Interview with Prakash Bal, Parent and one of the founders of the Sobti Parents Association (India)
Please tell us about the centers at Thane and Andheri. How and when did the centers begin?
The Centre at Thane started on 21st January 2007. After three years Andheri Centre was set up on 15 August 2010. All the members of Sobti Parents Association were part of NAB's Home Visit Programme. The then director of NAB's education department Late Mr. Choudary suggested to us that we should form our own organization to support ourselves instead of depending on NAB. His vision was that after our children grow up they would have to be trained in various skills and that cannot be done by NAB's Home Visit Programme. Hence they need to be sent to some organization. So, why not parents should form their own organization? This was the impetus for some of us to come together and set up the Association in 2004. It took us three more years to find out a place in Thane, as we did not have any resource. A private Trust offered us their place in Thane on nominal rent of Rs1 per year. That is how the Thane Centre started working.
After three years of its functioning, it became clear that the parents staying in western suburbs of Mumbai cannot bring their children to far off place like Thane. So a Centre in western suburbs was the need of the hour. But SOBTI had no additional resources available. Fortunately, Hilton Perkins offered to help financially to set up the Centre and NAB provided us with a place at their Blind Working Women's Hostel in Andheri on nominal rent of Rs. 1000/- per month.
Both the Centres have been functioning smoothly now.
Please tell us about your own child and your involvement in the Centre.
Our son Aditya, who is at present 26 years old, was born blind and has severe Autistic features. His blindness was diagnosed when he was three months old. We took him to USA for eye operation when he was five months old. The operation was not successful. We admitted him to NAB's Nursery for Blind Infants when he was two years old. He attended that Nursery for two years. By this time his Autistic features were slowly becoming clear. Then we were advised to admit Aditya in Happy Home School for The Blind. It was a residential facility. We thought that he can be handled and trained better .Sadly our hopes were belied, because the School did not have trained manpower for handling children with Autistic features. Aditya was in that School for six years. The only advantage was that the School helped him to increase his mobility. After Aditya left the School, we were in search of a proper School or Facility, when we first came into contact with NAB's Home Visit Programme. Aditya was one of the first students of this Programme. In couple of years we helped NAB to start a Day Care Centre in Thane for children under 10 years. The Centre used to and still functions thrice a week Aditya used to attend this Centre till Sobti Vocational Centre started functioning. We were and still are working in close coordination with NAB.
That is how we got involved in setting up the Association and finding out the place to start Thane Centre. Both I and my wife were never previously associated with this type of work. We are from middle class family. We are professionals and were drawn into this field because of Aditya's handicap. The inspiration to go forward came from the realization that we must strive to secure Aditya's future in whatever way we can. Like all other parents in such situations we were trying to do something on individual basis. Later on after coming into contact with NAB we realized that only collectively we can create an infrastructure to ensure reasonably well future for our child. Since Sobti Centre has been established, many volunteers have come forward to help us and also many members of the Association always are ready to pitch in. We would fail in our duty, if we do not mention here the dedication of our young Teachers. At the age of 20—22 the way they work and care for the children is extraordinary. With this collective effort we have been able to run Thane & Andheri Centre.
Please tell us more about the vocational work that the youth do.
We train children to prepare artificial jewelry (Necklaces, Bracelets, Ear Tops, and Bangles etc.); various food products like mouth fresheners, seasonal food item required in India during fasting season, Decorative Lamps, Garlands of Artificial Flowers. Presentation Candles, Greeting Cards during Diwali & Christmas season. The item produced at the Centre are sold through informal sales network by putting up stalls at various social and cultural functions. We require 'Raw Material' to produce these items. Generally our products are appreciated. To give an example, one of our artificial jewel lay necklace was purchased by a sympathiser whose husband used to work in London. When she was there, she wore the necklace and many admirers asked her from where she has purchased that necklace. She narrated this experience after returning to India. We may get 'Big Orders' to supply such item in bulk from commercial enterprises. But capacity of children to prepare such item is limited and it takes lot of time to produce such item in sufficient numbers. Also along with Vocational skills we devote lot of time on conversational & mobility skills, daily living skills. We take them by public transport in many places of the city, to make them aware of the outside world. There is a daily routine of group activities, exercises and games. Hence taking into consideration this time element and the capacity of children the production at the Centres cannot be a commercial proposition.
