Impact

Driven by compassion, these two women from Rajkot are crafting lives of children with intellectual disability

“No two trees are identical. Trees are not even symmetrical by any standards. Yet they’re beautiful, right?,” the lady in the purple Punjabi suit patiently puts forth her point.

I shift uneasily in the chair, never having thought of the obvious metaphor earlier. Her colleague – a lady in a simple blue salwaar kameez – smiles knowingly. Apparently they’ve explained this over and over again to many people earlier. While not particularly elevating, the thought that I have a company in being insensitive is a little soothing.

The lady in purple elaborates,

“I feel it’s the asymmetry that brings beauty. It’s the same with differently-abled children too. If they don’t – or can’t – measure upto the standards that the majority of the human race has set up, it doesn’t make them any less beautiful.”

I am with Jagruti Ganatra and Neha Thakar, founders of Setu (Bridge), a workshop cum hobby-center for children with intellectual disabilities. No fees are charged for the children, and Setu (read these two ladies) also bears the daily transportation expense of those children whose parents can’t bear that.  

We are at Jagruti’s home. We meet at 10:10 pm. It’s a tad late to ‘interview’ them, but that’s the only time of the day I can meet both of them together to talk.

* * *

Earlier in the evening, I had the opportunity to witness them in action with the children. Setu operates from two rooms that Jain Balashram has allotted them. The differently-abled children start pouring in by 5:15 pm. For the next 2 hours, they have a gala time, laughing, decorating diyas, coloring garbaas (small, earthern pots used during the Navratri festival), making rakhis, and in general doing things one’d think impossible for such children.

When I had called up Jagruti with a request that I wanted to visit Setu, she had said, “You can hang around, but we won’t be able to talk to you there; we’d be having our hands full.” And when I saw the two, with six volunteers, 25 children, some toys and devices, the diyas, garbaas and rakhi, the phrase ‘hands full’ became as much literal as figurative.

There was another reason they were not keen to spare time to talk to me while at Setu: a few children have conditions that require constant attention. For instance, during most of my time at Setu, Neha sat, walked and worked with a boy of around 9 by her side. The boy, Neha explained later, was quite possessive about Neha and was prone to bang his own head against the nearest object the moment Neha stopped attending him.

 

“It is his way of saying, ‘I love you didi, please love me back’”, Neha elaborates.

While at Setu, that’s the only line I could get out from her.

* * *

Jagruti works with V D Parekh Blind School, while Neha works with a local self-financed college, taking care of the general admin. Both are full-time jobs, in case you’re wondering.

Some years back, the blind school approached a college professor for help in choreographing garba for the blind girls. The professor, in turn, asked Neha to take up the challenge.

“I am a garba choreographer, but I wasn’t sure how I’d work with blind girls. All the same, I took it up.” Neha explains. And that is where the two met.

But nothing remotely similar to Setu was on their radars. One day, they were sitting with Mrs. Kruti Vasavada, who also works with such children, when Vasavada wondered aloud, “Wouldn’t it be great if there were a hobby-centre for children with intellectual disability? How I wish we could build a bridge between their world and ours?”

The two nodded, stared at each other, and without further thought, said, “Ok. We’ll do that.” And that was how Setu was born. Almost on a whim.

Neither of the two are even close to being millionaires themselves, so funds was (and is) an issue. They pooled in some of their savings, and approached a small school near the airport to give them a room. The school agreed and they started out.

“It was 15 January 2013, and we started with 3 children,” recalls Jagruti.

And here’s the surprising part. Neither has any formal training in taking care of such children. Jagruti had a subject on children with intellectual disability while undergoing her B.Ed. for the Visually Impaired, but the subject ‘wasn’t much’. Neha had some hands–on experience since there is a special adult in her extended family. That was about it.

That meant that even when the first kid walked in, these two were figuring out what would they do.

“But we kept things simple and told ourselves – give love, share happiness and keep thinking,” Jagruti continues.

Of course the parents were wary, so these two invited the parents to sit by the children. By the end of the first week, the parents grew confident and stopped staying back.

“And we got instant feedback too,” Neha beams, “By the second week, sharp at 5 pm, children would start prodding and reminding their parents they wanted to reach Setu. We knew we were on something good!”

Fifteen days into Setu, they participated in the Kuch Aam Logo ke Khaas Kaam (roughly translated as ‘Special Contributions by Commoners’) program by the private radio channel Red FM.

“We wanted to publicly reaffirm our mission to build a great place for these special children – winning was secondary.” Neha explains.

The listeners voted generously for them. Setu, not surprisingly, won the Bade Dilwala award, and I don’t think there could been a more apt name.

Word-of-mouth quickly spread the news about their activity and parents started approaching them.

“We had no plans, except that we were insanely passionate about the whole thing. Love, help and train the children – that’s all we had in mind.”

“And since the day we set up Setu, we haven’t encountered a single problem that love, common sense and help from good people can’t solve,” Jagruti breaks into a soft laugh, “Add the Almighty to the list and it’s a fail-proof panacea.

Currently, Setu works with 25 children. All the 25 children have intellectual disability: some have CP (Cerebral Palsy), some have Down’s syndrome, some are autistic. Almost all of them have major problems with speech (a couple of them have zero speech).

It doesn’t immediately occur to me how the varied abilities of the children exponentially complicate the duo’s task. A hyper kid, for instance, needs to be restrained a little, while a child with intellectual disability could need a lot of push and encouragement before s/he’d try anything.

READ  "I'm not lesser than anyone!"

The varied abilities of the children exponentially complicate the duo’s task.

But both play it down.

“Oh, once you’ve understood their world it’s simple.” says Jagruti, with a glint in her eyes.

But having witnessed their session with the children, I know better.

