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(On International Day of Disabled Persons 2019, The Quint is reposting stories that celebrate narratives of persons with disability and celebrate their achievements and contribution)
Dear Mom,
I know one day is not enough to thank you. However, today does give me an opportunity to pause and be grateful for the integral role you have played in my life. After all, your life changed completely after my birth.
You were 21, newly married and had just moved from a small town to Mumbai. I am sure you dreamed of getting to know your husband better, making new friends and travelling around the world. And then I happened. The birth of a child who wouldn’t ever walk, had his limbs bent inwards and whose muscles would never fully develop changed the cartography of your life.
After all, it was you who remained unfazed irrespective of the bleak picture doctors painted of my life. When they discovered that I was completely blue, and had sustained fractures upon being taken out of your womb, their first reaction was “oh no”.
You were subjected to a wide variety of diagnosis from clueless doctors, that ranged from “perhaps it’s worth keeping him alive because his neck is straight” to “he’s going to live the life equivalent of a wooden doll”.
You made it your mission to fight for me at every step and never deprive me of my childhood. You left no stone unturned to ensure that I attend regular school like other children. This must have been hard when the whole world was full of “well-meaning advice that I should be ‘protected’ and be sent to a ‘special school’.”
You visited school everyday, taking down class notes and coaxing teachers to take an interest in me. There were no special educators then, no legal protections. In fact, India got its first disability act eight years after my birth. What kept me going in school was the fact that you were there everyday.
I know letters feel a lot more personal when they are handwritten. You know all about that, remember when you told my stubborn teacher from Class I to “keep him in the same grade for life” when she refused to promote me due to illegible handwriting. Besides, you do know how obsessed I am with Twitter! It is much easier to tweet a link. So I’m sorry but you’ll have to make do with this.
You are the best PR agent that anyone could ask for. You not only took me out for all social engagements but also ensured that I was always the centre of attention. At parties, you forced unsuspecting guests to hear me recite multiplication tables and poems. As I grew older, these were replaced by lessons in history and science. I loved the attention.
You have beautifully transitioned in your role as a mother to me – from being a protective guardian to becoming my best friend when I was in school (no kid would befriend me until I entered college).
Today, we are co-founders of a non-profit that is slowly laying the building blocks for a more equal world for the disabled. I am the one often speaking on stage, celebrating the achievements of the foundation while you’re ensuring everything is going well in the background.
You’re the one who has always helped me bounce back. I still remember the many rejections I faced in my professional and personal life in the year 2011. As I sat at home depressed, listless and purposeless, it was you that taught me the power of gratitude. You asked me to maintain a daily diary, listing all the things in life that I was grateful for. Your name is the first thing on that list, today and every day.
Thank you mom – for everything. After all, the job you have been forced to sign up for has no off days, no breaks. Every day for the last 29 years, the first thing you’ve done after waking up is to come and turn me to ensure that I don’t hurt myself by sleeping on one side. Every morning, you worry if my attendant has reached on time, that people treat me as an equal when I enter a work meeting and that the venue is accessible as I head to a party. Besides, you’ve created a universe full of love and positive energy at home – always working towards making me happy.
Love,
Nipun
(Nipun Malhotra was born with arthrogryposis. It considerably reduces mobility and in his case has made him a wheelchair user. He is the CEO of Nipman Foundation and Founder, Wheels For Life. He tweets at @nipunmalhotra)
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