Some schools are about much more than just providing education. While working with Nayi Disha Resource Centre for this Fellowship, I visited one such…
What does a ‘better‘ life look like for you? A higher posting? A more comfortable lifestyle? For persons with severe / profound Intellectual and Developmental Disabilities (IDDs) like Autism and Down’s Syndrome, the benchmark for better may seem a lot more rudimentary. Doing better tomorrow could mean being able to make eye-contact or say “I want water”. It may just be getting by with dignity.
Meet Sandnya Sanwardhan School — a 26 year old project in dignity for persons with severe / profound disabilities.
Dignity In Movement
In Butibori on the outskirts of Nagpur sits an acre-large gated campus, greener than anything around in sight. India’s first wheelchair-friendly hydraulic bus pulls up to the entrance. A student rolls out and onto the path, not once having to get up from her wheelchair. To board a bus six months, ago, the young woman would’ve — to the chagrin of her parents — had to be lifted from her wheelchair by two male staff and buckled into a regular seat, then lifted again when she needed to alight.
“How is that acceptable?”
“Our students should be able to travel with dignity, that was our decade-old dream…”Trustee Navin Deshpande tells me in Marathi.
When you enter the school, it may take you a second to find the bathroom doors; they’re hidden behind opaque curtains. A teacher holds the curtain in place and keeps the door open, while her student is visiting inside. The little boy is non-verbal and doesn’t communicate much at all. Locking the door is not an option. He may not find this curtain at the other toilets he visits. Perhaps some day, privacy at public toilets will not be something he has to worry about. Maybe that is a part of his better life.
Dignity In Independence
- Know what you want to buy. What do you need? Is a particular brand too expensive? Do you have a preference for scent?
- Take all you need. Have you carried enough money? Do you remember your emergency contact number? Do you have your seizure ID card?*
- Travel to the merchant. Can you walk all the way? What will you tell the rickshawala? Is the road level enough for your wheelchair?
- Communicate your purchase needs. Can you say “I want ___”? Can you read the price on the packaging? How will you ask for your change back?
- Come back home. Can you wrap your hand around the bag’s handle? Do you remember your home address? Can you put the key in the door to let yourself in?
*For children with epilepsy, it helps to carry an easy-to-read guide that strangers can refer to in case of a seizure. You can view one here.
The process of buying something for yourself may seem instinctive to neuro-typicals. But when you break down the steps, it involves a series of tasks, each completed only with a different abilities that we but assume as given. For many PWDs, these abilities cannot be assumed as given. These skills must be learned and practiced.
The Mock Shop Class at Sandnya does just that. Rows of racks stand against a wall, packed with Ponds, Colgate, and Harpic. Teachers break down the process of selecting an item, reading the price, paying, and counting change into bite-sized instructions, working on a single increment for perhaps weeks. Can you subtract ₹5 from ₹10? For some persons with IDDs, learning to do so means being one step closer to better, closer to dignified independent living.
Dignity & Merriment
Sandnya hosts annual sleepovers for students and their mothers. 60-odd women and children spend the night at the school, playing games, laughing, and forgetting for a few hours that there is a world outside that isn’t always this welcoming. “I don’t even feel this way at my maika”, said one of the mothers. Whenever I visit (neuro-typicals’) houses, “I’m told you can come over as long as you can handle your child. Hamein koi problem nahin, bas tum apne bachche ko sambhaalo.”
Owing to lack of acceptance, what should be wholesome bonding time can turn into hours of stress and embarrassment. “But (at the school), everyone knows exactly what it is to be a special mother. Kisi ko apne bachcho ko “sambhaalne” ki zaroorat nahin.” Among others like themselves, there is little embarrassment. Mothers can breathe easy and children can enjoy the party rather than just be ‘managed’ at it.
Sandnya also operates a Parent Relief Centre (PRC). Here, caregivers may rest assured in leaving their children in the care of their teachers for extended periods of time. During my visit to Sandnya, I listened as a mother declared to a room of parents her boundless gratitude for the PRC.
“Both my sons are on the (autism) spectrum. They were at Sandyna for all of my 40-day Hajj trip. I have never been more carefree. I knew they were home. They knew they were home.”
So what is the better life for the disability community? Perhaps where institutions like Sandnya that work towards the dignified life will not be few and far between.