ALSphere Foundation
Shri Rajendra Shantilal Shah is a proud parent of a special needs daughter who has taught him a lot about humanity. He is the Co-Founder of Anand Dham, which is an abode for intellectually challenged individuals. He is serving as the President of Blind People’s Association, Ahmedabad. He is also working for SWMR and is serving as a managing trustee of Aastha Charitable Trust.
Mr. Shah is a successful businessman and a Chairman of the Company but he has devoted his life for the welfare of disable people. His vision is to create an environment which can provide meaningful opportunities to adults with special needs so that they get the warmth of a family and lead a dignified life in a civil society after their parents.
This month, the admin of ALS Parwaaz Forum, Ms. Zeba Hashmi has interviewed Shri Rajendra Shantilal Shah, who has made much difference to the lives of Special Needs People. Here’s a brief of her conversation with Mr. Shah.
Zeba Hashmi: How has your journey as a father of a special needs child been? What challenges have you faced?
Mr. Shah: My daughter was born in 1973 when there was absolutely no understanding about special needs. As parents, we were also not aware about her mental health condition. We came to know about it when she turned 6 years old while we were trying to enrol her in a school. Until then, we were dependent on doctors who were not able to diagnose anything. After getting her admitted to school, we realised her condition and the need for a special school.
At that time it was very embarrassing for her mother, because being a mother she was held responsible for her daughter’s situation. Sometimes many questions and comments from society used to make us feel bad. Then someone told me that your child can live her life well, but her acceptability in the society depends upon you; First you have to accept her then the whole world is going to accept her. From that day we learnt to accept our child as she is and we declared about her conditions to our relatives and friends. Now while visiting others’ houses, they were prepared to witness unusual behaviour of my child. Once we started accepting her, everybody around us also started taking care of her.
Zeba Hashmi: What motivated you to start Anand Dham? Tell us about various initiatives taken by Anand Dham?
Mr. Shah: Around late eighties, I joined SWMR – a parent association group where we used to meet every fortnight at the garden and discuss our problems. Gradually, we started looking for answers and ways to solve our problems. In the year 1991, I took up the presidentship of SWMR and then we decided to start in our own way, basically to solve two major problems.
Firstly, about their job and employment, and secondly, what will happen to these kids after us. While not depending on others initially, my wife started a residential workshop where children were working and that’s how Aastha– a vocational rehabilitation centre was started in 1992. It gave us confidence and in the meantime, my economic condition got better. So, despite some hurdles, I decided to purchase a land, and everybody around me supported. That was the beginning of Anand Dham – a residential resort condominium for God’s chosen ones. It has given relief to many ageing parents who worry what would happen to their children after they are gone.
Initially our concept of Anand Dham was restricted only to good accommodation and nutritious food but later we realised that it’s only a tip of the iceberg and they need more activities and training to keep them busy and happy. We are working very hard to engage all the inhabitants of Anand Dham constructively.
We provide a caring supervision, spacious room, day full of physical and intellectual activities, group engagement in a safe, secure and happy environment. We have created an industrial workshop and in the next 3 months, we will begin manufacturing khakra with some automatic machines, and the manual work like cutting and packaging will be done by special needs people. We are also sending them to our vocational centre where they are earning more than ₹100 per day. They do paper cutting, thermocol cutting, diya making, packaging etc.
During my visit to Israel, I learnt that we don’t have to make them only independent but also autonomous. Since their birth, it’s the parents who take care of the child and these children are driven mostly by us, not by their own wishes. Now we have to learn about their inner wishes, ways to accommodate and help them develop in that area.
Now we will be starting one more programme where we will try to understand each child and according to their wishes, we will help them to grow in that area.
We have also started a shop where they can purchase things as per their choice and in the next 5 years we will be able to do much better work in this area.
Zeba Hashmi: How can society support, accept and include a family with special needs individual?
Mr. Shah: As I said earlier, if we accept our child, society will also accept. I have seen parents who are not willing to accept their child’s condition and they feel guilty and get disturbed by the smallest comment given by society. Think of your child as God’s blessing and once our mindset changes, society will also change for the betterment of our children.
Right now in Annad Dham, we have so many generous donors who are trying to help us in the best possible way. Society will definitely accept us, but first and foremost, we have to accept our child.
Zeba Hashmi: How can the rules and schemes for disability be implemented on a larger scale?
Mr. Shah: In India, we have a lot of good schemes made by the government but some people are misusing these and ultimately our children are not getting the benefit, and the schemes are not being successful. Even parents are not aware about the rights of their children and the schemes available. They should be made aware about the available schemes. The government is providing us support but because of some low moral value people, the benefits of these good schemes are not reaching our children.
Zeba Hashmi: What advice would you like to give to young special needs parents ?
Mr. Shah: From my experience, I would say instead of worrying about the future of the child and wasting crucial time, start working with them and give them maximum possible ways of training. Development will happen at its own pace.
Don’t look for shortcuts and miracles through medications and non-evidence based treatments. Accept their disability and try to give them training which will eventually make them independent and make them stand on their own.
There is one more harsh fact that parents are taking extra care of the child and due to that the child is not able to develop properly. No body uses 100% of the brain, only 7 – 8 % of brain is being used by the neurotypical people. If one portion of the brain is not working, try to work on the active side of the brain and they can do a lot of things.
Keep your child busy, it may or may not be a productive activity but keeping them engaged helps in their brain development.
Accept your child as he/she is. Parents should not feel ashamed of the child rather we should feel proud that God has given us a child who is no less than an angel.
Don’t depend too much on others, it makes our situation complicated. When we take up our problems and search for solutions, it becomes easier. Sometimes parents become very demanding but they don’t want to take any responsibility. I want to insist that young parents should work in a group. They are doing everything for their child but they don’t come out and due to that they are not giving them a chance to socialize and to learn from the outside world. To make things better, parents association groups should increase and they should start working as a group to get maximum output from the child as well as the society.
