Volume 18 Number 6
Batting for India's Disabled
01 December 2005
Pamela Jenner discovered a Valley for the Disabled hidden away in the rural heartlands of Tamil Nadu
THE SIGN OUTSIDE Amar Seva Sangam bears the words 'Live to serve'. Inside the entrance a group of lads are playing cricket. Hardly unusual, you might think, in India-a country obsessed with the sport. But take a closer look and you will see that the batsman is sitting on the ground, the fielder is sprinting across the pitch on his hands, and the bowler is in a wheelchair.
Each player is disabled but at the Sangam they have been taught not to let anything stop them from achieving their goals-or scoring runs. Many have had to cope with poverty and exclusion in their communities and families-so playing a game of cricket without legs is easy!
Surrounded by the mountains of the Western Ghats, the Sangam provides sanctuary and hope to children and young people who previously had none. Here they get an education, medical treatment, career training and more-and it costs them nothing.
The story behind it is nothing short of a miracle. More than ten years ago two men-Sri Ramakrishnan and Sri Sankara Raman-set out to fulfil their dream of creating a 'Valley for the Disabled'.
Ramakrishnan is paralysed from the neck down. He can only sit up for four hours a day. For the rest of the time he lies on a bed unable to move. Even basic needs like wiping his nose have to be carried out by a nurse who rarely leaves his side.
Sankara Raman can manage to sit up, but his whole body is affected by muscular dystrophy. His hands are contorted, he has difficulty breathing and he cannot feed himself.
Day to day living is a huge challenge for both these men, yet together they have transformed the lives of thousands of disabled people in the towns and villages of Tirunelveli district, Tamil Nadu.
In 1975 Ramakrishnan was a promising engineering student. While travelling to an interview for naval officer selection, he met with an accident that changed his life for ever. As he lay paralysed in a hospital bed despairing for his future, his doctor talked about the work he might do to help other disabled people. When he returned home, Ramakrishnan decided to do just that.
The Amar Seva Sangam (named after the doctor) was established in 1981 but it was ten years later, when Ramakrishnan met chartered accountant Sankara Raman (see box p6), that the project really took off. They put together a financial proposal and with Raman's contacts attracted both national and international funding to build a centre for the disabled on a 30-acre site on the edge of Ramakrishnan's village, Ayikudy.
Building work has taken place in phases and the Sangam now includes a school for around 400 disabled and able-bodied children; a medical centre with a team of physiotherapists; a computer centre where students can study for degrees; training centres for skills such as tailoring and crafts; a day centre for children with learning difficulties; a calliper workshop; residential care for children with physical disabilities; and a range of outreach projects to local villages.
Many of the younger children are disabled due to congenital birth defects-conditions I have never seen in Britain. Such defects are often caused by mothers taking inappropriate medicines during pregnancy. In India, where it is easy to obtain medication without prescription, a pregnant woman may take medicines for sickness or headaches not realizing the disastrous consequences they could have on her unborn child.
One of the most common forms of physical and mental disability I witnessed in children at the Sangam was cerebral palsy. I was told by the physiotherapists that this is caused mainly by poor birthing techniques. Village 'midwives' often carry out forceps deliveries without specialist training and the result can be severe brain damage.
The teenagers and those in their twenties are mainly disabled because of polio-which has now been virtually eradicated in India. I was shocked at just how devastating this disease can be. For some it results in a slight limp; but for others, where almost the whole spine has been affected, it can mean life in a wheelchair.
I saw many beautiful young women in wheelchairs fantasizing about finding a husband and having children. Sadly both are unlikely. In rural Indian society men do not want disabled wives who can neither do housework nor produce offspring. The Sangam can at least provide them with a chance of earning their own living. Many are doing computer courses and learning English, hoping to work in call centres. If they don't get work, however, the outlook will be bleak.
For men it is slightly better. Women in India are sometimes prepared to marry disabled men. Indeed, both Ramakrishnan and Sankara Raman have devoted young wives. But, disabled men still have to find work. Uthandakalai, who is wheelchair-bound because of polio, has gained qualifications in management and computing and is now desperately trying to raise funds to launch a desktop publishing centre employing fellow disabled people. Since his father died of cancer 24 years ago, Uthandakalai has been the only man in his family, and his mother and sisters depend on him.
There are plenty like him: Mohammed Ali, paralysed from the waist down by polio, who was abandoned by his parents at the age of three and is now training for a BA in fine arts; Siva Prasad, unable to walk because of polio and taking a computer course; and Devendran, a labourer, who broke his back falling from a building but miraculously can still walk, albeit slowly, and is retraining as a tailor.