What are your hopes and dreams for your child?
When we first realized that our son was blind it was a tremendous shock for me & my wife. It was a difficult and traumatic period for both of us. `Why us?' was the question which traumatised us day and night. We were in denial mode. But slowly we realized that if we keep on feeling dejected and remained in denial mode that would affect the future prospects of Aditya. Slowly we came out of this situation and accepted the reality and decided to move forward. The family support network was crucial in this period as well as help from medical professionals to tide over many difficulties and obstacles which we faced daily. We have now accepted that Aditya would always need a support system and he cannot be independent ever.
Therefore, on individual basis we have made secure financial arrangements for his future life when we would not be alive. Our dream—if at all it could be called that—is that Aditya should lead a reasonably well equipped quality life.
At the same time we keep on concentrating to develop his limited potential to the maximum limit as well as devote ourselves to create a social infrastructure whereby Aditya and others like him can be taken care of. This would reduce the burden on families to great extent.
What difficulties have the Centres had? Were these problems resolved, and if so, how?
The main difficulty which has always remained is that of resources. Though we have been able to set up a support base network to run the Centres, the existence is always hand to mouth. We need to keep on exerting ourselves to collect more and more funds ever, as the demands and expenditure keep on increasing with the general escalation in price levels. We also are in need of trained manpower. As we cannot afford to pay decent salaries, many of the trained Teachers keep on seeking new jobs with higher pay. To overcome this problem, for last two years we have been trying to get sponsorships to send some of the volunteers, who have been helping us and are want to remain in this field, for two years Diploma training. The idea is to create a trained manpower resource. Those who are sponsored and helped financially to complete the two year Diploma Course are generally morally bound to stay at Sobti for a certain period of time. Though we do not ask them to sign any sort of bond. Additionally, we have started a fund raising drive to enable us to pay decent salaries to our teachers.
The involvement of parents in running the Centres wanes off some times. Then we have to counsel them and for that we have very energetic trained Counsellor, who has volunteered to help us on continuous basis.
Similarly many parents have been unable to accept the reality that their child would not be NORMAL. They still aspire to make their child a GRADUATE like his other siblings. They still keep on believing that some MIRACLE would happen and their child would become NORMAL. The only remedy to resolve this problem is continuous sessions of counselling and expose them the examples of other parents who have accepted the reality and moved forward in life.
There is always a demand to admit more children in both the Centres. But we are short of space and this hurdle not easy to overcome.
Our DREAM PROJECT is to set up a Respite Care Facility, where there would be dormitories for children, Vocational Centre, Primary Health Care, Recreation Space etc. We have been offered a piece of land at a place about 60kms from Thane. to build the facility we need to collect Rs. 50 Lakhs (about $1,00,000) and to run the Centre annually Rs.10 Lakhs per year (about $20,000). We the active members of the Association are from middle class background and do not have any financial support network. Therefore, at present, it seems a herculean task to set up this Facility. Still an offer of land is a step forward and we keep on hoping that somebody or a group of concerned citizen would come forward to help us.
What is the best thing (or things) about the center?
To create an environment for effective socialisation of the children and help create an idea of self-worth in these children by training them in various skills. We think we have been successful to some extent in this direction. The example of Prabhu Dayal, a young boy of 16 years would be apt in this regard. When he came to Thane Centre, at the age of 13, he was very aggressive. He has severe Autistic features with blindness. He never used to communicate with other. If someone tried, he used to scratch his/her or pull their hair. After attending the Centre for three years, he has socialized to great extent. He has become quieter, now he plays harmonium, communicates with others and his mobility has increased immensely. Similar is the case of Tejal. She has low vision and came to the Centre two years back. She is delayed with behavioural problems. Because she has some vision she has been trained in simple writing and arithmetic along with vocational skills. She now socializes with other children.
All this could be achieved because along with vocational skills and other training, we take them to weekly outings and every year there are two annual trips to other locations, where we take the children without their parents..Similarly we also organize trips for parents only or sometimes outing for mothers only.
What advice do you have for others who are trying to start something similar?
Be patient. It takes lot of perseverance and ability to work collectively. But there is no other alternative. The parents have to come together to help themselves to secure future of their children. Individual efforts will not be of any help. The collective efforts would create a base on which an infrastructure of activities can be built and sustained.
