The birth of her elder son completely changed the course of a young Sudha Kaul’s life. Friends joined in to help her and Kaul turned her situation to strength. The founder of Indian Institute of Cerebral Palsy (IICP) and winner of The Telegraph She Awards 2018 in the education category shares with t2 her journey, challenges and learnings as a teacher. 

You were a professional librarian till IICP took off. Did you ever want to be a teacher?

I always liked interacting with kids but never thought I would get into teaching. I love books and that is why I studied library science and joined the children’s section of British Council library. But I never had any experience in teaching till IICP.

What was the biggest turning point of your life?

The birth of my son Arjun in 1969 changed everything. We discovered very early that things were not right with him. Arjun was two years old when he was detected with cerebral palsy. We went to the Spastic Society in London, that is now called SCOPE, to find out what was really wrong with him. In England, we also met Karel Bobath who had established a specialised therapy for children with cerebral palsy. He told me to go back and do something in my country.

Back home I got in touch with Perin Aibara, a Bobath therapist. She encouraged me to start a school for children with cerebral palsy; Perin later went on to become the  first chairperson of our organisation. I also met a very sensitive paediatrician, Zarine Dadina, who had a very positive attitude towards children like Arjun. Meeting all these wonderful people changed my life. They and my family gave me the confidence to start IICP.

What was the attitude to disability at that time in Calcutta?

Calcutta then had no institution catering to children with cerebral palsy. Even doctors were not always sensitive. Once when he was six, Arjun started having convulsions. I went to a renowned neurologist who told me bluntly that Arjun was mentally retarded and there is nothing much I could do about it. He advised me to have another child instead. But  again there were other doctors, like Anupam Dasgupta, who gave us the confidence to work with such children. We need to sensitise the medical profession. Parents go to them for the first diagnosis. Doctors need to support parents. What they tell stays in your head. We started the family services and intervention clinics at IICP to give people that confidence.

Who helped you in your journey to set up IICP?

My husband Om and I realised that cerebral palsy was not curable, but a lot could be achieved through teaching and therapy. My college friends Junie Bose and Anju Mason pitched in as also Aibara and many other friends.

Our contacts from SCOPE helped us with advice and knowledge. My husband, who is a tea professional, was able to get the support of the tea fraternity and organise a special tea auction to raise funds for our organisation.

We began as West Bengal Spastic Society from two rooms at the Ballygunge Military Camp. We were a group of young people who felt we needed to do something and firmly believed that all children can learn. We began with two — Arjun and Madhuri Kapur, who also attended Aibara’s clinic. Mithu (Madhuri) was a bright young child with cerebral palsy and Arjun had intellectual difficulties along with cerebral palsy. I would laugh and say, let’s bridge the gap!

What were the initial challenges at the Ballygunge campus?

Space was definitely an issue but it did not really bother us. We were out in the garden and in the corridors, making full use of our limited space to learn and be happy. Only when more children started pouring in that we felt the need to move out. In our initial days we had three trained people  — speech therapist Kamla Prasad, physiotherapist Tessa Hamblin who came down from the UK, and Shanti Nandy our first special educator. The rest of us just pitched in. The wonderful part of education is that if you are a good teacher, you should have no pre-conceived notions. None of us were trained teachers but we felt we could teach and were open to learning ourselves. 

How did word spread?

We brought out a brochure to pass the word around. Other parents also got to know through physiotherapy clinics which we visited. Friends spread the news through word of mouth. That’s how we grew. In the beginning, not every child who came to us had cerebral palsy. We would welcome anyone with special needs then. Slowly we decided to streamline. When friends from Shillong and other places began visiting us, we decided to open our OPD or Family Services. When we got more staff, we decided to go on field visits. And simultaneously we went for training programmes ourselves.

How were your field visit experiences?

My father, a social scientist and doctor (B.L. Raina), was involved in initiating the family planning programme in India. In Chetla there was a large community health centre, providing healthcare services to one of the densely populated slums in Calcutta. My father suggested we reach out to the communities there. Thus Chetla became our first project in the early ’80s.

The community people were glad to receive our help. My father always told me to give respect to those whom you are helping. The strength of community work always lies within the community. It does not matter how educated these people are as long as they are willing to learn. I found families with disabled kids often getting a lot of support in a slum than in privileged society. Much of our community programmes still are about creating awareness and building support.

You did your Phd in Augmentative and Alternative Communication at 54. How difficult was juggling work, home and studies?

I am lucky to have a supportive family. I lived in a joint family, I knew my children Arjun and younger son Dhruv would be looked after. So I had the time to study. Besides the zeal was there. I was interested in working with children who had communication problems and language delays. And thus began my journey of exploring augmentative and alternative communication methods.

What are the requisites of a good teacher?

ABC. The right Attitude; Belief that all children can learn irrespective of their intellectual and physical abilities; and a Commitment to fulfill these goals. 

What has been your best reward?

Every day is rewarding for me. The organisation has given me so much. My outlook has changed since I took the plunge in this direction.

How have things changed since then?

Things have changed for the better. There is more community acceptance and awareness for people with disability now. But we still have a long way to go. There is more advocacy too, thanks to people like Jeeja Ghosh. There is a lot more awareness but a lot needs to be done too.

It is sad that unless people take to the streets to highlight issues, no one takes notice. Our advocacy group has moved on to campaign for regular social causes like road safety. People with disability are making their presence felt but the divide still exists. Some mainstream schools are also becoming inclusive, but most take in the children who can cope with the academic syllabus, be it current boards or the National Institute of Open Schooling.

How are you leading your retired life?

I enjoy Facetiming with my grandchildren. I visit IICP whenever they need me. Otherwise I love reading and have started writing too. We have taught for so long, yet have not documented enough. That idea is taking shape now. I plan to document training material on different aspects of special education and intervention. Hopefully, my colleagues who have retired will also share the wealth of their experience. 

What was your experience at The Telegraph She Awards like?

It was a heartwarming and humbling experience to be in the midst of such stalwarts from different walks of life.

What is your message for She Award recipient Sudha Kaul? Tell t2@abp.in