People come to the Sangam with broken spirits as well as broken bodies but the staff are adept at dealing with both. With the inspiring leadership of Ramakrishnan and Raman and the dedicated staff, many of whom work for nothing in return for food and accommodation, these disabled young men and women know that they do indeed have a future. When they leave, they will be equipped with the skills to earn money and look after themselves.
In 2002 the Sangam was awarded the 'Best Institution in the Services of the Disabled and Upliftment of Rural Poor' by the President of India, Dr Abdul Kalam.
In 2004 the Chief Minister of Tamil Nadu awarded Sankara Raman the title 'Best Social Worker'.
The young men and women at the Sangam know full well that if two chronically disabled men can achieve such recognition from the leaders of their country, then the only boundaries for them are in their minds and certainly not their bodies.
Breaking down barriers
SANKARA RAMAN was born with muscular dystrophy, but it was not until he was nine years old that the symptoms began to develop. He started to find it difficult to get to his first floor classroom and the teachers wanted to move the class to the ground floor.
'I didn't want the class changed for my sake,' he said. 'I don't want to be helped. I don't want to look as if I am a weak person.'
It was that tremendous determination not to give in to his debilitating condition that led Raman to achieve at school and build up a successful practice as a chartered accountant.
His meeting with Ramakrishnan was timely because he had been thinking of setting up a project for the disabled near Chennai. Alongside the creation of Amar Seva Sangam, they have also worked to improve the rights of the disabled on a national level.
In 1995, the two men conducted a national seminar on disability. And after much interaction with government officials, they paved the way for railway coaches for the disabled.
'We want to create a barrier-free environment for the disabled,' said Raman. 'I have had to face all these problems myself. For instance, in business, people see someone in a wheelchair and wonder if they should risk dealing with such a person.'
Raman lives at the Sangam, so has medical care available, and is looked after by his wife, Pushpa. His condition is worsening but he says: 'I don't accept I am deteriorating. My family is concerned about me but I don't want to burden them with my problems.'
When he is not travelling to conferences and meetings, Raman does fund-raising (always a challenge) and administration. Despite a gruelling seven-day week he is determined to win the battle both locally and nationally to give disabled people equal rights and control over their lives. 'I have seen people with polio kept in a corner of their house with no knowledge of the outside world,' he said. Distressing sights like this motivate him to continue working for change.
UNTIL RECENTLY, physically and mentally disabled children born to poor rural families in Tirunelveli District, Tamil Nadu, had no treatment and little hope for the future.
Now, however, thanks to a project started by the Sangam, a transformation is taking place. Nearly 100 villages are supported by teams of physiotherapists, rehabilitation officers and social workers trained to identify children and young people with problems. They, in turn, teach the villagers themselves to administer physiotherapy and also set up self-help groups where children can learn through play to improve their mental and physical abilities. Their aim is to get the community looking after itself, which is both empowering and cost-effective.
I accompanied one of the Sangam's senior physiotherapists on a village trip to get an idea of some of the work in progress.
The first home we visited was a tiny shack-two small rooms housing a family of five. A four-year-old boy, who looked more like a two-year-old, was sitting in the corner-eyes half shut, flies buzzing around his face. He was well cared for but, with no running water, no electricity, no furniture and certainly no toys, there was little his parents could do to help him until the Sangam intervened. Three months prior to my visit he was identified as having cerebral palsy and learning disabilities, and has been having regular physiotherapy ever since.
His family is delighted that their son, who could only lie on the ground, is now sitting almost unaided after such a short period of treatment. Eventually it is hoped he will be able to walk and look after his own basic needs. Attendance at a self-help centre improves his cognitive skills and provides mental stimulation.
The lives of several other families I met are being revolutionized in a similar way. Nineteen-year-old John spent most of his life propped up against a wall at home. His legs are cruelly contorted after contracting polio at the age of two. The disease affected his spinal cord leaving him unable to sit up.
The staff at the Sangam discovered him during one of their outreach trips and have arranged for him to have an operation in Chennai to release the tendons in his legs. He will then have physiotherapy to strengthen them and finally calipers to enable him to walk. John is now living at a hostel on the Sangam complex, where he attends English classes. He is intelligent and resourceful and has a great future ahead of him.
When the Sangam began its outreach work, villagers were highly suspicious of these 'strange' people in smart clothes who appeared seemingly out of nowhere and wanted to treat their children. However, having witnessed the dramatic results, they are now greeted like friends. And the project is to be extended to cover 300 villages in the district.
Pamela Jenner, a journalist and youth worker, took a three month sabbatical to visit India
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