The world’s largest democracy is reaching milestone after milestone, from record-breaking economic growth to the recent eradication of polio. Danielle Batist reports from IT capital Bangalore, where millions still struggle to share in the success.
Fifteen year-old Nagma Sultana smiles shyly as she enters the tiny top floor flat. The smell of the open sewer nearby penetrates the room. There are no windows in the filthy, concrete walls; the only light comes in through the open door that leads to a narrow corridor. Part of the cold, stone floor is covered with a thin rug, other than that the room is empty. Loud noises from the slum streets echo inside. These living conditions are not what politicians and investors talk about when they promote India’s own ‘Silicon Valley’. But for Nagma and two million other Bangaloreans, this is home.
The situation is even harder for Nagma as she suffers from polio in her left leg. Climbing the narrow staircase to her house on crutches is a daily challenge, made worse by the fact that her movement is restricted by a burqa. As a Muslim girl, she needs to wear the black, all-concealing veil whenever she goes out, disguising her mobility aids in the process. “Sometimes people push me away from a busy bus stop and I almost fall over. They don’t see I’m disabled when I wear the burqa.” Committing to the Islam-prescribed five prayers a day also throws up challenges: “I cannot kneel down with my calliper on, and taking it off each time is very painful.”
Nagma is part of the last generation to grow up with polio in India. After decades of battling to eradicate the virus, India came off the WHO list of polio endemic countries last month. In 2009, the country still had the largest number of polio cases in the world, but after a 12-month period without any new cases, the disease is officially tackled. With only Afghanistan, Pakistan and Nigeria left on the world list, polio will soon be a disease of the past.
For young patients like Nagma, however, it will very much determine their future. “In my culture, girls usually marry at sixteen. But who will marry me? If people see my leg, they think that Allah is punishing me. My family will have to pay more dowry for me.” Although India banned the payment of dowries in 1961, the practice is still commonplace. Brides’ families who cannot afford to pay the often high sums of money requested by their new in-laws encounter harassment and sometimes violent threats. Women’s groups claim that up to 25,000 brides get murdered each year when the demanded dowry cannot be paid.
“They did lots of pujas for me. My family was fasting for sixteen days at a time. They believed it would cure me.”
Nagma contracted the polio virus when she was just nine months old. Her father walked out on the family when she was a toddler, leaving his wife alone to look after five daughters and two sons. The family struggled and with no money for a hospital examination, Nagma’s mother resorted to traditional and religious healing methods to try and cure her daughter. “They used to take me to the Dargah temple, some 100 kilometres away by bus. People with illnesses go there on a pilgrimage when it is full moon and half moon. They did lots of pujas[ritual prayers] for me. I also got oil massage treatments for my leg and my family was fasting for sixteen days at a time. They believed it would cure me.”
Whilst the city around her underwent the biggest make-over in its history, Nagma’s childhood was a constant battle for survival. “I could not go to school because I couldn’t walk. The neighbour kids used to call me names, like ‘spastic’, and when they were skipping they said I couldn’t join. It made me really sad.”
As a single parent household, the family’s income is barely enough. “My mother and sisters sell dosa [crispy savoury pancakes] from morning to evening, they make around 30 or 40 rupees per day [less than 50 pence]. I help by rolling incense sticks, which earns us around 10 rupees per day. We usually only eat dosa, no vegetables, fruit or meat. Sometimes we just drink water and go to sleep. I feel angry because my dad does not care about us, but we are lucky to have the type of mum that we have. When we don’t have enough food, she gives her own to us and does not eat herself.”
“We are lucky to have the type of mum that we have. When we don’t have enough food, she gives her own to us and does not eat herself”
The Bangalore-based Association of People with Disability (APD) estimates that 6 per cent -72 million people- in the country have a disability. According to data from National Sample Surveys around 29 million of those have physical disabilities, whilst 43 million Indians are believed to suffer from mental disorders. APD programme manager Gopinath Krishnapur says that although some diseases, including polio, are now under control, the number of other disabilities is still growing. “We have increasing numbers of people with spinal injuries, often as a result of work-related accidents. We also see many new cases of babies with congenital disabilities, including birth defects and genetic diseases, due to malnourishment among pregnant women.”
Krishnapur says that the work his charity does barely scratches the surface of the problems in the country. “Support is only present in few major cities and towns where NGOs are active. Out of all people with physical disability, more than 60 per cent need a lot of support in all forms to be able to survive.” With 17.4 million people in need of urgent help to cope with their physical disability and escape extreme poverty, the challenge is huge. On top of the basic support required, Krishnapur says that a lot of work also needs to be done to get India to integrate its disabled people into society. “One of the big challenges we face is to create a barrier free environment for them, which does not exist in more than 90 per cent of public places.”
Before an APD outreach worker entered Nagma’s slum, the teenager was home-bound and totally dependent on her mother. Through the supply of mobility aides including crutches and callipers, she can now walk independently and attend school. APD, which is supported by Scottish charity SCIAF, worked with the teachers and also assisted Nagma’s illiterate mother in applying for a government disability pension. Although it is just 400 rupees per month [5 pounds], the money often makes the difference between food or no food for the family. Parent training classes helped the mother understand Nagma’s disability, and she now assists with physiotherapy exercises.
The future for the Sultanas remains uncertain. The room they live in belongs to the family in-law, who haven threatened to throw them out because of unpaid rent. Nagma looks up to the sky when she thinks about what might happen to them. “Only God knows where we will go.”
Despite the modernisation of the city of Bangalore, attitudes towards people with disabilities remain problematic. A World Bank report on disability in the country states that “social attitudes and stigma play an important role in limiting the opportunities of disabled people for full participation in social and economic life, often even within their own families.” In surveys carried out for the report, around 50 per cent of households saw the cause of disability as a ‘curse of God’. It further concluded that women with disabilities face numerous additional challenges.
Vimalashree Ramamurthy, 23, knows these challenges all too well. Growing up with polio in the slums of Bangalore she always felt an outsider: “I dreaded going to school. I was tortured by the other children. They pushed me over because of my leg and they never called me by my name; I was just called disabled girl. I cried all the time. I was so scared and sad that I wanted to kill myself.”
The situation at home has been equally challenging, as Vimalashree’s father does not take any responsibility for his disabled daughter. “He is a terrible drunk. He often promised to stop drinking. He would go on a pilgrimage to Kerala and for a while he stopped beating us, but then he would start again. Even if we called the police they would not do anything. He is my father so I cannot take action against him. It is our family and our problem.”
Like many disabled girls in India, Vimalashree worries about getting married. She is afraid that men won’t value her in the right way. “People think we are stupid just because we are disabled.” The example of her own father has increased her fear: “I don’t want to get married because always I have the ghost of my father in my head. I imagine the man I married would beat me too and I don’t want that. ”
With help from APD, Vimalashree recently managed to get a temporary job as an accounts assistant in a large firm. Although she is now able to provide food for her family, the worries about the future remain. “I spend four hours a day commuting [from the slum to the commercial district] and sometimes I get harassed on the bus. I try to work as hard as I can but I know the job will end. I pray every day that things will get better but I am not sure if they will.”