An Area of Darkness
By Tariq Engineer and Raju Shinde
One family has been living with a personal tragedy for half a century that has left most of them in the dark.
ABOUT 45 kilometres west ofAurangabad , out past the Jaguar and Land Rover showroom, past the looming Bajaj Auto and Garware Polyester factories, past the vast tracts of land owned by the army on which the early morning mist sits like a giant fluffy blanket, past fields of sugarcane and cotton, past where the tarred road transforms into a dirt track, sits a collection of squat blue and green block houses known as Vanjare Vasti, which sits on the outskirts of Sarifpur village. It is surrounded by cotton fields. Chickens and dogs roam the common courtyard while goats and cows stand tethered to wooden poles. The vasti is home to about 150 people and among them is one family who, for half a century, has been living with a personal tragedy that has left most of them in the dark, both literally and figuratively.
Retinitis Pigmentosa (RP), a group of genetically inherited disorders that affects the retina.
It was only a year or two ago that the family first heard the term. It remains a mystery to them. The family member who finally received the diagnosis is 24 year-old Vijay Vanjare. His story might be the most tragic of them all because the family thought he had escaped the blight that had afflicted the rest of them. His father and uncles had gone blind as teenagers, as had his elder brother Satish and two sisters. Vijay still had his eyesight when he turned 21 and would ride his Hero Honda Double X motorcycle everywhere. He used to get daily work cutting trees for the sawmill, which combined with the income from the family’s 1.5 acres of land, was enough to live on. He was happy that he could see the world in a family of five blind people. Then, at 23, his eyes began to hurt and he would get red rashes.
“I went to the local private doctor and he told me I had a cataract,” Vijay says. “I had night blindness too. So he advised me to visit the senior doctor at Aurangabad civil hospital (known as Ghati Hospital). The doctor checked me and declared me 100 per cent blind and said that the vision loss is irreversible.” He ended up having to sell his motorbike to help feed his family. His favourite memory is visiting Mumbai five years ago on the Mahaparinirvan Din (death anniversary) of Dr Babasaheb Ambedkar. But that memory has taken on a dark shade now because “somebody has to accompany me everywhere I go. I have a wooden stick, not even the foldable white stick,” he says.
For a year and a half, Vijay did not leave the vasti. He was not comfortable venturing out in to a suddenly unknown world. His young wife Kajal, a daily wage worker, gave birth to a boy a year ago but Vijay has never seen his face.
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There are three types of genetic transmissions that can pass on retinitis pigmentosa from one generation to the next: autosomal recessive; autosomal dominant and x-linked. According to theNational Eye Institute in the United States, in the first type, there is a 25 per cent chance a child will have the disorder and a 50 per cent chance he or she will be a carrier. In the second, there is a 50 per cent chance of inheriting the mutation, and in the third type, there is a 50 per cent chance of a son inheriting RP and a 50 per cent chance of a daughter being a carrier.
Since the family has not been tested, the type of RP they have is unclear. Reports put the incidence of Retinitis Pigmentosa at about 1 in 4000 people worldwide, but a 2008 study done in Tamil Nadu of those above 40 years of age, and published in Ophthalmic Epidemiol, found the disorder in approximately 1 in 930 people in the urban population and 1 in 372 in the rural population. “For male children, RP can start congenitally before two years of age,” Dr. TP Lahane, the dean of JJ Hospital in Mumbai and an ophthalmologist, says. “The second type starts after adolescence. That means between 15 to 20 years of age. And the third variety starts after 25 to 30 years of age.”
RP works like this: There are two types of cells in the eye, cones and rods. Rods help us see at night, cones during the day. RP starts by attacking the rods, which is why night blindness is the first symptom. “Once this occurs, it can cause other complications, such as cataract or glaucoma,” Lahane says. “That will affect the day vision also and the patient is blind before 40 years of age.” One way to think of RP is “like ageing,” Lahane says. “Like our hair becomes grey, these cells become older at an early age. There is no treatment for the degeneration.”
Ophthalmologists recommend that families get themselves tested early so they can prepare themselves for the future should they have RP. “What happens with sudden blindness is that it is very difficult to accept and live with it,” Lahane says. The problem for the Vanjare family was that none of the ophthalmologists they saw at the hospital in Aurangabad could give them a diagnosis. They had no way to prepare themselves for a future they did not understand and could not see coming.
