Inspired by the zeal and enthusiasm that Tapasvi, her second cousin had for life, banker and book lover Shikhi Sharma decided to pen her second book — Unbeatable – Celebrating Life with Cerebral Palsy — that captures the nuances of living life with cerebral palsy. It not only documents the challenges, determination, accomplishments of the affected, but also the caregiver, along with sharing anecdotes from medical professionals, special educators, and others to understand more about the condition, its causes, risk factors, forms and early signs.
The condition, which hinders movement and posture, and causes some form of intellectual disability, seizures, and physical sensations, affects nearly 15-20 per cent of physically disabled children, according to a 2017 BMJ review. In India, with the estimated incidence being 3/1000 live births — there is an impending need to raise awareness throughout the country, believes the 33-year-old. Published by Srishti Publishers, the book has also received appreciation from Indian para-athletes, including Shatabdi Awasthi .
“There can be nothing more liberating than proving your mettle to yourself, and breaking your own boundaries. Sadly, our society often sees differently-abled people as less capable than others. So when someone breaks this presumption, through their words and actions, it makes life better for a larger set of people. Tapasvi’s determination in the face of all odds and the support his family gives out is exemplary. This book brings to us an inspiring story of dedication, hard work, unconditional love and their unbeatable spirit,” said Shatabdi Awasthi, Gold Medalist in Berlin World Grand Prix, International Para Athlete.
In an interview with indianexpress.com, the Jaipur-based author talked about her love for writing, the need to understand more about the condition, her subject and more.
What made you become an author?
I read a lot and have a collection of approximately 1,500 books. I need a new book every third day. Writing, I feel, relieves me of all my stress and takes me into another zone altogether. I joined the banking sector after completing my engineering. If there is any time left apart from bank and books, then I opt for sketching.
Why did you decide to write on cerebral palsy?
At present, about five lakh children in our nation suffer from cerebral palsy. Although the government is doing a lot, some issues still remain unresolved. Majority of schools don’t admit children with disabilities, special educators are not easily available, and most public spots don’t have ramps or are accessible — which needs to be worked upon.
Why did you choose Tapasvi as your subject?
I decided to write about Tapasvi because of his undying zeal and euphoric spirit. While writing this book, I realised that we give up easily on the slightest of issues, we get irritated if our coffee doesn’t have the right amount of sugar or if our annual vacation gets cancelled due to some unexpected reason. Tapasvi just doesn’t have the luxury to get irritated on these issues because he has bigger issues to take care of and still he always carries that smile. I loved his spirit when one day he said to me, “The quest has just begun”, that was the moment I decided to pen down his journey and at the same time tried to make it informative and useful for millions of others who are suffering from the same pain.
The book, of course, has been written on Tapasvi’s life who is preparing for his PhD currently after clearing his NET exam twice in political science, but I wouldn’t call it the biography of Tapasvi alone as it has articles from eminent people working in various fields. It has information over the subject in the form of articles from doctors, teachers, special educators, and a medical specialist. It becomes a resourceful book that can come in handy for anyone who needs more technical information on this subject.
How long did it take you to pen the book?
It took me about a year to complete this book, and I wouldn’t say the journey was an easy one. It was indeed tough to take out time from my banking job and family responsibilities. If it wouldn’t have been for the support of my parents, in-laws and my husband, in particular, I wouldn’t have been able to complete this book. People feel I have had it easy but they haven’t seen the nights when I used to sleep only for a few hours, they haven’t seen the rejections that I faced, those moments of dejection that I cried out upon nor have they experienced the guilt that I went through for not being able to give time to my child while writing this book.
When the lockdown happened, it was not possible for me to meet Tapasvi on a regular basis while writing this book. So we communicated through audio messages. About 25 per cent of Tapasvi’s story has been written through those audio conversations. Interactions were with not just Tapasvi but with his father, mother, and especially his twin brother Manasvi which made the whole journey of writing this book worthwhile. I would specifically want to mention here that the pointers mentioned by Manasvi were of utmost importance while penning down the book.
Why should people read this book?
This book will make people realise how blessed they are in their lives. Reading about Tapasvi’s journey will indeed make them believe in the power of gratefulness and gratitude towards God for making us lead a healthy life. But apart from that, people should pick up this book to get an insight about the lives of People with Disabilities, to make us aware and accept them and to help them grow and heal. Even if one family accepts their child with a disability after reading this book and starts working towards the development of that child, I will feel that my purpose of writing this book has been achieved.
As a society, what do you believe needs to change?
While writing this book I observed a dark part of the society; our society is ready to accept a differently abled boy child but is reluctant to accept a differently abled girl child. At the same time, the blame for giving birth to a child with disability is put on the mother in most of the cases. Also, the safety of these children is something that has to be worked upon as these children cannot defend themselves easily. While researching on this project, I also realised that people in interior areas, especially rural belt still don’t consider cerebral palsy to be a medical condition. They consider it to be a “sin of past lives” and prefer going to witch hunters for improving the condition of the affected person. We need to spread awareness about this particular misconception.
I have already decided upon the topic that I would be writing my next book upon and all I can say right now is that my third book is also a real story. In the future, I would definitely want to take up writing as a full-time profession.