“She is a mere girl child- that too a disabled child! Why do you both fuss about her so much? Anyway, she won’t be able to do anything” was one of the many demeaning comments my parents and I had to hear as a child, hailing from a village in Southern Tamil Nadu.
When I was born I struggled to breathe for an hour. It was in a small Government hospital where, before doctors could intervene, much of the damage was done. Most of the cells in my cerebellum were dead within that critical hour, resulting in a permanent neuro-musculoskeletal disability. My earliest memories are of frequent trips to hospitals, indigenous medical practitioners, quacks, temples, churches, astrologers, yoga centers, acupressure clinics, and whatnot! My parents left no stone unturned to treat me, but no clarity and guidance, the future seemed pretty uncertain.
It was only when I was almost 9 years old, during one of the treatment visits to Chennai, that my parents learned about my exact condition– Cerebral Palsy Ataxia: a neuro-skeletal and muscular condition that limits most of the physical activities and poses several challenges in day-to-living, including vision problems, hearing challenges, balancing, coordination, muscle power, and motor skills. Though it was already too late for early intervention, they made a crucial decision to leave behind their comfortable life in our village, to shift to the city to give me a good education and exposure.
Life, since then, has been a daily discovery of strengths!
My journey here began in a special school where I received physiotherapy every day. During the next two years there, I participated and excelled in various extracurricular activities too! But with my first love always being academics, a special arrangement was made and I gave my Class 3 & 4 exams as an external student at a regular school inside the IIT Madras campus. And based on my high scores, the school readily took me in. From there, with my performance consistently rising, I was able to ace my boards and was also conferred with the “Best Role Model” award in Class 12.
However, with physical challenges mounting by the day, I wasn’t sure if I’d even go to college. With a weak optic nerve, my ophthalmologists bluntly told me that I’d go blind and advised me not to read for long hours. I sank further! Most of the colleges did not have lifts or ramps or accessible restrooms. So it was very challenging to stay motivated amidst the obstacles. Nevertheless, with a supportive family and friends, the mission was finally achieved! I was not only enrolled in a college but again won numerous awards for my talents. I even went on to receive my Master’s degree on stage, subsequently, in the “First Class Outstanding” category, amidst some of the loudest cheers and applause!
After my college, it was time for more complicated challenges in my life, especially in the form of a career! I had to forego several job opportunities due to the lack of wheelchair-accessible buildings, especially places as basic as restrooms.
After a brief stint in a multi-national bank, I landed up my dream job at a leading newspaper as a sub-editor and regularly contributed book reviews, wrote articles, features, and interviews under art, education, cinema, environment, and health. It was exciting to see my bylines in the newspaper! I then moved into a corporate role. For the next seven-plus years, I was a communication specialist at the corporate social responsibility division of a top IT company, a role that helped bring together my passion for communication and community development.
It has been a long fight to go beyond labels, prejudices, and stereotypes. The challenges were unique and persisting in terms of physical, financial, attitudinal, socio-psychological, and emotional. The frustration and pain were overwhelming at times. I’m lucky to have a great family that has taught me the value of positive thinking, smiling, and having a cheerful attitude.
Personally, writing has been the strongest coping tool for me. In 2019, my first book “A Bumblebee’s Balcony” was published. The memoir gives an intimate account of ordinary life fraught with physical and socio-psychological barriers, what it’s like to be the odd one in a bunch, tryst with assistive aids, gender-specific barriers, my chaotic trials on various modes of commuting, insights on workplace diversity, my tumultuous emotional journey, the pursuit of well-being, spirituality and giving back. It’s about dealing with those small moments that threaten to make you want to give up, those minute details of letting go of one’s chains and embracing strength and hope. And choosing happiness despite your circumstances!
I’m grateful for all the challenges in my life as they’ve taught me love, patience, determination, and persistence. My struggles help me to stay grounded, to be empathetic, and to value people in our lives. The struggles help me to reach out to parents of children with disabilities through workshops/seminars and share my learning with other women and youth with challenges, interactions with school students, storytelling and motivational workshops and blogging.
More importantly, my challenges have taught me to love and respect myself first, and the world will do the same! My whole life has been a series of beautiful dreams that came true, and a fulfillment of what my parents dared to dream years ago for their child, “a mere girl child, who couldn’t walk”!”
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