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Sitting in Kachru’s living room last month along with a group of other residents, the grey-haired Kachru (60), and Gorakh (55) are wrapped up in shawls to protect against the morning chill. They talk about their condition with no trace of self-pity. The three brothers support the family by begging. Every Monday, they take a bus to Aurangabad, where they spend the week. The nearest bus station is in a town called Gangapur that is seven kilometres away. The only road from the vasti is an orangish-brown dirt track that is just wide enough for a car. The edges of the road drop several feet into the fields on either side. If it isn’t raining, one of the other residents will drop them to the station on a motorcycle. In the monsoon, the road becomes a muddy soup and they have to be walked to the station. They no longer consider the difficulties and obstacles of the journey. It is simply something that must be done.
Mostly, they beg at the bus station in Aurangabad. They sleep at the bus station too. On Saturdays, they return to the village to buy supplies at the weekly market. Sundays are spent at home before the cycle starts again. All three brothers have a sighted-partner to help them and they split their earnings 50-50. They used to make about Rs 500 a week each but since demonetisation, that figure has dropped. The rest of the family is dependent on their elders to make ends meet.
Of course they were upset when they first went blind but they don’t see the point in complaining now. What they want is a better life for their children. Kachru began begging around the age of 19, with Gorakh and Manchinder eventually following their elder brother’s path. Their parents were both blind, which is where the cycle begins. According to the brothers, their father, who was a wrestler, and their mother went blind in their twenties.
Kachru and Gorakh studied until the fifth standard but then began to lose their sight. Kachru even had an operation done at the Ghati hospital when he was 12. He still had some vision then. After the operation, he was completely blind. “If we can’t do any work, what can we do? So we started going to Aurangabad and begging,” Kachru says. “There is no question of whether we miss our family or not, he says. “We have to go. Family comes second.”
The brothers met the local MLA some years ago but nothing came of it. They had not tried contacting theNational Association of the Blind because they were unaware the organisation existed.
Kachru’s 30-year old daughter, Hira, who is sitting on the floor beside her father, also went blind as a teenager. She has black hair, a nose ring and her head is covered with a scarf. “Nobody thought I would go blind because I could see so well,” she says. She used to work in the fields and look after the family, but since 2003 she has stayed at home and prayed that the next child will not go blind. “I have more faith in prayer than doctors,” she says. The family isn’t looking for a hand out. They are just tired of having to rely on the goodwill of others. They simply want the dignity that comes being self-sufficient.
During this conversation, Vijay and Satish are both present but say little. Satish doesn’t speak at all; sitting slumped in a chair with his head bowed. Vijay speaks only when spoken to and keeps his answers brief. It is only later, over the phone, that he opens up.
Manchinder (45) isn’t part of this group. He had left for Aurangabad already because he had recently taken a loan to buy a Micromax phone and couldn’t afford to take a day off. Later, at the bus station, where he is sitting on a bench in front of the entrance with his partner, Jadhav, he tells us he began begging at age 25. According to Manchinder, their father was devastated when the brothers all went blind. “My father used to tell me that ‘you can see so you must have a better life’”. Now it is Manchinder’s turn to worry about his children. His son, Aakash (18), and daughter, Anita (16), still have their sight and appear to be fine but after everything his family has gone through, he still has “a bad feeling”. He says he asks “God every day to let my children get ahead in life.”
If Manchinder had a choice, he would play music for a living instead of begging. He had learned how to play the tabla, as did his nephew Satish, who used to watch Manchinder play and imitate him using earthen water pots as a child. After he went blind, Satish would listen to the radio and play the tabla by ear. “I get more satisfaction from playing at an event than begging,” Manchinder said. “But I get asked to play [at events] only once a month.”
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However, there is hope that the cycle can be broken. Manchinder’s children can see, as can Kachru’s two younger children. Dr. Nachiketa Acharya, Consultant Ophthalmologist atSheffield Teaching Hospitals , says that, “If it [RP] doesn’t manifest in the next generation, then the risk of future generations getting it will be very low.” That would need to be confirmed by genetic testing though.
Other assistance is also available to the family. The National Association for the Blind runs a number of courses for the visually impaired, beginning with a three-and-half month basic rehabilitation course in Mumbai that is free of charge and covers a wide variety of tasks, including cooking and how to operate a gas burner, that make up modern life. “If a person is a little literate, then we are even teaching them the basics of computer with the help of JAWS, a talking software”, says Pradyna Upadhaye, the director of the rehabilitation centre.
The NAB also provides vocational training and employment assistance. Upadhaye said the association would have to meet the family to understand how much education they have and to determine what their interests are. “Even if they don’t want a professional occupation, self-employment is promising option,” Upadhaye says. Last year the NAB helped one of their female candidates open a shop for baby clothes near a hospital in Mumbai.
On hearing of their musical interests, Upadhaye suggested the NAB could buy them instruments if they wanted to form a performance group. The NAB was also willing help fund genetic testing for the youngest generation. However, Upadhaye believes that Vijay and Satish need to do the rehabilitation course first. “Once they come here, they will find out something new,” she says. “First thing, the atmosphere will change. Once the background changes, their thinking process will automatically change.”
