Written By: Dr. C. R. Desai
WE taught Aditi to swim. She brought the roof down till she overcame the fear of water; once she did that, she took to swimming like a fish to water. We started taking her to swimming competitions. It did not matter to her whether it was the first prize or a consolation prize. She just loved to go on stage and be cheered. We then had to celebrate it by taking her out for dinner.
We noticed that she was happy to go to the special school and spend time with her peers. Neelima got a group of parents together and motivated them to take our children out for small walks on the hills around Pune. They loved wearing proper shoes and a cap and carrying a shoulder bag with a water bottle. When the parents dropped them at the designated spot, the children happily waved them goodbye. We walked at their pace. They loved to be with nature. We taught them to identify plants, flowers and birds. The small trek ended with a cup of tea and some snacks. They seemed to love it.
The small steps
The group started growing; almost 30 IDs gathered every Sunday for the trek. We pushed them a bit more each time. They never failed to surprise us. By the end of six months, almost all of them could walk about 15 kilometres on one trip. An adventurer at heart, Neelima, along with a few parents, planned a four-day walkathon. Except our special friends, everyone told Neelima that it was too ambitious. She convinced the parents and got a thumbs-up from all of them.
The first miracle
On November 27, 2003, we walked from Pune to Lonavala, a distance of 64 kilometres in three and a half days. All along the way, we got a rousing welcome from people who had gathered to witness this miracle. Parents had come to pick up their child at Lonavala. They could not believe that their child had done the impossible. For the first time, the parents were proud of their ID child. The children were basking in the glory; they knew that, finally, they had been accepted for what they are. That day Lonavala was wet with tears of joy.
Taking courage from this experience, we organised a Parvati Hill climbing competition. Of course, no one thought we could pull it off, except our special friends. More than two hundred special friends from in and around Pune participated in this event. We took utmost care to see that any special friend who needed special assistance had the support of a volunteer. There were doctors and even an ambulance ready to cover any mishap.
Shocking surprise
We were in for a shock: the special friend who got the first prize did it in just 2.5 minutes!! People who have climbed the Parvati Hill can understand the significance. We have been conducting this activity for 15 years now; participation only kept increasing. This year, we had 57 Autism Spectrum children participating in the event.
India’s first exclusive club
We started the first-ever adventure club for IDs. Our special friends have been to the Himalayas eight times for high-altitude trekking. They’ve done rock climbing, rappelling, zorbing, river crossing, para-gliding and para-sailing.
We got to spend hours and days with thousands of IDs. We lived with them, laughed with them and cried with them. We got to see the world through their eyes. It was a sharp learning curve.
Sharp learning curve
In 2003, we started a day-care centre. We taught the IDs some academics and made them appear for school examinations. Some of them reached the 9th standard; of course, with assistance. Most of them did not understand what they were doing and why they were doing it. We started a sheltered workshop. We made candles, agarbattis, paper lanterns and so on. We sold them as products made by our special friends. We got a popcorn-making machine and literally stood outside theatres to sell them. A kind organisation donated us a semi-automatic press on which we could make rubber products. We bought the raw material and moulds. Our special friends had great difficulty operating it; there were a lot of rejections and waste. The finished product would fetch us 3 paise per piece; today, we get 10 paise for a similar job. After hours of work, we could not even recover the cost of the raw material. Our special friends were blissfully unaware of all this; they had no clue about the concept of money. They worked in the workshop for some time and then got distracted. The special educators and helpers had to spend more time finishing the products to make them sellable.
We were learning a lot. Our special friends would work for a few hours in the workshop, waiting for the dance or singing teacher to come; then they would be full of enthusiasm. We had started the sheltered workshop to prove to the world that our special friends could become productive members of society. The sale of our products could not even pay the salary of one special educator. Our products were bought not because they were good but because they were made by IDs. Barring a few, very few, our special friends could not understand money. They did not understand why they were making these black rubber things and why most of them had to be thrown away—rejected. The workshop would never become self-sustaining unless the special educators and helpers did most of the work. Whom were we fooling other than ourselves?
We asked ourselves some serious questions. Were we imposing our ideas of normalcy on our special friends? Did they understand the concept of dignity of labour? Could our special friends ever earn enough to live by themselves? Are we trying to fix a square peg into a round hole?
By this time, we had worked with thousands of IDs belonging to all categories. We learnt that when we break down the problem to the basics, there are only two types of IDs: those who can live by themselves and those who need assisted living for life. 99% of IDs belong to the latter category. This brought in a lot of clarity. In 2007, we started Navkshitij, our residential rehabilitation centre for intellectually disabled adults (IDs above age 18).
Difference between IDs and the mentally ill
Right at the outset, we were clear that Navkshitij would focus solely on IDs, the intellectually challenged, and not on the mentally ill. In the case of mental illness, the emotions, mood, perceptions and behaviour of a person are affected. These can be treated. A mentally ill person can manage the symptoms and lead a normal independent life. An ID, on the other hand, has problems with basic learning and understanding, processing information, communication, social skills and performing day-to-day activities. The condition is permanent and not curable. At best, an ID can learn life skills to cope with daily living and execute them with help or supervision.
Our learning continued…
Read Previous Blogs:
Rehabilitation and Inclusivity: An Introduction
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