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|
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 disabilities. Its founder, Poonam Natarajan, is, apart from her grandmother, her other source of inspiration. Dipti volunteered to teach a young lad called Rajiv who was in Std 10th and suffering from cerebral palsy. He managed to complete five years’ portions in two years. Her exposure to the institute steadily increased her respect for the remarkable work they were doing.
After studies, she started looking for a job.
It is said that God has better plans for us than we can possibly imagine. When Dipti eventually obtained a lecturer’s job through the Employment Exchange, she did not take it up but continued with Vidyasagar, for she had by then bonded remarkably well with them.
She learnt everything on the job and later headed the inclusion cell there. She took up several related issues and also started looking at what needed to be added to the Sarva Shiksha Abhiyan, the Government of India’s flagship programme for achievement of Universalisation of Elementary Education (UEE), to include physically challenged people.
On whether things have changed in the last few years, she says: “Of course they have changed as tremendous work is going on. However,” she adds, “the questions that a differently abled child asks are still the same, ‘Can my teachers handle me?’ ‘Will other children interact with me?’ ‘Will I be secure and looked after?’”
On the general attitude to disability, she says, “Persons with disability have strengths, weaknesses, feelings, likes, and dislikes just like other people do. We are not heroes, nor people to be pitied. There are specific needs to be met, and getting these needs met is our right.”
When I asked her how she was able to overcome all the challenges in her life, she said, “I don’t think I have overcome any challenge, I have just learnt to lead a complete life. I knew and did accept I had some limitations. I, however, also knew these can be handled and have done it. It is not overcoming but leading a life with acceptance that is the key,” she says.
Life finds a way
Swarna Latha, seen with her husband and two children, scaled the wall of disability with the help of her family and her own determination
“On October 26, 2009, a day prior to my sixth wedding anniversary, I fainted due to an unexplained sudden fever. This was a kind of fever I had never experienced in my life, I thought I was close to death. I was weeping continually looking at my two-year old son,” says Swarna Latha from Coimbatore. Her condition was beyond the comprehension of local doctors, and she was shifted to a hospital. She was finally diagnosed with Primary Progressive Multiple Sclerosis (PPMS). She learnt that her condition may continue to get worse and was completely shattered. Fortunately, her husband, Guru, was a pillar of support. “The first time I had to hold a walking stick, he counselled me and pointed out that people use an aid like spectacles when they can’t see properly; similarly, I just needed to use one for walking. With this understanding, transitioning from a walking stick to a rollator was a much easier decision for me,” she says.
Quite naturally, the grave illness steeped her in self-pity for a while, but with tremendous will power, she crested out of it eventually, and started leading as normal a life as she could. She wanted to have another child and a girl, Gaana, was born in 2010, despite all the health challenges she underwent.
As allopathy had no solution, she kept looking for alternative therapies and went to Kerala for ayurvedic treatment in 2012.
While in the hospital, she was drawn to spirituality and read the works of Eckhart Tolle, Paulo Coelho, Louise Hay, Anita Moorjani, Sri M, and many more. She practiced meditation, yoga, pranayama, and Sudarshan Kriya, all amidst nature, on the banks of the river Periyar. The book, The Alchemist, written by Paulo Coelho, was an eye-opener to her. “As I was reading it, things around me started proving his words that, “If you really want something, the whole universe will conspire to help you achieve it”.
She understood that physical disability was just a barrier. “If you want to really achieve something, it’s not the body that actually executes the work but the mind,” she says.
Along with her husband and his power to motivate her, she understood that although things were not easy, they were not impossible, either. When she returned home, she was a different personality, looking at life with a different perspective.
While she was in hospital, she realised that she should make the optimum utilisation of all her talents. She knew her limitations but at the same time she also had many skills. She was good at teaching, singing, arts and crafts, creativity, communication skills, planning and execution. Her husband, Guru, possessed excellent leadership qualities, negotiation, team management and problem-solving skills.
“It was a realization for us that all the money in the world would not cure me of this disease. So it made sense to utilise all our skills to make a difference to society,” she says. She founded Swarga in 2014. Swarga focusses on promoting cycling for a cause, as well as arts, literature and sports among those affected by neurological illness. The name itself comes from SWARna, GAgan(son), GAana (daughter), and Guru. “It means Heaven and signifies that together as a family, we want to create a small heaven for people around us. We designed the objectives of Swarga around our skill sets and to ensure that our responsibilities towards our children, family and society are fulfilled.”
She says, “Since I had limited physical energy, I had to use it wisely. I saved all my physical energy to focus on Swarga. Guru, my husband, fulfilled other responsibilities towards our children and home, and even assisted me with Swarga’s activities when required,” she says.
After a while, she pauses and says, “I have had many dreams, but above all I wanted to be a good human being. With Swarga, every dream of mine has come true. I can vouch for the fact that I am leading a fulfilling life.”
The last year has been remarkably significant for her. Her son Gagan became a state level swimming champion. She was in the hospital then. Still, it was a milestone moment for her to realise that he had become completely independent and an achiever.
