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| Deafblind people: unheard and unseen | Deafblind people: unheard and unseen |
| (21 days later) | |
| The road runs straight across the dead flat semi-desert. Either side, women squat to work the dusty fields of cumin and oilseed. This is the heart of Gujarat, the northwestern Indian state, home to 60 million people, summer temperatures of 50C, pockets of deep poverty and Sense International's Indian operation. | The road runs straight across the dead flat semi-desert. Either side, women squat to work the dusty fields of cumin and oilseed. This is the heart of Gujarat, the northwestern Indian state, home to 60 million people, summer temperatures of 50C, pockets of deep poverty and Sense International's Indian operation. |
| Though Gujarat's roads are famously good by Indian standards the village of Dhanki is reached by a gravel track. Here, 90 km from the state main city of Ahmedabad, booming India is light years away. Hansa Makwana, a slight 22-year-old, lives down a narrow lane in a mud and brick home with limited power and no sanitation. She is profoundly deaf and nearly blind and has been a "client'' of Sense International in India for a decade. | Though Gujarat's roads are famously good by Indian standards the village of Dhanki is reached by a gravel track. Here, 90 km from the state main city of Ahmedabad, booming India is light years away. Hansa Makwana, a slight 22-year-old, lives down a narrow lane in a mud and brick home with limited power and no sanitation. She is profoundly deaf and nearly blind and has been a "client'' of Sense International in India for a decade. |
| Once virtually incapable of communication and almost bed-bound, Hansa has spent thousands of hours over the last 10 years with her "educator'' Deepak, a local Sense International employee. Shecan now talk to those around her through a mixture of sign language and gestures, and can help with the gruelling routine domestic tasks of cleaning and cooking. | Once virtually incapable of communication and almost bed-bound, Hansa has spent thousands of hours over the last 10 years with her "educator'' Deepak, a local Sense International employee. Shecan now talk to those around her through a mixture of sign language and gestures, and can help with the gruelling routine domestic tasks of cleaning and cooking. |
| Crucially Hansa can be left alone, so her mother, Ramu, 45, can earn around 100 rupees (£1.20) per day working as a labourer. It may not be much but is an essential addition to the family's revenues. | Crucially Hansa can be left alone, so her mother, Ramu, 45, can earn around 100 rupees (£1.20) per day working as a labourer. It may not be much but is an essential addition to the family's revenues. |
| "Now with my husband and son there are three wages coming in and, even if we have to borrow or go hungry from time to time, things are easier," Ramu said. "And Hansa is happy and more confident." | "Now with my husband and son there are three wages coming in and, even if we have to borrow or go hungry from time to time, things are easier," Ramu said. "And Hansa is happy and more confident." |
| Sense International was founded in 1993 to meet "a desperate need to support and assist deafblind people in developing countries." The condition, serious visual and hearing impairment, afflicts more than 600,000 aworldwide, but receives little attention. | Sense International was founded in 1993 to meet "a desperate need to support and assist deafblind people in developing countries." The condition, serious visual and hearing impairment, afflicts more than 600,000 aworldwide, but receives little attention. |
| "In some of the world's poorest countries, deafblind children are excluded and live short, lonely lives. This is because of variety of reasons, including poverty, prejudice and lack of healthcare, education and support services. Sense International was set up to work ... with local organisations to provide expert support and services to deafblind people. | "In some of the world's poorest countries, deafblind children are excluded and live short, lonely lives. This is because of variety of reasons, including poverty, prejudice and lack of healthcare, education and support services. Sense International was set up to work ... with local organisations to provide expert support and services to deafblind people. |
| This sustainable support has always aimed to enable deafblind people and their families to be as independent as possible and live valued lives as human beings, while growing expertise locally," said James Thornberry, director of the London-based charity. | This sustainable support has always aimed to enable deafblind people and their families to be as independent as possible and live valued lives as human beings, while growing expertise locally," said James Thornberry, director of the London-based charity. |
| The condition is caused by diseases rife in much of the developing world today such as rubella, meningitis and encephalitis, genetic disorders as well as premature birth. The first project of Sense International was launched in 1994 in Latin America. The charity is active in Bangladesh, Kenya, Tanzania, Peru, Romania and Uganda. | The condition is caused by diseases rife in much of the developing world today such as rubella, meningitis and encephalitis, genetic disorders as well as premature birth. The first project of Sense International was launched in 1994 in Latin America. The charity is active in Bangladesh, Kenya, Tanzania, Peru, Romania and Uganda. |
| Before the charity started work, there was only one specialist facility for deafblind children in the whole of India, in Mumbai, the commercial capital. There a mere 23 children received care. | Before the charity started work, there was only one specialist facility for deafblind children in the whole of India, in Mumbai, the commercial capital. There a mere 23 children received care. |
