Enabling The Disabled: This Mother-Daughter Duo Changed The Way World Looks At People With Disabilities

New Delhi: The month of February is the month of love, the month when everyone celebrates Valentine’s Day and remembers the importance of love in one’s life. Love goes beyond affection to be a source of strength, inspiration and build empathy, care, inclusion and humanity that treats everyone as an equal. This Valentine’s day, Banega Swasth India decided to celebrate this spirit of love, one that does not see people with disabilities as burden or dependents on society and does not treat them as objects of pity, charity or bind them to their medical condition. As part of our series Able 2.0, we had a very special chat with the Mother-Daughter duo, Dr Shayama and Tamana Chona.

Also Read: Leaving No One Behind: The Need To Build An Inclusive Society, One With Equal Access For People With Disabilities

Until her retirement, Dr Shayama Chona was the Principal of one of the premier schools of the National Capital, Delhi Public School, and the only school educator in the country to be bestowed with both the Padma Shree in 1999 and Padma Bhushan in 2008. Dr Chona is known for her activism for inclusion of people with disabilities and in 1997, she was presented with the National Award for Individual for Best Work Done in The Cause of the Disabled. She is the Founder and President of the Tamana organisation that supports individuals with intellectual and developmental disabilities. But most importantly, she says, she is a mother to Tamana Chona, who was born with cerebral palsy.

Tamana Chona currently works as a Nursery teacher in DPS, Gurgaon. Despite being born with Cerebral Palsy, with the support of her mother and family, she defied all the odds that life threw upon her, and stands as a winner today. Along with being a Nursery teacher, Tamana is a National Award recipient, a Marathon Runner, a TEDx Talks speaker and the heart and soul behind the NGO Tamana. In this special conversation, the mother-daughter duo tells NDTV how they changed the mindset of the people and continued to work tirelessly towards bettering not just Tamana’s life but also lives of other children with disabilities.

NDTV: Dr. Chona you are the only school educator in our country who has been bestowed with both, the Padma Shri and Padma Bhushan. But above all, you are a mother and a woman. How was it to raise a child with special needs? Since we are talking about love, how much role did that play?

Dr Shayama Chona: As a teacher, I once asked my children, what are the seven wonders of the world. Different children gave me different answers. One said the Grand Canyon, other said the Great Wall of China, the other one said Taj Mahal.

But there was another little girl who was sitting in the corner, writing something. I asked her why doesn’t she answer. She said,

Ma’am I have so many, what should I tell. But for me, to feel, to touch, to hear, to taste, to see, and finally, the greatest wonder for me is to love.

I learned so much from her, if I have reached anywhere, it is out of love for Tamana, and my love for all the kids who are special on Earth because they have the love that is totally pure and not at all complicated.

NDTV: Tamana you have defied all odds. Being born with Cerebral Palsy, you couldn’t walk till you were 10 years old and today you are a Nursery school teacher, National Award recipient, a Marathon Runner, a TEDx Talks speaker. How did you achieve so much? And what role did your family play?

Tamana Chona: It’s all thanks to my parents, my family members, who helped me. I have come a long way. I had Cerebral Palsy, I couldn’t hold my head high, I couldn’t walk or talk. Today, I’m learning dancing online, I’m learning Spanish, I’m learning block printing right now as well and I’m also on the Board of Tamana Association school. The school is named after me.

Also Read: Leaving No One Behind: Paralympian Deepa Malik On Creating An Inclusive Society

NDTV: Dr Chona, for almost two decades you have helmed a school as a Principal. You have closely worked with students. In fact, you changed the mindset of the education system towards integration and inclusion of the disabled. How important do you think is it to inculcate sensitivity and the idea of inclusion from a young age?

Dr Shayama Chona: It is so important that we expose the younger generation to kids with a difference. There is a division in the country and rest of the world in many ways. This is another kind of division, where people who are a little different are not recognised in schools, they haven’t got the facilities, there isn’t that understanding among the children, parents and teachers on how to create an inclusive classroom.

So my first student, even before Tamana joined, I had a blind student, several more such students joined later. They were such a great group of kids, that every student wanted to be their friend, hold their hands, help them to reach bus and get off the bus. It’s an opportunity to be inclusive.

I think the most important thing that the government of India has also started now, is inclusion. We have to include all minds into a classroom, and create that atmosphere where there is love, love and love. This is the season of love!

NDTV: Tamana you have essayed so many roles, recently you have written a book. Tell us about the book and how did you think about writing a book?

Tamana Chona: Actually, the person behind my book is Aditi Mehrotra. She inspired and motivated me to write the book. She used to come to my school, Tamana, every day. There we would work on this book, she would help me put it together.

Usually, I write blogs, my day to day thoughts. The inspiration came from there. We gave the book to different schools and then it became the talk of the town. It is all thanks to Aditi and my mom who have helped me to write this book.

