Day 3: Action for Autism
The Open Door School is appropriately named; all day the bright red doors of the large four-story brick building were propped wide open, with the warm gentle scent of Delhi’s breeze drifting through the corridors. In America, where I have visited many schools for children with Autism, security is always at a premium, and the doors leading outside are always shut to prevent students from eloping. Although the property is gated, there is an openness to the small compound, with grassy lawns and exotic flowers dangling on vines from above. If you really stop to smell the flowers (and I did, in the garden), a world of perfumed points serenity opens our mind, and fills you with a sense of enabling tranquility, like jasmine tea on a cold winter night. It is a remarkable place.
Delhi, from what little I have seen of it through the rose colored glasses of my western mind, is very much like a city in many developing countries; new glass super-over-styled architecture (which reminds of buildings I have seen in Seattle) rise majestically next to decay and rubble while vendors work out of dark cinderblock garages, offering their wares; unkempt and destitute Indian children rap on car windows, signing the international sign for food (hand to mouth), begging for scraps, while sophisticated westerners and upwardly mobile Indian professionals sit in air conditioned cars with full time drivers, mastering the art of civil inattention. In the midst of the chaos, the poverty, the rubble, the noisy turmoil, the smoky haze, and this landscape of National Geographic images, rests a jewel so bright, a beacon of infused hope and profound progress, with bright red doors that are always open. India is known for its precious gems, for the vibrant color and depth of emotion these gems inspire. The Open Door School at the Action for Autism center, with its ruby red doors and sapphire soul, is such a gem.
The school is a magical place, where children and parents come to be educated, and to educate; they bring structure and opportunity and competence, and most importantly, outcomes, to children who would never be able to rise through the normally occurring social chaos that builds the context and fabric of their everyday lives. It is a strange juxtaposition, this place of special education splendor in a culture that places a highly differentiated value on an individual life (differentiated from western ideals, that is to say). The tapestry of everyday life against which behavior becomes meaningful here is woven by those who can fend for themselves – on the streets it is about crafting survival from day to day; at The Open Door School the tapestry is woven by artisans of extraordinary dedication, teachers who relentlessly pursue social survival for their students by educating themselves and seeking knowledge to share. It is infectious, almost viral. And they are so busy, so driven, so uncompromising in their pursuit and that if you ask them what is most important to them, they will tell you “to keep the school going, to teach my student a new thing today, to make it work another day so that one day there will be schools like this everywhere and we will not have to fight for what every child deserves”.
It has not always been like this. This incarnation of The Open Door School is only two years old; in its previous life the entire school was the size of the current reception area, where mothers now come to hang out in the morning and socialize, welcoming “new” families, and swapping tips on how to arrange your home for your autistic child. Areas of the school are still under construction, unfinished in that classical “developing” country sense, but it is home, and it feels right, and good. It is more than its Director probably ever dreamed of, but now it is the foundation of a vision even larger than a single person’s dream…it is the National Centre for Autism in India. And the story of this center, Action for Autism, or AFA as it is known and referred to by its inhabitants, is in fact the story of one woman’s fight to educate her son.
The story of Merry Barua, and her journey as a mother seeking services for her son with autism, is so compelling it could easily be a movie. Once she was alone, desperate for information, handcuffed by the lack of services, unsupported and marginalized. Today, Merry is surrounded by a team of strong teachers who are more than friends, they are family; although she constantly seeks information, now centers of education excellence seek her out — the contacts just keep rolling in; and while she was once paralyzed by the lack of services, today she is the focal point of offering them. I am humbled, professionally, and honored, personally, to be included in the future of Merry’s efforts. She is shaping the vision plan, the very social policy for an entire nation; she is supplying the feeling and framing rules for interpreting Autism in India.
I cannot help but feel a deep personal connection, parent to parent - there is a special bond developing, and I hope she feels it, too. We are warriors in a battle for our children – generals in a war that has no end in sight, fighting a battle against the most shadowy and elusive of enemies (Autism) — but we are committed and dedicated to enabling our troops (our teachers) and saving the lives of the innocents (our children). We are overcoming and seizing ground one step at a time, creating outcomes one child at a time. I know one thing for sure…I am making friendships that will last at least this lifetime, and maybe a few more. I came to India to give knowledge, and share ideas – now, I am being presented with the greatest gift humanity can bestow…the validation that I am not alone. It is how she felt when she came to Heartspring last year to receive the Creativity and Innovation Award for Special Education. What comes around goes around, I guess. Strange…in the land of Karma, perhaps it was meant to be that we meet and join forces. When I am around her I am in the presence of applied inspiration in action – action for autism — and it is infectious. How do you thank someone for giving meaning to your life? I wonder what tomorrow will bring…
Chris