Social Activist Sumithra Discusses How Parents Create Inclusivity Barriers For Their Special Children
- IWB Post
- April 2, 2018
“Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.”~~Buddha
Sumithra Prasad, the founder of NGO D.O.R.A.I Foundation, believes her life’s sole purpose is to illuminate the paths of others.
A daughter, a wife, and a mother of two, Sumithra is tirelessly working towards various social issues to bring about a positive change in our country.
Her work includes empowering the persons with special abilities, de-addiction camps for substance abuse, encouraging inclusive Education, mental health awareness through consultation and program development, advocating the rights of the transgender community, youth sensitization and activation, and other social issues.
Sumithra’s son, Srinivasa, whom she fondly calls Saahitya, has Autistic Spectrum Disorder. He suggested to start a bakery where his friends and he could bake cookies and cakes. It was then that Sumithra set up Sai Bakery. The bakery employs adults with developmental disabilities providing them a place where they can learn, work, and spend their time productively.
In an insightful chat with Sumithra, we discussed various areas of her work and personal life:
Me: If a documentary on your journey was made, which three transformative moments from your life would you include in it?
Sumithra: First, my journey as a youngster. In 1985, I was rusticated from my college and wasn’t given the hall ticket to appear in the examinations as I was heavily into substance abuse. I wasn’t a good girl who was doing good things. But, this incident changed the course of my life. I studied hard, won the scholarship and passed my exam with first division later.
Second would be my son’s birth. He was born with special needs and challenging medical conditions. In 2008, Saahitya went into the coma, twice. He was just 16 at the time. For two months, he was on the ventilator. It was a miracle that he came out of it and won the battle. So my journey as a mother has been exhausting and it’s like, maine usse lahu se seecha hai. My son’s spirit has brought me to believe that one can turn the face of the match around even on the last ball.
The third moment that I consider a life-changing moment would be when I became the first female recipient of ‘Golden Candle Puruskar’ in 2012. I met so many inspiring and highly motivating people who are the catalysts for change and it was so reassuring to me. Also, the main reason why Golden Candle will always be a special award is the meaning behind the award. A candle is symbolic of giving the world a light of hope when no other source of light can. The purpose of a candle’s life is to light up other lives. And, as a social activist, it is such a symbolic award.
Sumithra: My day starts early at 6:30-7:00 am with tending to my 25-year-old son and 81-year-old mother. All of us eat our breakfast together. As my son has the Autistic Spectrum disorder, he likes to stick to a specific schedule and so wants everything on time. So, we all make sure that everything is in organized and structured fashion. At 11:00 am my second family, Sai Bakery Group comes in. Apart from baking, we have counseling sessions for children, parents, and others. We run our NGO, Dorai Foundation from home itself and do not have a separate office for it. So, our day doesn’t have a fixed schedule. The only aim for each day is to make as much difference as possible in the lives of people. No two days are similar and every day we are doing something or the other for various social groups. For example, today, I will be going with my entire family to attend Trans Achievers Award which has been organized by the NGO, ‘Born to Win’ headed by a transwoman Shweta.
Me: Sai Bakery was born out of your personal story. What other initiatives that you have undertaken are fuelled with your personal experiences?
Sumithra: Like I said, I was addicted to drugs at one point. So, I’m working to curb the substance abuse by people through proper rehabilitation and counseling. I know the vulnerabilities, the temptations, and the determination it takes to give up on such an addiction because I had been there and done that. Also, I think I have Attention Deficit Hyperactive Disorder. I cannot sit idle and cannot just do one thing. I have to do 3-4 things at the same time, and as cliché and filmy as it may sound, we get to live only once, and so, I thrive to make difference in the lives of as many people as possible.
Me: What one message would you like to give to the parents of special kids?
Sumithra: I thank the Almighty for giving me a son with special needs as it has given me the opportunity to see life beyond the usual self. Of course, it’s not easy to raise children with special needs. Whether you are a parent of a “fully-abled” child or of a special child, parenting is a tough job. The only difference while raising a child with a special need is that initially, you have to be there for them 24 x7. Being said that, I also feel that most parents of special kids make them so dependent on themselves that they forget about the future. They have to understand that they’ll not be around their kids forever. So, the greatest acceptance for them is to realize that we need to empower the kids and make them independent as early as possible. At our Sai Bakery, I have a 45-year-old special needs person coming with her 87-year-old mother. Imagine, how difficult it must be for both of them.
My only message to the parents of special kids is that please have a lifetime approach while raising your kid. Let them learn to manage on their own. It might take more time, patience, and effort, but, they’ll get there.
Me: And, given the fact that Sai Bakery was, in fact, your son’s idea, how important is it for the parents to listen to their children and not just focus on their disability so as to make them financially independent and sustainable?
