அளிக்க அனுமதி கேட்டோம். மாநகராட்சி அனுமதி கிடைத்ததும், எங்களது செலவில் மைதானம் தயார் செய்து, ஏழு மாதங்களாக பயிற்சி அளித்து வருகிறோம். இதில், எங்களுக்கு மனதிருப்தி கிடைக்கிறது,'' என்றார்.இவருக்கு வாழ்த்து தெரிவிக்க விரும்பினால், 97895 51573 என்ற எண்ணுக்கு 'டயல்' செய்யுங்க!
99pc of people with hearing disabilities in India are not matriculates
The World Bank says that one billion people, or 15 percent of the world’s population, experience some form of disability, and disability prevalence is higher for developing countries. One-fifth of the estimated global total, or between 110 and 190 million people, experience significant disabilities. That’s a lot of people.
India has 70 million persons with disability, according to conservative estimates, and 18 percent of India’s persons with disabilities have a hearing impairment, as per Census 2011. This would mean that India arguably has the largest deaf population in the world.
To put numbers in context, a close look at the census 2011, which is also outdated, reveals that of the 13.4 million people with disabilities in India in the employable age group of 15-59 years, 9.9 (73.9 percent) million were non-workers or marginal workers. Which means that only 26.1 percent of the productive age group of the country is employed.
People with hearing disabilities face many issues, when it comes to employment. A 2014 survey by UK-based charity Action on Hearing Loss reveals a variety of issues faced by people who are hearing-impaired or have a hearing loss, both inside and outside the workplace:
- 31 percent of people feel they are treated differently because of their deafness, hearing loss and tinnitus
- 33 percent of people who are deaf avoid social situations because they find it difficult to communicate
- 68 percent of people with hearing loss feel isolated at work as a result
- Inclusion of people with hearing impairment is not that difficult.
We have been constantly putting pressure on the Indian corporates to offer employment to persons with disability. In fact, every year, we give out the NCPEDP MindTree Hellen Keller Award, to recognise the work of organisations and individuals.
Here are some major concerns that need to be overcome if we are to offer the hearing-impaired employment. Around the world, they communicate using sign language as distinct from spoken language in their everyday lives. A sign language is a visual language that uses a system of manual, facial and body movements as the means of communication.
- In India, there is no officially recognised sign language system. As a result, 99 percent of hearing-impaired people are either uneducated or drop out after Class VI or VII, because they are not able to cope. There are hardly any people with hearing impairment who have cleared Class X. One reason is the tremendous shortage of sign language interpreters and trained teachers.
- Hundreds of sign languages are used around the world. For instance, Japanese Sign Language (Nihon Shuwa, JSL), British Sign Language (BSL), Spanish Sign Language (Lengua de signos o señas española, LSE), and Turkish Sign Language (Türk İşaret Dili, TID). Compared to this, we do not have a composite Indian Sign Language (INSL). This, despite having a huge institution, National Institute of Hearing Handicapped, in Mumbai, which guzzles crores of taxpayers' money every year. All they have managed thus far (in decades) is a dictionary of a 1,000-odd words.
- Having access to a sign language is central to any hearing-impaired person for their cognitive, social, emotional, and linguistic growth. Sign language is acquired by children in the same timeframe as spoken languages and this acquisition process shows similar patterns and milestones as a spoken language. It is important that children with hearing impairment have access to a sign language at an early age and it should be understood as their first language, just like Hindi or Tamil or Bengali.
- This is not where the problem ends. India has no captions on television, instructions or signage in public spaces, TTY (accessible telephone), instruction through sign language in schools and no specialised college or university.
- Forget TV or films, which one may dismissively regard as 'mere entertainment'. What about at a railway station, where all announcements are in audio? Imagine the plight of a person with hearing impairment at a hospital or police station, where something is to be conveyed urgently and there is no sign language interpreter.
- Another obvious dimension is employment and the need for financial independence. It helps if people have name badges and if locations and jobs are well labelled. It helps if task that have to be performed are visually-labelled. A person who is hearing-disabled cannot lip-read you well and so will rely on your facial expression to try to figure out what you’re conveying. They feel left out and this is very bad for their morale.
Saturday, March 4, 2017
நடிகர் ராதாரவியின் இல்லத்தை மாற்றுத்திறனாளிகள் முற்றுகையிட்டனர்!