Meanwhile back in Vanjare Vasti, Vijay left the area last week for the first time since losing his eyesight. The family had run out of money and he had to join his father and uncles in Aurangabad to beg. “First day I cried a lot, I never imagined I would have to do this. This was unacceptable for me.”
The cycle, for now at least, continues. —With inputs from Alka Dhupkar
One family has been living with a personal tragedy for half a century that has left most of them in the dark.
ABOUT 45 kilometres west of
In this family, 11 of 17 people across two generations are blind. They are the three brothers and elders: Kachru, Gorakh and Manchinder, their brotherin-law Petrus and his wife Kadubai, Gorakh’s wife Shashikala, Gorakh’s children: Satish, Vijay, Sunanda, and Ujjwala, and Kachru’s daughter Hira. All of them have
It was only a year or two ago that the family first heard the term. It remains a mystery to them. The family member who finally received the diagnosis is 24 year-old Vijay Vanjare. His story might be the most tragic of them all because the family thought he had escaped the blight that had afflicted the rest of them. His father and uncles had gone blind as teenagers, as had his elder brother Satish and two sisters. Vijay still had his eyesight when he turned 21 and would ride his Hero Honda Double X motorcycle everywhere. He used to get daily work cutting trees for the sawmill, which combined with the income from the family’s 1.5 acres of land, was enough to live on. He was happy that he could see the world in a family of five blind people. Then, at 23, his eyes began to hurt and he would get red rashes.
“I went to the local private doctor and he told me I had a cataract,” Vijay says. “I had night blindness too. So he advised me to visit the senior doctor at Aurangabad civil hospital (known as Ghati Hospital). The doctor checked me and declared me 100 per cent blind and said that the vision loss is irreversible.” He ended up having to sell his motorbike to help feed his family. His favourite memory is visiting Mumbai five years ago on the Mahaparinirvan Din (death anniversary) of Dr Babasaheb Ambedkar. But that memory has taken on a dark shade now because “somebody has to accompany me everywhere I go. I have a wooden stick, not even the foldable white stick,” he says.
For a year and a half, Vijay did not leave the vasti. He was not comfortable venturing out in to a suddenly unknown world. His young wife Kajal, a daily wage worker, gave birth to a boy a year ago but Vijay has never seen his face.
*********
There are three types of genetic transmissions that can pass on retinitis pigmentosa from one generation to the next: autosomal recessive; autosomal dominant and x-linked. According to the
Since the family has not been tested, the type of RP they have is unclear. Reports put the incidence of Retinitis Pigmentosa at about 1 in 4000 people worldwide, but a 2008 study done in Tamil Nadu of those above 40 years of age, and published in Ophthalmic Epidemiol, found the disorder in approximately 1 in 930 people in the urban population and 1 in 372 in the rural population. “For male children, RP can start congenitally before two years of age,” Dr. TP Lahane, the dean of JJ Hospital in Mumbai and an ophthalmologist, says. “The second type starts after adolescence. That means between 15 to 20 years of age. And the third variety starts after 25 to 30 years of age.”
RP works like this: There are two types of cells in the eye, cones and rods. Rods help us see at night, cones during the day. RP starts by attacking the rods, which is why night blindness is the first symptom. “Once this occurs, it can cause other complications, such as cataract or glaucoma,” Lahane says. “That will affect the day vision also and the patient is blind before 40 years of age.” One way to think of RP is “like ageing,” Lahane says. “Like our hair becomes grey, these cells become older at an early age. There is no treatment for the degeneration.”
Ophthalmologists recommend that families get themselves tested early so they can prepare themselves for the future should they have RP. “What happens with sudden blindness is that it is very difficult to accept and live with it,” Lahane says. The problem for the Vanjare family was that none of the ophthalmologists they saw at the hospital in Aurangabad could give them a diagnosis. They had no way to prepare themselves for a future they did not understand and could not see coming.
*********
Sitting in Kachru’s living room last month along with a group of other residents, the grey-haired Kachru (60), and Gorakh (55) are wrapped up in shawls to protect against the morning chill. They talk about their condition with no trace of self-pity. The three brothers support the family by begging. Every Monday, they take a bus to Aurangabad, where they spend the week. The nearest bus station is in a town called Gangapur that is seven kilometres away. The only road from the vasti is an orangish-brown dirt track that is just wide enough for a car. The edges of the road drop several feet into the fields on either side. If it isn’t raining, one of the other residents will drop them to the station on a motorcycle. In the monsoon, the road becomes a muddy soup and they have to be walked to the station. They no longer consider the difficulties and obstacles of the journey. It is simply something that must be done.
