Chandima Rajapatirana simply adores chocolate. Though his mother Anoja had no doubt guessed this already, it took 18 years for Chandima to tell her himself. Born severely autistic, Chandima is mute - a condition called apraxia compromises his control over his body, making it exceedingly difficult for him to communicate. When he and his family finally discovered Facilitated Communication (FC) it was nothing less than a revelation. FC – a simple communication system designed for non-verbal people – allowed Chandima to “talk” to his family for the first time. Today, he is an activist, author and poet, and 17 years from the day he found his voice, he is determined to help others like him find theirs.
The E.A.S.E foundation (Educate, Advocate, Support, Empower) is the realisation of Chandima’s most cherished ambition. Explaining that he wished to “uplift” Sri Lankans living with disabilities, Chandima says that helping them communicate with society at large lies at the very heart of the foundation’s vision. Having lived in the U.S for nearly 31 years, Anoja and Chandima have attended as well as conducted many training workshops, and conferences for people with disabilities. Now they hope that their unique combination of expertise and personal experience can be put to use in Sri Lanka.
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| Chandima with Anoja: Reaching out to others. |
“Being mute is a fate I would not wish on my enemies...being able to hold a conversation with another human is what makes life worth living,” says Chandima. As in many countries, people with disabilities are often marginalised in our society.
For a non-verbal person, a severe disability can limit their lives dramatically, making it impossible for them to study, work or even express simple preferences to their families; and for all that their inability to communicate is no reflection on their intelligence, many of these children will never be sent to school or allowed to mix freely in society.
“I am a person with a disability, and I’d like to help others lead stimulating, productive lives like mine, and they could use a little help to do that,” says Chandima. He and Anoja have already begun working with children in various stages of speech impediment. Though FC uses the alphabet to help children, Anoja is starting with simple things like objects. As they progress children can identify said objects and learn to choose, between a glass of water and glass of juice. Helping a child communicate his or her needs – whether he or she wants something to drink or eat, or whether someone has hurt him or her, or he or she is feeling ill – is one of the most basic goals of the process.
At the very least, teaching children to communicate lessens the sense of helpless frustration and isolation that fuel difficult behaviour like temper tantrums or self harming acts, says Carol Perera, one of the Trustees of the foundation. Carol runs the Open Education Institution in Colombo and has a great deal of experience working with autistic children. Like Anoja, Carol too believes in giving her students something to occupy their often active and agile minds with.
Anoja and Chandima are currently working with some of Carol’s pupils, as well as with students of the Chitra Lane School. As they progress, Anoja will begin teaching them the alphabet. Eventually her students will be able to communicate by spelling out words, letter by letter, on a computer, alphabet board or speech output device. One student has even taken to using an organizer. At this stage, a facilitator helps the user by providing physical and psychological support as needed. The alphabet board is particularly effective, and includes simple words like ‘yes,’ ‘no,’ and ‘thirsty’ to which a student can point. Anoja and Chandima have already created a Sinhala alphabet board, and though it is necessarily more complex than its English equivalent, they are constantly fine tuning it. “The goal is always that they learn how to type independently,” says Anoja. While this is not always possible and many FC users will always need a facilitator to speak, it does not lessen the value of what they have to say.
“Communication is important to all of us – it is how we learn to control our environment. And the child needs to feel that he or she can make choices and that they will be honoured,” says Anoja.
For Chandima and his family, it has been a long and often difficult road, and they know better than anyone the challenge learning FC can pose. For both parent and child, the process takes them well out of their comfort zone, forcing them to approach habits that have become entrenched over many years. Parents who have been forced by necessity to make every choice for their children must learn to shift gear. “I tell the parents that this is really hard work for the children too.”
But Anoja and Chandima are also testament to the joy and empowerment that open communication can bestow. Chandini Tilakaratna, a trustee and close relative, has witnessed Chandima’s progress first hand. She remembers that he and his family had a difficult time when he was younger. “Now he is so much calmer and we discovered that he has such a wonderful sense of humour. It was just amazing meeting him,” she says. This is perhaps one of the most wonderful aspects of FC – for the first time friends and family are given the chance to actually know the child. Not all of them will be poets, or mathematical geniuses (like one of Anoja’s other pupils) but they are all people waiting to be discovered, with their own unique personalities and set of capabilities, says Jeyanthi Liyanage, who with her husband Sumana Liyanage is a trustee and close family friend of the Rajapatiranas.
E.A.S.E’s vision does not end here. They have already begun – through presentations and lectures in universities and schools here and abroad – to change attitudes and mobilise society at large. They also intend to be instrumental in creating productive professional and personal opportunities for people with disabilities.
With characteristic flair, Chandima hopes to open a coffee shop “where people with and without disabilities will work and socialise together.” We are not so different under the skin, he maintains, “if you were not born with a disability, you could get one, through sickness, through an accident, or just by living long enough.”
They are still limited, however, by the fact that Anoja and Chandima are currently the only practitioners of FC locally. But the foundation is in the process of recruiting teachers and welcomes volunteers. Backed by their trustees and several advisors who are professionals with experience in social service, the foundation is offering all its services free of charge. Teachers and those wishing to know more can contact Anoja and Chandima at easefoundation@gmail.com |
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