In India, parents of children with disabilities receive very little support. A Kindernothilfe project helps them take better care of their children.
Text: Katharina Nickoleit, freelance journalist, photos: Christian Nusch
Juhi says nothing as Pushpa Singh enters the small, dark room, where she lives with her parents and two siblings. She gives no sign of even noticing the young woman. Listlessly, the twelve-year-old, seeking protection, sits tightly squeezed against her mother, Shakina, who is speaking about Juhi’s difficulties. “When I’m not with her, she starts to panic. She is entirely dependent on me. I can still take care of her, but what would happen to her if I was to die? How could my daughter earn a living? Who would marry her?"
Juhi is learning to speak
Pushpa listens to the desperate mother but has no answers to these questions. Yet, she can help her, at least a little. This is because the 25-year-old therapist, who works for Kindernothilfe’s partner organisation, Nav Bharat Jagriti Kendra, in Patna, India, is the only person who can get through to Juhi. When Pushpa looks at her directly and speaks to her in a loud voice, the girl’s eyes suddenly light up. Pushpa points to different people and objects in the room, says their name, which Juhi repeats. After a few rounds of this, Pushpa only has to point and Juhi speaks without Pushpa saying anything. She laughs out loud when the neighbours applaud in response. For years now, they have been watching this strange, totally introverted girl grow up; a girl, who does not speak, show any feelings and is barely able to follow the simplest instructions.
“Having a disabled child isn’t easy,” says Pushpa. “But having enough money, means you can pay for therapists, buy aids and equipment, and give your child the support he or she needs. But if you’re poor, you just have to manage as best you can. At least, that’s how it is in India.” Thanks to Kindernothilfe’s donors, at least some of the children with disabilities living in Patna’s slums receive help for a limited period. Pushpa will be able to work with Juhi for six months, probably all the professional therapy the girl will receive in her lifetime. Shakina could never afford to pay for a therapist, and she has no health insurance to cover the cost. Unfortunately, the project does not have the resources to provide therapy on a permanent basis. These six months must, therefore, be used as effectively as possible. That is why Pushpa does not work with Juhi alone, but usually together with her mother. “I teach Shakina how to talk to her daughter, in a way that enables her to open up”, the therapist explains. “I show her exercises she can do with Juhi and how she can encourage and reward her”. This means that, in future, the mother will be able to support her daughter herself.
Sonia has a wonderful family
Children, brought up in poverty, are often particularly affected by disability: because poor nutrition and hygiene make them susceptible to serious illness; because there is nowhere they can play in their neighbourhoods except on the streets, which, unfortunately, also means they are more likely to be involved in accidents; or because vaccination campaigns do not reach the slums, and children are left with disabilities as a consequence of contracting easily preventable illnesses such as measles or polio. For example, Sonia, now 15 years old, who had polio as a small child, leaving her crippled, with deformed feet. Since then, she has only been able to walk on her knees. “I can only leave the house when my brothers carry me down the stairs,” she says.
When she was little, this did not pose a problem and, thus, Sonia was, at least, able to go to primary school. But as she got bigger and heavier, and when her body subsequently swelled up as a result of a thyroid disorder, it all became too complicated. Since then, Sonia hast virtually never left her room. But she has a family that cares about her. Not only her mother, but her twelve-year-old sister Rosi, too. They watch and listen carefully, as Pushpa shows them the exercises they can do with Sonja, and how they can massage her legs to keep them moving. And, with no complaints, her three older siblings, already out working, hand over their daily earnings of just three and a half euros to their parents, so that they can buy the drugs Sonia requires because of the many accompanying ailments. And, Rosi states emphatically, sometime in the future, when their parents are no longer alive, the remaining family will still feel responsible for her. But money is tight. Before Pushpa came into their lives, the family did not even know that everyone with a disability is entitled to a small amount of state support and that a mini-health insurance exists to cover at least the costs of hospitalisation. Helping clients to register and apply for the monthly disability pension of five euros is also part of Pushpa’s work.
Raj will soon be able to walk unaided
The session is over, Pushpa says goodbye, jumps onto her scooter and drives to her next patient. She knocks on a door. On the other side of the door is a dark room crammed with belongings, in which seven-year-old Raj lives with his parents and four siblings. Just like Juhi, he has been disabled from birth. He does not speak, cannot eat unaided or go to the toilet. But for about a week now, shortly after Pushpa, through physiotherapy and massage, started to loosen up his muscles and ligaments, he is able to take a few steps with the support of his mother, Rishema. “I never thought that would be possible,” she says. Her whole face lights up, when Pushpa tells her she is confident her son will soon be able to walk unaided. Even though six months of therapy may seem very short – it can be enough to make a difference to a whole life.