September 2015 By Jamuna Rangachari When the Universe throws us a challenge, there is nothing It loves more than for us to receive it with playful joy, and to lead our lives with dauntless commitment. In the process an ordinary life becomes truly extraordinary, and indeed a blessing to humanity. Jamuna Rangachari profiles four such bravehearts I have personally always been motivated and inspired not through mere philosophy but by learning how others lived and faced their challenges. I am fascinated by the extraordinary power of the human spirit that shines out and transfigures even the most difficult of lives, often converting such people into moral giants who contribute in unparalleled ways to society. From such warriors we learn how limitations and setbacks can be converted into massive opportunities for contribution and expansion. The hand of God is all too visible in the lives of those pummelled by fate. Once they take the initial step to meet the adversity with fortitude, their lives open up unstintingly. Each step forges another, each success only creates more passion and excitement which opens the door to more success, until in time we find them freewheeling into massive achievement, and eventually become Samaritans to the world itself. In facing their condition they not only learn to manage it, but get in touch with their passion and purpose, and use them to empower thousands. In the following pages you will come across the pioneering work executed by the mother of an autistic child, a patient of multiple sclerosis, and two visually impaired people. Their achievements testify that the only real handicap is in the mind, and not anywhere in the body. The Autism Activist Merry Barua: In her attempt to heal her son she pioneered the autism movement in India “‘Love mama’, my son told me today. He also spontaneously said, ‘It is raining’, Merry Barua from Delhi told me with verve and excitement in her voice. What makes these words truly noteworthy is that it was spoken by an autistic youth whose capacity to express himself in words has been extremely limited. The very fact that he could communicate spontaneously was like music to Merry’s ears. Her son, Neeraj, who is now 35, is, in a sense, the prime catalyst of an entire movement for autism awareness in India. “The one thing about autism and in fact, life itself is that learning never stops,” says Merry with a smile. “As my son improves each day in communicating with me and others at his own pace, I myself remain eternally a learner,” she says. Neeraj, who was born in 1981, exhibited violent and odd behavior from the time he was a toddler. Despite being taken from one premier disability organization after another, doctors misdiagnosed her son until he was four years old. “Neeraj was diagnosed with autism in 1985. At that time, nobody knew anything about it. Even the doctor who diagnosed him told me to read more about it myself. He only told me not to get confused but to be clear that I was dealing with autism,” she says. This was valuable advice. For Merry was soon plied with innumerable opinions on Neeraj’s malaise from well-meaning advisors. She even wondered if she had been a bad parent. Determined to get a handle on her son’s mysterious condition, she read many books, and met many people, but there seemed to be nothing that anyone could do. She did not even find a peer group of other parents who had faced this situation. “Nobody had any solution. I was in a vacuum and did not know what to do, or whom to turn to,” she says. She began accepting that she was in a difficult situation. She knew she was doing something wrong with her son, but had no one to guide her on what she should be doing. Eventually, she went to the US to attend a course for parents of autistic kids. It was here that she learnt to see the communication disorder in a new light. She worked with Neeraj at home for a year, helping him develop a sense of the real world. His violent behavior reduced and Merry began to feel that she was on the right track. She knew it would be a long journey, but at least she was on the path of understanding her son. At the same time, she observed that nothing had changed regarding autism awareness in India. Something needed to be done. She knew how much she had suffered. “I knew I had to do something, “ she says. She did everything she could to disseminate information about autism, from distributing posters and pamphlets to creating support groups with parents of autistic children. It was a slow but steady start. This was how Action for Autism began in 1991. She understood that the major issue was the severe lack of information on autism. Everyone needed to be made aware of the situation. She tried ardently to create awareness among the general population, educationists, mainstream professionals, policy makers and medical staff, thereby trying to remove the taboos surrounding autism. She opened a library stocked with various books on autism, which is still the only one of its kind in the country. A journal, Autism Network, was launched in 1994 and circulated around the country for the benefit of hundreds of families. The other challenge all parents faced in India was not having any schools for autistic children. Since no one was doing it, Merry started one. That was the first time she actively started working with other autistic children apart from her son. As autism strikes each individual with varying results, it was a huge challenge to start a school where she would be working with different children at different ages and stages. Then, again, there was no teacher. She did not know where to get one. Merry characteristically did not give up. “Since no one was doing it, I had to do it,” she says, recalling how she trained herself and later passed on the knowledge to others. “All I wanted and still want is that others should not have to go through what I underwent,” she says. With this in mind, she makes sure that parents are an essential part of these programmes. As a parent herself, she knows how important it is that they learn the art of interaction with their children, and are able to put it to practice at home as well. “It is never too early to work on the development of a child,” she says, and has started an early intervention programme where children as young as two years of age are taken in. She also founded a vocational training centre for teenagers where they learn skills which could help them contribute to society. There is also an employment centre, Aadhar, run by her, that is specifically designed for adults with autism offering varying degrees of support for the participants. Some are trained while some learn while working there. Soon, there were results all across and Merry became well known as a person who knew how to deal with autism. She and people from her organisation travel all around the country, and even cross the border to Bangladesh and Pakistan, holding Teacher-Training programmes for parents and professionals. Even the government has understood autism and has learnt to include people with autism, in the CBSE exam in 2010. Essentially, she and her organisation have managed to bring autism to the forefront of national consciousness. The subject is no longer met with ignorance but instead, is treated with sensitivity. She considers her most important achievement to be that people dealing with autism do not feel completely alone and uncared for. There are still many things to achieve, of course, but is it not said that the journey of a thousand miles begins with a single step? An empowering vision Dipti Bhatnagar: Blindness did not stop her from realizing her dreams and making a difference to the lives of others “Though I have had several inspirations, the first one was my grandmother. Many people did not believe I could get educated, as I was born blind, but it was she who was sure I needed to go to a school, and motivated me to do so,” says Dipti Bhatia, from Chennai. After her first 10 years of schooling at Little Flower Convent, she went to Vidyodaya School, also in Chennai. She remembers the time when, as a teenager trying for Plus Two admissions, she walked up to a school correspondent and said: “I know Braille. I can listen to your teachers and take down my notes in Braille. Let us try it out for a month. If it doesn’t work out, I will move out.” Mr. Cornelius, the then correspondent of Vidyodaya School, was moved by her passion and she got admitted. Having successfully battled this initial setback, there was no stopping this doughty young girl. Dipti went to Ethiraj College, Chennai, to pursue a Bachelor’s degree in history, and later did her Masters and M.Phil there as well, with the intention of becoming a lecturer. With hardly any technological aid and few readers’ associations then, it meant tremendous hard work, commitment and enthusiasm. She did this diligently and passionately. Nor was this her only occupation. She learnt to operate ham radio through her dad’s friends, many of who were hams. They used it for communicating during the motor sport rallies they helped organise. She appeared for the exam and got the license. “Many of us knew each other only through the ham and did not meet face to face. So when we did meet they were a little surprised to discover that I was blind. They wanted to know how I changed frequencies. Ham works like the radio and therefore it is no big challenge to work on it,” she says. As her whole family was into motor sports, she took part in a rally for the blind. She won the first three times and now organizes it. She also started volunteering with the social organisation, Vidyasagar, which works with children who have disabil
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