The only goal, she continues, was to build a place where these children would be happy. A place where they’d eagerly, cheerfully come to.

“These children have a delicate, almost fragile mind. They may trust you quickly, but even a slight slip at your end in the early days can push them back into their cocoon.” Neha tells me.

It’s past 11 pm so I ask Neha whether she’ll need to leave. She shakes her head, “My husband and family are so cooperative; it’s ok once in a while.”

(For the record, between the time I left Setu at 7:00 pm and met the two again at 10 pm, the two had returned to their homes, cooked, had dinner with family and finished the domestic chores. All I had done was eat and burp.)

“The best part was Holi was barely three months away when we started out. It was our first experience of having special children celebrate a festival – an experience neither of us will ever forget.” Jagruti reveals with a slight tremor in her voice, “When a mother remarked how handsome her Down’s syndrome-affected son looked with his face smeared with gulal, it was our Eureka moment.”

“We instantly knew celebrations would be the key to joy for these children, since they would never have celebrated festivals the way the other children did,” Neha elaborates, naturally not using the phrase ‘normal children’, because to her all children are equal and normal.

And thus festivals have become a way of life at Setu.

From making the children happy, Setu slowly widened its objective: bring the children closer to the mainstream society.

The children were slowly initiated into craft. They started out by decorating garbaas that were meant to be sold. Diffidently, Setu bought 60 plain garbaas which these children would decorate.

“We were not sure how many would be actually sold,” confesses Neha, “But they were a sell-out! In fact, the next lot was pre–booked, and ultimately we ended up selling around 190 garbaas in the very first season!”

One can only imagine what sort of things these children must have overcome doing this –  after all, most tactile activities like holding, and folding are a challenge to the children here, so any activity that required precision – like gluing a bead – must have been torturous.

And they again pushed things a little further. “Why not have these children sell it themselves – directly interacting with buyers and collecting cash and returning change?” The idea was to have this children understand the world outside their microcosm by exploring concepts like money, business and profit and interacting with total strangers.  

Sounds terribly exciting when I write it now. Must have been a hell of a job when they were doing it then.

“So what have been the lows?” I wonder as my pessimistic underbelly raises its head.

“None yet,” Jagruti quips instantly, ambushing me.

Upon my insistence, she says,

“Honestly, there have been no lows, but yes, every day brings its own challenges. Like when we take out these children to monthly picnics, minor issues crop up. But angels kept appearing out of nowhere, and things get tidied out faster and better than we expect.

Even after recognition from the Government of Gujarat, finance, at best, remains strained. Members of Rajkot Rotary provide some funds; once in a while a donor turns up from nowhere (one of their fondest memories is how a friend brought along a donor who in less than four minutes handed them 30k and left), but often they are precariously poised.

When I ask if they are considering registering Setu as a trust, Jagruti tells me candidly, “We are yet not sure. There are some great things about being a trust (corporates donate to registered trusts far more easily than they do to informal groups like Setu), but we have not fully understood if there might be downsides for groups of our size.”

“And even otherwise, people have been going out of their way to help us.”

Like how a group of the employees of Rajkot Post Office and their family members instantly agreed to sponsor the Navratri festivals of these children.

Like how a visit by Beenaben and Vikrambhai Sanghani, a Jain businessman, led to the trustees of Jain Balashram immediately offering them two rooms for their activities.

Like how Khodubha Jadeja, the owner a highway hotel, declined to charge them a single penny when we took these children for a picnic there.

Like how Kiritbhai, editor of the eveninger Akila, took upon himself to spread the word about Setu.

Like how Lijjat Papad (the company where Neha’s husband works) offered their buses to pick up and drop the children to highway restaurants” Jagruti recounts with a sense of gratitude.

“So, what’s the next goal?” I ask.

They momentarily look at each other and almost say in unison,

“You may not believe this, but we sense a very subtle ‘untouchability’ that these children face. Many people are not very comfortable in presence of these children; at least one ‘social worker’ almost shuddered while at a small program for our children.

“While we don’t blame people, we certainly feel these children need to be understood. Not mercy, mind you, but empathy. That’s our next goal – remove this ‘untouchability’ ”

It’s getting past midnight. None of us want to stop, but I know they have a busy day ahead. I down the last sip of coffee that Jagruti had prepared and get up to leave.

READ  Its almost 2017 and these women from Arunachal are still fighting polygamy and child marriage

Just as I reach the door and turn to thank them again, they gift me a small silk raakhi with a pearl these children had prepared. I sense the raakhi embodies the children we were discussing; the silk thread is their gentle mind, the pearl is probably their heart.

**********************

Note: While this article uses the word ‘children’ for the 25 individuals at Setu, the age group is much wider: age 8 to 40. The term ‘children’ is purposefully used to convey the untouched innocence of their hearts.

Setu can be reached at jdot1972(at)rediffmail.com or 98245 75574 / 99988 54306.

Photo courtesy: Kedar Jani.

 

Do you think you have a story or came across one that could inspire several out there? Email us on contact@chaaipani.com or join us on Facebook and Twitter (@chaaipani). To get inspiring stories on WhatsApp, just drop your number here.

Don’t forget to subscribe to our strictly no-spam e-mail newsletter to brighten up your inbox!

Bringing you independent, solution-oriented and well-researched stories takes us hundreds of hours each month, and years of skill-training that went behind. If our stories have inspired you or helped you in some way, please consider becoming our Supporter.

Mayank Batavia

Mayank is a contributer to Chaaipani. If you have a passion for telling stories, you can also get published. To start writing, log in to your account, and we'll pay you to write happy, inspiring stories.

About the Author

Mayank Batavia

Mayank is a contributer to Chaaipani. If you have a passion for telling stories, you can also get published. To start writing, log in to your account, and we'll pay you to write happy, inspiring stories.

Read more from Mayank