Also Read: One Health, One Planet, One Future: ‘It Is Crucial To Leave No One Behind In Order To Grow As A Nation,’ Says Lakshyaraj Singh Mewar

NDTV: Dr Chona, how can the school environment and infrastructure be made disabled-friendly? Back in the 90s, you had to write a letter to the Queen of England to secure land for the Special School in Vasant Vihar. Please take us through your journey and how far do you think we have come.

Dr Sahyama Chona: My life begins and ends with my daughter, Tamana. I would’ve not gotten any awards, not that it matters if it wasn’t for her.

I was a different person before her, and my little son was 2 years and 9 months when she came into our lives. But at such a young age also, he was so keen to look after her.

In my school, my students would love to babysit her while I was teaching, it was a sight to see. Slowly, everybody wanted to be her friend.

Love is something which is so precious, pure. Tamana was not judgemental and always had a smile on her face, smile for me is the first sign of love. When she would smile, it was as if she is smiling love. As we went on over the years, I was at the Delhi Public School for nearly 35 years, I realised that every child that was passed out of the school was a friend of Tamana.

And when she became a teacher there, she has been with the school for 20 years now, she is 52 years of age today, all her kids who passed out from nursery are today working with big companies. And the first message I receive from them, when they try to contact me on social media is – How is Tamana? Tamana has become a figure to prove that nothing matters. All that matters is love.

I started a programme, where I wanted to send the children with disabilities to the homes of regular children. The children were accepting our kids but the parents were not. Schools still don’t have ramps, lifts or special teachers. Imagine a class, that is inclusive, has a blind, a deaf, a child who can not speak, an autistic child, and a teacher who is not trained to teach them. Now, in the B.Ed course, they are bringing disability understanding and inclusion requirements for the teachers to understand how to accommodate these children socially, emotionally and physically into the classroom and the infrastructure is really important.

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NDTV: NGO Tamana works towards the welfare and rehabilitation of specially abled children to make them socially, financially, and physically independent since 1984. How much have we changed as a society? Why is it important to include everyone and leave no one behind?

Dr Shayama Chona: We were registered in 1984, and I wrote a letter to the Queen of England then, asking her to come and inaugurate our first building. We didn’t even have the land. When we got the land, the residents of Vasant Vihar took us to the court saying how can you have a school for mad people. At the time, there was no Disability Act.

At such a time, Lady Diana came to inaugurate our school, the moment everybody heard she is coming for us, even the Minister from Education Departments came in and joined us. This was the first special school in Delhi and from there the journey began.

Now there are so many special schools, and Tamana itself is running 7 courses for children with disabilities as well as teachers. It is important for schools to have special teachers.

Where there is love, there is no disability only ability; because we become enabled. Disability is not with them, it is in our minds.

NDTV: Tamana, you are the heart and soul behind Tamana. While you inspire many tell us how do you help uplift the moods of the children there?

Tamana Chona: When I get to the school, the children want to hug me, play with me. I play with them, teach them and I tell them they are not alone and I am with them. I tell the children that love is infectious.

Also Read: Union Health Ministry Issues Guidelines For COVID Vaccination At Home For People With Special Needs

You can listen to the full Banega Swasth India podcast discussion by hitting the play button on the Spotify player embedded above.

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NDTV and Dettol have been working towards a clean and healthy India since 2014 via Banega Swachh India initiative, which is helmed by Campaign Ambassador Amitabh Bachchan. The campaign aims to highlight the inter-dependency of humans and the environment, and of humans on one another with the focus on One Health, One Planet, One Future – Leaving No One Behind. It stresses on the need to take care of, and consider, everyone’s health in India – especially vulnerable communities – the LGBTQ population, indigenous people, India’s different tribes, ethnic and linguistic minorities, people with disabilities, migrants, geographically remote populations, gender and sexual minorities. In wake of the current COVID-19 pandemic, the need for WASH (Water, Sanitation and Hygiene) is reaffirmed as handwashing is one of the ways to prevent Coronavirus infection and other diseases. The campaign will continue to raise awareness on the same along with focussing on the importance of nutrition and healthcare for women and children, fight malnutrition, mental wellbeing, self care, science and health, adolescent health & gender awareness. Along with the health of people, the campaign has realised the need to also take care of the health of the eco-system. Our environment is fragile due to human activity,  that is not only over-exploiting available resources, but also generating immense pollution as a result of using and extracting those resources. The imbalance has also led to immense biodiversity loss that has caused one of the biggest threats to human survival – climate change. It has now been described as a “code red for humanity.” The campaign will continue to cover issues like air pollution, waste management, plastic ban, manual scavenging and sanitation workers and menstrual hygiene. Banega Swasth India will also be taking forward the dream of Swasth Bharat, the campaign feels that only a Swachh or clean India where toilets are used and open defecation free (ODF) status achieved as part of the Swachh Bharat Abhiyan launched by Prime Minister Narendra Modi in 2014, can eradicate diseases like diahorrea and the country can become a Swasth or healthy India.