2020 Aug 21
“We do not like the term “differently-abled” We are sure some well-meaning person came up with that term to not hurt our feelings. Other well-meaning persons use it for the same reasons. Most of the disabled people I know do not feel the need for such euphemisms. My son Chammi says if he were differently-abled he would be able to fly!”
Imagine not being able to interact with a world that is constantly whirring with communication.
This was what life was like to Chandima Rajapatirana until the age of 18. Diagnosed with Autism at the age of 4, his journey of fighting the block that stopped him from communicating with the rest of the world was helped along by his mother Anoja’s fierce determination.
“When Chandima (Chammi) was diagnosed as autistic we were living in the USA. On our frequent visits to Sri Lanka, I saw how difficult life was for people/children with disabilities and their families. Chandima was very significantly autistic and as we struggled to help him be the best he could be, I promised myself that if we could help Chammi, I would bring those methods to Sri Lanka,” shared Mrs. Rajapatirana.
“Being able to communicate through spelling on a computer transformed his life. He went on to attend some classes in university, became an internationally recognised advocate for the rights of people with disabilities. His battle cry from the beginning was ‘productive, stimulating lives for people with disabilities’. Where better to do that than in Sri Lanka, our beloved motherland?”
Having defeated the pessimistic notions surrounding his future, Chandima reflects on his past.
“My challenges were many. Being unable to communicate was the worst. We tried other ways of communication but nothing worked. Until a simple but effective method came to me from Australia. The other challenge was dealing with the experts who said I was retarded. Fortunately, my mom got me educated,” said Chandima who believes that all disabled children should get an appropriate education to be able to live fulfilled lives and achieve their dreams.
Thus the E.A.S.E Foundation was born, quite literally easing the lives of disabled individuals through Education, Advocacy, Support and Empowerment. However, Mrs. Rajapatirana remembers the challenges that came with setting up the NGO in 2006, which also happened to be in the midst of the war.
“Chammi got Dengue within weeks of our arrival. Putting together a board of trustees, finding a reputed lawyer to draw up a constitution, establishing a bank account were all challenges. But with a lot of help from family and friends we got it done”.
Mrs. Rajapatirana believes what limits inclusivity in Sri Lanka for disabled people is the notion that disabled persons need to be isolated or hidden away. She advocates for people with disabilities participating in mainstream life.
“While “inclusion” in school seems to be a trend, it is rarely done with the intention of making it a successful experience for all students. Mainstream teachers are rarely trained, rarely welcoming of disabled students in their classrooms. Teachers here are dealing with large numbers of students as well as the exam imperative. So to include a student who may need an extra bit of help is a burden. While there are some amazing teachers many seem to think “what is the point?” when it comes to educating a child with a disability. I have been asked that by a parent too”.
Mrs. Rajapatirana advices to:
- Presume competence.
- Find a way for your child to communicate that goes beyond basic needs.
- Do not believe the pessimistic views that society and even some experts will give you.
- Nourish your child’s brain with interesting age-appropriate education.
- Be positive.
- Know that speech is not the only way to communicate.
- Advocate for your child’s rights.
- Love the child and respect the child.
Apart from the services provided to the children completely free of charge, ‘Jobs for Mums’ is an initiative under the E.A.S.E Foundation to raise awareness on the parents and to provide them with a source of income. A crowdfunding project helped them obtain the funds to buy the sewing machines and the materials required to start off the initiative.
“Many of our families are poor. The mothers can’t work outside the home due to childcare responsibilities. So, we started a small self-employment project. Since reducing single-use plastics is a current trend, we got the moms to make grey cloth bags in various sizes. Currently, they are making masks too”.
The E.A.S.E Foundation has big aspirations for the future of the disabled community in Sri Lanka, even hoping to open a coffee shop where most of the staff would be people with disabilities. But for now, they are looking for a permanent place for their headquarters.
“Our own place that we have named “Hevana” would be built to suit our needs and enable us to deliver a wider range of services. We know that such places exist in many countries. This would be a wonderful place for our two worlds, those with disabilities and those without, to mingle and to learn to respect each other.