Sumithra: I always tell the parents to observe their interests and start something for them on the same lines. Also, I always advise them to involve two or three of their child’s friends or other people with similar abilities, as working in groups give them motivation. Each one of us wants to feel important and they are no different. Trusting them, engaging them in the decision-making process, and giving them a certain responsibility makes them feel important and wanted which is necessary for their confidence in self.
Sumithra: See, I am one amongst others who believe that there must be special schools for differently-abled kids as they can cater better to their individual needs. But, I also believe that after a certain point, a special kid needs the regular environment of the mainstream schools so they can adapt and evolve themselves which helps them to function better in the society. And, for this, I think the biggest role is that of the teacher. To encourage inclusive education, teacher training programs should be undertaken where they are made aware of the different needs of different kids and address them accordingly. Then, there has to be a peer-group orientation to make the students comfortable with each other and blossom friendships. Classrooms should also be accessible and friendly for the specially-abled kids.
Me: Very true! Most of the times, the public spaces are not accessible for the people with special abilities. What initiatives can be taken by the society in general to encourage an inclusive environment?
Sumithra: There are two barriers that restrict the access for the specially-abled people. One is a physical and another one is psychological. Physical barriers will hamper their mobility and their physical presence. And, to become more inclusive, people must accommodate necessities of the specially-abled persons like they would do for the others. Audio books, ramps, spoken road directions, etc., are some examples of how it can be done.
The psychological barrier is more about the approach and perception of the family of a person with special abilities. The question is not how the society will respond, but how much we as a family are ready for the social acceptance. Many parents and other family members hesitate to take their child with special ability out because, ‘Log kya sochege!’ We take Sahitya everywhere! Of course, he doesn’t like to go to watch films because he’s sensitive to loud audio, but that’s his choice. So, I think more than the physical accessibility it’s the mental accessibility which is important.
Me: De-mystify Autism for our readers.
Sumithra: I like to call Autism a beautiful bubble! It’s an umbrella term, which means that functionality is different for every person with autism. They are not dumb like many people believe. They just do not like to talk and believe in non-verbal communication. The support system is required to address their sensitivity. Like, Autism affects a lot of sensory areas and so specialized care and support are needed to ensure their comfort. They have different talents which need to be encouraged by their families. Also, many people with Autism have multiple intelligence and not only in terms of academics but other areas also.
Sumithra: Dynamics of the sex workers with their children is so bad that it is disheartening to even imagine. Children are most vulnerable at the age of 12-13, and imagine the amount of negativity and psychological trauma that the child of a sex worker has to go through at this age. Just imagine that people refer their profession to verbally abuse, and for the child, it’s what his/her mother does for a living. Many times, they develop aggression disorder as they rarely get any opportunities to break free from this dark world. So, the biggest challenge is to bring the children out of the negativity.
Me: So, how do you include your family in your vision?
Sumithra: We have this Whatsapp group, ‘Famous Five,’ which includes my mother, son, daughter, husband, and me. It is to keep everyone up-to-date on the work of our NGO’s and take suggestions, etc.
My mother actively takes part in everything that I do and my husband is the greatest support. Without him, it wouldn’t have been possible to do so many things simultaneously. My daughter is 20 years old and is the youngest creative art therapist in the country. And, you already know all about the achievements of my son.
Me: You see so much misfortune and pain, it must be taking a toll on your personal and emotional health. What lifts you up in such times?
Sumithra: Yes, I feel exhausted sometimes! I love listening to songs so Music definitely works as therapy. In 2013, I had a lot of health issues and then in 2015, the day I returned from Nepal where was involved into Earthquake relief work, I was admitted to the hospital. But, I think it’s the prayers and the blessings of my family and so many other people that give me the physical and mental strength to keep moving. Apart from this, I also enjoy painting, singing, and writing.
Sumithra: *laughs* So, there’s this Khichdi that I make which is like a mix of all my cultures which has been given the name of Baba Khichdi. About the wardrobe mash-up, I’ll tell you something fascinating.Every year I give up on something I love. So, I don’t wear silk sarees or use leather products. I used to really love Kohlapuris and Mojris, but I have given up on them, too.
Me: *interrupts* But why?
Sumithra: People organize these yagnas where they are mindlessly doing Swaha Swaha, pouring in ghee, rice, etc. I see my life as a yagna and I sacrifice my favorite things. And, I do this because I have been an addict previously, and I know it’s consequences. Now, I have learned not to get addicted to anything.
P.S. If you wish to contribute to D.O.R.A.I foundation in any way, you may contact them through their Facebook page, here.
This article was first published in May 2017.