Mostly, they beg at the bus station in Aurangabad. They sleep at the bus station too. On Saturdays, they return to the village to buy supplies at the weekly market. Sundays are spent at home before the cycle starts again. All three brothers have a sighted-partner to help them and they split their earnings 50-50. They used to make about Rs 500 a week each but since demonetisation, that figure has dropped. The rest of the family is dependent on their elders to make ends meet.
Of course they were upset when they first went blind but they don’t see the point in complaining now. What they want is a better life for their children. Kachru began begging around the age of 19, with Gorakh and Manchinder eventually following their elder brother’s path. Their parents were both blind, which is where the cycle begins. According to the brothers, their father, who was a wrestler, and their mother went blind in their twenties.
Kachru and Gorakh studied until the fifth standard but then began to lose their sight. Kachru even had an operation done at the Ghati hospital when he was 12. He still had some vision then. After the operation, he was completely blind. “If we can’t do any work, what can we do? So we started going to Aurangabad and begging,” Kachru says. “There is no question of whether we miss our family or not, he says. “We have to go. Family comes second.”
The brothers met the local MLA some years ago but nothing came of it. They had not tried contacting the
Kachru’s 30-year old daughter, Hira, who is sitting on the floor beside her father, also went blind as a teenager. She has black hair, a nose ring and her head is covered with a scarf. “Nobody thought I would go blind because I could see so well,” she says. She used to work in the fields and look after the family, but since 2003 she has stayed at home and prayed that the next child will not go blind. “I have more faith in prayer than doctors,” she says. The family isn’t looking for a hand out. They are just tired of having to rely on the goodwill of others. They simply want the dignity that comes being self-sufficient.
During this conversation, Vijay and Satish are both present but say little. Satish doesn’t speak at all; sitting slumped in a chair with his head bowed. Vijay speaks only when spoken to and keeps his answers brief. It is only later, over the phone, that he opens up.
Manchinder (45) isn’t part of this group. He had left for Aurangabad already because he had recently taken a loan to buy a Micromax phone and couldn’t afford to take a day off. Later, at the bus station, where he is sitting on a bench in front of the entrance with his partner, Jadhav, he tells us he began begging at age 25. According to Manchinder, their father was devastated when the brothers all went blind. “My father used to tell me that ‘you can see so you must have a better life’”. Now it is Manchinder’s turn to worry about his children. His son, Aakash (18), and daughter, Anita (16), still have their sight and appear to be fine but after everything his family has gone through, he still has “a bad feeling”. He says he asks “God every day to let my children get ahead in life.”
If Manchinder had a choice, he would play music for a living instead of begging. He had learned how to play the tabla, as did his nephew Satish, who used to watch Manchinder play and imitate him using earthen water pots as a child. After he went blind, Satish would listen to the radio and play the tabla by ear. “I get more satisfaction from playing at an event than begging,” Manchinder said. “But I get asked to play [at events] only once a month.”
*********
However, there is hope that the cycle can be broken. Manchinder’s children can see, as can Kachru’s two younger children. Dr. Nachiketa Acharya, Consultant Ophthalmologist at
Other assistance is also available to the family. The National Association for the Blind runs a number of courses for the visually impaired, beginning with a three-and-half month basic rehabilitation course in Mumbai that is free of charge and covers a wide variety of tasks, including cooking and how to operate a gas burner, that make up modern life. “If a person is a little literate, then we are even teaching them the basics of computer with the help of JAWS, a talking software”, says Pradyna Upadhaye, the director of the rehabilitation centre.
The NAB also provides vocational training and employment assistance. Upadhaye said the association would have to meet the family to understand how much education they have and to determine what their interests are. “Even if they don’t want a professional occupation, self-employment is promising option,” Upadhaye says. Last year the NAB helped one of their female candidates open a shop for baby clothes near a hospital in Mumbai.
On hearing of their musical interests, Upadhaye suggested the NAB could buy them instruments if they wanted to form a performance group. The NAB was also willing help fund genetic testing for the youngest generation. However, Upadhaye believes that Vijay and Satish need to do the rehabilitation course first. “Once they come here, they will find out something new,” she says. “First thing, the atmosphere will change. Once the background changes, their thinking process will automatically change.”
Meanwhile back in Vanjare Vasti, Vijay left the area last week for the first time since losing his eyesight. The family had run out of money and he had to join his father and uncles in Aurangabad to beg. “First day I cried a lot, I never imagined I would have to do this. This was unacceptable for me.”
The cycle, for now at least, continues. —With inputs from Alka Dhupkar
