Mother’s Day 2019: Disability activist Nipun Malhotra was born with Arthrogryposis, a rare congenital joint contracture, which meant the muscles in his limbs had not developed fully. But Nipun’s mother Priyanka Malhotra, was determined to give her wheelchair-bound son a normal life. Today, the mother and son are running an organisation called Nipman Foundation that helps persons with disabilities. Express Parenting spoke to the mother and son to know more about how they have supported each other in their journey.
On Nipun being born as a ‘wooden doll’
Nipun: When I was taken out of my mother’s womb, my arms and legs were fractured and my entire body was blue. This was 1987, eight years before India got its Disability Act. Among loads of doctors, there was also one who said that I would living the life of a wooden doll.
Priyanka: Nobody is ready for a challenge. It was scary but I realised he only had me to protect him. So, I rose to the situation. At that time, there was not much awareness. I had to research available literature on his problem which compared it to a ‘wooden doll’. But I was sure that if the ‘wooden doll’ can smile, why can’t he do other things? There was one doctor who told me, ‘He will never deprive you of the pleasures of motherhood.’ That put me on track. And as I kept progressing, my son kept responding. At that time, I did not even know I would get results. I was just doing it for my child and he has given me much more in the process.
Why the mother chose to put her son in a regular school
Nipun: My mother made it her mission to help me lead a normal life and that’s how my journey really started. For the first few years of my life, there were a lot of corrective surgeries. By the time I was five, it was time to send me to a school. There were people who said I should be sent to a special school. Luckily for me, my mother wanted to give me a completely normal life and I feel that it’s because of the decision she made that I am what I am today. There were 15-20 schools that rejected me before there was one school, St Mary’s in Mumbai, that judged me for what I could do and not what I could not do.
Priyanka: My son was very smart. So, I was sure he had to go to a regular school. Luckily, his interview at St Mary’s consisted of very practical questions. I was very tough with Nipun as a child to make him learn his tables, etc. So, he could answer everything they asked him.
How Nipun’s mother ensured his son gets a normal life
Priyanka: I made sure to take him everywhere. I used to initially carry him. Later, we got him a wheelchair. It was difficult, no doubt, and I kept hoping for miracles. Earlier, we also got a contraption made for him where he could stand till I asked myself why I was putting him through so much pain. Then, I let him just be the way he was, stopped all therapies and began working on his mind. I would take him out, show him things and teach him about them, let him touch and feel textures. It was a lot of effort and people thought I was being stupid but it paid off.
Nipun: I noticed two kinds of attitudes among teachers in school–some looked at me with sympathy while others were indifferent to me and looked through me. I remember my mother was called for a parent-teacher meeting at the end of class 1 and she expected to get a pat on the back. But the teacher said, ‘I want to keep Nipun in class 1 because I can’t read his handwriting’. But my handwriting was not going to improve the next year also. So, my mother said if handwriting was the problem, it was better to keep me in the same class for the rest of my life. I was promoted eventually.
Making most of the opportunities available
Nipun: My mother played a major role in ensuring that I catch up with school. Till around class 5-6, she would come to school and copy my homework. But I realised you really have to make most of any given opportunity. For instance, it was Sports Day in school and I insisted on becoming the master of ceremonies. It was about maximising opportunities at that stage.
Priyanka: I would read books to him; read the beginning of the story and ask him to complete it. I did whatever I felt was sensibly possible. We shifted to Delhi later and he was admitted to APJ Noida. There, the chairman had a disability so they were more sensitive. So his class was arranged on the ground floor. But kids hated to be in his class since the ground floor was supervised more. So, it was lonely for him in school. It was only after his class 10 results, when he got 86 per cent that people realised that he was smart.
‘I always wanted to be strong and confident enough to look after him’
Priyanka: I am a very positive person. I used to get very teary when I would talk about him in the beginning, but my dean in college, where I was pursuing counselling psychology, told me, ‘Be soft inside and hard on the surface.’ And that was the best advice. I have always made an effort to look ‘smart’, because then the world takes you more seriously. I always wanted to be strong and confident enough to look after him. I realised I have to be fine.
Nipun: The beauty of my mother was that even if she was facing challenges, I never really got to know of it. She has always been strong in front of me.
On creating an identity beyond the wheelchair
Priyanka: When Nipun was still a child, my father took me to a doctor in Kashmir who said three things–‘Never give him calcium, don’t try massages and don’t listen to the world. Do what feels right as a mother.’ And I have just stuck to that. People are judgmental. When I put him in a regular school, people thought I was doing it just for myself. Gradually, they shifted their focus more on his achievements. I realised my son had to have some edge over others so I really concentrated on his education.
Nipun: A wheelchair is a part of my identity and there’s no point denying that. But it is also important to realise that your wheelchair does complete your identity. I am a lot of things beyond that, including that I am a social entrepreneur, voracious reader, writer and so on.
Priyanka: My son is faster than a calculator. He never talks about that but he is.
‘My son is leading the way now’
Priyanka: Now, he is leading the way. I report to him at work and I prefer taking his approval. I know he is smarter. I almost feel competitive about catching up with my son! Because I know he excels in many areas. The things I did to help him, he is doing for the world. As a child, he would ask me, ‘What about the other Nipuns who do not have a mom like me?’ So, I think he has always worked for the bigger cause.
Nipun: Our relationship has, of course, evolved but I think with every change in the relationship, she has adjusted accordingly. She was a perfect guardian and best-friend to me in school, when I didn’t have any friends and now, she is the perfect person to work with in our foundation. I have been very lucky to have her.
Identify your child’s strength
Nipun: Judge people for what they can do. Concentrate on your child’s strength, whether it is academics, music or writing. Do not burden them with undue expectations about what you think they should do. Just give the child some space and courage.