| "The services for the blind would not take those who could not hear, and services for the deaf rejected those who could not see. So the deaf-blind got nothing," said Akhil Paul, director of Sense International in India. | "The services for the blind would not take those who could not hear, and services for the deaf rejected those who could not see. So the deaf-blind got nothing," said Akhil Paul, director of Sense International in India. |
| Fifteen years after launching in India, Sense International is now helping 43,000 deaf-blind children there through communication, mobility and vocational training as well as an advocacy programme. | Fifteen years after launching in India, Sense International is now helping 43,000 deaf-blind children there through communication, mobility and vocational training as well as an advocacy programme. |
| One of the biggest difficulties has actually been finding the children in need. The government census has only recently begun including a question on disability, so Sense International here was forced to conduct their own surveys. The organisation now realise that despite the rapid expansion in recent years it is still only reaching less than a tenth of the hundreds of thousands of deafblind in India, many of whom live in remote rural areas. | One of the biggest difficulties has actually been finding the children in need. The government census has only recently begun including a question on disability, so Sense International here was forced to conduct their own surveys. The organisation now realise that despite the rapid expansion in recent years it is still only reaching less than a tenth of the hundreds of thousands of deafblind in India, many of whom live in remote rural areas. |
| Those numbers are set to rise. Many cases of deaf-blindness arise from Usher's Syndrome which causes early loss of hearing followed by a gradual deterioration of sight during teenage years. India's population is very young and tens of thousands of currently deaf children will therefore be suffering deaf-blindness in under a decade. | Those numbers are set to rise. Many cases of deaf-blindness arise from Usher's Syndrome which causes early loss of hearing followed by a gradual deterioration of sight during teenage years. India's population is very young and tens of thousands of currently deaf children will therefore be suffering deaf-blindness in under a decade. |
| One is Meeraj, 15, a vivacious, happy schoolgirl who lives with her parents in the farming and quarrying town of Sayla in Gujarat. Thanks to the Sense International educators, Neeraj, who is profoundly deaf and has seriously impaired sight, now goes to a mainstream school three days of the week. Otherwise she attends a special class at a learning centre set up by a coalition of NGOs in the town. | One is Meeraj, 15, a vivacious, happy schoolgirl who lives with her parents in the farming and quarrying town of Sayla in Gujarat. Thanks to the Sense International educators, Neeraj, who is profoundly deaf and has seriously impaired sight, now goes to a mainstream school three days of the week. Otherwise she attends a special class at a learning centre set up by a coalition of NGOs in the town. |
| "I love music and dancing," Meeraj told The Guardian. "I watch dancers and I copy their movements even if I can't hear the songs." | "I love music and dancing," Meeraj told The Guardian. "I watch dancers and I copy their movements even if I can't hear the songs." |
| Meeraj knows that her sight has deteriorated in recent years but is unaware of the full extent of what awaits her. Doctors say total blindness is almost inevitable by the time she is 20. | Meeraj knows that her sight has deteriorated in recent years but is unaware of the full extent of what awaits her. Doctors say total blindness is almost inevitable by the time she is 20. |
| Yet support and education can mean that at least the social isolation that was often a consequence of deafblindness can be mitigated. Rajesh Sheth lives not far from where Meeraj is studying, in the small town of Limbdi. Now 33, he has been assisted by Sense International for more than a decade. Garrulous, sociable and funny, he works with his parents making and selling fafda, a local snack made of deep fried spiced pastry. | Yet support and education can mean that at least the social isolation that was often a consequence of deafblindness can be mitigated. Rajesh Sheth lives not far from where Meeraj is studying, in the small town of Limbdi. Now 33, he has been assisted by Sense International for more than a decade. Garrulous, sociable and funny, he works with his parents making and selling fafda, a local snack made of deep fried spiced pastry. |
| "The biggest difference [the programme] made to me was that no one else could understand me until [my trainer] came. I was very happy and very relieved," Rajesh said. This week he will be following televised cricket, narrated by a shifting cast of intermediaries, as England play India in a crucial test match and will vote in local state elections. His mother has, as is traditional, started circulating the news among friends and relatives that she is now looking for a wife for him. | "The biggest difference [the programme] made to me was that no one else could understand me until [my trainer] came. I was very happy and very relieved," Rajesh said. This week he will be following televised cricket, narrated by a shifting cast of intermediaries, as England play India in a crucial test match and will vote in local state elections. His mother has, as is traditional, started circulating the news among friends and relatives that she is now looking for a wife for him. |
| And tonight, as he does every weekend, Rajesh will sit with four friends, two of whom are deaf, at their favourite tea shop like tens of millions of other Indians to gossip, greet neighbours and drink hot milky chai as the sun goes down and another day in Limbdi ends. | And tonight, as he does every weekend, Rajesh will sit with four friends, two of whom are deaf, at their favourite tea shop like tens of millions of other Indians to gossip, greet neighbours and drink hot milky chai as the sun goes down and another day in Limbdi ends. |
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