மாற்றுத்திறனாளிகளை இழிவாக பேசிய நடிகர் ராதாரவி மீது வழக்குப்பதிவு செய்யக் கோரி, சென்னை தேனாம்பேட்டை காவல் நிலையத்தில் மாற்றுத்திறனாளிகள் அமைப்பினர் புகார் அளித்தனர்.
அதிமுகவில் இருந்து விலகிய நடிகர் ராதாரவி கடந்த சில நாட்களுக்கு முன் திமுகவில் இணைந்தார். சமீபத்தில், சென்னை தங்கசாலை பகுதியில் நடந்த திமுக பொதுக்கூட்டத்தில் கலந்து கொண்ட அவர், அரசியல் தலைவர்கள் சிலரை, மாற்றுத்திறனாளிகளுடன் ஒப்பிட்டு பேசியதாக புகார் எழுந்தது.
இந்நிலையில் நடிகர் ராதாரவியின் செயலைக் கண்டித்து தேனாம்பேட்டையில் உள்ள நடிகர் ராதாரவியின் இல்லத்தை மாற்றுத்திறனாளிகள் முற்றுகையிட்டனர். ராதாரவியை கண்டித்து மாற்றுத்திறனாளிகள் உரிமை பாதுகாப்பு அமைப்பினர் மற்றும் டிசம்பர் 3 அமைப்பினர் முழக்கங்களை எழுப்பினர்.
இதைத் தொடர்ந்து ராதாரவி மீது வழக்குப்பதிவு செய்ய கோரி, தேனாம்பேட்டை காவல் நிலையத்தில் மாற்றுத்திறனாளிகள் புகார் அளித்தனர்.
More kids in Tamil Nadu born deaf, doctors look at family marriage
04.03.2017
CHENNAI: Congenital deafness is one of the most common birth defects in Tamil Nadu and doctors at a city-based ENT research centre say the cause may lie in the gene.A team of doctors from Madras ENT Research Foundation(MERF) is looking into genes of more than 300 people from 60 families with deaf children to see if the birth defect has been passed on by a rouge gene from parents. In 2013, studies showed that six out of every 1,000 children born in the state have profound hearing loss -three times the national average. Doctors found that parents of at least two-thirds of the 50,000 deaf children surveyed had consanguineous mar riage. Yet, not all children born to such couples had the birth defects.
Now, MERF scientists led by Dr Sudha Maheshwari hope the study, when completed, will indicate primary causes for inherited deafness. "As of now we don't know why just some of the children are affected. We are looking at nearly three generations in every family. The study will help us prove our hypothesis that consanguinity is one of the primary causes for birth defects.The next step will be to isolate the gene and determine precisely how it causes hearing loss. When we learn about the genes we can also look therapies at the molecular level," she said.
Earlier studies had shown that certain gene mutations have the ability to block the protein that aids cochlear function. Gene therapy helps doctors modify the rouge gene so a person can hear. It is not reality yet, but trials on mice and zebra fish are beginning to show positive results, say doctors. While some gene association studies of newborns have been conducted in the past in a small number of people, no large study has been done in India. Genome-wide association studies search the entire DNA for common mutations to see if any of those are linked to a trait.
The study of 300 people may generate adequate scientific data, but it will show the need for multi-centric clinical trials, said ENT specialist Dr Mohan Kameshwaran. "In fact, on several occasions we find that children with deafness have other complications such as congenital hypothyroidism that can stunt their growth," he said.
Doctors at another research centre, Fetal Research Foundation, which screens newborns for metabolic disorders like congenital hypothyroidism and congenital adrenal hyperplasia, say these are also above the national average."As of now we just know the numbers.We don't know the reason why these happen," said fetal medicine expert Dr S Suresh, who heads Mediscan.
More than 55% of patients with these metabolic disorders are born to parents who have married near blood relatives. "We have to establish this genetically. We also think other environmental factors such as iodine levels in salt and malnutrition of pregnant women have a large role to play ," said paediatrician Dr Sudha Rathinaprabu, who also planning a detailed study.
3,000 got cochlear implants in 3 years
At least 3,000 children born with deafness were given cochlear implants under the state health insurance scheme in the past three years. The only option for children born deaf is to undergo cochlear implant, preferably before they are six. "Each of these devices cost Rs `8 lakh. It one of the advanced machines that is given to patients who come to private hospitals," said ENT specialist Dr Mohan Kameshwaran. "It is a complicated surgery. Surgeons will have to operate a small crowded area in the base of the skull to implant the device." After implant these children go to state-run habitation centres or private hospitals to get trained in hearing and speech.
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