Other achievements flooded the year. The picture she took of a children’s marathon race appeared with event coverage in the Hindu Metroplus front page. She recorded the Tour de Kerala song at Cochin as the female lead, she was featured in two videos, Happy Coimbatore, and another one to create awareness about transgenders. She also wrote many short stories and scripts for the puppet shows that she performs to create awareness about social issues like environment, child abuse and others. She even won a gold at the Kovai mini marathon to mark the World Disability Day, and a short film, Life Finds a Way made on her life was launched in Coimbatore and screened in Pune and Bangalore too on World Multiple Sclerosis day this year. Further, on International Women’s Day, she was honoured with a Woman Achiever’s Award for extraordinary service by an organisation, Laramp Momo, in Coimbatore.
At the end of our talk, she gives me wonderful food for thought with her words, “There are answers for all your prayers, and the solution to all your problems lies within yourself.”
The right vision
“Everybody faces challenges. I really do not wish to talk about this aspect at all. I did what I could to the maximum extent, like everybody else does,” said George Abraham when I asked him how he had overcame so many challenges in life. I had read earlier about his remarkable life, and heard his story spellbound. George was born in London and at the age of 10 months, suffered from meningitis which caused permanent damage to his optic nerve and retina, thus making him visually impaired. When he was two, his family relocated to India. George’s parents took a decision that would shape his future. They decided to send him to a mainstream school in spite of his disability. George studied with his school friends. His mother read out the texts from school books and his father assisted him with mathematics. He even took part in all school activities. In fact, he won the debate competition in Standard VI, and the 100-metre running sprint in Standard X. His independent spirit, nurtured by his supportive parents, flowered.
When he travelled alone to Delhi for his graduation, his mother was a little concerned as he was travelling alone for the first time. She approached a nun in the same compartment to tell her to take care of him. However, his father, noticing that George was resisting her attempt to mollycoddle him, immediately changed the context by telling the nun to contact George if she needed any kind of help!
After George completed his graduation and post graduation in Delhi, he returned to Kerala. But determined to take charge of his life, he came back to Delhi. He knew he had good communication skills and was quite creative. This, coupled with the glamour quotient of the advertising industry, tempted him to take a shot at a job there. After attending many interviews, he was selected by Advertising and Sales Promotion Company (ASP), a small advertising agency in Delhi. He was happy he was accepted for his credentials, and not as a favour. He did his best to prove his worth and, indeed, soon stood out.
Around the same time, love unfolded in his life. He knew Rupa in childhood but had lost touch with her. A friend introduced him to her in the local church. They started meeting often. Rupa was convinced she had found a soul-mate in him, and convinced her parents even before telling George, that she wished to marry only him. Her parents went with a formal proposal to George’s parents, and their love-cum-arranged marriage took place. They now have two children, and enjoy a happy family life.
In 1989, Rupa decided to do something for the blind community. For this, they visited a school for the blind in New Delhi. Here, it struck George that the children there were made to feel inferior, handicapped, and as if they were bereft of opportunities. George realised that the blind needed opportunity, not sympathy. In a daring and extremely commendable move, he decided to quit his job and dedicate his life to working with the visually impaired. He did get some support from social organisations, but also took up freelance assignments to augment his income. Rupa took up a job.
Having found his life’s purpose, he kept thinking about what he could do to further improve the lot of the blind. A visit to Dehradun’s National Institute for the Visually Handicapped exposed him to the sight of blind boys playing cricket.
Abraham realised that cricket could be used as an effective tool to develop qualities of leadership, discipline, ambition, confidence, team work and a competitive spirit. He also felt that this would enable society to see a non-stereotypical image of blind people as positive and action-oriented.
After a lot of networking, by December 1990, the inaugural Tata Steel Cricket Tournament for the Blind was held. He organised many more such events, and helped set up the World Blind Cricket Council (WBCC) in 1996. Under his leadership, the inaugural Blind Cricket World Cup was held in New Delhi in November 1998. Now that cricket for the visually impaired is happening regularly in India, he no longer plays an active role there.
In 2002, George established the SCORE Foundation, a non-profit organisation which launched Project Eyeway, and its website www.eyeway.org, as a single- stop knowledge resource for people living with blindness and low vision. He also gives motivational speeches to many organisations.
His dream is to reach out to every home in the country with information related to life with blindness. The object is to share information that is informative, inspirational and empowering.
Currently, he is trying to bring together a group of organisations who would commit to providing guidance, information and legal aid to people combatting discrimination. He is also anxious to improve the skill sets of people with visual impairment to make them completely productive in all areas. Interacting with George made me understand how life indeed is all about perception. Helen Keller, another stalwart, had said, “The only thing worse than being blind is having sight but no vision.” George believes in the same thing and has even conceived a programme “Nazar ya nazariya (lack of sight or lack of vision)” in Doordharshan in 2013, showcasing people who have done remarkable things despite their visual impairment. He has won many awards, including being featured in People of the Year in the Limca Book of Awards in 2007. He, however, maintains that his chief success is doing something he loves and having made a difference to people’s mindsets. After speaking to him, I certainly felt one can achieve anything in life with determination and hard work. Hence, in a sense, my ‘nazariya’ or mindset too has expanded.
Learning about these pioneers made me feel there is truly nothing one cannot handle. We need to remember if we are given challenges, we are also given the strength to overcome them. The principles remain the same for everyone. We need to accept the current situation, be grateful for what we can do, and work on life with sincerity and passion. When we take one step towards life, life takes ten steps towards us. Call it grace, the law of attraction, or the support of the cosmos, it is available to all of us. This is indeed the law of life. Let us harness it.
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