The EASE Foundation’s mission is to Educate, Advocate, Support and Empower (E.A.S.E.) families and individuals dealing with disabilities, especially autism. A couple of hours with these teachers, students and families is enough to make it abundantly clear that this humble organization has touched lives in a profound way, liberating people in the truest sense of the word, by giving them the tools and the confidence to live productive and fulfilling lives. This is no small achievement in a society that still struggles to fully accept and integrate individuals with diverse abilities into everyday life. Despite these challenges, looking around me I see a room full of good people with many talents, doing great things.
I am the first visitor of the morning and I take my seat opposite Chandima Rajapatirana and his mother Anoja. The living room doubles as the main workspace and is scattered with posters, toys and colorful stationary. As Co-Founders and Joint Presidents of EASE, their mission over the past several decades has been a deeply personal one. This is because Chandima was diagnosed with autism at the age of 4. That was the moment when Anoja’s work in the field truly began.
Yet, at the expense of making an assertion that may, on some level, rest in my own prejudice, it is Chandima who stands out as the hero. Without any intention of sounding condescending, his involvement in every aspect of EASE, from teacher training to marketing to PR has been a driving force, and is an inspiration to witness first hand. More than that, his active role makes him the true face of the Foundation, a testament to what individuals with autism can achieve in a world that we often, wrongly, consider ours alone.
Chandima and his family moved to the United States when he was just over one year old. When he was diagnosed with autism three years later, Anoja took it upon herself to give her son a normal life. This wasn’t easy in the 1970s (nor is it now) when even the United States did not have too many options for support. A self-professed “obsessive mother”, Anoja went about working with her son, no less than 25,000 flashcards in tow. She was determined to prove to the world what she already knew; that Chandima was fully aware of the world around him and that he possessed as good an intellect as any of his ‘normal’ peers. Yet, being mute, his inability to communicate became the outside world’s failure to see his value and, in some cases, even afford him respect. In his book “Traveler’s Tales”, Chandima describes himself as “a traveler ebulliently engaged on a unique journey between worlds… between the quirky world of autism that I inhabit and the wearying world of ‘normal’ that I would like to explore”. He continues, “Being mute is like having your brain gouged out. Autism/apraxia took away my voice, and a world that equates muteness with stupidity took everything else”.
In 1991, Facilitated Communication Training (FCT) offered an escape. It is FCT that helps us conduct this interview. I ask my questions as I usually would and, when he wishes to speak, Chandima uses his index finger to push keys on his ipad. In some cases he uses a small notebook that operates on a similar concept. It was with this kind of assistance that Chandima was soon taking college courses, traveling the United States as a speaker at conferences and workshops, and featuring in a fulllength documentary (“Wretches and Jabberers”) directed by academy award winning director Gerardine Wurzburg. Soon, he was well on the way to discovering his immense talents as a poet and a writer. Even though he was reluctant to leave Syracuse, and still speaks fondly of his time there, Anoja brokered a deal with her son to return to Sri Lanka in 2006. The caveat was that they work together to form a Foundation that would bring a different view and better understanding of autism to Sri Lanka.
EASE Foundation was started in 2007 with both founders working from their own home. In 2010, a small round of fund raising with friends and family allowed the Foundation to rent out their first location, with mother and son on the front lines, working through their own challenges while committing themselves to work for others whose needs they knew only too well.
The EASE Foundation is built on two key principles. First and foremost is the notion that one must always “Presume Competence” when working alongside a person with a disability, the second principle stresses the “The Importance of Communication”. If the first pillar presumes and recognizes the capabilities of the individual, then the second allows him to access and unlock these capacities, giving them life and nourishing his potential. Anoja explains this quite simply, “ I have found that if you treat people like sentient beings, the brain works in mysterious ways and incredible progress is possible. You can see so much collateral improvement if you just give the brain something to think about”. She goes on to describe a number of success stories, young people that came in “like whirlwinds, spinning like tops” and who, in just a few months, have learned basic communication, interaction and the art of happiness. “We don’t cure anything”, says Anoja, “but we never give up on the child”.
A few stories in, Chandima chimes in on his ipad – “I asked you to talk, I did not tell you to monopolize”, he says, smiling with us as the words start to make sense on his screen. “Simply assuming competence lets us teach age appropriate material and still make progress”, he says, transitioning effortlessly from son to President and Co-Founder.
With the assistance of a few dedicated staff, trained by them, Chandima and Anoja work daily with autistic/disabled individuals and their families. They see ability, not disability, in whatever they do. The walls around me are filled with artwork which, Anoja explains, are all the work of students who use sponges, stencils and other implements that allow them to express themselves easily. A young man wearing a bright orange shirt and an even brighter smile comes in through the front door for his morning session, introduces himself and sings us a song. Like this, each individual receives 2 hours a week of one-on-one interaction and plenty of homework. Activities include yoga, art, theatre and lots of parties. Parent training is an integral part of the process. Parents also receive special sessions where they meet with staff to express their concerns and challenges.
As you might well expect, the work isn’t always easy. “We often take one step forward and three steps back”, says Anoja. In this place, patience is both a virtue and a necessity. I also learn that helping families (and the broader community) understand autism/disability and accept it in a productive way is very difficult. “Even in the US, autism is not fully understood” says Chandima. Around the world, these individuals are shunned and discriminated against because of deeply entrenched and wildly misguided views on autism and how autistic individuals should be treated.
I was able to speak briefly with a parent who I noticed sweeping quietly in the corner of the living room. This work might be a part of what a corporate might coldly call its operational model but here, it has no name. The EASE Foundation does not accept money from any of its beneficiaries. Rather, parents and families pay back in kind by helping out in whatever way they can. This parent, takes a moment away from her self-assigned chores to tell me how amazed she is with her daughters own progress. Local community meeting spots that often shunned her and her daughter are now completely accepting and even enthusiastic about spending time. “I love this place like I love my own family”, she says.
Chandima must surely be an inspiration to many but I ask what inspires him.
“Can I say my mum?” he asks as she cringes. “Out of all the difficult cases we have worked with, I was worse than all of them put together. My bitter life was made bearable by her, my mum. It is the truth. People with autism/disabilities are a part of my tribe”, he continues, “I have been so fortunate to have a positive life experience because of my mother and I want to help those who have not had a life as fortunate as mine.”
HOW CAN YOU HELP
The EASE Foundation survives purely on hard-work, commitment and the goodwill of a few well-wishers. To truly realize their vision, Anoja and Chandima would love to be able to move into a building of their own. This would allow them to create the type of school that would help them to work with more students and do so in a bigger and better way. The vision does not end there. Chandima’s dream is to start his own coffee shop, a mixed community of all people that can live and work together in harmony and with respect. He says, “Our first step is to teach people that we, disabled people, can be good company, and that we can be employed in integrated, inclusive environments. Eating marvelous meals, sipping a refreshing cup, listening to wonderful poetry or music, surrounded by beautiful paintings we will relax, and learn to build an integrated community”.
We encourage you to learn more about this wonderful organization and help out wherever you can.
You can find out more
by visiting their website (www.easesrilanka.org),
contacting the foundation at email@example.com
or calling Anoja Rajapatirana directly on 0773409148.